KNEEtalk

The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: upset mom on April 30, 2005, 05:53:05 AM

Title: opinion needed re 13 year old daughter's knee
Post by: upset mom on April 30, 2005, 05:53:05 AM
My daughter has just finished her second week of physical therapy (5 sessions so far).  They are doing exercises to get her to strengthen her muscles, one where they lift her leg up high.  She seems to be in more pain from the therapy and told me she couldn't sleep well last night as her muscles felt strained in the back of her knee.  They say it's patela femura related - the injury - and that she is very tense and stiff when they try to work with her. Would you believe, one therapist said if she wasn't 13 years old he would push her off the table onto the carpet because she's so stiff and tense.  He sort've mumbled it.  Unbelievable!  She tells me she's not tense but in pain.  It now is going on 2 months since the accident at school and she is still limping, on crutches to help her walk correctly.  The OS who sent us to therapy didn't even want her to use crutches - it was almost like they feel she's making this up and saying she's favoring the other leg.  She limps so bad without the crutches.  My question is this - does anyone know how long after starting physical therapy there should be an improvement with the pain and alignment.  The therapists can't answer that - I am going to play out the therapy course and then pursue another OS.  I'm sure I must've wrote this somewhere before but guess I'm getting frustrated after seeing no improvement and it's going on 2 months with her limping.  The therapists sometimes hold her leg and work the knee and then say "look it is aligned now" but as soon as they stop holding it the knee looks off track.  I guess I don't have much faith in this therapy thing.  Once again, sorry to complain but just want to know if any of you guys had more pain after starting therapy.  I've heard it does get worse but I don't see any improvement.  Thanks for listening.

Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: casey2291 on April 30, 2005, 02:43:10 PM
Hi,

I'm sorry to hear that your daughter's knee is not getting any better.  It is my opinion that a good PT will know when therapy is no longer beneficial and when to send a patient back to the doctor.  My problem is totally different than your daughters, but I tried the PT route before my surgery and had six sessions of PT over a three week time period with increased pain before my PT sent me onto an OS.  You could always pursue a second opinon right now even while your daughter is getting PT.  Also, if you don't like the PT that your daughter is working with, you could always try a different PT in the clinic.  Go back with your daughter while she has her sessions and just kinda check out the other PT's and see which one you think is doing a good job with their patients.  I've watched each of the PT's in my clinic and I make the decision as to who I will allow to treat me.  Good luck.  I hope your daughter gets some relief soon. 

Casey  :)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on April 30, 2005, 06:48:02 PM
Hi Casey,

Thanks for writing.  Guess we'll continue the pt route.  Actually we've been to 2 OS's - and they both seem to have said the same thing re doing pt.  Of course, where I live, the doctors all know each other - work at the same hospital (at least these 2) so if I go for a 3rd opinion, I'm going to try and go out of the area if possible.  Thanks again - hope you are feeling alright these days.

Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on May 01, 2005, 09:17:19 PM
My OS and PT told me that I should take whatever pain med was recommended for me an hour prior to PT or right after PT. I took it before hand so I could get more benefit out of the session. I still had some pain when doing the PT. And everyone I talked to while we were exercising said the same thing. Did they tell you that? And when we got done with each session we were told to go home and do the elevate and ice it.

I have found you have to ask every little question. They do their jobs so often in PT and OS that they begin to assume you know what to do. I go by what one of my teachers said.  The only dumb question is the one not asked...
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 04, 2005, 04:42:26 AM
Hi Ron,

Yesterday, Monday 5/2 we went to physical therapy and the therapist made her lie on her stomach and raised her leg, bending the knee.  She was wincing and told him to stop, it hurt.  He applied ice before we left.  When we got in the car she started crying as she was in a lot of pain.  They keep saying she's very tense and has to relax but that's her makeup so to say and she can't relax any more than she's trying to.  Anyhow, I phoned the OS who said stop the phy. therapy and bring her in Friday.  Her knee looks so distorted - it is really misaligned, off to the inner side of the leg.  Patients in the waiting room of therapy looked at her leg and said there is something really wrong.  It is so obvious to anyone who sees it, yet the MRI and xrays showed nothing.  They say she's babying it because of the pain, but this kid wants to run and play and not limp and drag her leg.  She wanted to get involved in cross country running and I know she's not trying to nurse the pain but really wants to walk and look normal again.  Thanks for your advice.  I agree that there is no dumb question.  Believe me I question these therapists and the 2 specialists that she saw so far but am not comfortable with their answers.  So, if Friday's appointment doesn't go well, I will seek a third OS opinion.  It's been 2 months since the accident in gym and no improvement.  Will keep the board posted and I really appreciate all the advice and support we're getting from everyone here:)

Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on May 04, 2005, 08:46:21 AM
I've just been sant back to the doc after PT not being helpful. I tried 3 weeks and made little progress but had lots of pain.

One thing that was good for me was the PT talking about pain on a 1-10 scale. I said my initial injury was about a 9 out of 10 with pain. My PT then said that my exercises should mainly be a 4 or 5 pushing into the 6 to try and get flexion back. She never pushed beyond when I said stop. My PT reckons this just increases tension as you lose trust and get scared of the pain coming suddenly. This helped alot as it stopped me feeling scared of how much pain I was going to feel. I also took pain meds 1 hour before PT and cried sometimes afterwards just with the hopelessness of it. Oh. And the other helpful thing I was advised was that my knee should not ache at all half an hour after finisning doing PT exercises. If it still hurt then, she said I was overdoing it.

Good luck with the appt on friday. My own OS has decided to do a scope to see what's really happening as the PT wasn't doing what it should. My OS was initially quite dismissive of me, as though I wasn't trying hard enough, but I reckon that was just to make me give it my all. When I last saw him, after trying PT, he was really different and helpful. I hope you feel better after Friday. It's nervewracking before an appt as, if you're anything like me, you want to be stong and say all the right things but sometimes end up feeling emotional or a little angry. I feel for you. I'd rether have my own knee hurt than either of my daughters' knees.

You sound like a really caring mum trying to do the best for her daughter. Hope you get some answers soon.

xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: nikki michel on May 04, 2005, 12:12:06 PM
hiya lisa

firstly im sorry to hear about your daughter but i know exactly how she feels, my knees have been bad since i was 12 - im now 20 and dislocated my right patella in january 2005.  :-[

although physio is good -(ive been doing mine now for 7 weeks) the problem might be more internal that what they think, what did she do in the 1st place to cause the injury???

has she had an MRI scan done?? this would show up any problem areas with regards to torn ligaments or cartilage damage, they shouldnt be exercising her knee if they havent done a scan - as this could definitely make it worse!!!!! and also where does she experience the pain in relevance to her knee?? - is it on the inner side of her knee or under the knee cap itself or at the back??

she shouldnt really be applying any unnecessary pressure on her knee unless she has too, so make sure she rests and has her leg elivated on the sofa or on a chair....but you also need to ask the physio what implications this is going to have on her hip and back!! if shes been limping this long without a MRI scan or a full investigation then thats definitely worrying and i would personally speak to a different doctor.

Nikki x
Title: Re: opinion needed re 13 year old daughter's knee
Post by: nikki michel on May 04, 2005, 12:18:19 PM
sorry lisa, nikki again, i just read a follow up comment about her having an MRI scan, when i 1st dislocated my knee i had a scan done 2 weeks after and it showed up clear and everyone thought it was 'laying it on a bit thick' - as we say in london! but I KNEW there was something wrong....

i have since had the plaster cast removed and been in a supportive brace for 3 weeks now and i had a 2nd MRI scan done last wednesday which showed that i have a tear in my cartilage which will require keyhole surgery in a few weeks time.........i would definitely request another MRI or even a bone scan

Nikki x
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 05, 2005, 04:34:13 AM
Hi Sparkle and Nikki,

I couldn't get in to post individually to each of you so am including you both in this post:)  Thanks for writing.  And, Sparkle, I am just like you said - worried I'll forget what I really want to say when at the doctor - maybe I'll write it down before I go in with her Friday.  And, yes, Nikki, her hip is hurting her from limping - there is definitely something wrong.  The doctor and PT say her hip hurts because she is walking wrong, well duh, how can she walk correctly if she's in pain?  Just hope I get some answers on Friday that make sense to me, but if he doesn't make me or her feel any better, I am going to ask for a copy of his records re diagnosis and complete chart and will make an appointment with yet a third OS.  I will try and post a note on Friday evening after the OS appointment.  Thanks for all your support.  This is such a great and caring knee site.  It's good to know that we're not alone although I wish all of you had no pain.  Hope the remainder of the week is happy for you.  Speak to you Friday, hopefully.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: nikki michel on May 05, 2005, 12:00:38 PM
good luck xxxx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 07, 2005, 12:56:08 AM
Hi,

Well here's the scoop - Took her to doctor today as you know.  He asked her how she was feeling and she said "not so good".  She told him her hip hurt and about the pain in her knee.  He asked her to show him where it hurt and she pointed to the middle of her knee.  He said he was going to take some special xrays of her hip and knee but then after walking out of the office to get one of the girls for the xray he suddenly came back and said he wanted to do a bone scan instead to look for small cracks in the bone.  So we are scheduled for a bone scan on May 20th (first date the hospital had) for right hip and to rule out fracture in right knee and see why she is hurting.  When I asked him what does he think, he said "She injured herself really bad" well - duh as we say in the states why didn't he figure that out over a month ago?  I didn't ask for the records yet as I will have the scan done and see the results - plus, the office manager was really "rude" and I told her she was "rude" when I asked her for notes for my daughter's church confirmation retreat which has physical activity and I was trying to get them to schedule an appointment for the scan that fit my job time.  Sorry I got off track talking about that woman (smile) but boy we were glaring at each other:)  Anyhow, what do you know about bone scans?  Do you think that is a good idea?  I saw on this site the name of a doctor in N.Y. but don't know if I can use her health insurance to go out of Pennsylvania.  I'm a little stressed to say the least so bear with my rambling.  I do telemarketing work all day so guess I'm in talk mode or guess type mode right now.

I better sign off before I write a novel:)

Love and hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: John1 on May 07, 2005, 09:23:59 AM
Good luck to your daughter. I'm sorry to hear that you had such a bad experience with the office manager.

It's good that the doctor is finally taking things seriously. I wouldn't be surprised if your daugther had a torn or partially torn ACL. I just read that partial tears are more dificult to diagnose with an MRI. Also, if the patient is tense and in pain, it's hard to perform the manual test to determine if the joint is loose from a tear. And you've said that a boy fell on her leg, which could have easily torn a ligament. Hopefully the bone scan will show something or not and the doctor will be able to come up with a better diagnosis. If not, maybe he knows another doctor that can make the correct diagnosis.

Good luck,
John  :)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on May 07, 2005, 06:03:35 PM
A bone scan will show all sorts of extra stuff.

It seems to be the way these OSs are that they try to say it will all get better with PT and then really start listenening only when the PT doesn't work. A similar thing happened to me and after weeks of PT not working he was like a different person who was willing to listen and take some action. Hope the bone scan gives you some answers. It's frustrating all this waiting around, especially when you don't want her missing school or social activities. I'm a teacher and I hate missing school and social activities too. My OS decidied to do a scope which I have on Monday and I'm hoping for some answers after that.

Good luck to you and your daughter
xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: nikki michel on May 08, 2005, 12:15:33 AM
ahh well at least you have both been taken seriously! - thank god for that!!! she knew something was wrong and its about time these doctors started listening - instead of assuming they 'know what the problem is'.....

bone scans are excellent, unlike an MRI - which shows water, ligaments, muscle etc a bone scan is much more specific to the area thats causing her problems - hopefully this should show up whats causing her pain and they can quickly sort it out - for her sake - believe me i know how she feels!!!! it took my doctors 6 weeks to listen to me when i requested a 2nd MRI scan!

and what is it with doctors receptionist and office managers???!!! in england you cant make an appointment with your local doctor without the nosie receptionist asking you "the reason for the appointment" - gossip queens i tell ya! (sorry im now drifting waayyy of the subject!)

but im glad all's well - or at least is better than before, keep us all posted! give her my love! xxx

Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 08, 2005, 11:34:02 PM
Hi,

Thanks for all your input regarding the bone scan.  Guess I will just have to sit tight and wait till May 20th to see what it shows.  We just got in a little while ago from the Mall.  Her leg is really hurting her.  The doctor never told us if she should put weight on it with the crutches or not to.  I forgot to ask him.  He probably will say she should go by how she feels.  He doesn't say much - he has a monotone personality if you know what I mean - very emotionless.  I just think that if she doesn't move it, it will stiffen up but then if it's an injury I know nothing about if it would get worse to use it - I'm a little confused here.  To those of you in England or U.K., do you celebrate Mother's day as we did today?  In any case, I wish you all and/or your moms a happy mother's day!   And to Jen I couldn't reply to your message so hope you are reading this - yes we are in Pennsylvania but up in the Poconos - a long drive to Philly and other parts.  Besides, I don't think her health insurance covers too much.  In any event, I am just going to wait for the bone scan and then take it from there. 

Hope you all have a great week and thanks again for the messages and support.  Hey, they should have a knee-geek get together and we could all meet:)

Hugs to all of you!
Lisa and Heather   
 

 
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Janet on May 09, 2005, 08:04:32 PM
If it hurts to put weight on the leg, she can still walk with a "normal" motion while on crutches. I was instructed to do this from the first day post-op, even though I was completely non-weight bearing on that leg. It keeps the knee moving in a normal pattern, but doesn't cause the pain that weight-bearing does. People make two mistakes when using crutches. One is to take too big of a step....putting the crutches too far out in front. Keep the crutches in the same range as she would if she was walking. The second is to hold the knee in a bent back position or straight out in front. If there is no reason for keeping the knee in one position, have her practice using the crutches with a walking motion.

Janet
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 10, 2005, 12:54:31 AM
Hi Janet,

Thanks for writing me.  My daughter said it hurts when she trys to put full pressure on her leg when walking.  She really can't bend her leg hardly at all.  She tells me she feels pain right in the middle of the kneecap.  I phoned the doctor after hours today - the only way I figured he would talk to me and I wouldn't have to deal with his receptionists.  Anyhow, they paged him and he phoned (a miracle) and he said she was to put full pressure on her leg when walking and that it wouldn't cause further damage???  I don't know - all I know is that it's 2 months of this and I am about to hit the roof or get thrown out of the doctor's office by the next visit:)  I tell her to walk on it and she starts to cry and I feel bad.  She is tolerating the pain but is definitely in pain.  I just have to keep pushing along until some doctor tells me something that makes sense regarding a diagnosis.  Thanks again for writing.  I agree, by the way, that she has to use her leg so that it doesn't enitirely stiffen up on her as that would not be really good.  Now I'm just waiting for her to take this bone scan - does anyone know what tests there are to show muscle/nerve damage?  Oh well, it's getting late so I'm gonna sign off for now.  Have to get my two teenagers ready for school tomorrow.  Her brother is 14 - between the both of them it's amazing I am sane:) 

Hope Tuesday is a good day for all!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on May 10, 2005, 01:23:04 AM
There are many types of bone scans, and if you know which kind she is having it would be easier to explain. A tagged WBC scan requires her to go in early and have blood drawn and then it is sent to the lab, and the red cells are removed, and then it is reinjected several hours later, and then she is scanned. THE increased uptake signifies injury, infection, necrosis, etc. THere are others where she is injected and comes back in 24 hours  to be scanned. Nerve testing is generally done by emg, where multiple tiny needles are stuck into nerves for response. If you can get the exact names of tests, I will try to explain them to you. As for the pain, did he give her meds, if not, how about the family dr.Nothing that knocks her for a loop, but something that eases the pain, lets her relax, and not be on edge. Good luck, Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 10, 2005, 05:02:12 AM
Hi Theresa,

The bone scan she's going to have on 5/20 is of her hip and knee.  She is to go to the hospital at 9:30 a.m. and they inject her with some nuclear stuff and then she is to go home and drink a lot and come back 3 hours later for the scan which takes about 45 minutes.  So, hopefully, this will either show or not show what's going on.  All I know is that she can't really bend her knee at all without pain and it looks so distorted - off to the inner side of the leg.  Feel like I'm repeating myself from previous posts.  Sorry it hurts to see her limping around on the crutches.  Anyhow, I will keep the board posted when I get the results of the scan, and see what the next step is.  Thanks again for caring and writing!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on May 10, 2005, 08:33:42 AM
Hi sorry to hear she's still in pain, worry and discomfort. THis post may not help but it's worth a shot.

I have been unable to put full weight on the knee now for 7 weeks (had arthroscopy yesterday with good news!) One of the things Janet was saying is what my PT advised. I'd had the crutches set to the wrong height and was leaning when walikng. Once set to the right height, she showed me how to use the crutches so that it didn't affect my gait. That was to put equal weght on the crutches, take small steps and really concentrate at allowing the foot to (very very lightly) roll from heel to toe along the floor to keep as normal a notion as possible. If you do it properly it looks like there's nothing wrong with the knee and that is when your gait is normal.

I don't know if this helps and please don't get hacked off with people giving advice that she just can't do. I know what that feels like but hopefully we'll ALL find something to help her soon. I'm hoping the bone scan will show stuff up.

My OS was surprised when he did my scope. He thought I was developing arthofibrosis, but it turned out all the blockages were where stuff had stuck to the snapped ligament and the cartilege that had broken off. They do get the wrong idea in thier heads sometimes.

xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on May 10, 2005, 01:10:37 PM
Hi;

     Let's try a SLIGHTLY different approach to this problem.  The problem with a lot of doctors, and unfortunately, therapists, is they depend too much on x-rays, MRI's, CT scans, etc.  If nothing shows up, they don't know what to do!  I'm not exactly sure  what type of injury she has and how it occured, but let's assume that the bone scan comes up negative.  Nobody seems to have looked at what her muscles are doing.  Irrespective of what initially occured, she has already developed muscle imbalances, guaranteed!  Are there any muscles that are in contracture, i.e. spasmed?  These will not show up on tests, but if she is having this occur, it will inhibit Range of motion, movement, and affect normal joint balance and patellar tracking.  The great thing about these issues is that they are correctable with the proper work.  Why is it that everybody seems to jump on the surgery bandwagon?  All you are doing is further disrupting the knee!  Find someone who is knowledgeable in manual therapy, muscle balance, trigger point or muscle release techniques, and corrective exercise, have them do a TOTAL BODY kinetic chain evaluation, and work with them!  And if the doctors can't find anything on any of the maging tests, don't settle for anyof those waste of time surgical procedures! 
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on May 10, 2005, 01:30:56 PM
Hi again; just found your original post.  Sounds like she had what are colloquially known as "squinting kneecaps."  This is a sign of what is known as Patellofemoral Syndrome.  It is a tracking problem that can be aggravated by overuse, injury, impact, etc.  She may have had this before the injury....it is NOT normal by any means!  Some of this may have corrected as she grew up; unfortunately, she had the injury.  Based on what you've said, it sounds like she may have a case of femoral anteversion and tibial torsion.  If your doctors or therapists don't know these terms, they're not worth the ink on their degrees!  Apparently the impact caused trauma to muscles or other structures stabilizing the kneecap, and as the trauma weakend the structures, part.  muscles, over time, they finally were not able to overcome her mechanical imbalances and her patella dislocated.  Do what I mentioned in the previous post.  Too bad you're not in Southern California.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 10, 2005, 11:39:54 PM
Hi Sparkle, Hi Trekker - Sparkle thanks for the post.  First I really hope they now know what to do for you since the scope.  These doctors - I tell you can drive you nuts.  Good luck with your doctors.  Supposedly her crutches are at the right height according to the physical therapist we went to before we were told to stop therapy.  We just have to wait for the bone scan and God knows what next.  Trekker - I'm going to mention the terms you wrote - anteversion and tibial torsion and see if they know what they mean.  If he orders her back to therapy after the bone scan, well first I'm going to try and see another doctor up here and then mention what you said Total Body kinetic chain evaluation.  I do agree that surgery is the very last thing I would want for her.  From a lot of the posts on this site I noticed that so many people have more problems after surgery.  She never had any tracking problem growing up.  This all occurred right after the injury - about 1 week after the injury the maltracking was noticed by her.  It definitely was the impact that caused all of this.  You wrote "trauma weakened the structures, part. muscles etc.  What does the abbreviation part. stand for - partial?  You sound very knowledgable about all of this. 

Thanks Sparkle and Trekker for writing.  All this information helps me try and sort things out for myself as these doctors aren't any great help.  Can't wait till they do this bone scan, which I have a feeling will show nothing.  But ya neva know:)  The doctor never mentioned anything re muscles except therapy when we did go mentioned strengthening the muscles which caused her pain sometimes all night into the next day.  That's why we stopped therapy re doctor's orders.  Though I don't have too much faith in this doctor right now.    Speak to you later.  Have to finish cleaning up dinner dishes and then sit down with my kids and watch American Idol:)

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cat on May 11, 2005, 12:08:25 AM
This is an example of 'squinting patella'-.
 (http://www.veggie.org/run/chondromalacia/images-knee-uorg/squint.gif)

cat
Title: Re: opinion needed re 13 year old daughter's knee
Post by: jillo on May 11, 2005, 02:20:49 AM
If she's in that much pain I wouldn't make her walk on it.  Teenagers are pretty tough and I can't imagine sh'es making it up.  My personal experience has been that doctors do not give nearly enough credence to a patient who feel that walking on an injury is NOT a good thing and that there is something very wrong.  Find another doctor, at least for a second opinon.  Maybe try a trauma specialist?
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 11, 2005, 04:41:28 AM
Hi Cat,

Gosh the knee facing me in the picture you sent on the right (guess it's the left knee really) looks very similar to my daughter's.  Just curious what do they do if it's squinting patella?  Thanks for the picture!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 11, 2005, 04:47:10 AM
Hi Jillo,

I agree teenagers are very tough.  I know she's not making up the pain.  I tell her to try and walk on it and then I say don't walk on it if it hurts too bad.  I don't know what to tell the kid.  She is on the verge of tears so much as she is getting tired of having to walk around in school on the crutches and wants so much to wear short skirts for the summer.  I just keep telling her it will get better but it's going to take time until we figure out the problem.  Wish the doctors could walk in her shoes for a mile and see how they feel!  And I am definitely going for another opinion and another etc. until something makes sense to me.
Thanks for your concern.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on May 11, 2005, 12:00:25 PM
CAT, thanks for posting the picture so "Upset Mom" can see what I'm talking about.  Upset Mom, part. means particularly (muscles).  Sorry about that. The issues your daughter has are reversible with the proper therapy.  Typically people may be able to "ride out"  some of these types of issues early in life until trauma, certain activities, etc. create a stress that magnifies the imbalances.  There is a good chance I could alleviate a good deal of your daughter's pain, if there are no imageable injuries, within 5-10 minutes; however, dealing with the imbalances that predisposed her to this would take longer.  As I said, however, it IS reversible.  Try to find someone who can release/relax her IT band; then take a look at whether her Rectus Femoris is hypertonic or too tight.  That might work in relieving a lot of her pain.  By the way, that condition your doctor mentioned that she might have...never heard of it.  That doesn't mean it doesn't exist, but.....?  Maybe someone else can tell me what it is.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 11, 2005, 10:07:19 PM
Hi Trekker,

I think I spelled the condition wrong - probably still will - he said patella femoral syndrome.  Anyhow, wish you lived next door so you could alleviate her pain:)  And it is definitely encouraging to know that it IS reversible.  I hope an pray you are right.  My guess which is completely uneducated in this area is that they most likely will send her back to physical therapy.  If they do I will write down your comments and mention them.  Thanks for writing.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on May 15, 2005, 04:18:24 PM
hi my name is morgan and im 14 almost 15 and i went to the doctor to and he told me that physical therepy would help and i would be better in 3 to 4 weeks but when i went (been going for 2 weeks) 4 seessions and they told me that i need to bend it and that i was tensed up but im not it is that i am in alot of pain. so jsut to let you know im in the same situation as your daughter and im here if she ever needs to talk about it cause i think im going through the same thing

best wishes
-morgan-
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cat on May 15, 2005, 08:38:39 PM
Lisa,
I have the same 'squinting patella' as the picture.BTW, here's where I obtained the pic-
http://www.veggie.org/run/chondromalacia/

  The condition where one's femur (thigh bone) is rotated inward and the tibia (lower leg bone) is rotated outward is called miserable malalignment. Foot pronation often coexists with this. Here' another link about this problem-
http://www.physsportsmed.com/issues/1996/07_96/arendt.htm

Treatment should always start with a correct diagnosis and then appropriate therapy to address the issues found. Analgesics, orthodics, bracing, stretching for flexibility deficits, and quadriceps strenghtening may all be a part of a conservative treatment plan.

Now having said that, it took 7 docs to diagnose my malalignment issues (which I now think are pretty obvious). Only 2 out of 7 ever examined me standing. So read up and do your homework. You need to be an informed advocate for you daughter. :)

Here's one of my fav links. It even has a little animation of a TTT which is often used if a conservative treatment plan fails.
 http://www.kneehippain.com/patient/for_patients.html

There is also a procedure called a derotational osteotomy. Haven't found any really good info on that but here's one link-
http://www.medscape.com/viewarticle/487789_2

Good luck to you and your daughter. And if you have any more Qs for someone who has 'been there done that' just holler. ;D

cat




Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 17, 2005, 12:56:41 AM
Hi Morgan,

This is Heather, not my upset mom.  They told me that I was tense in physical therapy and that I was the most tense person they ever had.  They keep on telling me relax.  I agree that they do not feel the same pain as we do so they don't know that it's not as easy as they say.  They told me that I'm rotating in my hip and to hold my knee as far over to normal as I can.  I can't do that!  Sometimes they tell you things that you just can't do.  I stopped physical therapy for now.  They're sending me for a bone scan Friday.  Hopefully they will find what's wrong or my  mom is going to keep taking me to doctors until someone figures out what's wrong.  I hope that you feel better and get better soon.  Good luck with physical therapy.  I'm going to be 14 in June.

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 17, 2005, 01:07:47 AM
Hi Cat,

Thanks for all those websites.  I will definitely check them out!  I agree that I have to be well informed.  It's just a lot of information to process in my brain and to try and remember when I see the doctors.  I feel like I want to print things out and read it to them:)  Looks like we're going to be going to quite a few doctors as you did.  But first I'm going to see what this bone scan test shows.  Friday is the appointment and Monday 5/23 we go back to Doctor #2 and see what the results show.  I'm going to go with my motherly instincts and my gut until I find someone who makes me feel comfortable with their diagnosis.  So far, that hasn't happened.  Will keep the board posted to new developments.  Her knee looks awful - so indented to the inner side of her leg and she says it hurts and the iceing doesn't help.  I guess the main thing is that we are going forward and not stopping until we get an answer that makes sense.  Hope you have a happy Tuesday. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on May 17, 2005, 01:41:40 AM
hey Heather its good to hear from you....so i went to the ciropractor (dont know how to spell that) and he said that my knee the normal way your knee is supposed to bend...the top part of my leg is turned completely around so he popped it back into place and told me that i have to go back tomorrow and that i needed to go to PT right after i left and im sorry but it hurt terribly and i went to PT and they said that i need to bend it and that that is the only way that it is ever going to get better but the ciropractor told me that he was going to have to pop it back everyday this week because its going to go back to the spot that its not supposed to be in....so i hope that your bone scan goes ok... i would like to talk to you more cause its kinda lonely without sports all my friends are always gone to practices and everything....so if you have an email let me know
good luck with everything
-morgan-
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Studb on May 17, 2005, 02:02:09 AM
Hi there.  I've a little experience with knees and I agree with you that something's not right.  I missed hearing how she origionally did the injury.  Does she complain of ther knee giving way underneath her or has there been any episodes of locking? (unable to bend or strighten knee?)  How swolen is her knee?  Did it swell up immediatly following the injury or did it take a day or so to come up? ???
Sorry so many questions but it's difficult to get a picture without seeing the knee.  (tha's tough 'cos i'm in australia!!) 
Title: Re: opinion needed re 13 year old daughter's knee
Post by: jillo on May 17, 2005, 02:53:18 PM
I developed that whole "hip to the outside, knee cap turned in, crooked leg" thing after dislocating my patella and it ultimately turned out to be torn meniscus that didn't allow me to stand straight on the leg so I was turning it to the inside to avoid the torn bit.  I couldn't bend it properly either, but it didn't lock.   My PT figured it out immediately, but it didn't show up on MRI so the first three OS I saw didn't think it was torn.  The fourth (!) one agreed with the PT right away, removed the torn bit and some scar tissue and the leg pretty much popped back to straight, although it is very weak and I have to work hard on walking normally and on stretching all the muscles out again.  Something to think about- tears don't always show up.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 17, 2005, 11:27:18 PM
Hi Studb or Stu?

She originally injured her knee in gym - a boy fell on her leg after they both fell down.  She didn't go to the school nurse right away.  It didn't look very swollen at first.  After around 1 week her knee shifted off to the inner side of her leg.  She stands up with crutches and can walk without crutches but with a big limp.  She cannot bend her knee very much at all without having bad pain.  I have a digital camcorder that I'm just learning to use.  Maybe I will have a friend of ours try and take a still picture of her leg and post it on the site if that's possible.  Thanks for writing. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 17, 2005, 11:33:49 PM
Hi Jillo,

That is very interesting that tears don't always show up.  The PT she saw was one the OS referred her to.  Wondering if going to a PT on our own would be better.  Do you think that the bone scan can show a torn meniscus?  Guess I have to wait until we see the doctor for the results of the bone scan on May 23rd.  Thanks for writing.  The more I know about knee problems helps, except the more I learn it seems to get harder to process all this info to tell doctors:)  But I have faith that eventually, hopefully real soon, this whole mess will get resolved.  I have to think positive!  Keep in touch.  Hope you are feeling alright.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: jillo on May 18, 2005, 02:22:08 AM
My OS told me that only about 85% of tears show up.  I had a huge tear and two very good OS's I saw for a second opinion told me that they didn't think I had a tear, that they thought I had some kind of vaguely defined alignment problem.  My actual surgeon thought I did have a tear based on symptoms as nothing was visible on the scans and so did my PT and they were right.  I, personally, was pretty damn sure I had a tear as I could feel it moving around in there!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 19, 2005, 01:48:00 AM
Hi Heather,

Me and my daughter, Heather, were laughing a lot when we saw your comment on the name "Heather".  Yep, maybe we should do a name change.  She has always been a calamity jane.  I almost started to write a journal on all the times she injured herself (not counting the knee lol).   At least, this evening things have calmed down.  I came home from work this afternoon to find my 14 year old son in the kitchen with Heather whose crutches were on the floor and she was sitting and crying in the kitchen chair.  Said her knee was killing her, felt like her whole knee was pulling she said with huge shocks and stabbing.  Anyhow the OS wasn't in so I took her to her regular doctor who said maybe she should have her knee tapped for fluid and then suggested in a low voice to look for another OS and then said maybe it's arthritis DUH?  I told him this happened right after the incident in gym at school.  These doctors get me crazy.  I was in tears with Heather.  Feel so helpless.  Anyhow will see how the bone scan goes - don't have much hope with that but I know we are going to go to another OS as soon as I get the results, unless the OS we are seeing says something logical.

Thanks again for your encouraging lol email.  I viewed your pictures.  You and Scott make a very cute couple.  Enjoyed looking at the other pics too - your poor knee - gosh has it been all these years since it first started - that's a little scary for me to think of but it's good to know we're not alone:)

Take care!
Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on May 19, 2005, 05:33:52 AM
Lisa,

A lot of doctors won't give pain meds to teens, but if you control them, I think they could be helpful.  She's obviously in agony, and THERE IS NO REASON for this to happen.  Get her some relief.  Demand it--you will have to.  I was in the hospital in the cardiac ICU with a fractured sternum, broken collarbone, and cardiac contusion following a car accident, and those IDIOTS wouldn't give me anything for pain.  Said they were worried about addiction.  There were morons--I had broken the thickest bone in my body, for crying out loud.  My mom cornered the docs and forced them to admit that if she were in my position in the ICU she'd have been on a morphine drip!  She got them to finally consent to *codeine,* which was pitifully inadequate. 

Anyway, my point is that she shouldn't be suffering.  What is your daughter taking for the pain?

Heather (yep, another one).
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on May 19, 2005, 02:02:05 PM
Lisa,

Arthritis, huh?!  That's a good one!!!  Let's try something if your game;  I wouldn't normally try to suggest this without seeing the person except that your daughter is in quite a bit of pain, so maybe it'll help relieve some.  Have her lie on her stomach with her legs straight.  Then have her slowly bend her knee as though she is curling her leg.  When her knee is at 90 degrees, have her lift her leg about an inch off the ground.  See if she feels any tightness in her butt.  Have her poke the muscle with her finger if she doesn't until she gets the sensation of it tightening.  Hold it for about 20 seconds.  Repeat that 2 more times.  Then have her stand up and see if the knee feels better.  If the knee hurts to bend at the beginning of the movement, have her try to lift the leg up while straight and then bend it and hold.  Let me know what happens.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: jillo on May 19, 2005, 02:13:46 PM
You definetely need a new doctor, your daughter shouldn't be in that kind of pain and be made to wait.  Maybe you could take her to the ER or to a pediatrician who can push it through for you and insist that the orthos docs treat her as they would an adult who has had a severe trauma.  I can't see any reason for refusing to treat her pain under the circumstances.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on May 19, 2005, 02:22:39 PM
Is your daughter seeing a pediatric OS?  Call the nearest children's hosptial for a referral.  At 13, she is not done growing, and should not be treated as an adult.  But she SHOULD BE TREATED.  My knee troubles started when I was 12, and no one would do anything for me till I was 16 (partly my mom's fault, not all the doctors).  But the longer an injury sits without the proper treatment, the greater the odds it can cause more damage down the road.  Bravo for believing in your daughter, and fighting the doctors.  She's lucky. 

(And my middle name is Heather.  Maybe that's why I have knee damage...)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 20, 2005, 01:23:40 AM
Hi Heather,

The pediatrician gave us a prescription for tylenol with codeine.  Heather didn't want to take it.  They also gave her alleve prescription (Naiproxin - spelling).  She had taken a couple of those but said it really didn't help.  She seems to want to deal with the pain but after reading all the recent posts with me said she will take something.  I'm going to give her the alleve tonight as I didn't fill the codeine yet.  I agree with you that the doctors can be morons.   Now she tells me it feels like her knee is being pulled like a piece of cloth (she described it like a tug of war) and still has the stabbing pains, etc. sometimes worse than at other times. She also said she feels like something is moving in there.  Then again, she has been reading some posts with me and I sometimes wonder about the "power of suggestion" if you know what I mean.  But I know the kid is definitely suffering and she is so brave!   I spoke to my job today about getting her on my health insurance which is Aetna but first have to have her removed from BlueChip insurance for kids.  Thanks for writing.  I'll keep you posted.  By the way, how is your knee doing these days?
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 20, 2005, 01:33:12 AM
Hi Trekker,

When she was in PT they had her lie on the table on her stomach and had her bend her knee, which hurt her so much.  That was the last time we were at therapy and stopped therapy after that as she was crying so badly when we got in my car to go home.  So I am a little skeptical to try it myself at home because of how it made her feel in therapy.  She was trying to show me some marks on her leg, near her knee.  She thinks they look purple in color - though I did see something, it wasn't alarming to me.  I am beginning to think she has a tear and that it didn't show up on any tests.  I hope I'm wrong.  I don't know what to think anymore.  May I ask you what do you think it will show if she did the exercise you suggested.  It seemed like they were trying to strengthen her muscles at PT.  Unfortunately her pain level stopped her from doing PT and that's when the doctor said stop the PT.  I just hope that something soon helps this kid.

Thanks for writing!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 20, 2005, 01:37:36 AM
Hi Jillo,

Thanks for writing.  I believe the OS she is seeing does see a lot of kids.  He is a team doctor for one of the High Schools up here, which really doesn't mean anything.  The first OS we saw was team doctor too and he said her knee always looked like this and I didn't notice.  I think these doctors are only good for putting casts on broken arms.  She is going to take a pain killer tonight, if it kills me lol.

Speak to you later.  Thanks again for caring!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 20, 2005, 01:45:03 AM
Hi Blackbelt (so Heather is your middle name (smile) :

Thanks for writing.  I agree that the longer nothing is done, the worse it is.  That's why I am stressing.  I don't know about the medical profession any more!  Thanks for your encouraging words.  I wish I could make all her pain go away.  Think I need to pray a whole lot harder!  The OS does see kids - if you read the other post I just wrote.  Oh well, onward as they say!

Hugs to you and to Heather M. who I forgot to give a hug -sorry!  Typing so fast I forgot.

My daughter Heather said all Heathers should change their names lol.  I actually think it's a pretty name but gosh think it's also an accident prone name (big smile).
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on May 20, 2005, 03:47:13 AM
I sure hope your daughter gets some relief from the pain med!!!!

 Its heart breaking to hear that someone  so young is going through so much!!! My 6 yr old son had someone fall on his knee this winter and I was lucky to have one of the best OS (mine) he also see's kids. He listens to what we have to say and if you hurt he helps you!!! It turned out my son had a strained MCL and a bone bruise. He still has pain to this day and I cry for him!! The OS did give us pain med for him when he hurts so that is a bit of relief.

My thoughts and prayers are with you guys!!! Hang in there and see as many doctors as it takes to get relief!!!

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 20, 2005, 05:01:10 AM
Hi Paulette,

Thanks for writing.  May I asked how they found out that your son had a strained MCL and bone bruise?  I appreciate your concern and heartfelt words.  I have to try and stay strong for my daughter and not let her see me cry when she's crying.  One of us has to stay strong and guess that's me.  I hope and pray we find a good doctor who will help her.  I hope your son's knee will be alright as he grows.  It's terrible how one quick injury can do so much harm.  Have to take one day at a time and try and stay as positive as I can, though it's hard when I look at her knee and watch her hobble around on the crutches.  There's an old saying that is so true - "There but for the grace of God, go I". You never know when things are going to happen.  We'll get through this somehow.  This is a wonderful site with such caring and sharing people.  My heart goes out to everyone who posts here.  I know there are many worse conditions than knee problems but right now this is my biggest dilema.  My thoughts and prayers are with everyone here.  It's bad enough when injuries happen but when it happens to a child it seems even worse.

Take care and thanks again!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: tanyasparks on May 20, 2005, 05:07:17 AM
Upset mom and daughter,

Just wanted to send prayers and good luck wishes for tomorrow.  I have been following this thread even though I have not posted in it before.  I hope and pray that God would just allow whatever is wrong to just pop out on that bone scan and allow her quick healing. 

Tanya "Sparky"
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on May 20, 2005, 06:30:24 AM
good luck with the bone scan heather!!!!!:) ill be thinking of ya
-mo-  ;D :D
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on May 20, 2005, 06:42:52 AM
Lisa,

One important thing you need to get across to Heather (and it will be hard, as we Heathers are stubborn!) is that when you body has pain that is not addressed or alleviated, the nerves in the affected area can actually keep dialing up the levels again and again--until the brain and body involved finally do something to stop the pain (like resting, icing, using crutches, etc).  That's why it's important to take the medication, and to give it a chance to work.  Naprosyn is a GREAT anti-inflammatory, and it should really help her--but she has to give it a couple of days, and remove the other aggravating factors (like walking and inappropriate PT where they tug on her leg!).  So I know she's reluctant to take the meds, but the doctor prescribed them for a reason.  I used to be very reluctant as well...I'd go all day gritting my teeth against the pain as it got worse and worse...then, when it was out of control, I'd crumple up and take the meds.  Well OF COURSE they didn't work at that time!  That's not how the meds are supposed to be taken--you have to take them before the pain levels get out of control, because they work to kind of intercept things before they get too bad.  Once I finally accepted that I had to take the meds and took them as prescribed, I found I was getting TWICE the relief from only HALF the dosage--all from just taking them correctly for once.  So while we all want to avoid taking meds, sometimes they are necessary, especially if she is crying in pain.  When you have that level of agony, the muscles around the joint just kind of draw up and go into protective mode to keep the joint from more damage.  That's bad!  It makes everything tight and stiff, keeps the knee mechanics from working right, and makes your daughter miserable.  Constant, chronic pain also alters the balance of chemicals in the brain, which can affect sleep, lead to depression, increase sensitivity to pain, and even perpetuate the nerves sending pain messages long after it is appropriate.

So yes, you need to get the right tests and the right doctors and the right PT's...but your daughter also has to do her part and fight the good fight.  Take the anti-inflams.  Ask the pharmacist or doctor if it's appropriate to add Tylenol (but don't do that with the codeine script, as it likely has acetaminophen already--check with the pharmacist always!).  And fill that prescription.  Have her take it when she knows she has to be on her feet and/or before PT.  Keep the crutches around, because if she's having that much pain she should NOT be walking on the limb.  Let the pain be her guide, and yet don't be afraid to take the medications to address it as well.  The meds shouldn't be used to mask pain--like she wants to go to the mall or something so takes some painkillers...that's counter-productive.  But so is sitting on the floor crying with pain.  The stress and drain of the pain will really take a toll on her brain chemistry and hormones--which are already dicey at her age.  So if she's not getting relief, go to the GP again and discuss what combo of over the counter and prescription meds can help her.  And ask the OS/PT what modalities can be used--ultrasound, e-stim, ultrasound with cortisone cream (phonophoresis), gentle tissue manipulation by a trained professional (someone trained in myo-fascial release, not just a massage therapist), patellar taping, bracing, ACE wraps, and so forth.  Ask the OS about LIDODERM PATCHES--they can likely bring about a significant reduction in her pain levels within a few minutes of putting them on--they are completely non-narcotic, non-pill-based lifesavers for a lot of us--you just cut a square out of the main patch and apply it directly to the knee, where it can stay for as long as 12 hours.  As is a home TENS unit, esp. one that has an e-stim or strengthening mode.  Mine is a BMR Neurotech, and when the pain is out of control I put that on with some ice and sit in the recliner.  It really helps.

These are just a few additional ideas for pain-relieving modalities.  But she should also take advantage of the pain relief she's already been offered--the GP wouldn't have given it to her if she hadn't thought it was for the best.  Maybe she can just take the codeine at night when she's done with her homework and can just relax and focus on herself for awhile?  Believe me, nothing is worse than the stress of school and then having constant pain.  When I broke my sternum, I was a college-bound junior who was three weeks out from AP exams.  I did it all on ibuprophen, and I really don't recommend it.  It was one of the worst times of my entire life...and because I didn't have appropriate pain control, I was constantly hunched over like a vulture to take the stress off my shoulder and fractured sternum (breastbone).  So I healed that way, hunched over, with adhesions forming and my muscles taking on a new shape and position.  It is something I still struggle with today, over 18 years later!!

Hope Heather feels better soon.  Keep pushing the doctors, and don't ever doubt her.  Her pain may be getting worse because it's not being dealt with, not because she's reading stuff on the web!  Remember, she's only on the web because she's in pain....

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on May 20, 2005, 08:09:18 AM
I read on an earlier post that the PT said your daughter was the most tense person he'd seen. Is that right?

I have had unexplained flexion problems for 9 weeks since the injury and got a new diagnosis testerday. My os says my quads and hamstrings are firing together(not supposed to) as a response to pain and the injury. Th hamstrings should work to flex the knee while the quads relax and when straightening it should be the quads that work while the hamstrings relax. The PT's didn't get this so when I go on Sat they need to call him for the explanation so they can treat me correctly. My Os says it's quite hard to diagnose because the muscle contraction is usually where the swelling is and hard to see.

Just a thought but the knee muscles hold the patella and with all the pain she's having, maybe Heather's brain has done what mine did and set up a safety mechanism for the knee. It would explain the tension and the need for pain relief. Perhaps you could ask about it? My OS says it's very unusual but he has seen it before. He was only happy to make the diagnosis after doing a scope and seeing how my knee behaved when the muscles were inactive under anaesthetic. He says he did NOT do MUA because once the muscles relaxed I had full and easy flexion.

Heather has different knees to me, I know, but what I'm saying ties in a little with Trekker? in an earlier post about looking at the muscles.

Good luck with everything. You need support just like Heather does. I've said it before but watching your child in pain is one of the hardest things to suffer. Hang in there for Heather's sake. Maybe she'll grow up to be  PT or a knee surgeon!!!

xx

Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on May 20, 2005, 12:11:49 PM
Lisa,

Sparkle999 and Heather M. both brought up points that tie in with what I think may be a possible cause of your daughter's knee pain.  Sparkle999 is right about her condition tying in with what I was talking about.  There is a neural phenomena known as "reciprocal inhibition"; simply put, if one muscle on one side of a joint contracts, a neural signal is sent to the opposite muscles telling them to relax; this is what allows us to move.  My guess is that your daughter's Rectus Femoris is in spasm, and is not responding to these signals.  When this muscle is too tight or spasms, a condition known as patella alta may occur, where the patella is pulled up in the trochanteric groove.  This can lead to subluxation ( dislocation ) of the patella.  Whereas I think your PT had her flex her knee while the upper leg is just laying on the surface, I am suggesting that she contract her glutes and hamstrings before bending the knee.  If it hurts, try having her keep the leg straight by raising it just slightly off the floor.  What I am trying to do is inhibit (relax) the R. Femoris by contracting the muscles with the opposite action to it while trying to put minimal stress on the R. Femoris.  I have found that the best way torelax muscles is similar to what Heather M. mentions in terms of myofascial release, and that is active release or trigger point release.  The next best is a form of PNF, or contract- relax stretching.  What I describe is not as effective, but simpler to apply, and may help in relieving some of her plain. Give it a try.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 21, 2005, 04:48:36 AM
Hi Tanya,

Thanks for the prayers!  We will know the results of the bone scan on Monday.  My friend took her for the scan as I had to work.  Heather said after they were looking at the scan on the monitor they had her take xrays of her hips to compare the right hip to the left hip.  She also has pain in her hip which could be from the way she has been limping around.  I hope and pray the scan shows something.  Can't wait till Monday to hear the results.  Will keep the  board posted.  Thanks again - there is definitely power in prayer.  It has sustained me through many a hard time in my life for sure.  Take care and thanks for caring!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 21, 2005, 05:18:50 AM
Hi Heather,

She didn't want to take anything before going to sleep tonight.  I am going to suggest she takes the Naproxin tomorrow.  The tylenol is tylenol with codeine.  I don't know to tell her to keep her foot off the ground when using the crutches or to put pressure as tolerated on it (that's what the OS and PT had said, but you know my faith in them).  They have me so confused!  When she was in PT they said she should try walking on the leg and the OS said the same.  I think she should stay off of it until we figure out what's going on.  God knows when that will be!  Hopefully, the scan she took today will light up the problem.  To top things off I now have a problem with trying to get her on my health insurance at work.  She currently has BlueChip which is State Health Insurance for children.  My job can put her on my insurance June 1st but claim they first need proof that she is not on the BlueChip insurance.  I called BlueChip and they said I had to request this in writing and then they will mail me a letter saying she's discontinued.  But they couldn't guarantee when that letter would arrive.  Being it comes from the State it could go past June 1st, in which case my job couldn't enroll her until July 1st and that would leave her with no health insurance if the other stops.  This makes no sense to me at all.  It's one problem after another so it seems.  I'm going to speak to my job on Monday and see if anything can be done, but the telemarketing firm I work for has strange policies to say the least about the job!  I am going to mention the LIDODERM PATCHES you mentioned to the OS on Monday when we go in for the results.

I feel for you for the struggles you've been through for so many years, but you sound like a strong survivor!  I printed out your post so I can write down some notes for the doctors.

Thanks so much for all your advice.  They say knowledge is power.  The more informed we become, the more we can sort out what is the best thing to do.  And yes, the hormones are really "dicey" in the teenage years.  You can't imagine how it is dealing with two teenagers - one 13 and one 14 and added together with all this stress.  It's a miracle I'm still sane, or am I?  Just kidding.  Right now it is after midnight and I am really tired from the whole day or I'd write more.  Will post Monday night, hopefully and prayerfully this bone scan and xrays will come up with something.  But knowing myself I probably will go for another opinion.

Hope you have a good weekend - as pain free as possible.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 21, 2005, 05:33:11 AM
Hi Sparkle,

Thanks for writing.  The doctor did say, I believe, that she set up a safety mechanism by saying she was favoring using the other leg and thus walking with a limp to avoid the pain.  As a result her hip has been hurting her as well as her knee.  Probably why they scanned the hip also.  I think she definitely has to strengthen her muscles and we will deal with that after I hear what the OS says on Monday, mull it over and go with my motherly instincts (my gut feelings) regarding his diagnosis.  Thank you for all your support.  I'm really exhausted right now mentally and physically so am going to be brief.

Good luck with "your" knee and with the PT.  Hope you get more relief each day.  And on the light side, don't think she would want to be a PT or knee surgeon (smile) - she wants to be an actress - she'll certainly have lots of experiences to apply to that field:)

Will keep you informed Monday as to the results.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 21, 2005, 05:48:56 AM
Trekker,

Hi - When you say have her keep the knee straight by raising it just slightly off the floor, I'm a little confused here - should she be lieing on her stomach when she does this?  Or standing up?  I am not an expert by any means in PT and don't want to hurt her in any way.  Wish I could take a course in PT - seriously.  I am going to mention the terms you wrote - reciprocal inhibition and rectus femoris  to the doctors.  It sounds like this is what she is experiencing.  Do you think she could've done any serious damage to her hip in these past two months, as it is beginning to get more painful?  I'll post and let you know what the OS says on Monday and would appreciate your opinion as well as anyone else on this board.  This OS has a very low key personality and it's like I have to pull words out of his mouth, so hopefully he will make some sense to me.  Sometimes I think they are afraid of malpractice suits.  We live in PA and there has been an exodus of doctors here due to so many lawsuits.  I really hope I can get her on other insurance before too long.

Thanks again for all your advice.  You sound so knowledgable - are you a PT?  I don't remember if you mentioned that or not.

Take care and have a good weekend!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 21, 2005, 05:53:07 AM
Hi Morgan (Mo),

It's Heather's mom - she's sleeping as I'm reading this at almost 1 a.m.  I'll tell her you posted and wished her luck. She'll probably write to you tomorrow.  Hope you feel better.  Think positive because you will definitely get better sooner than you think!  Hang in there - you're not alone!

Hugs,
Lisa

Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on May 21, 2005, 10:15:25 AM
Lisa,

The leg raise should be done when she's lying on her stomach.  It shouldn't hurt her knees, since initially she is not necessarily bending her knee, but at this point who knows; it shouldn't cause any more harm.  This will also hellp restrengthen some of the hip muscles that have become weak; she also probably has muscle coordination problems, with subsequent improper mechanics in her hip when she walks, thus leading to pain.  This should all be reversible; I do it all the time with my clients.  The one concern is she is still growing, so you don't want to imprint bad movement patterns.  She will eventually need these muscles retrained not only strength-wise but co-ordination wise , same as her knee muscles.  By the way, keep in mind that both the Rectus Femoris and Hamstrings cross the hip joint, as well as the knee.

As for your question, I am actually an Exercise Physiologist  and certified Clinical Exercise Specialist who has worked with various injuries and joint problems for many years.  I tend to take a little different approach than most PT's; unfortunately some PT's tend to use a "cook-book" approach, so when things don't go according to protocol, they're kind of thrown for a loop. I seem to get a lot of
 people for whom PT has failed.  Maybe they stop learning when they leave school...who knows?  I try not to work with blinders on.  Anyway, I'll be interested in the results of the  test.  Good luck.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 22, 2005, 05:38:00 AM
Trekker,

Thanks for explaining the exercise to me.  I will see if she's game to try it.  I mentioned it to her and she seemed reluctant and said - "well they're probably going to send me back to PT anyhow".  I don't want to push her.  I keep asking her if she wants something for pain and she keeps saying "No".  Saturday evening at church she said her whole leg was like it was asleep for a while.  She's been telling me this for weeks now and we did mention it to the OS who had no reply.  Well Monday is almost here and I am anxious for the results of the scan.  I am going to pick up copies of the report of the scan and films on Wednesday at the hospital where she took it.  I hope we have more of an idea about what's going on by then.  Though I do believe that the knee dislocated from her guarding it, though she tends to disagree with me.  Will keep you posted.  Thanks again for all your advice and support.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: tanyasparks on May 23, 2005, 06:42:11 AM
Hey Lisa and Heather.

I definately feel your pain.  I blew my left knee out when I was in highschool.  The OS wasn't very pleasant to say the least.  He didn't want to even touch me at all.  My knee hurt for weeks until I just couldn't stand it anymore.  Finally, my father took a day off from work to take me.  The OS was a different person when he saw my dad come in the room.  That very day he scheduled my knee surgery and ened up doing a LR.  Right now, I'm going back and forth with my OS and PT about my diagnoses.  There is no doubt that I have torn my MCL.  That is the only thing that they agree on.  I still have very little ROM in my right knee and I have a considerable amount of crunching in my knee.  My OS said that there was nothing wrong except the MCL sprain.  The Physical Therapist says that he is afraid that I have a cartilage tear.  All I know is that it hurts.  And I can definately understand the lack of compassion.  My current OS is not at all compassionate.  He acts like I'm over reacting to the pain.  He isn't the one in pain.  He doesn't know how I feel!!  He makes me crazy.  So, I can imagine a little bit of what you are going through.  Hope everything is answered tomorrow!!  Good Luck and I'm sending prayers to both of you!!

Tanya
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 24, 2005, 01:03:51 AM
Hi everyone,

First let me say thank you to Tanya for sharing our pain and to all of you for your loving support and concern and sharing in our pain also.  OK - Went to the OS after work today.  I had a friend in the room with me.  He came in and said that the bone scan looked alright.  I then said to him that they had taken xrays of her hip while at the bone scan.  He looked surprised and then looked inside the folder and pulled out the xrays - Duh?  He put the xrays up on the monitor and saw something circled with a ?.  Then he took out the films of the bone scan and then said it looks like she might have chipped her hip on the growth plate.  To be honest with you I am now a little confused about what he said - wish I had a tape recorder - I was so anxious that some words flew past me.  He said this wouldn't affect her growth re getting taller.  He then said he wants us to go take another MRI but this time of the Hip to confirm what he thinks.  I asked him if he still considers this to be patella femoral syndrome and he said - not really - I then asked him if damage to the hip could've caused the knee to look so deformed - and he said she is favoring the other leg and I asked him if correct PT was applied would the knee straighten out and he said "Yes".  He told her to use crutches, which she has been - another duh??  I also asked him about kinetic chain evaluation, as Trekker had mentioned, and he said there are different types of kinetic chain evaluations, at which point I didn't go on as I am not that educated to get into a discussion on that.  Anyhow, so we are off to an MRI this Thursday and then back to the doctor on June 7th - but I should have a copy of the CD of the hip MRI with evaluation on Thursday to bring to the doctor, which I will burn a copy and make a copy of the eval. and let you all know.  I am so confused right now - he told her when she walks to only tap her toe down.  I just want to thank all of you for your prayers and concern and welcome any input you could give me on this visit today.  On a different note, I pulled the doctor to the side and told him about that woman - you remember the nasty office manager - and he just nodded his head and had me describe her.  Hope that took care of that lol.

Speak to you all later.  Thanks so much for sharing and caring.  Your support means more than you can ever know.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: tanyasparks on May 24, 2005, 04:41:54 AM
Heather and Lisa,

I'm so glad that the answers are starting to come.  Hopefully, this will get her on her road to recovery.  I have been thinking and praying for you both all day today.  I was waiting for you to post.  I was anxious to find out how everything went.  I'm so glad that maybe finally they will be able to do something with her pain.  I hope everything works out. 

Hugs
Tanya
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 25, 2005, 12:38:56 AM
Dear Tanya,

Thanks for all your prayers.  Please keep them coming.  I hope we are moving in the right direction.  It makes sense that the hip would dislocate the knee but I think the doctor should've been looking for this in the beginning.  At any rate, maybe this will be an answer to prayer.  We'll know on Thursday after the MRI of the hip, if they give me the report to bring to the doctor like last time.  I'll post on Thursday evening if I'm not too tired.  Have to decorate a little for my son's 15th birthday on Friday.  Thanks again for all your prayers and support.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on May 27, 2005, 12:48:10 PM
Lisa,

i am so happy that you are finally starting to get some answers!!!! Lots of prayers are with you to help your daughter get better!! Prayers are also with you to help you through this trying time!!!

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 28, 2005, 03:06:09 AM
Paulette,

Thank you sooooo much for your prayers.  I definitely believe in the power of prayer.  It's my faith that helps me get through so many difficult, trying times.  We went for the MRI of her hip yesterday but they gave me films instead of a CD (darn, so I couldn't burn the CD on my computer).  They said the doctor will be getting the written report.  I asked for copies and they told me it would cost $100 for copies.  Unbelievable - when her insurance is paying their bill.   When she had an MRI of her knee about a month ago, they had given me the CD with a report to bring to the doctor.  So I asked them why they didn't have the report and they said I couldn't have had a report the last time but just a standard form.  Well, I looked at the photocopy of the report of the MRI of her knee that I had made and was handed on April 6th.  It was dated April 7th with specific notations about the MRI of the knee showing normal results.  Sorry to vent but the medical profession can be so deceiving at times - at any rate I probably won't have a copy of the report in my hands until we go back to the OS on June 7th.  I might phone before then to find out the results.

Hope you have a good weekend.  I have a 3 day weekend  - thank God - now I have no excuse not to clean my house lol.  Today the weather was picture perfect in Pennsylvania - and it was my son's 15th birthday.  Heather's 14th birthday is June 10.   I won a raffle at work for an overnight stay at their timeshare in New York plus a small amount of cash for them booking a tour of the timeshare. I thought hey this is my lucky day so I played the lottery tonight.  Didn't win - shucks - but I have powerball tickets for Saturday.    I do telemarketing work.  Very, very stressful job.  Can't stand it but it helps with the bills for now plus where we live the jobs pay lousy.  Used to be a legal secretary in N.Y.  Would love to relocate back there but rents have skyrocketed over the past 7 years since we've been in PA.

Sorry I got off track.  Thanks again Paulette for writing.  Please keep the prayers coming.  You are in my prayers too!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on May 28, 2005, 06:23:16 AM
Heather and Lisa,
well i hope things are getting better...i havent heard from yall in a while....its like 12:00 am here so how did the bone scan go did they find anything???? if you've posted the results im sorry i didnt look cause im really tired....well i hope it all went well and that they can finally tell yall whats going on cause i know im getting frustrated not knowing about mine and i cant imagine heather cause she's had it longer than me!! well i better go im supposed to be asleep:) lol
hope you have a good memorial weekend....keep me posted cept i usually cant find it good luck with the house cleaning....
hugs xxxx,

mo
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on May 28, 2005, 11:42:58 PM
Lisa,

Feel free to get off track any time you want!! We all need to talk!! Feel free to privat message me any time you want!! I hope your 3 day weekend goes well and your daughter feels better!!!

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: three_screws on May 29, 2005, 02:42:14 PM
Hey, I was just reading over your posts, i didn't get the opportunity to read over them all but it sounds like you are having a stressful time!! I have had hip difficulties since i was born, i have just had my third operation to correct a dysplasia problem and i fully believe that my hips have been the cause of my knee problems. Whilst i am unsure what your daughter has wrong with her knees, i have had problems with osgood schlatters and dislocating kneecaps. I definitely favour one side of my leg when walking as well which over the years has probably added stress to my knees not doing them any favours. At the moment though since my surgery i have found that my knees are alot better, i have been doing lots of physio therapy strengthening up my quads and hamstrings and have found my knees do feel a bit more stable. I'm sorry if i what i've said hasn't helped, i'll try and read some more of the posts on here soon. Hope your daughter is okay, it'll get better, goodluck :) Pip.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 30, 2005, 06:31:23 AM
Hi Paulette,

Thanks for writing again.  Well, the 3 day weekend is almost over.  I feel so down watching my daughter hobble around.  It hurts so bad but I am trying to stay positive.  We won't have the insurance coverage I need to get her to doctors out of PA until July 1st and gosh that will be 4 months since the injury.  Maybe I should just get all the records I can between now and June 7 when she goes back to this OS and go to another provider with the insurance she has now.  I just keep thinking the longer we wait and she limps around the worse it will get.  I'm probably wrong, but just down.  I want so badly to see her running again and walking through the Mall.  Oh well, sorry again to vent but I know you don't mind - thanks girlfriend!  Hope you had a good weekend!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 30, 2005, 06:36:13 AM
Hi Pip,

Thanks for posting.  Yep, I am stressed to say the least.  Sorry to hear about all your hip and knee problems.  Hope things get better for you too!  My daughter got hurt at school in March and we seem to be at a standstill with the doctors we have presently.  But, I have to believe, I will look back at this in a few months and realize I should've been more trusting that my prayers were being heard.  Hope you had a good weekend!  Thanks again for writing.  Please keep Heather in your prayers!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: three_screws on May 30, 2005, 02:31:08 PM
Dear Lisa,
Things are pretty good for me at the moment! :), just remember that no matter how bad things seem to get they always get better, you just have to keep positive :)!! Injuries can take a while to get over, especially when you are still growing, i'm sure. It makes it difficult when specialists aren't sure of what to do but when they do know just think, it will be an informed decision to provide the best care possible for your daughter :) It's annoying about the insurance problems, especially when so much money is paid into insurance every year only to find out it can only be used with certain doctors in certain hospitals etc. Goodluck with the MRI results, if you phone up for the results you may be able to get some idea of what the problem could be (if you can translate them!) and perhaps even put your mind to rest a bit :) It's hard for you l because you probably feel helpless, but your daughter is lucky to have someone that cares as much as you do and is willing to go all the way to fix her problem!
~ Pip :)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on May 30, 2005, 11:54:24 PM
Hi Lisa;

     Thought I'd wait to see if yougot any more info on your daughters knees.  A few thoughts on what transpired at your OS's office:

1.  Your doctor is clueless.  The definition of Patellofemoral Syndrome is "pain in and around the patella."  It does not mention any particular cause!  He either is unfamiliar with the etiology of the problem, or he is trying to get you off his back.

2.  You are exactly right about the hip affecting the knee.  I mentioned femoral anteversion and tibial torsion in my first post-the first is hip related, adn the second usually results from the first.

3.  A hip fracture can definitely affect the muscles around the hip, as well as the articulations of the joint.  It may be a case of a small fracture causing inflammation near a hip muscle and affecting its function, as well as suffounding muscles.

4.  Your OS is stonewalling you on the kinetic chain evaluation.  A brief primer:  The body behaves as a chain, with movement of one segment affecting the adjoining segments.  An evaluation will tell you whether there are other joints and muscles affecting what is happening at the knee.  A hip problem is a good example.  Even back problems can affect the knee.   It's the only way to assess the problem from a whole-body standpoint.

     I will be attending the annual meeting of the American College of Sports Medicine in Nashville this week; many of the top orthopedists attend this meeting, which presents reasearch in various aspects of exercise.  If you let me know where you are located, I will try to see if there are any good knee specialists in your area. Hang in there, and good luck!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 31, 2005, 05:10:25 AM
Hi Pip,

I am glad things are going alright for you.  Thanks for letting me bend your ear.  I am going to call the OS tomorrow and hope they tell me something about the results of the MRI. I'll post if I hear anything.  Until then we're still in the dark but staying "positive".  Hope you have a good week!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 31, 2005, 05:26:20 AM
Hi Trekker,

Thanks for writing!  I was wondering why I hadn't heard from a few people, you being one of them.  I sort've figured you were probably waiting for more info, which we don't have unfortunately. 

The doctor "is definitely clueless" - I agree with you 110%.  I am beginning to think that she injured her hip when she fell as it has really been bothering her this past week a lot.

Re the meeting you will be attending this week in Nashville - we live in Pennsylvania - in the Pocono Mountains - the nearby counties are Monroe (which is where we have been going to these "clueless" OS doctors.)  Lehigh Valley is nearby too, but her insurance doesn't cover those docs.  As of July 1st I am putting her on my health insurance at work which is Aetna and I've chosen the QPOS (think that's what they call it).  It's where I can go wherever I want - with a deductible though.   If you get a chance to ask about some good specialists, ask what they think about the Hospital for Special Surgery in New York City.  That's where I'm leaning to for now.  Just have to wait till the first week in July to go.

Hope you have an informative conference meeting.  I was in Nashville many moons ago with a boyfriend.  We were only there for a few days.  Kept walking past this shop where they had the Pink Cadallic which I think Hank Williams owned.  Interesting trip, to say the least, that was back in my so-called hippie days.  Hope you had a good Memorial Day weekend. 

Thanks again for your insights and thoughts and encouragement.  I really appreciate it sooooo much!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on May 31, 2005, 04:29:12 PM
Hi
it's been a while since I said hello.
Just wanted to say good luck for June 7th and also ...don't let the hip become the whole focus. If there is a problem then it definitely needs fixing, but also you must focus on the knee. How would the hip affect the knee and if it was treated how would this help to cure the knee. It's great you have got some answers form the xray though. I hope it helps.

xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on May 31, 2005, 04:38:07 PM
Trekker, How about checking out some docs for those of us lost in the midwest, Missouri, Iowa and Kansas? WE seem to really be lacking, especially the more specialized, like repeat injuries, second time around tkrs, or revision, and knees that have been made worse by too many surgeries. Would really appreciate any help you could find or know about. I have been a RN for along time, but our area is so rural, that we don't have to wait for more than a week for any scan, ct, mri, nuclear etc.  BUT our physcians seem  to think that because we do lack specialists they are capable of procedures they should not be doing, in settings where the followup is zil.THanks, Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on May 31, 2005, 11:17:32 PM
Hi Sparkle,

Good to hear from you! 

I write the following to you and to anyone else who has been writing us.  The OS we have been seeing is definitely missing a few screws or something!  I phoned him today from my cell before work and he told me the MRI (which I have the films and he never saw) written report showed nothing wrong with her hip.  I mentioned the xrays that were included with the bone scan - the reason we went for the MRI of the hip and I can't remember word for word what he said - but he said something to the effect that she probably had a trauma to the hip at the time of the injury and that there might be a slight fracture - yet then said it wasn't a fracture and that she doesn't need surgery - sorry but he made no sense to me either.  He then said -well she's in physical therapy, let her continue.  To which I replied - you told her to stop pt.  To which he replied - when are you coming in to see me?  And I told him June 7 (but we're not).  He said she should stop using the crutches - the kid can't walk without dragging her leg without them - I didn't talk further to him but asked if I could pick up a copy of the written report.  I phoned his office back after work and requested copies of her file.  Supposedly I will get them tomorrow after I sign a release.  I am also going to get copies of the bone scan, xray and report from the hospital.  Then, I am making an appointment, hopefully soon, with an OS in New Jersey who takes her insurance.  Ultimately, we will go to New York in July.  Some doctor huh?    And we thought we finally found out something!  Looks like we are at a standstill again until going to another OS.  Heather said her foot is constantly falling asleep and that her hip is pulling like her knee.  So onward we go.  Will keep you all posted with any new results.  Thanks once again for being here for us!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Sharon on June 01, 2005, 04:45:15 AM
Hi Lisa,

I've been following along on what's going on with your daughter although I haven't posted anything to you yet. It really is a terrible situation that they're putting you both through and I can understand how hard it must be. All of these OS's really do sound like complete jerks and I can certainly understand how stressful it is to deal with them as I've been through 8 OS's myself before actually finding one who actually wants to help his patients. Anyway, I read that you're thinking about taking your daughter to the Hospital for Special Surgery. That's where my OS is and I honestly can't say enough good things about it. I have gotten the most wonderful care there from everyone I've dealt with and I have found that everyone there has incredible knowledge about orthopedics. Even though my knee problems are very complex and very rare(I have patella baja-my kneecap is sitting way too low due to scar tissue shortening my patellar tendon), my OS there is offering me hope of things being made better if I decide to go through with the major surgery he has recommended. There are 2 OS's there who I have personally dealt with and both of them were wonderful. If you want their names or any info please let me know and I'll send it to you in a private message. I really hope that you can get some help for your daughter-13 is too young to be dealing with all of this!

:)
Sharon
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 02, 2005, 05:02:44 AM
Hi Sharon,

Thanks for writing and for your input on the hospital for special surgery.  I figured they would be one of the best to go to - just have to wait until July 1st for the insurance to kick in for my kid.  I would be very interested in some doctor's names.  I've printed out a few that I read profiles on.  On your initial consultation at the hospital for special surgery did they evaluate you and make a return appointment?  I am asking as I have to take time off from work to get into NY from PA.   I have all her MRIs now and xrays with reports which I intend to bring along.  I am hoping if they recommend a pt that they can work with one up in PA.  In the meantime, I probably will take her to New Jersey next week to see what an OS says there.  July is a month away and I hate to just sit and wait and have her limp around without trying all the options we have until July.  Gosh it took you 8 doctors to finally get some help?  Wow, that must have been so frustrating.  I appreciate your input and hope and pray you finally will get the relief and the help you need.  Thanks again!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on June 02, 2005, 06:19:11 AM
Lisa, Just a word of caution, about scheduling with drs. on the new insurance. Have you made sure that the insurance does NOT have a preexisting clause? IF NOT< then it may not cover her for at least one year for anything she has already been treated for in the past 12-18 months. It depends on the state laws and the rules and regulations of your insurance. Just wanted to warn you before you made the appt, and all that, and then found out they considered it preexisting and would not cover it>   I hope, that it is not and that you are able to switch to the new plan and use the new drs. IT is such a shame that so many Drs. really don't seem to want to help people, just make money.  I have one I am stuck with, and have spent many hours crying, screaming and being angry. Good luck, Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on June 02, 2005, 01:18:39 PM
Lisa -

Teresa had a very good point.  Once you confirm that your daughter's treatment will be covered, call and make the appointment now.  It can easily take 4-6 weeks for a new patient to get an appointment with an OS (in some cases much longer).  The office staff should be willing to schedule the July (if you're lucky) appointment for you now, so you can do part of the wait while on the old insurance.

I haven't responded much to this thread, but I've been following along.  I know that you are doing everything in your power to help your daughter.  You sound incredibly stressed, and you may be transferring that to your daughter as well.  Don't stop fighting for a solution, but take a deep breath.  As a result of human nature, most people respond poorly when dealing with stressed out people.  They become less willing to spend time answering your questions, or asking you more (relevant to diagnosis) questions.  Then you, the patient and parent, get frustrated that you're not being assisted.  And you get more stressed, and less patient with the process. 

When you go to see the new OS in NJ, have your daughter type out a description of her symptoms.  Have her keep a "pain journal" for 1-2 weeks before the appointment.  She should note her pain levels each day (1-10 scale), any thing she does different today from yesterday and how that makes the knee/hip feel, etc.  That may help the OS pinpint certain activities that contribute to her pain.  Things that are difficult to notice in just one day.  Maybe she had a lot of classes in the upper floors of her school and had to climb the stairs a lot.  Maybe she slept funny.  Maybe she sat on the floor with her leg straight out in front of her.  Little things, but if tracked over time they begin to form a pattern.  This also allows the OS to read about her symptoms and pain without the emotion of a discussion.  YOu may also want to call his office, and find out if they'd like to see the previous medical reports and films in advance. 

Good luck with everything.
Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: tanyasparks on June 02, 2005, 08:19:26 PM
Lisa and Heather,

I'm so sorry that you still don't have a resolution to all of this.  I feel so bad for Heather.  I had my left knee injury in high school.  I was on home bound studies for 5 months.  I missed almost the entire second semester of my junior year.  I was so frustrated becasue they had problems diagnosing me.  I feel her pain about having to limp around forever on crutches.  It feels like it will never end.  But it will.  Everything happens for a reason.  I know that God has something great for you both.  Maybe, she is going through this so she can uplift another young person with similar problems.  I'm thinking and praying for you both.

Hugs and prayers,
Tanya
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on June 02, 2005, 08:35:47 PM
Lisa and Heather,

Hi, I have been following your story.  It is so hard to believe that in this day and age people are being jerked around like this, expecially when your daughter is so young.   Where I live there has been considerable problems getting a proper diagnosis - did not think this was going on in other places. 

It is such a hopeless feeling.....

Thank heavens your daughter has you - good luck to you with finding a knee specialist in another area - that is what I had to do also.  You need an OS that will actually look at all the information + look at your daughter and give her a hands-on assessment.

This wishy-washy stuff should not happen from people trained in the medical profession.

Hope all works out for you.

Good luck,

Shade
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 04, 2005, 05:01:51 AM
Hi Teresa,

I checked out if the new insurance will cover pre-existing conditions and was told she will be covered as long as she had other medical insurance before switching, which she does.  Don't know how other insurance fits into the picture, but all that matters is that pre-existing conditions are ok.  We have to pay $200 deductible for the first year and then 20% of any other bills.  It's a good plan because she can go practically anywhere, to any State where they would accept the insurance and most places do accept the insurance she will have.  Thanks for writing and making me aware of this.  Hope you have a good weekend!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 04, 2005, 05:12:07 AM
Hi Jess (Blackbelt girl:)

Thanks for writing!  That's a good idea about her keeping a journal re the pain, but we have an appointment on Monday 6/6 at the N.J. office.  Pretty quick huh?  Up where we live, I've found out that we don't have to wait too long for an appointment.  So I guess two days of a journal isn't the greatest, but she's typing everything down on the computer so this way when we go to N.Y. (if we do, depending on what happens in N.J.) we will have some notes.  And yes I am definitely stressed, wouldn't say incredibly stressed, but enough yet strong enough to stay positive!  And all I can be with the doctors is "me".  If they don't like it, well in New York terms "tough". (smile).  I have to feel comfortable with a doctor that's the bottom line.  I feel confident that this will get resolved - it's just taking a while till we get to the right doctor and a good diagnosis - but I truly feel it will have a good outcome.  So, we will see what happens Monday.  I hope the appointment is still on as they tried phoning me today while I was at work, but left no message on my answering machine.  It better be on as I took a personal day off from work.  I'll keep the board posted as to OS #3's diagnosis.

Have a good weekend!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 04, 2005, 05:22:16 AM
Hi Tanya,

Thanks for your words of compassion!  Yes, I do believe somewhere down deep in my heart that there is a reason that God is allowing this to take so long to resolve.  Perhaps it's like you said - for her somewhere down the road to help someone else in a similar situation.  It's frustrating but I've had occasion this week in some other areas where I realized that I lack faith.  I was supposed to get a call from a priest in a church about a problem I was having with my daughter's Confirmation Class and I told a friend on the phone that he probably won't call and she said hang up the phone Lisa and see.  Well not a minute after I hung up the phone, he called.  This friend of mine has a great deal of faith - something I need to work on.  Will keep you posted as to the latest outcome of our soap opera (smile) of the knee.  Don't mind me, it's late, I'm tired but want to respond to everyone who has written.  I hope you have a good weekend.  Thanks again for caring!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 04, 2005, 05:31:13 AM
Hi Shade,

Yes, you are right - it can be a hopeless feeling for sure - but I gotta keep the faith and still believe.  These doctors, like you said, are wishy washy - guess when they don't really know what is going on they start with the "well it could be ------------  etc. etc."  Guess a lot of these doctors are only good at casting broken arms and stuff.  Hopefully, we will hit upon a good doctor soon and start to straighten out her knee which is now affecting her hip as it's been going on so long without a proper diagnosis.  At least I have this new health insurance to look forward to beginning July if nothing works out with doctor #3 next week.  With the new insurance we will have unlimited access to anywhere in the U.S.  Now getting to these places is another story (smile).  Keep playing the lottery but guess my ship hasn't come in yet:) 

Speak to you later - have a good weekend!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 04, 2005, 05:36:11 AM
Hi Sandy,

Don't know if you are reading this - but just want to let you know that I tried to reply to your message and the site wouldn't let me post a private reply to yours.  It keeps saying I have to log in and when I do it says the same thing.  So if you or anyone else knows what could be the problem, I'm all ears or should I say eyes:)  Anyhow, just wanted to thank you for your support and kind words.  Thanks for writing!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Sharon on June 04, 2005, 05:51:47 AM
Hi Lisa,

Let me know after you see the doctor in NJ if you need the names of the OS's I've seen at HSS. I never had to wait for more than 2-3 weeks to get an appt with either of them. On my first appt with both of my OS's there I was evaluated and given a plan of action for that time as well as told when I was to return for another appt. I think there's a chance that they'll be able to give you the name of a PT for your daughter in PA if they recommend that she do that and they'll gladly work with them. They see people from all over the country and the world so I think they're kind of used to corresponding with PT's from a distance. I have to say that both OS's I've seen have the BEST office staff I've ever experienced in a doctor's office. They're willing to help in any way that you need and any way that they can. They really go above and beyond so I'm sure if you need anything at all in scheduling an appt, finding a PT or getting info from the OS to the PT or vice versa, the office staff of the OS you see will be more than happy to help. So let me know if you decide you're going to take her to HSS and I'll get you all of the info on my 2 OS's there. The only other thing you might want to do is look into pediatric OS's at HSS. At 25 I'm too old for them but I have heard good things about them. Good luck to you and to your daughter at the upcoming appt in NJ! I hope it brings some answers and help for her!

:)
Sharon
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on June 04, 2005, 01:07:14 PM
Lisa -

WOW!  I can't believe you got in to see an OS that quickly.  I gre up in NJ, about 30 miles from manhattan.  And when I first started going to the orthopedist for my knee, WAAAAYYYYY back when I was in high school, it was about a 4 week wait for a new patient for doctors with a good rep.  At HSS, I imagine you'll find a longer wait than you did with the guy in NJ.  Just be specific about who you see at HSS - many of the doctors there specialize in joint replacements, vs. pediatric cases.  (My grandmother had both hips, both knees, and the knuckles on one hand all done at HSS.  But she had RA, most of us will never wear down all our joints like that.)

At any rate, I do understand the "tough" attitude.  I've also learned that, even if my doctor is also from the NY area, he will still respond better if I don't already sound like I'm stressed out and no one can help me because everyone insists on ignoring reality.  Most doctors choose medicine because they want to help people in some way.  Especially the yonger ones, since the money isn't quite what it used to be.  (That's not to say it's not great money, but by the time someone's in private practice as an OS< think about all the loans, and the years of working 12-14 hour days for a salary that pays for only 8 of them.  Not exactly a joyous situation.)  There's a difference between being frank, and having an attitude.  When I went to see my current OS I told him, flat out, that he was my 2nd opinion.  I told him clearly why I had no faith in my 1st OS, and who had referred me to him.  Then I told him what hurt, and waited to see what he did.  What he did was ask me questions, listen to my answers, and then work with my knee to see what it did/didn't do, where it hurt, etc.  He gave me his preliminary diagnosis, asked for an MRI, told me it would be a tricky read due to past surgery, and gave me confidence NOT that he knew the answer, but that he was willing to find it.

So like your friend said - have a little faith.  Pediatric joint problems are always harder to diagnose, since many youth are still growing.  And as with lots of other things, doctors tend to avoid invasive treatment, if possible, in younger patients.  Because everything comes with unexpected consequences.  Even if it's a low risk procedure, and you have no complications, most people find that some aspect of their recovery isn't quite what they expected.  At 17, I became an ex[ert weather forecaster due to my knee.  I was out of college before the rainy day knee pain had faded enough that I didn't connect the 2 in my mind.  Not a big, tragic consequence, just a reality.

Good luck next week.  Keep a positive attitude going, and trust the doctor until/unless he proves that you shouldn't.
Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: katmomx2 on June 04, 2005, 11:30:53 PM
Mom and Heather, I have been reading your thread. My heart and prayers go out to both of you. Heather I hope they figure this out for you . Mom you are awesome. I will be out for a couple of days as I am having a distal femoral osteotomy on tuesday. I  will check back on your progress when I can. Good Luck mom and Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 06, 2005, 04:05:02 AM
Hi Sharon,

I will definitely try and post tomorrow after the appointment in NJ.  I really want to take her to HSS and am going to phone the info line there in the morning and see if we can schedule an appointment for when she gets on my insurance.  I'm beginning to think that a pediatric orthopedic might be where they would refer her to as she is still growing.  If you get a chance let me know the names of the OS you think highly of there.  There is a chance, of course, that this OS tomorrow might work out but I think I might want an opinion from the HSS as I have heard such good things about them.  Thanks for writing!  Have a good week!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 06, 2005, 04:09:15 AM
Hi Jess,

Thanks for the good wishes re tomorrow's appointment in NJ.  I'll try and go with an open mind and not attack them :)  My daughter's hip is making a cracking noise a lot today - she's been writing everything down and we'll bring it into the OS tomorrow.  I hope they have an answer for us.  Will post hopefully tomorrow evening.

Have a good week!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 06, 2005, 04:13:22 AM
Hi Katmomx2,

Good luck with your procedure on Tuesday!  Thanks for writing us.  Hope all goes well with you Tuesday.  Am keeping you and all on this site in my prayers.  Please keep us in yours!  Hope you have a good week and everything turns out good!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 07, 2005, 02:12:24 AM
Hi everyone,

I really need your input on what the new OS told  me today.  He looked at all the xrays, bone scan, mri I brought in and examined Heather.  He touched a place on the outside of her knee that was exactly where it really hurt her.  He then had her take xrays in his office of her knee.  He said that he is not certain but suspects that she has a torn lateral meniscus and that a piece of, I think, cartalidge was there.  He is sending her for another MRI of her knee.  He thinks that her knee is locked and therefore twisted.  He said if the MRI shows what he suspects he wants to do surgery next week and is hoping that her knee will go right back into place but that there was no guarantee it would as it has been 3 months since the injury.  I told him that I cannot get her there for surgery next week as my friend who drove us there is going away June 14 and won't return until June 28th.  He said this had to be done right away because the longer we wait the chances are less that her knee will go back into place.   I know that I can't get her there next week for sure but will probably be able to get the MRI done before then and hear the results.

Now, I have always heard that when one, so to say, goes under the knife, a second opinion is warranted.  But, unfortunately, I cant get her to the Hospital for Special Surgery until after July 1.  It has been since March that this injury occurred, do you think that waiting till July, which we would have to anyway due to transportation would matter?  This is so hard for me, being a single mom with another kid besides Heather.  If we go to New York it would entail more time off of work, which my job is very shaky yet I know that my kids come first.   Now you can say I am stressed.  I am just wondering if I let him do this operation, which would be in July or the very end of June anyway, would it make her worse if it didn't work?  Any advice you all can offer would be very much appreciated.  He also said that physical therapy would not help the situation.  He rotated her knee to a normal position but as soon as he stopped the knee went right back to the dislocated position.  He said he never saw anyone with an injury like this.  He asked his collegues advice also.  So that's the story.  Please let me know what your thoughts are. 

Thanks for all your support!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on June 07, 2005, 03:01:25 AM
Lisa, The reason that she will be covered if she had other insurance is that if you work at one job, and the have to switch jobs, and insurance companies, along with the job, then the second company has to take you IF you had 6 months of continuous coverage prior to tthe switch. The only time you would have trouble is if there were breaks in her coverage. I knew when we were getting new coverage several years ago that we had to have either not seen a dr. for the last 18 months at all, or been covered for 12 months straight on another policy. GOOD luck, . Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: tanyasparks on June 07, 2005, 07:35:00 AM
Hello,

Just a note to see how you are doing.  I'm glad that some answers are finally coming your way.  At least now you have an OS that believes that there is a problem there to be fixed.  I hope that you can work out the scheduling problems and I will be praying that everthing works out great. 

Hugs and Prayer,
Tanya
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on June 07, 2005, 12:19:39 PM
Hi, Lisa;

     Back from my conference today;  get the MRI done first before making any decisions.  There's no point in trying to decide what to do before then.  If they do not find anything and he decides to do exploratory surgery, there are a couple of things you will need to be aware of.  One question- when you say he rotated your daughter's knee, what exactly do you mean- the patella, the tibia, or the femur?  By the way, damage to the meniscus almost always involves a twisting of the knee, but if I remember correctly, your daughter was hit/fell on her hip.  I may go back and read the original post.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on June 07, 2005, 12:54:37 PM
Lisa -

I agree with Trekker.  Get the MRI done as soon as you can possibly get your daughter to the center.  I'm hoping that the new OS wrote out a specific scrip.  There are different settings on MRI machines, and sometimes controlling those settings is the difference in getting a more solid diagnosis.  You said the doctor manipulated the knee in his exam.  Did he look at her hip as well?  Did he address the possible fracture one of your previous physicians pointed out?

IF your daughter has a torn menisucs, it is generally pretty easy surgery.  It's outpatient, generally considered "routine", and most people are back to normal within weeks.  Because the OS thinks your daughter's knee is locked in this unusual position, I'm not sure how that adds to recovery.  I had my first surgery on my meniscus when I was 17.  I had some other stuff done too (I wasn't such a proactive patient back then, and don't remember all the specific terms), but I was off crutches inside of a week.  I was back at my normal school and sporting activities in about 2 weeks, with extra breaks for rest and ice as needed.  I know you're super keen on getting to HSS, but people have bad experiences there as well.  If you're gut tells you that this man can help your daughter, don't make yourself too crazy about seeing yet another OS.  Especially if you don't already have the appointment set up at HSS.  It's really important with these decisions to trust your gut.  You wouldn't have gone all the way to NJ to see this guy if he didn't come recommended.  He consulted others in his office - this means that while he had a theory, he wanted to see if it passed the "smell test" with his colleagues.  They may have offered other theories for him to examine, or offered experience with a similar case, vs. just corroborating.  If they were "yes men" there would have been no point for him to call them away from their own patients.

As to getting your daughter in for surgery sooner, rather than later, meniscus surgery is generally pretty brief.  If you can take a half day off work, and this OS can get your daughter in as the 1st surgery of the day, even with a 1-2 hour drive home, you could be back at home by noon.  If there is someone who can stay home with your daughter, you can go in to work the half day.  That way she gets the treatment, you have less job stress. 

Good luck.
Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 08, 2005, 12:30:59 AM
Hi Tanya,

Thanks for writing.  I'm still not sure what I'm going to do re scheduling.  First have to take the MRI and then decide.  Will keep you posted.  Hope all is as well as can be with you!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 08, 2005, 12:42:31 AM
Hi Trekker,

I can't exactly tell you what he did - it looked like he held her foot up and pushed her knee back in place but as soon as he let go it went back to the dislocated position.    I am going to schedule the MRI as soon as they tell me they have the referral, hopefully before my friend goes away to Florida, as that is the only way I can get to the doctors in NJ.    To refresh you - she was playing in gym and her and a boy were running for a ball and they both fell trying to get the ball - he fell on top of her - her hip was partly touching the floor and he on her knee with all his weight and he didn't get up for a minute or so.  Now this new OS says her hip is ok yet she feels pain in her hip that she can't really explain.  Oh well, I'll let you know what we are going to do after we get the results of the MRI.  I hope they approve another MRI of the knee as she had one done just about 2 months ago.  Thanks for writing.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 08, 2005, 12:58:35 AM
Hi Jess,

I could never go to work and leave her in the hospital even for a moment!  What I meant regarding sooner than later is that he implied that if the MRI shows what he suspects, she should have surgery right away as the piece of ___?  I can't remember what --- has to be removed.  He claims the longer she waits, the less likely her knee will go back in place.  Yet there is no guarantee surgery will change the shape of her leg.   There is no way I can get her in for any kind of surgery until the very end of June.  He claims this has been going on for over 3 months now and the longer we wait the less chances are that her knee will be normal again and might always look deformed.  But being that I can't get there until the end of June I am seriously considering taking her to HSS in the beginning of July.  My gut tells me to go for another opinion and my gut also tells me I do not know this doctor from Adam - he did come referred - but by noone who personally had him do any procedures  Right now I don't know what I am going to decide but I am leaning towards taking her to New York.  True, even the best hospitals make mistakes but I still want her to go to the very best acknowledged place for orthopedics.  I speak from experience - I had a pain in my breast many years ago and my doctor said it was "C" and recommended radiation.  I phoned Sloan Kettering in NY.  When I told my doctor I was going there he said the same thing you did and that they messed up a procedure on his father.  Well I didn't listen and went with my gut and lo and behold and praise God I didn't have "C".  My thoughts on my daughter is that if we have to wait until almost July anyhow - why not go to NY.  I just wanted an opinion regarding waiting the extra week or so.  I know it has been a long time unfortunately but sadly the OS's we saw didn't suspect anything requiring surgery.  I'll keep the board posted as to any decisions.  I am praying for guidance so I can know what to do.  Like I said once before, it is my faith that sustains me and I know God has his hand right on the situation; nevertheless I am of course worried and stressed.  Thanks for all your advice.  Hope the rest of your week goes well!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on June 08, 2005, 03:43:47 AM
Lisa,

I would not necessarily agree with the rationale that "she's been this way for three months, another can't hurt."  It can.  And the fact is that she could have torn her meniscus months ago, and only recently (through the vigorous and completely inappropriate PT you said she had to do) did the flip of torn cartilage lodge itself in the joint.  There's really no way of knowing.

I do know that a 'locked' knee is an emergency.  It is treated that way even by stingy HMO's!!  because if the torn bit is large or becomes disattached, it can permanently impact knee function.

The other issue is that even if you wait "only" until July for an HSS appointment, there's no guarantee that the doctor can do surgery right away.

Anyway, if you are interested, there is a fantastic and well-regarding OS in New Jersey--Dr. Andrew Levy.  Several people on this page have had surgery with him and they absolutely respect him and his abilities.  Maybe he doesn't have a long wait so you could get a second opinion there...? 

There are MANY excellent surgeons in the NYC metro area.  There is no real reason to wait 4+ weeks to see one at the HSS, not when there are so many others.  The reason I say this is because I waited for an appointment at the Mayo Clinic--THE MAYO CLINIC--for the 'best knee surgeon' in their system.  He was an absolute disaster, and a jerk as well.  And his medical opinion was wrong.  So what I guess I'm saying is that just because some doctor works out of a nice hospital doesn't mean he's any better and worth risking your daughter's meniscus for...

Just an opinion--and not even a solicited one at that.  I understand the stress and the difficulty of arranging things and having all the responsibility on your shoulders.  Maybe if you saw a surgeon closer to home that others on this site had had surgery with and readily endorsed, you would feel better?

Hang in there.  It's a tough call to make, and you are only looking at your daughter's best interests.  Let your instincts guide you to make the decision that's right for you guys, just make sure you have all the information you need. 

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 08, 2005, 04:38:13 AM
Hi Heather,

Her knee was out of shape like it is now before pt.  She had an mri done 2 months ago to rule out a meniscal tear and it came back showing no tear.  The reason I have to wait until July is not only the insurance issue but I don't have any way to get to NJ.  We live in the boondocks in the Poconos.  I never drove when I lived in NY but drive up here the last 4-5 years but only locally.  This wonderful woman has helped me get to places I couldn't drive to and she is the only one I know who could get us to NJ or NY for that matter and she will be gone until the end of June.  This is my dilemma.  I wish I knew someone else but I dont - the only people I can think of are single moms like me or people from work who can't afford to take time off.  So you see it's not a matter of just waiting - it's no other choice.  Even the priest that used to help me in a crisis has been transferred and, unfortunately, not all christians go out of their way to help.  Now you have me worried about waiting but I have heard it said when things are out of our control we have to stop worrying.  I am just continuing to pray and pray that God will step in and help me find a way, because God knows I am trying.  Thanks for your thoughts.  I have to try to stop worrying because that is doing me no good.  Will keep you all posted.  If you pray, please remember us!

With thanks and hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on June 08, 2005, 01:54:28 PM
Lisa -

I'm with Heather.  You've been working your tail off to find a doctor who can help your daughter, and delays can impact the joint.

As to surgery day - I wasn't suggesting you not be at the hospital.  I was saying you can be at the hospital,  get your daughter home and comfortable, and then go into work if there is someone who can stay with your daughter for a few hours.  She will be at home, recovering (and probably sleeping) by the time you leave her side.

As to driving in NJ - if you're afraid to drive in the city you definitely should not do it.  But most of NJ isn't too bad.  (I grew up there.)  You can  get from the Poconos to NJ without taking major highways, and many towns in NJ are laid out as your basic small town, relatively easy to get around.  Remember - you weren't happy with any of the OSs you saw previously, so why decide that their diagnoses should weight into your decision?  I'm not saying you should rush into surgery, just that if it's truly needed, timing is important.

Good luck.
Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on June 08, 2005, 10:38:49 PM
I've only been to NYC about 5 times, but we did take the train once and bus another time.  I got to experience the joy of the Port Authority Bus Terminal at 2am...after someone tried to mug us (nice try, guys, but there were cops EVERYWHERE who came busting out and tackled them!) we had two very nice officers babysit us until our next bus to Rochester came through.  It was an adventure....anyway, I'm sure the train is more comfy.  There is excellent train service to NYC and surrounding areas, to my understanding.  You guys could rent a wheelchair and be good to go.  Get the MRI and everything done so she can have surgery (if needed) the first day of her new insurance coverage.  Be sure to get pre-approval, even if it says it's not required...the doctor's insurance coordinator will help with that.

Anyway, the idea of driving to a small town in NJ is great as well.  I'd actually much rather drive on an expressway/freeway/interstate than on the mean streets of NYC, though I did survive totally unscathed.  Grew up driving in So. Cal, so if they couldn't get me, no one else will.

I guess my point is that there is more than one way to skin a cat!  Be creative--take the train and try to turn it into a fun mini-adventure.  Take the bus for a max-adventure ;D  Rent a car if you're worried about the family vehicle getting dinged when you park.  Ask around your daughter's school and among her friends and see if some of the other mothers are up for a day of shopping in NYC--offer to pay for gas. 

You're probably so tired and stressed that you're missing the forest for the trees.  You can do this!  And even turn it into something somewhat fun.....except for that whole orthopedics thing  ::)

Keep us posted. 

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 09, 2005, 04:47:00 AM
Hi,

I have pretty much come to a decision, for now at least, and if my daughter can hold out.  I am going to take her to N.Y. in July.  I won a free overnight stay at the timeshare I work for and can stay there - it's pretty exclusive and right in the heart of the City.    Definitely cannot and will not drive to N.J. a nervous wreck - the roads may be local but not to me.  I am first going to hopefully check with HSS via phone to see if it can wait.  The doctor's office in N.J. phoned and said that they had the referral number for me to schedule the MRI but it was at the same place we did the other knee MRI and not the facility that the doctor told me he only wanted me to go to near him.  The insurance she has right now will not give an out of network referral if there are other MRI places in network.  I tried explaining that to the N.J. office and they told me the doctor and his nurse were not going to be back till Monday.  I probably will call the emergency number tomorrow and ask him to phone me and see what he says about going where the insurance says we have to.  I have been praying really hard about this, stopped into church this afternoon and sat there a while before going home to find out all this re the MRI.  I will let you know my final decision depending on what medical advice I get, if any, or go by my gut.  Oh, on another note I sort've figured out how to private message.  I seem to have to go into the name on this bulletin board and there's a place there to do that.  To those of you who messaged me and I couldn't reply, I have to go through the board to do it.  Hope I am making sense.

Will let you know if I get to speak to the doc in N.J.   I am tempted to go ahead with the MRI facility near me as I have the script for the MRI but he seems to want to use the place where he knows the technicians.  The place near me already has done one MRI of her knee to rule out meniscal tear and it came back normal?  So we are at another standstill for now - but there is a  reason for everything I believe and only God knows the reason.  All I can do is my best and hope and pray that all will turn out good.

Thanks for all your thoughts, support and advice which really helps me sort things out.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on June 09, 2005, 06:37:09 AM
Hopefully this link will help explain some things:  http://www.kneehippain.com/patient/i_mri.html

BTW, the doctor likely wants to use the MRI location he indicated because he trusts/likes the radiologist or they may have the latest and greatest technology, such as results that are on computer CD disk that can be transmitted electronically.

As the link explains, all MRI's are not the same--the depend on the machinery age, software, maintenance, and the settings.  Then the technician has to place the knee correctly and set the machine up properly.  Then the radiologist has to read ALL of the views and interpret them based on what he/she sees and the patient's complaints and presentation.

If a doctor asks for a specific radiologist/location, chances are good that there's a reason.  Obviously the previous MRI didn't show much that was helpful, or it didn't cover the angles he wanted, or....best thing to do is ask!

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 10, 2005, 02:15:42 AM
Hi Heather,

The OS office left a message today saying that I could go to the MRI place near me.  They are very modern - her last knee MRI was put on a CD which I burned myself a copy of.  But, of course, the last MRI was completely normal of the knee.  Probably next week we will go and have it done but probably I will take my copy into NY, as I don't foresee going back to the doctor in NJ if he says surgery.  I need another opinion from NY - bottom line.  Thanks for sending the website.  Will keep you posted.  Have a great weekend!  Tomorrow is Heather's 14th birthday so I am going to decorate the house soon and wrap her gifts, etc., etc.  Got a great birthday cake - chocolate with Cannoli filling.  The filling alone cost almost as much as the cake but what the heck, she's worth it:) 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 16, 2005, 01:11:03 AM
Hi,

This might be a little lengthy.  I have in front of me the doctor in N.J.'s evaluation of Heather and also the written report of the MRI taken yesterday.  First let me tell you that the MRI was "normal" and says "specifically the lateral meniscus is intact."  Now here is the written diagnosis from the doctor in N.J. that I asked our pediatrician for. The diagnosis was before the MRI was ordered.  Diagnosis:  Question torn lateral meniscus with locked knee, long standing, with posterior lateral subluxation of the tibia on the femur.

He goes on to say that examination of the knee reveals a significant valgus deformity and significant posterior lateral rotatory subluxation of the tibia on the femur.  Her patella is well seeded within the femoral groove.  She has no patella instability.  She has marked sensitivity over the lateral joint line.  She has no sensitivity over the medial joint line.  She has no gross instability to varus valgus stress, though she is in a significant amount of spasm.  She lacks 5 degrees of extension, flexes only to approximately 30 degrees.  She has no gross Lachman, unable to do an anterior drawer and unable to do a pivot shift due to the spasming of the knee. 

It goes on a little further but I don't think all of you understand this medical lingo as I don't but for those of you who might understand I am writing this for an opinion.  So to go on - he took Xrays in his office in N.J. last week and the paper states:  Repeat x-rays taken today reveal significant posterior lateral subluxation of the tibia in relationship to the femur.  No acute fractures are noted. 

And this was his PLAN 1:  We will repeat her MRI scan and if it shows a locked lateral meniscus we will plan on scheduling her for a right knee arthroscopy, either partial lateral meniscector or lateral meniscal repair.  I did discuss with Heather and her mom that due to the long standing subluxation of her knee, there is a possibility that this is now a static deformity which may require significant open releases of the posterior lateral corner.

The deformity part really is upsetting for me as a mom.  I am going to pick up the original films, I have a CD too of the MRI - and I am bringing them in to New York in the beginning of July.  Her pediatrician, when I mentioned where I was bringing Heather, said it was a great place to bring her and that her husband, who is an orthopedic surgeon up here has friends there.  We couldn't go to her husband as he also did not accept the insurance we presently have, but bottom line is New York is where we are heading.

So once again we are at a standstill.  It seems like she more than likely will have to have them look inside her knee to see what is going on.  And then, maybe they will say something different.   Sorry to type all these medical terms, but I do know that some of you are familiar with them and could offer your opinion.

Thanks for listening!

Hugs,
Lisa

Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on June 16, 2005, 01:07:26 PM
Lisa -

It sounds like this guy is smart - he did a thorough exam, and is NOT relying on the MRI.  I don't remember if anyone recommended Dr. Gresalmer's book to you - there is a link to it from the front page of this website.  But MRIs are a very inexact science.  In many cases, if the physical exam has strong indications of meniscus damage, the OS won't even bother with the films.  It's a very expensive way to get people to second guess their course of treatment. 

Have you made the appointment in NY yet?
Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on June 16, 2005, 05:56:31 PM
Upsetmom:

I've been reading your thread, and I really feel for you and your daughter.  I hurt my knee several times growing up and as an adult.  I am now 51 years old, and I can tell you, the worst thing I ever did was try to ignore my knee problems away. Three months ago, I was bending over drying my hair when I heard a "pop" in my right knee.  And, bam, just like that, I had a meniscus tear.  I had to fight tooth and nail to get my Primary Care Doctor to refer me to an OS.  I lucked out the first time, and got a good one, who listened, really LISTENED to me.  He took me seriously from day one. 

I recently had a partial meniscotomy and smoothing of my patella (bone spurs).  The procedure itself didn't hurt, but it hurt like hell afterwards.  The PT hurt, walking hurt, getting up from a sitting position was agony.  :'(   I say was... because my knee is so much better now.  The reason for the improvement was the advice I got from the folks on this website.  Since I stopped pushing so hard and elevated and iced the knee, I have made more improvements in the last few days that I had in the 5 weeks after surgery.  I want to thank all the people who helped me, thank God for you, and thank God for this website.

Speaking from experience, it's better that Heather get the problem addressed now, than regret it later.  I now have severe arthritis in my right knee.  So much for "ignoring" the problem away.

Bravo to you for fighting for your daughter.  Kudos also for not giving up.  Doctors sometimes forget the patient,

To Heather:  I know it hurts, sweetie, and I know its frustrating, but don't lose hope, and keep fighting.  You're tough, and your mom is one heck of a fighter.  Better days are ahead  ;D.

My prayers are with you.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 17, 2005, 04:13:46 AM
Hi Jess,

Yes, this doctor did a thorough examination and also said if it was what he thought the MRI should show it.  I told him that MRIs do not always show everything but he felt this would show.  My thoughts are that he most likely will want to do exploratory type surgery to see what is going on.  That's only my guess.  However, I don't know this doctor and, for that matter, don't know anyone in New York, but I would feel much more at peace going to the Hospital for Special Surgery where people from all over the country go.  They see many more patients than the doctors up here and maybe have seen a case like my daughter's.  I have made an appoointment for New York in the beginning of July and we will take it from there.  One way or another something is going to be done in July.  Reminds me of the song "That's Life" except that we're not going to roll up in a big ball and die - we're going to see this through and, hopefully, all shall work out well.  Thanks for your thoughts.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 17, 2005, 04:26:52 AM
Hi Swikle,

Thank you so much for your prayers and kind words.  I am happy that you are feeling better!  Hope you have a complete recovery.  This site has been wonderful in encouragement and knowledge and I, too, thank God for letting me come across it.  I truly believe that God is watching over Heather.  This morning I had to bring my car in for State inspection.  Last year they told me that I would need brakes, tires, etc.  I prayed before I left the house as I am using money saved for bills and Christmas to pay the initial fee for doctor in New York.  Well, I sort've pleaded with the dealership to go easy on me as I have hospital bills, etc. for my kid and after dropping the car off, they phoned me a few hours later at work to tell me what they found.  I asked them what it was going to cost and they said "nothing".  It passed inspection and to top it off for some reason I wasn't even charged for the inspection when I picked up my car!  I shouldn't say some reason, but I know God heard my prayer this morning.  Just wanted to share that with you.  I really feel led to take her into New York and wish the appointment were tomorrow instead of July.  Throughout this entire ordeal with Heather I have been stressed, worried, etc. which really isn't doing me much good but is giving me the energy to keep pushing forward until the right thing is finally done.  Heather read your note to her and giggled and nodded yes.  Thanks for writing.  You have been through a lot yourself and I admire your courage as I admire the courage of everyone on this website.  You and everyone here are in my prayers!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on June 17, 2005, 11:50:18 AM
Lisa,

     I was initially going to refer you back to my first three posts after reading the results of the meeting, particularly when I read about the severe spasms.  However, after doing a little research on Postero-lateral rotatory subluxations of the tibia, I have to hold back on some of that advice.  Frankly, the fact that your first doctor and the physical therapists didn't pick up on this condition, if in fact that is what she is suffering from, baffles me, and makes me wonder if the condition originally occured from the contact, or was a consequence of the time after injury that it wasn't corrected, because otherwise, once again, I wonder about these guys!  The article I used primarily was an article by doctors who are members of the American Orthopaedic Society for Sports Medicine, probably the most prestigious organization for those involved with sports injuries,  many of whom are members of the American College of Sports Medicine, my member organization.  You'll be happy to know that the New York institution you are planning to visit has at least four doctors that are members.  Check out their website by entering the societies name and read about their criteria-I think it will give you a lot of confidence in their abilities.  Let me know if you have any questions.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on June 17, 2005, 12:38:20 PM
Make that at least 14 doctors who are AOSSM members.  The website is "sportsmed.org".  I also checked out the Hospital for Special Surgery website by clicking on one of the doctor's links.  I agree 100% with your decision.  Try to contact one of the doctors individually; they may be able to get your daughter in earlier.  Good luck!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on June 17, 2005, 01:43:24 PM
Lisa:

God answers prayers.   I had to quit therapy because I couldn't afford the copays, so I know where your coming from.  Thank God I got a pamphlet from them on my first visit showing me the exercises.

Heather, keep that leg elevated and ice it often. Both on the top and bottom. I bought a few ice packs at my drug store and they are my best friends at times.  It helps with the pain.  Take those antiinflamatories, they help.  I hate taking pills, too, but I learned that they help.  Just take it one day at a time, you're going to get better.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on June 17, 2005, 11:18:25 PM
Teresa S,

     In response to your request for doctors in your area, I would suggest checking out the same website-  "sportsmed.org".  I know of one in Iowa City, John Albright.  You can do a search on the site.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 18, 2005, 06:01:21 AM
Hi Swikle:

Ice didn't seem to help her but in a few weeks we will get her on the road to recovery hopefully.  Hope you feel better.  Sorry to hear that you couldn't continue the PT but I certainly understand the financial side.  Hang in there.  We're all here for each other!

Hugs,
LIsa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 18, 2005, 06:15:39 AM
Hi Trekker,

We've got an appointment the first week in July.  Has to be then as we will get on the insurance they take July 1.  She's going to see the Chief of Pediatric Othropedic Surgery and then we'll take it from there.  I might phone one of the other doctors I've been reading about who works with athletes from H.S. level and up, though I would think any of the doctors there would be good - the hospital has a great reputation.  Until the appointment we just have to hang in there so to say.  Personally, I think that those other two OS we saw didn't know what the heck they were doing.  They went strictly by xrays, etc. that didn't show anything.  Unfortunately, because of their lack of knowledge, things probably got worse with her knee but I know it's going to get better as we're finally heading in the right direction.  Glad you agree with me 100%.  I'll keep the board posted - seems like a long time till July but it will come soon enough.  Poor kid is hurting every day but she's quite positive that her knee will be alright.  Keep us in your prayers please.  I appreciate all your researching for us.  Please keep in touch with any thoughts!  Hope all is well on your end.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Lisa Marie on June 18, 2005, 01:55:27 PM
Lisa,

My name is Lisa, too, so I hope this doesn't get confusing.  :)

I also have a 13 year old with a knee injury (first a dislocation, then a fracture). But my response is mainly about your PT experience. How awful! We were very, very lucky to have found a good PT right away, and I just want to describe how the experience can be. She greets us with a smile every time. She asks our son clear, non judgmental questions. She listens. She would never belittle him or make him feel he's making up a symptom. She keeps him company during all the "boring" exercises and talks about movies and books and whatever they can find in common to pass the time.

Especially for teens--and especially for sensitive teens--having a medical professional who realizes that the child may have worries that aren't being voiced but need to be taken seriously is crucial, IMO. It sounds as though you live in an area without many choices for PTs, but when you daughter returns to physical therapy, I do hope you can find someone better.

Best of luck with the surgery.
~ Lisa Marie
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 19, 2005, 03:03:45 AM
Hi Lisa Marie,

Think I'll write your middle name too, to keep it from getting a little confusing like I'm writing to myself:)  By the way my name is Lisa Maria (Maria being my confirmation name).  Anyway thanks for writing.  Sorry to hear about your son and glad to hear you have a nice pt.  The pt my daughter had was friendly, at least one of them was nice.  We had to see who we got.  There were 3 different pts in the facility. She had to stop pt because it was not helping her and hurting her really bad, which I can now understand as she was never diagnosed correctly.  Thanks for wishing us luck with surgery, if she indeed does need surgery.  We will know in July that's for sure.  Hope your son gets all better real soon!  Enjoy the weekend.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 21, 2005, 04:19:51 AM
Hi,

The doctor in N.J. phoned me early this evening and said he wanted to see the MRI films of my daughter's knee.  I told him I couldn't get there due to transportation.  I then proceeded to ask him if the MRI was negative what did he planned on doing.  He said he first wanted to read the MRI film to see if it indeed showed nothing (which it did show nothing) and then said he wanted to have her put to sleep -(go under) and see if her leg would return to normal and if it didn't he wanted to look inside and see if anything was going on and if nothing was wrong when he looked inside, he said it might be a neurological problem????  In which case he would refer her to a neurologist.  Well, this only makes me want to go into N.Y. faster.  I am not going to mention this conversation when I go into N.Y. as I want an unbiased opinion.  I was researching neurological testing and it is done when there's tingling, numbness (which she does have from time to time) and to rule out certain diseases like M.D. - God forbid - I'm telling you these doctors can make you crazy - the kid never had a problem until she got hurt in gym.  Just wanted to fill you in and see if you have any thoughts on this theory of his.

Thanks for being here for us.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on June 21, 2005, 12:32:43 PM
Lisa -

Just because the radiologist didn't see anything in the MRI doesn't mean there's nothing there.  I would never let a surgeon touch me who didn't read the films - not the report.  Can't the MRI center mail a copy of the films?  People do that all the time.  It sounds like the guy in NJ is a good OS.  Where is he?  I grew up in northern NJ, and know a lot of doctors up there.  Also - a number of people (generally adults) with possible nerve problems have had nerve blocks done as a test.  I think it was a shot into the suspected nerve.  If the pain goes away with the nerve block, then it's a nerve problem.  If not, then you know that the selected nerve is not the cause.  You may want to ask about that option before surgery.

When I went for my 2nd opinion, I told the doctor that he was a second opinion.  And while I didn't tell him the diagnosis I had been given (until he asked about it), I did tell him what made me uncomfortable and sent me looking for a new OS.  In my case, the first OS I saw (who may be a great surgeon, but is a terrible diagnostician in my book) looked at the x-ray and listened to my case history, then made a diagnosis.  WITHOUT TOUCHING MY KNEE!!!!  Now, I didn't like his diagnosis, and I really didn't like the way he made it.  My current OS did a very thorough evaluation, and told me his suspicions before sending me for an MRI.  AND he told me that the MRI may not be conclusive, especially due to my personal case history.  All of these things helped build my confidence.

Good luck in July, but don't hold your breath for a miracle.  This is not an exact science.  The good doctors admit that, do their best, and are honest in telling you when something is conclusive, when it's a suspicion, and what the expected outcomes of treatment will be.

Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on June 21, 2005, 09:40:18 PM
Lisa,

     The reading I did on Posterior lateral rotatory subluxations indicated that there is usually some damage to the structures, most commonly the MCL, I believe, and other structures may be involved as well.  If this is what she has and there is no apparent damage on the MRI, this is potentially good news, although as others have said, there could still be damage even with a negative MRI.  I think this has a lot to do with the skill of the individual reading the MRI, and maybe the angle; I don't really know enough about the technicalities.  Question-did any of the people she saw ever suggest a muscle relaxant?  If she's having significant spasm, the knee won't go back into place unless that is resolved; is this what the doctor is trying to do?  There is a way to do this manually, as I mentioned way back, but at this time, wait until HSS.  By the way, she definitely has a neural problem, although in this case it is because the nerves are causing the muscles to continually fire, causing the spasms (effect, not cause, meaning it is a result of the trauma, not the cause of it.)  In my view, a neurologist wouldn't be able to do anything, unless he can relieve the spasms.  The tingling and numbness is probably caused by the spasms and the pressure or pull on the nerves caused by her knee being out of wack.  I wouldn't let that distract you from the primary goal, and that is getting her knee back in the proper alignment.  If there was damage to the nerve from the trauma, there's nothing you can do at this time until that happens.  Hang in there.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 22, 2005, 03:56:24 AM
Hi Jess,

Thanks for writing.  I know MRIs don't always show things and yes the doctor in NJ seems genuinely interested in my daughter but I am going with my gut and that is to New York.  They have seen many more cases for sure than the doc in N.J. re injuries, etc.  And no I am not expecting a miracle, but I do fervently believe in miracles - don't know if this requires a miracle but I do know that God has His hand on the entire situation and it will be resolved in His time - thinik it requires excellence in the field of orthopedics which I truly believe we will find in July.  Will keep you posted!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 22, 2005, 04:08:30 AM
Hi Trekker,

Thanks so much for all your research!  I don't really recall if anyone suggested muscle relaxants.  Probably not a  bad idea.  Those first two OS's wanted her to walk with full pressure - unbelievable!  Anyhow I am putting the neurological stuff out of my mind for now and just forging ahead to the HSS and bringing all the MRIs and xrays I have with me so they can read them.  She's been having bad pulling pains as she puts it a few times a week.  Today being one of them she told me and she said she was crying when I was at work and took a Naproxin (Alleve) yet she says that really doesn't help, but she doesn't seem to stay in awful pain for long.  I agree with you that the alignment is important.  Funny thing, last night when she was sleeping I was going to try and look at her knee to see how it looked (this was the suggestion of the doctor in NJ when he spoke with me on the phone last night).  I couldn't get to do it as she was sleeping on her right side (the side of the injury - hmmm) and she was curled up in a fetal position with both knees bent??  So it was sort've impossible to roll up her pajama pants to see her knee - it would be interesting to see if it looks normal when she's relaxed.  Yet I can't understand why the doctor in NJ thinks it might go back into alignment when she's put under because as soon as she gets up it probably would go right back?  Don't know if I'm making any sense.  At any rate, I am definitely "hanging in there" as you say - HSS has a wonderful reputation as you know and hopefully we will get some concrete answers soon.  Thanks again!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on June 22, 2005, 01:42:03 PM
My Os thinks I bend my knee fully while asleep. He insists all my problems are muscular but quite frankly I don't believe him.

Worth getting her to wear a nightie rather than PJs to try and get a look though. You would have thought her trounble would be not so bad when she first woke up if it was a relaxing problem.

I really feel for you. It's worth getting as much info as you can before they put her underanaesthtic though

Take care of you and her.
xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 22, 2005, 11:05:14 PM
Hi Sparkle,

Great idea!  I just gave her something to wear so I can see her knee when she's asleep.  Only hope she doesn't curl up on her right side (smile).  I'm sorry to hear that you're still having problems.   Hope you get all your problems resolved soon!  I know so many people here are going through so much with their knees and I feel bad that I can't write them all that I'm thinking and praying for them.   But I am definitely praying for everyone on this site.  Will let you know if I see anything when she's asleep.  Thanks again for the idea. I probably never would've thought of that - not that it's going to solve anything but it will be interesting to see if it does look normal.  I looked at her this morning right when she was sleepy and waking up and her knee was to the side as usual but will take a peek tonight:)  By the way, did anyone look at you when you were sleeping?  Take care.  It's gotta get better!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on June 23, 2005, 09:38:18 AM
yes, my hubby says I don't move at all, and when I do I wake up with pain. My OS is just wrong in this case. Wish he wasn't ...but that's just how it goes. Interestingly, when I was under anaesthetic, my OS said I has full ROM which I don't have anything like when I'm awake, but it's more complicated than just being a relaxing issue. There's speculation that my muscles have learnt incorrectly since the injury and fire wriongly, causing problems. My PT (who i regard very highly as she does so much for me) thinks there is much more soft tissue damage than my OS says and she has worked wonders improving my ROM, gait and strength. I do hope you get some answers soon.

By the way. Why do our children just look soooo angelic when asleep and all sleepy in the morning? They look so wonderful all relaxed and dreamy.
xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 24, 2005, 02:22:43 AM
Hi Sparkle,

Heather was sleeping on her back at one point last night and I looked at her knee and it still looked turned to the side, but then she got up within a minute to go to the bathroom (she's a very light sleeper) so who knows if she was totally relaxed or not.  You sound like her as she sleeps through the night and wakes up in pain too.  Guess maybe strengthening your muscles will help.  And yes, children do look so angelic when they sleep and when they awake all sleepy - probably their youth and innocence - yet when they are fully awake they're far from angels:)  Probably their guardian angels watch over them as they sleep - and it's no wonder as it says God loves the children the best!  Sorry to get spiritual on you (smile).  Talking about sleep, it's soon time to get my two to sleep, except my son is watching the NBA finals and God knows how long that will take - (personally basketball is my least favorite sport lol).  Don't think I'm going to check her knee tonight as she wanted to put on her pjs - said she's cold as I have central air and she prefers it warm - don't know where she gets that from - not from me that's for sure :)  Hope all your problems got resolved soon - gosh I never knew how puzzling a knee injury could be before now.

Have a good night and a better tomorrow!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: bubbly_aqua_babe on June 27, 2005, 01:29:36 AM
just wondering what the original injury was cause i 2 days ago i dislocated my patella and i have had no history of knee problems

so your post has made me slightly parannoid about the physiotherapy that i will begin when i am out of the zimmer splint
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on June 27, 2005, 04:40:52 AM
Hi Bubbly,

Don't get paranoid - you might have a totally different injury than my daughter.  Her injury occurred when another child fell on top of her leg in gym class at school.  Don't know what happened to you but if you have confidence in your OS than see what happens with therapy.  I wish I had the answers for my kid, let alone for anyone else, but you have to go by how you feel.  Good luck with the therapy.  I hope your problems get resolved quickly and that you will have good news to post!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on June 27, 2005, 01:08:19 PM
Bubbly, every knee is different, and everyone's reaction to therapy is different.  I won't lie to you, therapy hurts.  I dread doing my exercises twice a day, but I grit my teeth and do them, because my flexion has improved greatly.  Let your therapist know what does and doesn't hurt, and remember to ice the knee afterwards to ward off inflamation.  If you have a goon antiinflamatory, take it before therapy, it helps.  It's good that you're getting help early.  The older you are, the more time it takes to "recover".
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 06, 2005, 03:38:31 AM
Hi,

Just wanted to ask for prayers tomorrow 7/6 for Heather.  Hopefully when we get home from New York I will be posting good news.  Been real stressed waiting for this day to come but now it is finally upon us.  Will post when we get back.  Thanks for all your support and encouragement!

Hugs,
Lisa and Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Sharon on July 06, 2005, 04:29:42 AM
GOOD LUCK LISA AND HEATHER!!!!!!!

I hope everything goes well in NY and you're able to get some answers. Just don't get too nervous. The doctors at HSS are wonderful and I'm sure Heather is going to get the best treatment possible. I'll be thinking of both of you and am sending lots and lots of good luck vibes your way!!

(((Hugs)))
Sharon
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on July 06, 2005, 05:50:02 AM
Lisa , thanks for letting us know about the appointment. You log on name should be Wonderful Mom not upset mom.. I am sure Heather knows you are doing the best thing for her. YOU are doing awesome !!! And the Good Lord knows it too. You have my Prayers as you know. Big Hugs for you and Heather... Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on July 06, 2005, 01:24:18 PM
Lisa,
 
Best of luck to you and your daughter today at your appointment. I sure hope you can find something oout and get her on the road to recovery!!! And a pain free life of a teen!!!!

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 08, 2005, 03:59:21 AM
Hi everyone,

Thank you for all your prayers and wishes!  I don't know where to begin.  Unfortunately, we still do not have an answer that is concrete after our visit at HSS.  We saw the Chief of Pediatric Orthopedic Surgery who looked at the MRIs I brought in before coming into the examining room.  In my anxiety before leaving for New York, I had packed all the MRIs, etc. except for the last one of her knee, which was "normal".  I told him I had a CD of it but he didn't want to see it.  I know this hospital has an excellent reputation but the doctor was very cold, didn't look in my eyes when speaking and said that all the MRIs. bone scan, etc. showed nothing wrong.  He had Heather lie down on the examining table on her stomach and bent her knee up and she started crying in pain.  I said she's in pain and he said very matter of factly "I know".  Then he had her stand up and told her to push her leg far back.  Her knee was still over to the inner side.  He then said to me her leg is not deformed.  There is no deformity.  When I asked him why her knee was to the side he said that is how she is comfortable.  He sent her for an xray and then told us to come back.  The xray was "normal".  He then asked me who we saw and I proceeded to tell him the doctors and "tried" to tell him what each said, but he didn't want to hear any of it - he said he wants her to go see a pain specialist to rule out RSD (Reflux Sympathetic Distrophy) which he didn't think she had but he feels that she is favoring walking the way she is.  Oh, also when he bent her knee up he asked what hurt her - the knee or the hip - and she said both and he said it can't be both - it's one or the other - which one is it.  He seemed quite impatient with her.  I asked him again why her knee looked deformed and he said it wasn't.  I said why are you sending her to a pain specialist and he said that you've been to all these doctors and have taken all these tests and nothing is showing up.  He sent her for some blood work and told me to phone one of the two doctors he recommended.  I phoned the one from Cornell and have to wait for the appointment to be scheduled.  I told him that I came to him because of the wonderful reputation this hospital had and that I was reading on their website a testimonial about a woman who had normal mri's and when she came there they did another and they found something.  He just shrugged his shoulders and didn't respond.  He said if it was an orthopedic injury it would have manifested after all this time.  That's more or less what happened.  Charged us $375.00 and walked out of the room.  So this is where we stand now - I researched on the web RSD and to me it doesn't appear that Heather has this.  I believe he said the pain/anesthegiologist (spelling) might send her to pt and when I asked if they could work with us up in PA as I couldn't take time off from work to travel to NY for pt - he said he highly doubted that but I would have to ask the other specialist.

I wish I had some really great news to report but this is where it's at.  Thank you all so very, very much for all your support and prayers - we need it more than ever.  It's very frustrating as you can imagine.  He also felt she's been on the crutches too long and when I said she falls without them, he said well she hasn't been using her leg for so long that is why - and I can understand that part of what he said.

Will keep you all posted.  Any thoughts or opinions would be appreciated. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on July 08, 2005, 11:55:00 AM
Lisa,

      Over the next few days some of the replies you get will share their frustration over your visit, empathize, tell you to hang in there, and offer their prayers, and that'll be it.  I'm not going to be one of them.  It's time for some tough love.  Is the doctor you saw Roger Widmann, the head of the orthopedic pediatrics dept.  For all his accolades, this guy is just a surgeon.  Of all the doctors they have over there that are members of the American Orthopaedic Society of Sports Medicine, you managed to get a guy who is NOT a member!  You know, a knee is a knee is a knee!  It doesn't matter if it belongs to a teenager or an adult, it has the same structure!  This is my suggestion to you; if the guy from Cornell is not a member of AOSSM, dump him!  Then call the hospital, and complain that you felt you did not get a proper evaluation of your daughter, and for the money you spent, you expected a lot more.  Ask for a second opinion at no cost to you to compensate for the incomplete assessment.  My suggestion is for you to ask for Robert Marx, and email or call him directly.  Tell them if you don't get a second visit, you will post a complaint with the appropriate organizations, as well as posting on this site about the poor treatment, among other possible options.  You have a powerful tool at your disposal; the internet!  It's time to get tough; no more being brushed off when you have questions, incomplete assessments, etc.  If they don't know what the problem is, ask them why the other doctors and therapists have made the assessments they did;  don't settle for less than a direct answer!  You MUST be more strong-willed when you see these doctors; demand an assessment, and at the very least a differential diagnosis, where they give you a number of possible reasons for the problem, followed by steps to a final diagnosis.  Do NOT wait on this; do it today!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on July 08, 2005, 12:34:59 PM
Lisa,

I agree with the previous poster - something seems wrong here.....I have never been placed on my stomach for a knee assessment...

Hope this gets corrected.

Shade
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 08, 2005, 01:02:26 PM
Hi Trekker,

Yes, the doctor was Roger Widmann.  Thanks for your input.  He listened when I told him the first doctor told me her leg always looked like it did and more or less the second doctor found nothing wrong with all the tests he took.  I didn't go into specifics on the doctor in New Jersey as I wanted an unbiased opinion.  However, the way this Dr. Widmann was acting, brushing us off, I feel he still would've had the same opinion.  After I come home from work today I will call the office of this pain specialist at Cornell and ask if the doctor is a member of the American Orthopedic Society of Sports Medicine.  Plus, I am going to take your advice and phone HSS.  Now please tell me who Robert Marx?  Is he an OS or a higher up there whom I should state a complaint to?  It seems to be very hard to reach who I want to by phone when I call there.  You are definitely right, my daughter should've been given a thorough assessment and we should've been spoken to in depth, especially for the price of the visit let alone the distance we traveled, etc.  Thanks again for your "tough love" input.  I guess I have been through so much with this, I have been too complacent.  I really expected HSS to put my mind at rest, or at least lead me in a direction I was comfortable with.  Basically all this Widmann told me was what I had been hearing before we came to him, and ignoring my statement that we came to HSS for an answer as we were not getting any.  Speak to you later, have to get myself ready to leave for work. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on July 08, 2005, 01:22:50 PM
Lisa -

Sorry you didn't get what you hoped from from HSS.  It brings me back to a couple of questions though, and I no longer remember if you've asked these questions, or had them satisfactorially answred.

#1 - Have you had an OS look at your daughter's hip?  If the hip is messed up, it could be a direct cause for the knee.  Have they taken x-rays and MRIs of the hip?

#2 - Have you considered consulting a chiropractor?  Sometimes our joints just get out of whack.  It's not something that's wrong with out basic structure, just out of whack.  And it is more common than lots of people think.  And hips are very likely to get out of alignement.  In additioni to pursuing orthopedic options, you may want to take your daughter for a chiropractic evaluation and adjustment.  As a non-invasive procedure, it's worth a shot.

#3 - I don't remember how long it's been since your daughter was in physical therapy.  If at least one of the doctors believes some of her troubles walking and weight bearing are the result of a lack of muscle tone, it may be time to start some home exercises, or find a therapist or trainer who can help develop a simple routine to start strengthening the muscles.  PT is difficult, and it can be a little painful.  You should not be in agony as a result of any exercise, or having the knee bent, etc. but lots of people take a painkiller/anti-inflammatory before heading out to a PT session.  The entire purpose of PT is to push the muscles and joint just a little bit further, to work just a little bit harder, each time.  She should not leave the session crying, but it's not uncommon to feel a bit sore, tired, achey.

For some reason, I have a feeling that chiropractic treatment may help your daughter.  Don't know why.  A lot of chirpractors also have x-ray equipment, and they tend to take a more holistic view than traditional MDs.  A chiropractor is far more likely to review the hip/knee interaction, as well.

I wish you luck, and a happy resolution soon.

Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on July 08, 2005, 04:22:53 PM
Lisa:  I'm sorry you were treated so badly by the OS.  :'(   I agree with Trekker.  You sometimes need to be forceful to the doctors when they attempt to brush you off.  My regular doctor says he knows he's in for a fight when I have an appointment, because I question everything.  I actually bullied him into giving me a referral to my OS, because he didn't think I hurt my knee that bad.  A lot HE knew.  Anyway, always be ready to question the Doctor.  Sometimes they forget they're dealing with a human being.  If one doesn't give you the answers you need, demand to see another Doctor then and there.  We all know you're a fighter.  Also, Heather needs to exercise that leg, because muscles atrophy quickly when they're not being used.  Just remember the anti inflamatories and ice packs.  Have you considered a possible nerve pinch?  I know that irritated or pinched nerves can refer pain to other parts of the body.  I also have had sciatica, and it made my right leg turn inward before I got treatment for it.  (that's a whole other level of hell).  Keep us posted.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on July 08, 2005, 07:39:08 PM
Take this for what it is, MY OPINION, as I have been through multiple experiences similar to you and your daughter, and I am nothing, if not out spoken, and educated, and  demanding. BUT IT JUST DOES NOT WORK TO WALK INTO AN OFFICE OR HOSPITAL< UNKNOWN TO THEM AND DEMAND THIS AND THAT, all that will get you is a softspoken social worker, or similar to inetervene, and try to make peace or a dr. who gets pissed off and walks out of the room, and makes it known to any and every one who reads her medical record, his opinion that you do not listen and are looking for something that does not exist, and then list the reports that YOU provided him with that say so. IT will go on to say something to the effect that you are doctor shopping for the one who will provide you with what you want and make you the villan, from babying your daughter by letting her use crutches to dragging her from dr. to dr. The best way to get an unbiased opinion is to NOT take previous records or reports. Though I understand that you do not want the expense of repeating unnecessary tests, etc. it works against you for him to read the already established reports regarding MRI etc. YOU could take the MRI itself, but no report and have him look at them himself. Other dr. records, give him the same thing you have already heard, and he establishes an opinoin BEFORE examining her.  RSD is the biggest cop out for OS , in my opinion, for pain that they cannot explain, and don't want to take the time to look for an explanation. I once told my physicain it must have been a big article in that months ortho journals, as so many were using it for so many different issues.
I have been to three well known , respected physcians, listed on this site, and got worse treatment.  I went to the director of orthopedic surgery at the Univ of Kansas, and he was somewhat interested UNTIL he read my medical records, and then asked me :"AM I correct in saying you have already had 10 surgeries on that knee?" I replied, Yes, but ..." and he interrupted me to say : "at this point, then, I hope your knee will get no worse, but will probably never get better, and " then went on to toot his own horn by telling me all the articles and journals he is published in, and how many orthopedic surgeons refer their patients to him. When I tried to explain that 6 or 7 of the scopes were to clean up the MRSA infection that I developed from one of the surgeries, he was not interested. I then called an office and asked for a physcian that was suggested to me on this and another knee site. I was given an appt with a partner "who had the same interests." HOWEVER, when I traveled the 200 plus miles to see him, found out he was right out of residency, and had no real experience, so I asked to see the guy I wanted in the first place, and was told "we don't switch among the doctors in our practice, however, all are availabe for consult to each other." end of discussion, even though I , again, tried to explain, that this was a complicated case, already with a total knee and revision, I was told NO' SO I went to the Univ. of MO. saw the physcian who has been part of the ongoing FDA trials for new knee and researched and invented a navigation system of putting in the prosthesis, and all kinds of research. HE said "you have a knee with a less than satisfactory outcome. that knee needs to come out of there, make sure there is no infection, and be replaced. BUT I AM NOT LEGALLY RESPONSIBLE FOR IT> GO BAck to the guy who did it. " THEN went on and on and ranted and raved about how he was going to lawschool, and he didn 't do the surgery, so he was not responsbile. THEN promised to email me a list of appropriate surgeons, but instead, sent me a letter stating he was not legally responsible and would not see me again, as I had a surgeon.

THE POINT BEING here, that somehow, the patient and the injury, or whatever, gets lost in the politics of medicine. NO LONGER do we have caring, soul searching physcians, who put the health of the patient first, and politics, insurance, fees, behind that. Patients are much more plentiful than physicians, espe. good ones, and it is the patients who have to put up with the crap. IS it right? NO .Physicians are turning down patients that they feel the outcome is questionable or may be poor.Many are writing books complaining about each other. From the time they enter medical school, drs. are told to never never tell the patient "I don't know", You also have to remember, that by and large, the ones who enter medical school are already adacdmic achievers, above the rest, taking courses they might not otherwise be interested in to get into medical school. So they are already, competitive, perfectionist compulsive and don;t want to admit mistakes or feelings. SO in their practice, they keep doubts and mistakes to themselves and don't ask for help, even if they need it, instead refer to different specialty. Med schools fail us because although they can  educate almost anyone to cut and sew, and make diagnoses based on criteria, they can't seem to teach them how to treat others with respect and understanding, supporting patients gently and emotionaly while still helping them to honestly deal with what is at hand.BY med school it is too late, as these values should have been learned as children. I encourage you to support your daughter, and hope you find an answer, but you will have to work with what is offered to you, IF YOU IGNORE THe suggestions, soon they will provide you with none, and accuse you of not doing what they suggested so they cannot help,. I agree that not all sources of pain can be identified by MRI or CT, or xray or blood work. and looking for and finding the one OS who can help will be trial and error.  BUT threats don't make good relationships.
I received bills for amounts that were 4-5x the amount my insurance has for my yearly out of pocket, and when I called the UnIV of Mo and tried to explain all of this they kept telling me that they billed what the insurance said to bill. I tried and tried to explain the mistakes, but he would not listen, I finally got somebody at my insurance com who listened and understood, and then redid all the accounts, and I came out owing almost $3800 less than I was being billed for. WHEN I got the next statement, the amounts were changed, but no letter of acknowledgment or explanation of apology. I was right, but it was ignored. I wish you success in your venture. I also hope you take the same amount of time helping your daughter to exercise, and keep her muscles from atrophying. NOT using them will contribute to her not being able to use them. Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on July 08, 2005, 10:12:03 PM
Well put, Teresa S.; good summation of what's screwed up with our medical system!  And the point about letting the doctors come to their own conclusion without other reports is a good one!  Maybe there's a "good ol' boy" network where they won't step on anothers fingers for fear of encouraging litigation.  I definitely do not think Lisa should march into the hospital and demand anything; instead give them a choice.  They may not like the choices, but, hey, that's life!  Lisa, if the guy at Cornell is a pain specialist, he's probably not a member of AOSSM.  Robert Marx is an orthopedist and is a member; my suggestion is to get an appointment with him.  What info he would bet from Widmann and how that would influence him is hard to say;  what you need to state is that you are looking for a doctor who will take a complete history and perform a complete, UNBIASED assessment.  I do not know him personally, but from what I can see of his background, I believe he would be a good guy to see.  Try emailing him; I believe it's listed on the HSS site; if not. try "sportsmed.com".  Good Luck!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 09, 2005, 03:43:09 AM
Hey Trekker,

It is not Cornell - it is Columbia Presbytarian (spelling?) - my mistake.  I phoned there and the doctor, as you know by now, is not with the AOSSM as he is a pain specialist/anesthesiologist.  Tried researching him on the web but couldn't locate him - his name is William Schechter in case you have the time to research.  I was thinking along the lines of a Dr. Wieckowicz (forgot the correct spelling, but you will find him on HSS site too).  My only concern is that I cannot afford to pay another $375 for an appointment.  So, I don't know how to go about this.  I agree also with Teresa that making waves sometimes goes against the patient, though I am thoroughly upset with the appointment with Widmann.  I am going to wait for him to complete his written report on our visit which we need anyhow to see the pain specialist - and then somehow get to N.Y. to obtain a copy of the report for my records - have to sign that HIPPA form to get it.  I, too, don't know how another doctor from HSS will react to the report of this Widmann guy.  My gut feeling is that they will all side with each other being from the same staff.  I am beginning to think about taking her to a chiropractor up here since they can't seem to find any injury.  I am very concerned about atrophy (spelling?) and want to see her exercising.  Then again, I wonder if they are not just missing something.  Everyone, except the doctors, with the exception of the doctor in N.J., thinks there is something wrong with her leg.  It is obvious to the naked eye.  I agree Teresa that they just push you off to another specialist when they can't come up with an answer. 

I'd like to thank everyone here who has sympathized and prayed and wished us well.  Right now, I am a little stressed, to say the very least, and can't post individually to all though I would love to.  My mind is racing in a thousand different directions on what to do next.  You would think with all the prayers we had going and believe me it was a lot - I had a group of contemplative catholic sisters - to whom I once belonged before having my kids, praying for us - that we would've gotten an answer that would've made sense.  On the light side of this visit, I had a chance to visit them after 20 years since I left.  They actually put us up for the evening.  Okay enough of side-tracking. 

Well, I am out of thoughts for now, so am going to end here.  By the way, Trekker, not to be inquisitive, are you male or female - just curious as it doesn't say on your profile.

Any thoughts, suggestions or insights anyone would have would be really appreciated.  I am sort've at a loss right now but I know someone, somewhere, somehow will hold the answer to all of this.

Wishing you all a pain-free, care-free weekend!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Sharon on July 09, 2005, 05:02:13 AM
Hi Lisa,

I'm sorry that the visit to HSS went so badly! The treatment that you and Heather got from that OS is really terrible! I mean I know that alot of OS's are very businesslike and quick in their work as they are quite busy. But considering the distance you travelled, the fact that this man is the head of the pediatrics department and in dealing with children should be a little less businesslike and a little more child and parent friendly and the amount of money you had to pay for this appt, he really could have been a bit more helpful and not brushed you off in the way that he did. I would definitely recommend that you call someone at HSS, explain what happened and how unhappy you were with the treatment both you and Heather recieved and let them know that you want to see a doctor there who won't blow you off and will listen. If you want to take her to see Dr. Wickiewicz the best thing I could recommend is to call his office and explain the situation. You might even want to mention your concern in him not giving a truly honest opnion and just siding with what his colleague wrote in his report. Both his office manager and nurse are wonderful and have been so helpful to me with everything in scheduling my surgery and making sure that I get a brace that fits me correctly(I'm really small so it's hard to find one that's not too big.) And just so you know, on my consult with him the charge was $300 so it was a bit less although I know it's still alot of money to shell out. Call the hospital first, let them know what happened and how unhappy you are and see what they'll do for you. Or you might want to consider trying to take her to a chiropractor for an opnion before you decide to see another OS. I know how hard and how stressful this is for you and for Heather too. It sounds alot like some of the OS's that I've seen and it is a case of they don't have an answer so they just tell you that there's nothing wrong figuring that you'll just go on to get another opinion. I've noticed with alot of doctors that I've seen that they can't stand to tell you that they don't know what's wrong or can't figure it out so they'll just tell you that nothing's wrong. It's a terrible thing and there are plenty of doctor's who AREN'T like that-the problem is weeding out the ones who are from the ones who aren't when you're trying to find the one who will be the best for your daughter. I know you're really stressed right now but know that we're all here for you along the way to give you advice and support. Good luck and keep us posted on what you decide to do next.

:)
Sharon
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 09, 2005, 05:43:55 PM
Hi Sharon,

As of this moment, these are my thoughts.  Of course they are given to change at any time:)  I think I will wait for the report to be written by this doctor we saw at HSS.  Then, make an appointment with the pain specialist in Columbia Presb. to rule out this RSD thing.  I am also going to get a copy of the report from HSS.  I am figuring if I complain right now about the visit it might change how this Widmann writes his report.  RSD from the little I've researched can go into remission if caught in the first 6 months.  So, even though I don't think she has this, I don't want to play around.  However, after seeing Widmann, I am not so convinced to believe anyone he is sending us to!  Widmann said that we had to go to the guy at Columbia because he is tops in his field.  Well, supposedly so was this Chief of Pediatric Orthopedic Surgery!!  Actually Widmann didn't think she had RSD but still wanted to rule it out.  Next or perhaps first, I am going to bring her to a Chiropractor up here.  We have to wait for her insurance card - I just found out that they didn't have the paper work and she was not on the Aetna system - so I faxed it to them.  This should take about 7-10 days for it to go through, even though she was covered as of 7/1.  Regarding seeing Wickiewicz - I can't pay another $300 - so I don't know what to do.  The pain doctor takes Aetna, I believe so that won't be as costly.  But I definitely will call HSS and state my feelings, telling them the distance I traveled, the amount charged for such an uncomfortable and upsetting visit - etc. etc.  Thanks for your concern.  Will keep you posted.  Sorry I wrote this sort've rushed - guess my brain is on overload:)

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Jeatmonkey on July 10, 2005, 03:18:56 AM
Lisa,

Hi, I am so sorry that you did not get the information you were looking for at HSS.  I was actually in the city on the same day for I think my 5th opinion lol :P.  I just wanted to throw something out there since it doesnt seem that anyone else has brought it up.  Has any of her doctors ever mentioned the possibility of a rheumatic disorder or the idea of seeing a rheumatologist?  Or even a possible connective tissue sort of thing.  I believe you said it was an injury that brought all of this on, but maybe the injury could have aggravated an allready inflammed joint that your daughter wasn't even aware of?  From my personal experience a lot of OS's are not very well informed on a lot of rheumatic conditions and maybe this is why they arent finding anything?  I may be way off target here but I thought I would throw it out there since no one seem to know what is going on.  I've had a lot of orthopaedic injuries and it turns out they are secondary to an underlying connective tissue disorder.
Hope it helps some.. wishing you and your daughter better pain free days  :)

-Steph
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 10, 2005, 07:07:38 AM
Hi Steph,

I don't think it's a rheumatoid condition playing any part in this.  Though months before the injury she was sick with a cold type thing and was given zithromax antibiotic.  All of a sudden her nails turned bluish.  The doctor ran several blood tests on her for raynard's syndrome and said her rheumatoid factor was fine but that she had a common raynard's syndrome whereby when she gets cold her fingernails turn blue in color and he said there are lots of people that have this and they wear gloves, even indoors, at times.  I really don't know why this doctor is sending her to a pain specialist, other than that he probably doesn't know what is wrong with her leg.  The thing that bothers me the most is that her knee is turned inward and it is so apparent to all my friends and acquaintances, yet the doctors seem to pay it no mind because of the negative tests they've run.  There was one doctor who thought just as I that something is definitely wrong with the way her knee looks, but yet the mri he ordered was negative too.  I just can't understand how nerve damage, if that is what this is, could make a leg look completely out of whack.  I can see if the knee turned inward after several weeks of being off of her leg but it turned in about 1-2 weeks after the injury.  But, thanks for trying to help figure out what's going on.  Hopefully, I will get her to a chiropractor this week to see what he says.  I have heard some very positive feedback on chiropractors although I am not a believer of them personally, but I'm game for giving it a shot.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: jillo on July 10, 2005, 07:43:03 AM
Dudn't you see one OS who had some idea what was going on prior to going to HSS or who at least didn't tell you tehre was nothing wrong?  In NJ, maybe?  I would return to that person.  My experience with the big teaching hospitals has never been particularly positive, compared to the care I've received from two OSs who had small private practices.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 10, 2005, 11:48:55 PM
Hi Jillo,

Yes, I have been thinking about the doctor in N.J.  Never went back to him to bring him in the MRI which was negative.  Also, I changed health insurance.  I don't know how upset he will be if I tell him I went to N.Y. for yet another opinion.  He really thought something was wrong and that it would show up on the MRI, but it didn't and then he said he wanted to place her under anesthesia and see if the knee would go back (which I don't think it would've) and then scope it and then if the scope didn't show anything, send her to a neurologist.  When I asked him what the neurologist would be looking for, he said he didn't know as it was totally out of his field.  At least he was honest.  I don't want her to be scoped if it's not necessary.  That is why I went on to the doctor in N.Y. and he didn't think she needed to be scoped either.  He never gave me the opportunity to tell him what the doctor in Jersey said, but I think I mentioned it and he didn't seem to care one way or the other.  Guess he thinks he knows it all or, more likely, because he doesn't know what's wrong is shipping her off to a pain specialist.  What gets me is that he didn't think there was anything strange looking at the way her leg looks.  Unbelievable!  But thanks for the suggestion, I am still pondering what to do.  Let's see what a chiropractor says. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on July 11, 2005, 02:44:19 AM
Naturally, I don't know what your daughter's knee looks like, but I think what the last dr. meant was that she had somehow held her knee in that position for so long that it is now how her leg is. Maybe that is why she has so much trouble walking, but nothing actually made it happen, and the knee is not actually injured. IF she has some how subconsciously held it that way to relieve pain some where else and it became a self conscious thing where it stays there. Hope that made some sense, I am just saying I don't know if they will find a cause for why it looks strange. Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 11, 2005, 04:27:31 AM
Hi Teresa,

Interesting analogy that she is subconsciously keeping her knee like that.  It's just hard to imagine that's what it is.  Her knee is off to the side where it looks like the back of her leg is to the side too.  That's when she first encountered the bad pain when it went to the side so I can't possibly imagine her feeling comfortable like that.  She said the pain didn't get bad until her knee went over.  Perhaps the doctors are thinking as you are.  It certainly sounds like they are, except for one doctor.  If I do go back to that doctor, and that is a big IF, I would probably only allow him to put her under and see if he could manipulate her knee back but I am not for an arthoscopy at this point.  Guess I am just thinking out loud.  Thanks for your input.  I am hoping we will get to see someone soon that will prescribe a good pt program for her.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on July 11, 2005, 12:48:42 PM
Lisa,

     Male.  By the way, I do not know the EXACT way that Widmann manipulated your daughter's knee, but here's a newsflash for the good doctor; you CAN feel pain in both the hip and the knee!  Hard to believe he said that; I'd really like to email this guy, but I'm waiting till you decide what you want to do.  I work with a lot of female clients, and unfortunately some of these doctors really seem to have a lack of respect for females, or at least do not seem to take them seriously.   Teresa S. may be right about her interpretation of what Widmann said, but, sorry, that's still not an answer, and certainly not worth $375!  If that was the case, then he should have given the reason for the leg being like that in the first place.  Seriously, he sounds like a scrub with an answer like that; that's what they teach in Med school?  Anyway, will stay tuned as to your decision.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: John1 on July 11, 2005, 01:45:13 PM
Hi Lisa,

I've been following this thread since the beginning. Like everyone else here I am hoping for your daughter Heather to get well soon. I'd like to point out the possibility of an ACL injury and give my opinion on your future options.

Here are some observations related to the ACL:
The anterior cruciate ligament (ACL) is one of the ligaments (along with the PCL) in the middle of the joint that attach the femur to the tibia. The ACL provides the primary restraint for anterior movement of the tibia relative to the femur. The ACL's other important role is to help rotate the tibia laterally during the last 30 degrees of extension. This is known as the screw home mechanism. The screw home mechanism is disrupted with injury to the ACL.

In a previous post you wrote out a doctor's notes. Part of it said "She has no gross Lachman, unable to do an anterior drawer and unable to do a pivot shift due to the spasming of the knee." The Lachman, anterior drawer and pivit shift tests are the three tests that doctors manually do to see if the ACL is torn. He was not able to do two of these tests because of the spasming.

MRI's are usually pretty good at diagnosing ACL tears but can occasionally miss them. It may be more difficult to diagnosis in children using an MRI. Also, partial ACL tears are more difficult to diagnose with an MRI.

Early on, Heather said the pain was in the middle of her knee. This is where the ACL is. You also keep saying that her knee looks rotated. I'm wondering if she could have torn or partially torn her ACL when the boy fell on her knee. Usually there is a lot of swelling with a tear, but perhaps if the tear is in a certain location it won't swell as much, and there are cases of undiagnosed ACL tears. Also, if the ACL was torn initially, this could have led to a torn meniscus from the misalignment of the bones.

I know someone who had an undiagnosed torn ACL and the MRI showed nothing even though she had a lot of pain. The doctors kept saying nothing was wrong because the MRI showed nothing. Finally, a doctor diagnosed the torn ACL.

This is something that you could look into, and others could comment on. I'd like to know if I'm all wet.  :)

Concerning your future options:
It seems like you are between a rock and a hard place. If doctors can't make a good diagnosis, then you will eventually be forced to go have the arthroscopic surgery. You don't want the surgery if it's not necessary, but you also don't want to have to wait to see more doctors that probably won't diagnose the problem, and even if they do there's a good chance you'll have to go to surgery anyway. All the time you are doing this the knee could get more damage.

I hate to say it, but it may eventually come down to "rolling the dice", going into surgery and hoping they find the problem. The risk in this is if the surgeon doesn't find much but decides to do some procedure that makes things worse. I don't like when it's all up to one doctor to decide what is best. It's better if he or she can consult with other doctors during the surgery if they find something unusual. The benefit to surgery is that they can directly see if there are meniscus, articular cartilage or ligament injuries and go from there.

I wish you and Heather well,
John
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on July 11, 2005, 02:04:49 PM
Lisa -

I'm glad you're considernig the chiropractor.  I have seen chiropractors several times - and NEVER for a back problem.  Once for a hip problem, once for an ankle problem, and once for my knee.  The fact is - the alignment of our body is critically important to our functioning.  Additionally, the spinal cord carries messages from all of our nerves to our brain.  So one disc out of alignement can actually alter the message the nerves are actually sending to the brain.  Since it's also relatively inexpensive (compared to surgical consults and surgery) it's worth the time and effort.

You also recently said that you'r daughter's kneecap moved position 1-2 weeks after the original injury.  The quad is the largest (I think) muscle in the body.  It is VERY quick to atrophy.  If you're duaghter was not putting weight on the leg, and possibly carrying herself differently to accomodate the pain, this muscle atrophy could cause the joint to function differently.

I don't know what the answer is.  But I hope you find one soon.

Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on July 11, 2005, 09:34:49 PM
Lisa,

I think John is right on in his assessment.  This may sound a bit harsh, and I absolutely don't mean for it to!  I'm just being honest when I say that it seems like you are looking for a pedigreed doctor to say something you want to hear about your daughter's knee.  Maybe that it's a common problem, and all she needs is xyz in physical therapy and she will be good as new.  But knee problems, especially in adolescent females, are seldom an open-shut case like that.  It involves a lot of guesswork on the part of the surgeon, especially in the face of conflicting diagnostic studies.

I really would sit down and think--and talk to Heather--about what you both are looking to hear.  What would be a best case and worst case scenario?  What suggestions are unacceptable and what would be the best treatment plan as far as you are concerned.  Because until you figure out what your comfort zone is, you're probably not going to really like anything the doctors say.  And as Teresa pointed out, you don't want to have it put in Heather's records that you are not complying with treatment recommendations!  You've seen several doctors, and one has been willing to help--he sounds like the 'visionary' among the group, who knows that you don't treat an MRI you treat a patient and his/her symptoms.  But you apparently didn't like this doctor's pedigree or background; I would think that the experience at the HSS would show you that working for a nice hospital is no guarantee of the doctor's skill or demeanor--often it has more to do with their contacts and luck in getting a good fellowship and internship.  I was just at one of the best knee clinics/hospitals in the world--literally, the world.  The orthpedics fellow who saw me before my regular doctor was a COMPLETE JERK who manhandled my knee and bent it a full 10 degrees more than my maximum ROM...with me yelping and my PT wincing the whole time.  The guy got his fellowship because he interviewed well and had a good resume, I presume.  It wasn't his bedside manner.  Sometimes a doctor gets a job at a great hospital or clinic because he/she knew someone and heard about a vacancy.  You just can't assume that every doctor at HSS has the skillset to help your daughter; and you shouldn't dismiss the possibility of working with doctors outside the HSS just because they don't work at a well-known hospital.  Maybe the doctor in private practice has a personality that makes working in a big hospital a less than attractive option--he or she can still be a great doctor!!

You need to go by more than the reputation--use the good experience of kneegeeks who have had similar tough problems that were effectively diagnosed and treated.  Dr. Levy in New Jersey has helped at least three kneegeeks with very tough problems--ones that were missed or mistreated by other doctors.  He would be a great person to see for a definitive opinion.  So would Dr. Grelsamer, in NYC.

It may come down to realizing that current diagnostic imaging technology isn't up to diagnosing your daughter's problems.  I have had several 'perfectly clean' MRI's, but my doctor knew that there was a problem.  He did a diagnostic scope and found TONS of scar tissue and other problems that simply didn't appear on the MRI.  In the face of ongoing disability and clean diagnostic tests, it is perfectly reasonable and good medicine to do a diagnostic scope.  If you're not willing to do that, then you should probably stop taking Heather to doctors--further MRI's and x-rays likely won't resolve or show anything.  And if they do, and she needs surgery, you say that you aren't willing to do that yet.  So it seems like maybe that's why you haven't been happy with any of the advice you've gotten yet--you have a set of expecations and a limitation of how far you are willing to go to diagnose and treat a teenage knee.  And I agree that you should avoid surgery happy doctors, especially with someone so young!!  But you are fast reaching a point where non-surgical options will be exhausted.  No one can say you haven done your due diligence!!  It seems to me like you're looking for a magic bullet--a diagnosis of a problem that can be resolved with something like chiropractics or PT and no surgery.  But I'm not sure how realistic that is, and in the meantime your daughter is suffering.  And her muscles are atrophying as well, which can further confuse the issue and cloud the diagnosis.

Anyway, I just wanted to say that it's hard to get appropriate treatment if you tie the doctor's hands.  Try to figure out what you are looking for in a doctor and what you would be comfortable undertaking as far as treatment is concerned.  Until you do that, I'm not sure how much help it will be to continue to visit doctors.... 

I hope I haven't spoken out of turn, and I'm certainly not intending to be critical!  You are doing what any good mother would do, and I think you are absolutely right not to rush into anything.  I think if more people took your approach, there would be less inappropriate procedures like lateral release done out there, often with unhappy consequences.  But now that you have a variety of opinions, it may be time to make a decision about what to do--you do reach a point where getting more information just clouds the issue, rather than helping.  And this is coming from a person who has seen 7 different knee surgeons over the last few years!  So I know exactly where you're coming from.  Find a doctor you can trust and take a leap of faith--sometimes it's the only way to get things done  I did that with my last surgeon--everyone else was saying "no surgery" and "learn to live with the problem" and he said that I wouldn't feel better until the scar tissue came out.  He was right, and I have had a lot of improvement.  But I waited so long that I have other issues in the knee that give me chronic pain.  Your body is very much into equilibrium, and in the face of an ongoing injury it will often creat a new equilibrium.  That can have disastrous consequences when you are talking about joint pain and muscular imbalance, making it very tough to overcome this new status quo the body has created.

Please keep us posted and tell Heather to keep her chin up.  I had a long, drawn out period of diagnosis and treatment when I was 13.  I really thought the world as I knew it was over, as I was told not to run/jog and I had to give up my best event in swimming because breaststroke was very bad for my knee.  But I adapted and changed things and got past it, and had almost 18 more good years before my knee finally gave out.  By the way, my treatment was non-surgical when I was a teenager--appropriate PT and activity modification.  But I didn't have a displaced kneecap, which it sounds like your daughter may have.  And my ligaments were intact, too.  Anyway, every knee is different.  And every doctor has a different approach, especially with young, female patients who may still be growing.  Find a doctor who you trust, not one who brushes you off and wastes your time by sending you to other doctors to rule out conditions your daughter clearly does not have.  RSD is a cop-out diagnosis in so many with ongoing knee issues!  It means the doctor doesn't want to take the case and that the source of her pain isn't immediately apparent--no slam dunk here.  Think about it--a torn meniscus or ACL is such a simple thing, especially when they show up on the MRI.  Then, the doctor does a quick 30 minute scope, the patient (especially young ones) do a couple months of PT and they are good to go.  What's not to love about that?  Many, many doctors out there make their overhead and daily living dealing with these relatively straightforward sports medicine cases.  But when you have mechanical issues or subluxation or suspected PFS, the waters get kind of muddy.  Diagnosis is tough and successful treatment is tougher.  Some doctors simply don't want to take on the headaches.  My original surgeon dropped me after four procedures when my OTHER knee started acting up and was shown on an MRI to have the same problem.  He said he couldn't help me because my issues were genetic rather than the result of an accident or trauma.  That's when I went looking for other opinions and found my surgeon in Vail.  Like you, I have to travel--but I go over 700 miles by car and airplane!  Two hours to the airport, a two hour flight, then a three hour drive way up to the mountains of Vail, Colorado.  It's a long trip, and expensive, but it's worth it to see a doctor who knows exactly what the problem is--and has the courage to try to fix it.  That is priceless.  I've heard similar great things about Dr. Levy (see Holly and Nick Knack's posts, as they both see him in NJ). including that he takes on tough mechanical problems that other doctors have run away from....if I lived on the east coast, I'd definitely be seeing him.  FWIW.

Hang in there.  The right path to take will become clear soon.  It sounds like you have all the information you need, you just have to find a doctor you can trust.

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 12, 2005, 02:40:03 AM
Hi everyone,

This is Heather.  I want to thank all of you for your help and support.  Mom said she would write later.  I just wanted to write for once.  Just wondering if we took a picture of my knee with our camcorder, is there a way we could post it on here so you can get a better idea?  First she has to figure out how to use it.  I hope that my knee gets better and stops hurting real soon.  My hip hurts too.  I want to get off crutches before school starts.  By the way- way to go Trekker.  Mom is going to tell that Widmann off probably before you do.  I told him my hip and knee hurt when he bent and raised my leg.  He then said they both can't hurt and just raised it even higher and it hurt a lot more and he kept saying which one hurts.  Again I said both and then he raised it higher and I finally said the knee just so he would stop.  I learned my lesson from him.  Mom said he was a real jerk!  Ok just wanted to write you all and thank you.  Mom said all the information you give her really helps her try to sort everything out.

Heather   ;)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 12, 2005, 04:09:50 AM
Hi Trekker,

Well, like my daughter said, I will probably tell this doctor off first.  I phoned his office today and asked them to mail me a copy of his report.  His secretary said it was done and was just awaiting his signature.  Once I receive that I am going to either phone or email HSS and state my disappointment with this doctor.  In the meantime, I have a lot of decision making to do and will keep the board posted.  Thanks for the post - it made me smile.  Funny, but I thought the same thing about his approach towards women, especially when he didn't look in my eye but rather gazed away totally when talking to me.  Can't wait to state my grievance!!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 12, 2005, 04:24:11 AM
Hi John,

Thanks for writing.  You are probably right that a scope might be the only way to see if anything is torn or damaged.  Tough decision given the different opinions I've received.  I know I will reach a decision soon as I can't stand to see  my child like this much longer.  Now that I changed her insurance, the doctor in N.J. is out of network but I have out of network coverage, just that I have to pay 20% which can add up to quite a bit depending on what needs to be done.  At any rate, something has to be done.  Your post was very informative as are all the posts I've been receiving.  A lot of information for my brain to compute.  I know there is a light at the end of the tunnel so to say and feel confident that we'll have an answer soon, at least I am praying that we do.  Thanks again for writing so detailed a post.  Hope your week goes well!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 12, 2005, 04:38:25 AM
Hi Heather,

You didn't sound too harsh but I disagree that I'm looking for a pedigreed doctor.  I am just looking for a confirmation that something doesn't look right.  I've received 3 analyses of nothing wrong and 1 of something possibly wrong.  Hey, I've been to 4 OS's.  You say you've been to 7.  So you should understand, it's not an easy decision to make, especially when it's your own child.  I want to make the right decision and feel comfortable when I do.  I realize that she can't go on too much longer without anything being done.  I certainly don't want to see her knee remain like it is and definitely don't want to see her in pain like she is from time to time.  By the way, this Dr. Levy -  what is his first name and where in N.J. is he?  I couldn't find any doctors with the name listed in my Aetna handbook.  Thanks for your input and caring.  I really hope an answer comes soon.   I don't expect a bolt of lightening to come down and say this is the answer but I do know that I need to keep going forward and trust my instincts to go with what feels right.  Will keep you posted.  Hope all is well with you.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 12, 2005, 04:46:52 AM
Hi Jess,

I am going to see a chiropractor probably this week just to hear what he says.  I don't think I want him manipulating her knee in case there is a tear that has not been diagnosed.  Figure while I'm waiting for this doctor's report from HSS I might as well keep moving forward.  Everyone has been so great writing all their suggestions.  I've got a lot to think about and don't want to keep lingering on what to do as I know in my heart this can't go too long.  Am just praying that I make the right decision for my kid.  It's really tough being a parent because our kids' lives, so to say, are in our hands.  Perhaps that is what is making me seek out the best answer for her injury.  I know a lot of people speak highly of chiropractors.  I personally never believed in them but who knows maybe I'll be pleasantly surprised or maybe not.  Will keep you posted.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: willjen62 on July 12, 2005, 05:14:12 AM
Hi Lisa
I've been reading your threads...I just wanted to tell you to hang in there and do what your gut tells you to do...I have a son that started with knee problems at the age of thirteen...although our knee problems are different from yours, I understand your worry..  we have been very fortunate to have great doctors...I once had a doctor tell me that when a mother says there is a problem with her child...she is usually right 99% of the time...interesting enough the doctor was female...so doctors should listen to the mothers...I know how difficult it is having to watch your child in such pain..Keep kicking and fighting...it will be worth it in the end...way to go...best of luck
Will's mom
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on July 12, 2005, 05:37:09 AM
Hey Lisa,

Here is the info on Dr. Andrew Levy--by all accounts a wonderful surgeon on the cutting edge.  Nick Knack had patellar ACI (I think it was patellar--maybe trochlear) which is something many surgeons are *afraid* to do.  Holly had a double osteotomy (femoral and tibial) to restore her normal leg mechanics following FIVE years of suffering after getting hit by a car.  Reading Dr. Levy's resume, it says he's done studies on women's sports injuries--perfect for your daughter!

Hope this information helps.  I know you have to keep going until you are comfortable.  I felt justified going to 7 doctors because a) none of them could agree on anything, except that I had a terrible condition and surgery might make it worse, and b) I found the best specialist in the country for my particular problem--he was doctor number 7.  I actually have seen two surgeons since him, but they were specialists in different types of cartilage restoration (OATS and Carticel) while my surgeon was a pioneer in a third type, microfracture.  Anyway, I knew that the surgeons I had talked to before #7 were afraid to take on a crummy knee, and they didn't have the confidence.  Number 7 walked in the room, examined my knee, and said "I'm pretty sure I know what's wrong, and if it's what I think, I know how to fix it."  This was a top specialist, and he wouldn't commit himself to anything more than "I think."  Keep that in mind.  I truly believe the best doctors are confident but open-minded, and they convey this feeling to the patient.  So you will know *the doctor* when you find him, okay?

Try not to lose any more sleep about this, you are doing the right thing finding the best doctor, one that makes you feel comfortable.  Just understand that he/she may not want to convey a level of 100% certainty--or that you might not like it if they do, because along with that level of confidence comes an arrogance that intelligent, independent people find offensive.  I KNOW that you know what I'm talking about... ;)

Here's a blurb on Dr. Levy.  He really has a great background, and by all accounts is a wonderful doctor.  I really hope he or someone like him can give Heather answers soon--and you, so you can relax and get back to your lives. 

http://www.njsportsdoc.com/index.php?practiceId=1067&dir=personnel&lib=Personnel&personnelId=2720

Heather

PS you should change your name from "upset mom" to "determined mom!"  I pity the doctor who ignored your daughter's knee.  I went through a similar, very demoralizing appointment with the Mayo Clinic, where a doctor told me to "get a cane" and "get used to pain" at age 32!!  I nearly came across the exam table and strangled him.  So go get 'em!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: amyliz920 on July 12, 2005, 09:35:17 AM
hello,
I haven't had the time to read through all your threads yet but i really would like to give you some hope (and hopefully throw you some suggestions) i started having bilat knee pain when I was 13. They started out sending me to theropy where they said my knee caps where misaligned (it ended up I was bowlegged and that was the problem) so they taped my knee caps and did intensive theropy. Finally they could tell it wasn't working and so they tried cortizone shots, those didn't work either. At that point my OS told me that I might want to get some second opinions. I ended up going to a few and they all told me that I was just growing and couldn't figure out what was wrong. At that point I was in severe pain which was keeping me from being active as well as my knees were locking and giving way. Finally I went back to my first OS and he decided to just go in and scope (a really simple procedure, which couldn't have been a better idea) I was supposed to have a short surgery but 2 hours in the dr came out and was in shock. I have 2 HUGE meniscal tears which no one had noticed before. He cleaned them up, and within 2 months I was back to my normal activity. Granted I have had more problems since then, but i would really suggest possibly having your daughters knee scoped just to see what's going on in there a little better. The surgery really is minor (expecially when she is so young) I was walking without crutches the next day and had very minimal pain. Has this been an option that has even been discussed? Feel free to send any questions my way, cause I have walked that road not too long ago. I am 21 now and still have issues, but really wish I would have had a doc that scoped right away so i didn't have to run from doc to doc for a year. Good luck!! The dr I ended up going to was a dr in vail, CO. www.steadman-hawkins.com they are the best that I have found, really good with young people who are active.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: amyliz920 on July 12, 2005, 11:06:59 AM
hello again
well I took the time to read though your posts, and wanted to let you know that I will be lifting heather up in my prayers. It seems like you are doing everything that a worried mother would do. i know my parents went to every length that they could. (I live in MI and they took me to CO for a general consult) I am so sorry to ehar that you have had so many problems with the OS's. I went to U of M for one of my early 2nd opinions and he barley even touched my knee, asked me if I had pain anywhere else and when I said no, said it must just be growing pains. In reality it was my original OS who did my original scopes. I know it is very worrisome as a mother to think about your child going through surgery but let me say it again that I really would recommend discussing the possibility of scoping the knee.

I went for 2 years with knee pain and the mistake the dr's made on me is no one ever did an MRI beucause i had no initial injury. I have had MRI's read wrong for me though and say that I didn't have injuries when I had large meniscal tears. So, like others have said I wouldn't rely totally on an MRI

I am curious about the misalignment of her leg. That ended up being a factor that contributed a large portion of my problem. There are surgeries that can be done to fix misalignment. I had a procedure called a high tibial osteotomy done to both of my knees 2 years ago that realigns the leg (i hope that gives you some hope toward the future if the alignment needs to be changed)

I urge you both to hang in there, it sounds like you are doing everything in your power.And like i said in my last post PLEASE send any questions by way. I really feel for you guys, it's a little different, but it's like hearing my story all over again
Blessings
Amy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on July 12, 2005, 01:07:30 PM
Lisa -

FWIW - chirpractic care is HIGHLY unlikely to have any negative effects on the knee.  Adjustments will line things up.  A good chiropractor will quickly be able to identify what joints/parts of joints are out of whack.  In some cases, it can take months of ongoing care to "retrain" the body to keep things lined up.  If there is a tear in any ligament or meniscus, re-aligning the joint will not cause further damage.  And again, a good chiropractor will also know his/her limits.  Considering the frustration you've had with male OS's, you may want to seek out a female chiropractor, just for comfort level.

Heather -

Hang in there.  I had knee problems starting from 12 years old, when I got hit in the knee with a golf club.  Random accident, yes, but it was my little brother's mini-golf birthday party.  I was 17 when I had my first surgery, and didn't need another one till I was 30.  One way for teenage girls to help their doctors is to keep a knee journal.  Start writing down how the knee feels when you wake up.  Anything that makes it feel different.  If you leave the crutches by the couch when you head to the kitchen, write down how the knee/hip feel - what type of pain, where on the joint does it hurt, etc.  If you keep this journal for a few weeks, it will make a big difference in helping out any doctor.  Also, if you have a digitial camera (or just a cell phone with a camera) you can document the knee every morning.  That way, if you tried something yesterday and the knee is swollen today, you will be able to show the picture to the doctor, even if it's a month later.

Good luck-
Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on July 12, 2005, 08:40:37 PM
Lisa, as reluctant as you are in subjecting your daughter to surgery, a scope may be in Heather's best interests at this point.  The surgery is minimally invasive, and will give the OS a better picture of what's going on. 

I went for years going from one doctor to another who wrote my knee pain off as "arthritis".  The last one I went to was the doctor who manipulated my knee, ordered another set of xrays and an MRI, and took the time to listen to me.  I went in for a partial meniscotomy and a lateral release, because my kneecap looked out of line.  When the doctor scoped my knee, it turned out the kneecap was not misalligned, but because of multiple bone spurs on the kneecap, the entire right meniscus was literally shredded.  He smoothed the kneecap and removed the damaged ligament. I chose a local anesthetic with a sedative, and I had a pleasant sleep with no side effects.  I'm still in pain, because my arthritis is severe, but my knee has stopped catching, and the flexion is 100% better.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 14, 2005, 01:20:15 AM
Hi Will's Mom,

Thanks so much for your encouraging words.  They do say that a  mother's instincts are usually right.  Quite often I know just what my kids are thinking before they say anything.  Must be that maternal bond:)  I hope everything is alright with you son.  Thanks again!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 14, 2005, 01:28:57 AM
Hi Heather,

Thanks for the info on Dr. Levy.  I do not think he is a member of my insurance, in which case I would have to pay out-of-pocket once again and unfortunately we are not in a position to do that again.  He sounds like a really good doctor though.  By the way, Heather has been keeping a journal but when we brought it to the doc in N.J. and N.Y. they really didn't want to see it.  I think it probably would've taken up the entire office time or for whatever reason, they weren't interested in seeing it.  Good idea though Heather.  And for what it's worth, I too feel justified going to different doctors as the way her leg looks is definitely not normal.  I am beginning to think that a scope would be the tell-tale sign.  But I will wait and see what I feel is best after more than likely consulting another doctor.

Hope all is well with you!  You've been through a lot yourself I know.  Thanks for all your advice!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 14, 2005, 01:36:58 AM
Hi Amy,

Thanks so much for writing.  We're definitely hanging in there!  I know there's a solid answer that will come through real soon.  Colorado (if that is what CO stands for) is a long way off for us.  Have to find someone nearby hopefully and in our insurance network who can help and whom, most importantly I can trust and feel confident in.  Thanks for offering all your support.  If I have any questions I will certainly remember your kind invitation to ask you.  You, too, have been through a lot since you were a teenager.  These doctors surely can drive you batty so I know what your parents must've went through.  Hope you have a good week!  I appreciate your support!

Hugs,
Lisa 
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 14, 2005, 01:43:00 AM
Hi Jess,

I'm holding off on the chiropractor a little longer as I want to take her to another OS.  I will post about it after I finish thanking you and all the wonderful people here who have written.  As far as journals, digital pictures, etc., these OS's seem to want to conduct their own exams and ask their questions as they proceed.  Hopefully they're all not like that Widmann we saw in N.Y.  I'm still awaiting in the mail that report.  I have to learn to use my camcorder and start taking some pictures of her knee - it takes digital stills too.  Think I asked somewhere before on here if anyone knew how to post a photograph on the kneegeek site.  If you know, please let us know, then maybe we can post one here.

Thanks again for all your advice.  I really appreciate all the input we're getting. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 14, 2005, 01:50:57 AM
Hi Swikle (Sandy),

I am leaning more and more towards a scope.  Just hope it is a painless procedure after it is done in the event they don't find anything.  Heather's whole leg from the knee down looks out of whack - almost like she's knock-kneed (spelling??)  or something.  I don't know how to state this but you know the back of the knee where you bend - well her leg looks like the back is going to the side (sorry this must be hard for you to picture in your mind).  Anyway, thanks for all your input.  By the way, after your surgery or surgeries did your knee go back in alignment?  Just curious. Thanks to you and to all who are sharing their stories with us.  The more informed I am, the better I can sort everything out.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 14, 2005, 02:54:37 AM
Hi,

Just thought I'd tell you all our next move -- I went to the doctor for myself, wasn't feeling well, and had Heather with me.  I asked him his thoughts about what we've been through.  He glanced at her and it was obvious even through her jeans that her leg was twisted looking.  He said that looks like something is definitely not right.  He suggested an OS that someone else we know had mentioned when we did not have the insurance we now have.  In other words, this OS takes our new insurance.  He said he took his own son to this doctor for an arm injury and even though his kid didn't need surgery, he said he would trust this doctor with his own child.  I thought that was a pretty good recommendation.  Anyhow, I made an appointment for Heather with this doctor for July 25th as he is away all of next week and this was the first appointment we could get.  The only thing is this OS works out of the same hospital as the first 2 OS's we saw.  My doctor told me not to mention HSS but just to say we have different opinions and wanted his.  He told me that OS's are very "opinionated people" and really don't want to hear what other OS's say.  He said I should not bring any written reports but that I could bring the films if I wanted.  I was thinking of just saying we went to the 2nd OS and the one in N.J. who had totally different views on her injury.  Don't know if I should bring in what the doctor in N.J. wrote in some notes, if you recall, about a possible tear that he thought would show up on the MRI, which as you know did not.  All the films are going to be negative when he looks at them.  Don't know if I should mention what the doctor in N.J. said about a scope or not.  Any opinions?  At any rate, this is my current plan.  My doctor also said that he didn't think she had RSD because he said RSD takes longer to show up than the length of time she has had her injury.  He also said RSD is usually in the upper extremities.  To tell you the truth I'm a little perplexed.  Should I follow through with what that Widmann said about taking her to Columbia Presb. in N.Y. to rule out RSD?  Really could use some of your expertise here.  Thanks for listening.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on July 14, 2005, 12:48:34 PM
Lisa, My knee is aligned fine, now, and I've just finished therapy.  My flexion is at 110, which the therapist said is as far as I'm going to go.  The scope itself is not painful, but it hurt like the devil for a couple of days post surgery. I was on crutches for two days, then I gimped around without them after that.  I only had a total of 5 stitches, and a combination of pain meds and ice took care of the rest. Therapy hurt like he**, but the purpose there was to strengthen the muscles and stretch the cartilege (sp?) so I could get the absolute best range of motion.    I did the therapy at home, because of $$$$ shortage.  Keep in mind, I'm 51, and my kneecap was severely damaged by multiple injuries which were neglected, resulting in severe arthritis and bone spurs.  Heather is young, and hopefully, the scope will uncover the problem.  It's just too bad that you've had to fight so hard and so long.

I can sort of get what your saying about the back of her knee.  I'm no expert by any means, but it sounds like the muscles have spasmed and pulled everything out of line.  The doctors need to fix the original injury, so everything can be put right.  let's hope this new OS is worth his or her salt.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on July 14, 2005, 06:32:21 PM
Lisa,

It sounds like you are describing 'squinting patellae' when it seems like one or both of the kneecaps face the inner part of the knee.  This is a well known phenomenon due to femoral or tibial torsion--twisting of the leg.  Here is a photo:

(http://www.clinicalsportsmedicine.com/_images/chapters/24/FIG_24.3.jpg)

Here's an article about PFS that includes squinting patellae and how a good exam should be conducted:  http://www.clinicalsportsmedicine.com/chapters/24b.htm
Here's another article that covers signs and symptoms and consequences of PFS, including the now worn out term 'chondromalacia':  http://veggie.org/run/chondromalacia/  It also shows the types of tests that should be done on her kneecap.

If Heather does indeed have this, she needs to be seen by a PFS specialist--someone who does the open patellar realignments and osteoteotomies.  It's not that she'll need these procedures, it's just that you want someone who knows how to use every weapon at their disposal to fight PFS, and somone who understands this problem and the impact it can have on your life.  A lot of OS's won't touch a knee with PFS, or they'll just recommend the old standard 'lateral release,' which is why a lot of us started coming here!  Many cases of PFS are resolved by PT, though with a severe structural problem, surgery may well be warranted.  Anyway, it's important to see the right kind of specialist so that you don't do a scope if what she has is PFS!!  Because then she'll need specialized PT, which should be given some time to work.  It's critical to interrupt the pain phase and allow her to work without sharp pain--to do this they will use special taping techniques, bio-feedback, e-stim during quad exercises, etc.

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on July 14, 2005, 08:54:12 PM
I think what Heather just wrote about was discussed earlier in this post , because I remember seeing the same picture, and the following writing that it did look like her daughter's knee.  Right  now, without therapy, I don't think that this is going to get better, as the longer the condition goes on the harder it is to restore balance to the knee.  I agree with earlier writings that the original injury 2 or 3 months ago probably contributed to causing the pain, and shoving her kneecap just far enough off to make it much worse.AND< as I well know, months and months of therapy may not help if you don't have a therapist that knows what they are doing. In many cases, the doctor and therapist don't seem to interact although, part of the therapist's responsibility is to give the dr. a written report, and suggestions every 2 weeks to a month, and then have a re evaluation every month or so to check for improvement from the original and last eval. IT is up to the DR> to actually read it, and consider it. Mine, like he does with my personal phone calls, never bothers to read the therapist report, and if I bring it up, just tells me the therapist is wrong. IN MY CASE, I would have to go with the therapist as they do actually touch my leg, and work the knee, and the OS has not physically touched it , unless under anesthesia, for over two years. Although her knee is the topic to be solved, again, this post, like many others, seem to focus in on the treatment, or lack of, that the OS gave.  I can personally understand her moms helplessness, as the physician seems to demonstrate complete lack of respect for both her and her daughter, by his lack of concern, diagnosis, or even attempt to try to comfort the patient.In most cases, the patient and her family are willing to accept the fact that even in medicine, mistakes occur, and we can forgive a dr. for making a mistake, if he really tried, and was competent, and actually thought he was doing what was best. BUT , what I, as a patient, CAN"T FORGIVE is the politics of medicine or a dr. who doesn't CARE about his patients and does not EVEN attempt to comfort the patient, and family, when they obviously need it. A few words of explanation, or even empathy or sympathy go along way in establishing a trusting relationship.Hardly ever will you see another physican intervene in cleaning up their profession, even though they want the "bad drs" gone, as they are intimidated by the legality because they don't want to be involved legally, financially, or personally, and risk their own profession. THEREFORE, that unspoken code wins again, and the physicians who practice poor medicine go on to retirement.Even other drs. are afraid of being sued by the bad dr. As I expressed before , I would not expect to see any real compensation for the last visit. I once went to a orthopedic clinic, and after 4 hours of waiting, was told to come on back, where I was subjected to a brief visit, without benefit of any real exam, and basically told that "it was fine". I went on to have a complicated surgery for the condition I had sought help, so when I received my notice from ins. saying they had paid that OS over $400 for a CONSULTATION, and I owed $30 or $40 , I contacted the billing office at the clinic, and explained, unemotionally, that I had waited four hours, and then seen a resident briefly (THERE are insurance guidelines for the amount of minutes, the degree of consultation charged) and he did NO EXAM, so I had to seek care somewhere else, and then told them the surgery I was recovering from. SHE HURRIEDLY REASSURED ME I OWED THEM NOTHING> I received a certified letter to the same effect, and an offer of"anything we can do to help you anytime." BUT I DID NOT EVER SEE WHERE THEY RETURNED THE INSURANCE CO<> MONEY!!! Another time, a surgeons fee was paid by my insurance co. and the my husbands paid the same thing, although my insurance co paid all that was required per my contract, so they wrote off the balance, and the reinstated it, when my husbands paid. I contacted his insurance co and told them and their answer to me, was "IT is up to the doctor to tell us, and send it back, we won't ask for it back."" I just sent them a letter with both EOBS and told them to NEVER NEVER TRY to recover the overpay from me. SO no matter, how I have tried to intervene, it doesn't seem like I accomplish much. I caution you AGAIN, in the manner in which you complain. I don't mean don't address the fact, as if you are unhappy , you have the right to tell them so, but take it up with the physician, or his office manager FIRST. Good luck, Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: amyliz920 on July 15, 2005, 03:26:24 AM
kinda adding to heathers post, the picture that she just showed, looks a lot like what my knees used to look like although I was never officially diagnosed with that condition. I will back her up though in the fact that you want a dr that knows how to deal with it, and that might be willing to do and osteotomy on a younger person. I got mine done ( 2 open wedge High Tibial Osteotomies) while I was still pretty young, which helped me recover quicker and even though it's a rough surgery, I really am grateful that my dr considered it an option. Have you ever heard of the osteotomy procedures? I'm curious to see what the new OS has to say.
Praying for you guys
Amy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 15, 2005, 04:14:12 AM
Hi Heather, Teresa and Amy,

Thought I'd write you all in one note re patella femoral & squinting knee -- I don't think that is what my Heather has.  Three out of the 4 doctors did not think that was it.   The one that initially thought it was patella femoral related changed his mind - that was doctor No. 1.   Heather's leg from the knee down is turned.  It looks quite different than from the pictures.  I had at one time thought it looked like that but now that I look at the pictures along with Heather we don't think that is the problem.  I still have to take a digital still and post it to show you all.  Haven't had the chance to get around to doing that yet but hopefully will some time next week.  We will see what this next OS says and then take it from there.  If he says just pt we will pursue that plus, as I mentioned, maybe go to the other doctor who specializes in pain in N.Y.  She has been trying to put some pressure on her leg when walking to try and avoid atrophy.  Her knee looks slightly swollen under the knee cap on the outter side and up a little on the outter side too.  The doctor in N.J. said she had a little fluid around there - said it was just a very very small amount.  Thanks for all the info - I found out from seeing all these OS's that when I ask them if it's this or that, they have their own opinions, so I will just wait to hear what is told us next time around.  Bottom line, I don't want her to wait too much longer without anything being done - at least starting some sort've pt would get her muscles strengthening but then again we have to wait and see what the docs say.  Hope one of these doctors has the right answer.  I can understand why some of them hesitate to do any sort've surgery on a child this young when nothing is showing up on any tests and I can also understand that many times nothing shows up when there is a problem.  Still can't figure out why the so called specialist from HSS said if it was orthopedic it would've manifested itself much more by now - but then again he was an awful example of a specialist!  Will keep you all posted.  Hope you and everyone on this site has a great, pain-free as possible weekend!

Hugs, love and prayers to all!
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: John1 on July 16, 2005, 10:35:31 PM
Hi,

Does anyone know anything about posterolateral rotatory instability of the knee? Apparently it can be caused by tears or partial tears in the PCL, LCL and other structures in the posterolateral area of the knee. I ask because the doctor's report that Lisa posted on 6/16 said:

"...with posterior lateral subluxation of the tibia on the femur"
"...a significant valgus deformity and significant posterior lateral rotatory subluxation of the tibia on the femur."
"She has marked sensitivity over the lateral joint line.  She has no sensitivity over the medial joint line."
"Her patella is well seeded within the femoral groove.  She has no patella instability."

The report also said, "due to the long standing subluxation of her knee [tibia on femur], there is a possibility that this is now a static deformity which may require significant open releases of the posterior lateral corner." I take this to mean that if some of the stuctures in the posterior lateral area were torn or partially torn, scar tissue may have formed because of the lack of range of motion (ROM) and the scar tissue needs to be cut out to get the ROM back. Is this correct?

It sounds like this doctor was the only one that actually found a specific area of the knee where the problem is localized--the posterior lateral corner. It is a rare problem, so that might explain why some doctors didn't diagnosis it.

Any comments?

John
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 19, 2005, 01:23:28 AM
Hi,

I just received the report from HSS.  It is about 2 pages in length.  I will write her some highlights. 

PHYSICAL EXAMINATION:  Heather is a somewhat emotional labile 14 year old girl.  She has full range of motion of both upper extremities, shoulders, elbows, wrists, and hands.  She has full forearm rotation bilaterally.  She has no cutaneous abnormalties over her spine and no pain to palpation over the spine.  There is no evidence of spinal deformity.  She resists any motion of her right leg with distraction she appears to have full rotation of both hips and full flexion and extension of both hips.  She has full range of motion of the left knee.  On the right side, she has full extension with flexion to approximately 70 degrees once again with distraction.  She prefers to rest with her knee flexed 20 degrees and the hip internally rotated 25 to 30 degrees.  This gives the clinical appearance of valgus of the right knee, but with her knee in full extension and the hip in neutral rotation there is no evidence of clinical deformity.  There is no evidence of significant knee effusion.  There is no redness or warmth about the knee.  She complains of diffuse tenderness to palpation about the knee.  Distally, she is neurologically intact and she has full range of motion of both feet and ankle subtalar joints.

IMPRESSION/PLAN:  A 14 year old girl with negative hip and knee films with persistent right knee pain internally rotated position of the right lower extremity and flexed posture of the right knee. Her radiographic workup including bone scan and MRI to date have all been negative.  Her history and examination are most consistent with pediatric pain syndrome, although not necessarily specifically RSD.  I recommended that Heather obtain some routine screening labs today.  Assuming that these are negative, I think that it would be prudent for Heather to be seen and evaluated by a pediatrician pain management specialist.  I recommended Dr. William Schecter at Columbia Presbyterian.  I will facilitate mother getting in touch with him.  In addition, she was given contact information regarding other pediatric pain specialists.  Mother will follow up with me regarding labs in the next few days.

Okay - Columbia Presb. phoned and scheduled an appointment with an associate of Dr. Schecter for 7/28 as they said Dr. Schecter passed her on to his associate.  We have, as I believe I mentioned in a prior post, an appointment with an OS up here on 7/25 who I am only telling about 2 OS's we saw -- the one in N.J. and one who is in this OS's network, per the advice of my physician who told me not to bring any reports into this doctor.  Any comments or opinions would be greatly appreciated.  I am so tired and stressed of seeing her on these crutches yet she can walk without them but walks really funny and I don't want to see her damage her hip or anything else.  So my saga goes on.  Please feel free to give me your input.  I look forward to hearing from you.  You are a great means of support to us!  To be continued....................................... sounds like a soap opera (have to joke a bit to keep sane).

Hugs,
Lisa 
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on July 19, 2005, 01:16:17 PM
Lisa:

I would follow your doctor's advice and leave the medical records at home.  You and Heather describe to him what her symptoms are.  A flexion of 70 doesn't sound like much to me, I'm sure I'll be corrected if I'm wrong.  Pain management at this point may be a help to her, but they need to find the cause so it can be dealt with.

You're in my thoughts, hang in there.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: dimples3887 on July 19, 2005, 07:00:02 PM
I seem to find this whole thing strange that everyone says she has something different, but yet they don't do any treatments to help her.  I wish you both the best with pain specialist in hopes to get her off of those crutches.  I know I hated them when I had them! :)  In your very early posts about your daugther, I saw that you had questions about pain levels going up after PT.  I definitely can agree with that.  Going into PT recently, for the first time in 3 years due to patella instability, my pain was a 0 if not a negative number.  2 weeks later, I ice probably 4 times a day and have learned to love my ibprofen again and again.  I really hope that the pain specialist and the group of OS's you have seen can come to a decision about your daughter.  Good luck with everything!!!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trudy on July 19, 2005, 08:40:39 PM
I just read your months of frustration!   I went through something similar with my 13 year old daughter only it wasnt knees it was her stomach.   For six months she would curl up in a fetal position in excrutiating pain - we were at the emergency room at least once a week.  In reading I wondered why they have to mention that she is an "emotional" 13 year old girl.   All 13 year old girls as well as boys are emotional....   At any rate although it wasnt knees and this is off topic -we wound up going to 16 doctors all told and they all had a different diagnosis.   Her primary care doctor (who delivered her) finally "threatened" to hospitalize her for psychiatric problems!!!  To make a long story short she wound up having one of the largest hernias they had ever seen in a 13 year old girl.   My point is I feel your pain - I feel your frustration - I cry your tears with you - dont give up - YOU are the only one she can count on.   I will keep you in my prayers!
Trudy
 
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 20, 2005, 12:36:34 AM
Hi Sandy (Swikle):

I am thinking now about not even bringing in the MRIs to the OS up here - just telling him they were negative and possibly bringing the report from the doctor from N.J. or writing down what he thought it was.  I mean I have so many MRI's not to mention bone scans, hip MRI, etc.  I just probably will say we have 2 different opinions and I know my daughter's leg and knee "never looked like this before the injury" and then take it from there.  Thanks for your comments.  They're greatly appreciated!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 20, 2005, 12:42:26 AM
Hi Dimples (cute nic):

Thanks for writing.  I now realize the pt will be painful after months of posting on this wonderful board.  She definitely will need to do pt.  Yet she says when they gave her ice and when she iced it at home the pain was much worse with the ice...........hmmmm - I don't understand that but that's what she said. Well now I have to wait and see what these other two doctors say - each one not knowing I saw the other - oh what a tangled web I'm weaving:)  I want to be honest but found out when they hear you've been to so many doctors they start to think only God knows what.  But I am going to keep going until something makes sense.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 20, 2005, 12:51:08 AM
Hi Trudy,

Thank you for such a heartfelt message!  You certainly were through a lot with your child.  Thank God they finally found out what was wrong.  How did they finally figure out it was a hernia?  And, did you tell each doctor all the doctors you saw?  Just wondering.  You are so right as to how they can say a teenager is emotional, like that's unusual.  I'd get emotional at any age if they were bending my knee and hurting me!  Let alone, teenagers who are going through hormonal changes, etc.  Well the doctor who wrote that eval was a very unemotional man, very cold, and no smiles - he probably could use some emotion in his life to lighten up, especially as he deals with children.  Best way to describe him would be if he were a woman he'd be very likely frigid (smile). 

Thanks for keeping us in your prayers.  Without faith I don't know how we could continue with this whole mess.  Keep in touch!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on July 20, 2005, 01:07:22 AM
Lisa,

Definitely bring the MRI.  Bring the radiologist's report, but don't give it with the MRI (don't give it unless they ask for it, in other words--that way you can see if the OS knows how to read MRI's on his own).  Don't bring the other doctors' stuff, but the MRI is an objective and completely neutral piece of film.  So the doctor should see it, and take into account his OWN views, when he makes his diagnosis.  Of course, MRI's are not foolproof.  And neither are the people reading them--sometimes a new set of eyes will see something others missed.  My OS does this all the time--sees scar tissue and other problems that were glossed over or dismissed.  My previous OS helped diagnose my PT's boyfriend, who had fallen off his motorcycle and walked around for over a week on a broken kneecap!!  The ER doc and hospital radiologist missed it, but my old OS saw it right away while looking at the same films the others saw.  So you will want to bring those films, just hold onto the radiologist's report--hopefully the new OS will know how to read the MRI on his own.

Good luck.

Heather

PS It's common for ice to feel like it's making the pain worse.  Make sure your daughter has a decent layer of cotton (like a dishtowel) between her skin and the ice, and also that she leaves it on for at least 20 minutes.  It does seem like, at about 10 minutes, the ache created by the ice is unbearable.  But it will get better.  At 20 mins, her knee should be numb.  Ice will hurt if you don't have enough insulation between the skin and the ice, though.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 20, 2005, 04:01:39 AM
Heather,

I have CDs of both knee MRIs - ordered each from different OSs.  I also still have the original films of the MRIs that have to be returned to the MRI facility.  They are "negative".  The doctor from HSS looked at copies and just concluded per the reports (and he also looked at the films I believe) that they were"negative".  I figured just to show him the report from the N.J. doctor before he ordered the MRI, if you recall that - believe I wrote his comments somewhere on here.  This doctor we are going to uses the same MRI facility where we took them so he will more than likely go with their reports anyway.  But everything remains to be seen.  I'll know more after we see him on Monday 7/25 and then more than likely we are going to follow through and go to N.Y. and see this pain specialist.  Then maybe I can try and sort things out and figure how to proceed.  Thanks for your input - ultimately I have to make these decisions but I am taking all the advice I am receiving on here into account.  Thanks again.  Hope you are feeling alright these days.  One good thing is both the pain specialist and the OS accept the new insurance and all we have to pay is a $15 co-pay - big difference from what I paid at HSS!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: dimples3887 on July 21, 2005, 01:17:39 AM
Hey Lisa,
Two things crossed my mind when I read your response to my response earlier.  Either 1) This is more of a muscle problem which would require heat to feel better, not ice...or 2) Right before a body part goes numb from icing, there's a chance there could be increased pain until it goes completely numb.  It may be a personal thing but unless I have pressure on the ice (to hold it closer to the skin) when icing, my knee doesn't get completely numb from icing and only goes to the painful state in the suggested 15 minutes of icing.  If I use an ace wrap to hold the ice on for 15 minutes (obviously without cutting off circulation from it being too tight:)  ) my knee gets past the pain state and goes numb.  Even sometimes at PT, the ice isn't cold enough to make me numb.  Do either of those explanations help make any sense??  I know this is only to help temporary pain and won't solve all of her problems but it might help. I wish you both the best and good luck with the other docs!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on July 21, 2005, 07:30:29 AM
Lisa , I briefly read through what the OS wrote that you transcribed here, and basically, he is saying that he has to distract her to get a true, unbiased result from her, as she is so focused on preventing further pain to herself and her leg. Naturally, we all do that subconsciously, to protect ourselves. I think he is saying it is the position that she keeps her leg in, as it seems to give her the least discomfort, that is contributing to her different looking leg. I went to a pain management appt with a friend today, and they repeated the same exam and questions multiple times to see if the patient gave the same answer each time, and to accurately assess where the pain was originating, and not just the way my friend strove to protect herself from more pain. He also went on to point out how important it was for him to know what did and did not make it better, and where the maximum point of pain was.  SOmething has caused your daughter to turn to keeping her leg in this position that would be awkard for the rest of us.In a round about way, he is saying it was not caused by an injury that he can identify that would result in it. BUT THEN ALL DRS> MAKE MISTAKES. She really does need an understanding, caring, knowlegable PT to help her start to reorient her leg to a more normal position , IF POSSIBLE, and work on strengthening. Distracting her during the exam is not to trick her, but to get her mind off concentrating on the pain being produced to get a clearer more accurate picture of what is actually going on. IF she is sitting there waiting to be hurt, she will be more tense, and more liable to over react before she is actually hurt. HOPE that makes sense. Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: tiggs on July 21, 2005, 02:25:36 PM
Hi Lisa,

I am so sorry to hear of all your troubles with your daughters knee, it is such a shame that it has taken so long and still you dont seem to be any closer to an answer. I have been reading through all the posts and am I right in thinking you still dont have a clear diagnosis?

I cant make any suggestions as to what is the problem but I am a great believer in homeopathic help. The one thing I found throughout all my problems and pain was two products that helped me relax more particulary when having examinations and physio . These are firstly Arnica, it is the 6th homeopathic remedy which helps with healing and bruising internally and Rescue remedy which is designed to help relieve anxiety levels which your daughter must surely be feeling every time she has to go to see anyone. Both with physio and examinations you tense up so much as you are expecting more pain and unfortunately this just causes more pain, it is a viscious circle.

I hope you get some answers soon, I will keep popping in from time to time , to see when you get some good news.

Good luck , my thoughts are with you.

Tiggs.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 22, 2005, 12:23:07 AM
Hi Tiggs and Teresa and all:

I took Heather to a chiropractor up where we live.  We did not have an appointment but he looked at her for quite a while - actually he and his brother both looked at her leg.  They have never seen a knee like hers before.  I said this is one for the books and they agreed.  We were told that a scope should be done as MRIs, as you all know, don't show everything.  He knew the OS we are going to on Monday and said he is a very conservative doctor.  He said her growth plate may have been injured or that the initial injury healed when the knee went over.  He thinks like me that there is something more going on and was very surprised that nobody wanted to scope her knee, except for the doctor in N.J., who of course we can't go to now as he doesn't take our new insurance.  The doctor in N.J. wanted to do an MUA first and then scope but this chiropractor said a scope should be done first (and, by the way, this Chiro. had knee reconstruction himself at one time).  We are going to see what the doctor on Monday says and then go to the pain spec. which, personally, I think is a waste, and then I don't know.  I think I am going to look for another OS who is not so conservative if indeed this doctor we are seeing Monday won't scope her knee.  Nothing might show up on a scope but then again something may.  Nobody can promise us that her knee will look normal again because this has been going on for soooooo long.  I tried to post a picture someone took of her knee with a digital camera but for some reason can't.  It's in jpeg form - I don't know how to change it to attach in my post.  Any help would be nice -- this way you can see her knee for yourself!  The chiropractor said that her pelvis and lower back were very twisted and was real surprised that nobody noticed this.  He feel he can help somewhat in that area.  These chiropractors were so nice - didn't charge us - gave us a free consultation.  I will definitely use them after we get someone to finally see this is an injury!  The chiropractor agreed with us that she is NOT FAVORING WALKING LIKE THIS but that the injury has done this.  He also thinks there is more than one thing going on re her hip and her knee.  I totally agree but we still need to find an OS who will really investigate this without sending her to pt where we would have to wait even longer -- I mean this has been going on for 5 months - her knee might never go back to a normal position if something is not done really soon!  Please keep us in your prayers and let me know how to post the picture.  Thank you all sooooo much!

Hugs,
Lisa (stressed mom, determined mom, at my wit's end)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Janet on July 22, 2005, 01:58:26 AM
As to if you should bring the MRI films with you, I agree with Heather that it is a good idea. I had a pain management doctor order and MRI which the radiologist and he both agreed were negative. I took them to a new OS, and he was right away what the problem was. If he hadn't seen the films himself, I would have told him they were "negative."

Janet
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Teresa_S on July 22, 2005, 05:51:00 AM
Lisa, I am sure there is more than one thing going on, but the thing is the longer it goes on, the more that will twist, and get fixed in abnormal positions, whether it is her knee, pelvis, or hip. IF she is favoring one side of the knee, then naturally, the pelvis, and hip are being tilted also to compensate. Rarely, is is a simple ONE answer. I would go for scope, but that really won't help see the patella and why it is off to one side, more the inside of the knee, and the ligaments, etc.Teresa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on July 22, 2005, 02:30:20 PM
Lisa,

Have still been following your posts. I really hope that you will be able to get some answers on Monday.  Know how frustrated you and your daughter must be, it is a horrible thing to not be getting any conclusive answers.  I do agree with what someone else said (maybe it was your chiropractor) about Heather's age.  Reading posts on this site - it seems that quite a few of the younger posters have so many problems getting a diagnosis. 

Good luck on Monday,

Fingers X'D

Shade
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trudy on July 22, 2005, 02:38:46 PM
Lisa

Good Luck on Monday.   I like this chiropractor.  Sounds like you may have found someone who is taking your daughter seriously.... It always helps to have someone HEAR you for a change.    As for the scope - I had to beg my os for a scope of both knees after 5 months of constant pain and limitations.  I had them scoped last thurs and he also gave me a shot of cortisone in each knee.  So far so good!   Anyway - I will be thinking about you and heather and hoping for some answers for you.
Trudy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 23, 2005, 03:36:54 AM
Hi Teresa,

Just curious as to what you mean that a scope doesn't really show the patella?  As far as favoring one side of her knee to the other - she is not favoring one side.  Even though a few doctors have said that, I am positive they are wrong.  I do agree that the longer this doesn't get addressed correctly, the more chance of her leg staying in this twisted position.  Monday is only a few days away and I hope this doctor decides on a scope.  Thanks for writing!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 23, 2005, 03:42:42 AM
Hi Shade,

Thanks for writing.  It does seem that doctors are hesitant to do any surgical procedures on young people especially when nothing shows up on the films.  But I am hoping that one of the doctors we will be seeing will see the importance of not letting this go on much longer as it might wind up to be a static deformity, meaning that the twisted position of her leg due to the injury will remain like this.  We could use all the prayers we can get that an answer and the right treatment/diagnosis will come about real soon!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 23, 2005, 03:55:41 AM
Hi Trudy,

Thanks for writing.  Just curious as to if the scope you had showed anything other than what you knew before the scope?  If we don't get a diagnosis next week that makes sense, I am going full speed ahead until I do.  If it means going to 2 or 3 doctors a week, we will.  This has been going on for way too long and her leg, hip, etc. are really getting twisted up.  It's definitely not good for this to be dragging on for so long.  I just need to muster up all the strength I can and pray I can get appointments after work hours - I plan on taking her up in our area to doctors who are in the network.  I don't want to keep waiting month after month until it could be too late for them to get her leg straight again.  Really hope that the doctor on Monday will come through for us but guess I am not expecting any real different diagnosis.  I guess that's because we've been so disappointed so far.  Preparing myself for another letdown but also preparing myself to forge full speed ahead.  I won't stop until we get an answer that clearly makes sense.  Will post after appointment on Monday.  In the meantime, am trying really hard to stay positive.  Have to.  Hope your knees get better and that you have a good weekend.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: tiggs on July 23, 2005, 11:01:18 AM
Hi, Lisa,

Good luck for Monday , I will keep my fingers x,d for you both.

As to how to get a picture posted, I am not good at this myself but I read the other day ( and can,t remember what board I was on, it might of been the knee guru i need your help post ) apparently you need to post your picture onto an internet photo gallery ,i think yahoo. com / or google have something like this. then your able to send it across.
I know I,m probably not making much sense but maybe that will help you to find out more on how to do this.

Best wishes

Tiggs
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on July 23, 2005, 11:44:10 AM
Lisa,

Hi, I also read that post about posting pictures.  They have to be posted on the net - you can create an on-line album like yahoo or any other of your choice and when you do that you can then set up a link here and people would be then able to access the pictures.

Maybe other people could explain this better...

Fingers X'D and saying prayers for you both for Monday

Shade[/color]

Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 23, 2005, 06:46:59 PM
Hi Tiggs and Shade,

Thanks for trying to help me figure out how to post a picture here.  I emailed the pic to someone who may be able to figure out how to get it up on the board here.  If I am able to get it on here, keep in mind that her feet aren't showing in the picture but that her feet are both straight (parallel).  Anyway, thanks for the good wishes and prayers for Monday.  Have a good day!  To be continued........................:)

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Boydy on July 24, 2005, 02:59:04 AM
Hi Lisa,
have been following your posts, just wondering, I know at the beginning Heather was not wanting to take pain killers, is she taking anything for the pain now ? And just wanted to add, I know it sounds like they are making out a lot of this may be physcological, (they did the same thing to me, ) but my PT did a 'mind test' to me and now I realize what they were getting at,. He told me to put one foot in front of the other and jump, I froze and couldn't do it. To cut a long story short, he asked a few other things of me and until he actually put me on a mini tramp and held my hands for support, I couldn't do them until he made me feel safe with the support, so after 10 min of this I was able to do the things he asked of me at the beginning without his support. My mind would not let me do some simple things because I was scared of the pain. Which affected my whole way of walking, etc. I knew it wasn't in my mind, the pain was real, but I do now see how it does affect the way I do things, getting out of chairs, getting out of the car walking up and down stairs etc etc. The point is, if Heather is in so much pain, she too will be holding herself in different positions.  I think the pain management doctor will be benificial to her. Take some of that pain away for awhile and things may improve (even just a little).
Sorry about the novel, but after reading your story for so long and feeling yours and Heathers frustration, I just feel,( along with everone else,) that something has to help soon !. I'll be thinking of you Monday. Best of Luck
Boydy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 24, 2005, 05:33:54 AM
Hi Boydy:

Thanks for posting!  She is not taking any pain meds.  I told her to take an alleve tomorrow to relieve where the chiropractor pressed on some points that are bothering her.  She says it doesn't help and that she is afraid of taking anything with codeine in it, etc. as she doesn't want to feel more tired than she does already from walking on the crutches.  I hope you are right and that this pain specialist can help on Thursday.  More than that, I hope the new OS we're seeing Monday will be a lot more sympathetic than the others and maybe figure out the problem or at least give us some hope of her leg straightening out.  Thanks again!  Hope all is well with you.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: John1 on July 25, 2005, 12:49:09 AM
Here is a picture of Heather's knee. I am posting it because Lisa didn't have the software to reduce the file size to under 128 KB.

[attachment deleted by admin]
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 25, 2005, 01:30:44 AM
John,

You are a "Doll" - thank you sooooooooo much for posting this for me!  Just want to let anyone who sees the picture to know that her feet are pointing straight forward yet her knee is inverted.  Once again, thank you, thank you, thank you John!  And thank you for all your advice - really gave me a head's up on what to say to the doctor tomorrow.  Heather says thank you too!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Boydy on July 25, 2005, 03:33:00 AM
OMG, Lisa,
 I cannot believe that noone has taken Heather seriously yet!! That picture speaks a thousand words, am so glad you were able to get this picture posted to let us see what you have been trying to explain. My heart aches for you both and am more anxious then ever for you to find somebody to help her. Please try to get her to take some pain meds, there has got to be some meds that don't make you drowsy (without codiene) if that is her only concern. Just until she gets some help. My thoughts are with you this week. Anxiously awaiting the reports from OS Mon & Pain Spec Thurs. Can't wait to hear what they have to say !!
Boydy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 25, 2005, 04:04:52 AM
Hi Boydy:

Glad you were finally able to see what Heather's knee looks like.  It's unbelievable in person - actually looks better in the picture.  It is hard to believe that these doctors think this looks pretty normal.  Well, tomorrow is another day and, hopefully, a better day if this doctor does something for us.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: tanyasparks on July 25, 2005, 05:09:17 AM
Oh Lisa!  OMG!!!  :o

That looks bad.  But, it does look like it could be partially rotated at the hip.  I really hope that you can get this fixed.  I can't believe that no one has taken you seriously!!  I also can't believe that someone would actually say that it looked like she was holding it that way on purpose!!  Didn't you say that it had been like this for 5 months??  If she were faking it, as an adolecent, she would have given it up by now and been fine.  You are both in my prayers.

(((HUGS))))

Tanya
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on July 25, 2005, 05:39:18 PM
Holy cow, Lisa!!! It's a wonder she can stand at all!!!  I cannot fathom that nobody can find anything wrong with her.  Have they done an MRI on that hip?  It kind of looks like my leg did when I let a nerve injury go too long, although Heather's is much more pronounced.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: kneesknees on July 25, 2005, 06:49:00 PM
Hey Lisa,

I know I haven't written anything for ages but I've been checking back everyday to read this post.  After seeing that picture I just had to post to say OMG!! I truly truly hope that you can find answers and get Heather's knee problems solved soon...whats happened to you is almost unbelievable (I say almost because the 'its all in your head' thing from doctors seems to come up all too often to people on here, me included). 

I really can't understand how doctor's can say that there's nothing wrong!  Maybe they should try standing with their feet forward and try to put their leg in that position - it just isn't possible!

I'll keep checking back but just wanted to say that I really hope you can get this sorted soon,

Thinking of you,

Katy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on July 25, 2005, 07:05:52 PM
Lisa,

You are seeing everyone saying OMG!!  We know that this happens from surgeons, but sometimes it just seems sooo wrong.  The problem seems to be that some doctors just do not do the procedures necessary to handle a tougher condition like Heather's & there is no way to tell what types of procedures that they do as they do not seem to advertise this information.....

Many people on this site have had a lot of problems getting diagnosed, heck I have been to five (5) surgeons before I could get a diagnosis....It is more common than some people think.

I feel so bad for you and Heather.  You must be physically and mentally fatiigued going from doctor to doctor.  Thank heavens you met that chiropractor.  He seemed to be a very positive thinker - that is what you need.  Move forward - not backward....

Hopefully today you'll turn a new corner and you will not have wasted another visit to another doctor.  I just wish that there was something that we could do......

Sending hugs for the both of you,

Shade[/color] (http://www.chatsco.com/_borders/clipart_02.gif)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on July 25, 2005, 07:22:38 PM
Lisa -

I think it's been mentioned since the photo went up, but it looks like her leg is turned at the hip.  At least to me.  I know you've mentioned the hip to doctors, but have they taken x-rays and MRIs of her hip?

It would be nice to think that a knee specialist might look at her leg and say - "this isn't my area of expertise.  If you wait a few minutes, I'll bring in my associate, Dr. so and So, who specializes in hips".  Obviously, that hasn't been your experience.

I hope the pain specialist can help you, maybe by directing you to the right OS for your daughter.

Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: stgiles16 on July 25, 2005, 08:18:15 PM
I have to agreee with Jess. It does look like her leg rotates from the hip. If we can see that , why cant the OSs that you have seen? I would definatley get that hip checked out.
good luck

missy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: KneeVet on July 25, 2005, 08:20:06 PM
Hi there I am a pro when it comes to this.  I am a 27 yr old female and I have had fove surgeries in 4 yrs.  As much as I hate to say it there will be alot pain during rehab, because she is having to work her muscles back up and it will take time, everyone is different.  As far as another OS, I would suggest that you get a second opinion.  With Patella injuries most doc's don't evern wnat to open that can of worms as that was my problem as well.  Once you find the right doc they should do an MRI to determine the cartliage damage because once that stuff starts to go( like mine did) there is no end in sight.  If she uses a lil heat (i.e. heating pad) during her excercises will help with the muscle pain.  I would ask your PT if he uses the electrode therapy.  It helps to rebuild the muscle and can make the straight leg raises easier with time.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: John1 on July 25, 2005, 09:21:46 PM
I have to disagree about it being a hip problem. I can rotate my hip almost 90 degress IF I ALLOW MY FOOT TO TURN ALSO. My kneecap will be facing the other leg like in the picture. If I keep my weight on my foot so that it doesn't rotate as I try to rotate my hip, then the knee can't turn. Try it yourself. What prevents it from turning? The tibia (shin bone) being attached to the femur (thigh bone). If there is some ligament or meniscus tear, then the femur can rotate in the hip joint and the tibia and foot can stay straight because of the laxity in the knee.

Please see Lisa's post of the diagnosis by the doctor in New Jersey. It's on PAGE 8, posted June 16, 2005.

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=15107.105

I think the doctor in New Jersey was onto something: "...posterior lateral subluxation of the tibia on the femur."

John
Title: Re: opinion needed re 13 year old daughter's knee
Post by: stgiles16 on July 25, 2005, 09:27:19 PM
Personally, I READ lisa's many posts. She has gotten different answers from several different OSs. Of course you cant rotate your hip that way,,,,,, it isnt broken or messed up. It wont hurt anything to have the hip checked out, even if it is a knee issue.  The child obviously has a problem and I hope that you find an OS who will listen and will be able to help you.None of us are drs so we can only suggest where to go from here but we all wish you the best.

good luck
missy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 26, 2005, 01:50:48 AM
Hi and thank you to everyone who has posted their opinions,

Well, we went to see this new OS.  He looked at the last MRI of her knee and looked at the xrays taken by the doctor in N.J.  He took another set of Xrays of her knee and another one of her hip.  To those of you, who don't know, she has had bone scan and mri of her hip previously.  The xray he took today of her hip was alright he said.   He definitely felt there is something wrong with her knee.  He said it shows on the xrays and also saw something on the last mri of the knee.  He is sending her for a cat scan immediately within the next 2 days.  He thinks it is Knee subluxation chronic dislocation.  He suspects, like John wrote, it's the tibia or femur and that it is in the upper lateral corner.  He said if the cat scan confirms what he thinks and saw, he is thinking they might have to do partial reconstruction.  Bear with me now as I can't remember everything exactly right.  He said this is an area that is not his expertise so wants to send us to see a Pediatric OS whether or not the cat scan confirms what he thinks.  He showed me on his computer the images, but that's like asking me to read greek.  If she has surgery it could affect her growth plate as it is still open but he said that is only if the surgery injures her growth plate and that she only has a few more inches to go and what is more important - walking correctly or getting taller:)  He said her leg might not go fully back into position.  Said he thinks possibly scar tissue formed when the ligaments (?) healed.  He put her leg in a splint to try and relieve pain and to keep it still until we go back to him this Friday with the Cat Scan films.  Thank you all so very, very much for all your input, concern and prayers.  This doctor seems almost to confer with the doctor in N.J. - I showed him part of the diagnosis letter from that doctor - not the first page - as the first page had more doctors we saw.  But he seemed to be very understanding when I told him we had several opinions and I was afraid that people would think I was crazy but that I just want my daughter to feel better and look normal.    So I will let you all know what happens on Friday when we see this doctor again.

Many hugs to you all! 

Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: stgiles16 on July 26, 2005, 01:54:34 AM
Lisa, I am thrilled that you found an OS who listened and thinks that he can help, even if it means sending you to another OS. Good luck and keep us posted on how everything goes.

missy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Bmm1821 on July 26, 2005, 02:23:15 AM
Hi,
     I am very sorry about you daughters knee trouble. I too was 13 when my knee problems began. I had 8 knee surgeries due to a staph infection. I remember I was in physical therapy for about 3 months. It took me forever to get off crutches. I used crutches for about 2 1/5 months. And when I first started physical therapy my knee hurt so bad that some times I would break down and cry during knee strengthening exercises. I know that you daughter and I probably have had different knee related experience, but when it comes to the physical therapy I know exactly what she is going through. My knee was really tense too. I just wanted to tell you that my mother went through the same things with me during physical therapy. You are not alone. Just try to stay optimistic, even though I kno it seems at times you just want to break down and cry. I hope things will start to look up for you and your daughter. I hope I have somehow comforted you. Send My best wishes to you daughter. I hope everything works out.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on July 26, 2005, 02:39:11 AM
Lisa,

Your appointment today sounds much more promising.  Getting a referral hopefully to someone that might be able to help your daughter is a good thing.  I like the fact that the surgeon took the time to try to inform you with regards to what he is seeing.  This shows concern and compassion.

Finally someone placed a splint on your daughter's leg.  I wondered what took so long for someone to do this.

Think the two of you just might have a good sleep tonight.

Sending hugs,

Shade   [/color]          (http://images.google.ca/images?q=tbn:VfvhBF5pTxwJ:www.eirefirst.com/clipart/gifs/Teddy%2520Bear%2520%26%2520Shamrocks%25201.gif)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 26, 2005, 03:07:56 AM
Hi Shade, Missy and BMM,

Thanks for the encouraging words.  I am really tired so this will be short.  Hopefully we will get a good night's sleep tonight.  Actually Heather is a real trooper, sleeps pretty well through the night despite all of what she has been going through.  She is constantly sending me email cards of encouragement and seems more concerned about me stressing out than about herself.  What a kid!!  She's all smiles so many times and more positive than anyone of us can imagine.  I hope it rubs off on me:)  I am, of course, nervous about possible surgery and so is she but this has been going on for so long, it's got to come to an end and hopefully a good end at that.  Well I am signing off for the night.  Wishing you all a good night's sleep with angels watching over you!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: dimples3887 on July 26, 2005, 04:41:41 AM
Congrats on finding a doctor who cares.  We all know that there are some good ones out there! I'm so glad that he put her in a splint and is taking this all seriously! Good luck with the Cat Scan and keep us updated on what's going on!  I wish you and Heather the best, as always!
Best wishes over and over again-
Dimples
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on July 26, 2005, 05:05:58 AM
Heather and Lisa,

I am SO happy for the both of you. You finally found someone who will listen and knows that shes not making it up. That is so great. Just wanted to wish Heather luck with the cat scan. I know you'll keep us posted on whats going on. You are both in my prayers.

sending you lots of good luck wishes and ((((Hugs))))......

Mo
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on July 26, 2005, 02:16:09 PM
Lisa,

I am so happy you are finally getting some answers and more importantly are on the road to getting your daughter out of pain!!

Best of Luck

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trudy on July 26, 2005, 03:57:09 PM
Lisa
I cant even begin to imagine how relieved you must be.   The first step is finding a doctor who listens and actually hears and cares.   Sounds like you have found one!   I remember when we found a doctor who finally admitted our daughter to the hospital - my husband and I both cried!
Hang in there!   You and Heather are both very lucky people - the bond between you is strong and your unconditonal support and her desire  to comfort you in return will get you both through!   My prayers and hugs are with you both!
Trudy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 27, 2005, 02:53:18 AM
Hi Dimples, Paulette, Mo and Trudy,

Sorry to address you all in one post but the way I am feeling, this is easier for me.  First thank you all so much for your concern and good wishes and prayers!  I found out about an hour ago that my insurance won't pay for the cat scan without a pre-certification from this doctor and his office did not put in the pre-certification.  So I have to phone them tomorrow morning from work and tell them to put in an urgent request.  We were supposed to have the cat scan tomorrow, Wednesday, but now the insurance says it could take anywhere from 24 - 72 hours for it to be approved.  So at the worst we probably will have to wait another week.  Will let you know when I find out.  We had to remove the splint because she took a shower and I thought I wrapped her leg up good enough with plastic but it got all wet.  I don't think it's a big deal as the doctor didn't insist that we use it but thought it would relieve some of her pain.  I will tell them what happened when I phone tomorrow.  Any advice how to shower when your leg is all wrapped up??  Thought if anyone would know, it would be someone here:)  I cancelled the appt. with the pain specialist for Thursday.  I think we should see what happens with this doctor who seems to think he has seen something wrong.  I have also been thinking that when we see the pediatric OS that he is going to send us to, if they want to do surgery, I will tell them that I didn't place all my cards on the table and show them the letter from HSS.  Bottom line if they think she definitely needs an operation (which I think is likely), they will go by the cat scan, etc.  Then again, we live in PA and there are so many doctors leaving because of getting sued.  Guess I better stop stressing and put this all in God's hands.  Actually noone can make this final decision but me and it is a hard one when making it for your child.  You people have been so wonderful with all your support and advice and I am now just putting this whole situation in God's hands.  I prayed a lot while waiting for the doctor the other day with Heather and now see that I need to pray more.  Sorry to get spiritual on you.  Will keep you all posted.  Love you all!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Sharon on July 27, 2005, 05:15:38 AM
Hi Lisa,

Sorry it's been awhile since I've replied to your posts but my surgery was last week and I haven't been feeling up to alot of time on the computer. Anyway, I'm glad to hear that the new OS you saw was so nice and actually listened to you. I'm glad that he was able to give you a referral to a pediatric OS. I'm sorry to hear that the CT scan has to be put off for a few days but hopefully the OS's office will put in the request right away and you'll have approval ASAP. It's probably a good idea that you cancelled the appt with the pain doctor. See what the CT scan and the other OS say first. Good luck and keep us posted!

Hugs,
Sharon
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on July 27, 2005, 05:24:53 AM
Lisa,

About the shower--there is something out there called a "shower sock" that is like a giant, plastic Christmas stocking with a closed toe and a very tight elastic band at the top.  You pull it up over your leg and place the elastic band in the crease of the leg--that way, nothing gets wet.  For safety, if you don't have a foot cast or injury, you should cut the foot portion out, because it may be slick; my doctor has all patients do this.

The other alternative is to have her shower without the immobilizer.  Instead, go to Wal-Mart and get a cheap and easy to assemble shower chair.  Mine was a complete life-saver after my last surgery--I was able to get settled in the shower on the chair and use a hand-wand to wash my hair, or just position the chair so I was right at the edge of the stream.

I'm glad she's finally got a doctor who is treating the *patient* and not some diagnostic images!  It's the best feeling when you have a compassionate doctor who is concerned with his or her patients' welfare!  My current surgeon is like that.  After a bunch of doctors had told me that there was nothing on my MRI's and I just had to push through the pain in PT and 'work harder,' I finally saw a doctor who knew what my problem was and how to tackle it.  He went out of his way to assure me in post-op that my pain had been very, very real and very much located in my knee--not my head!  I thought that was so nice of him.  Even now, when my recovery is going at a snail's pace, he never makes me feel like my progress is out of the ordinary or that I'm malingering or not working hard enough or whatever--he just listens to the issues I'm still having and comes up with suggestions to address them.  Right now, I'm wearing a high level stability brace that is really helping.  It's so nice to have a doctor who listens!  Hopefully Heather has found her doctor....

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 27, 2005, 11:53:33 PM
Hi Sharon,

I was going to write you last night to see how you are feeling.  I read your post when your parents were away and you were worried about the bleeding after surgery.  How are you?  I hope everything was resolved when you spoke to the doctor.  I hope you get relief real soon and that you start to feel much better!

We got to take the Cat Scan today!  After calling the doctor, they phoned my insurance and told me it did not need pre-certification.  The Cat Scan facility told me they needed a referral from her primary doctor and we got that.  Hopefully the insurance will pay for it.  The bottom line is we had it done today and will know the results on Friday when we go back to this OS.  I am going to phone the OS tomorrow afternoon to try and find out the results over the phone.  Will let you know when I find out anything.  Hope the rest of your week goes well!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 28, 2005, 12:00:55 AM
Hi Heather,

Thanks for all the advice on showering!!  That is really helpful!  Glad I asked.  And, yes, it is good we found a doctor who is listening like the one in New Jersey did.  But he is actually going by diagnostic images.  I am really glad he doesn't think she is favoring her knee looking like it does.  Can't believe so many other doctors thought that.  Heather took the cat scan today and I imagine when we return for our appointment on Friday to the OS, he will recommend a pediatric OS like he said.  He said no matter what the cat scan shows, he is sending her on to another OS as this injury is not his expertise, especially with children.  So I will post when I find out anything further.  Hope you'll feel better soon!

Hugs,
Lisa

Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 28, 2005, 09:07:36 PM
Hi,

This is just a small bit of information I got when I phoned for the results of the Cat Scan.  The nurse in the OS office said the radiologist report said there was "no evidence of a complete dislocation."  She also said the radiologist report noted stress responses in the knee.  She said that the doctor will look at the films tomorrow and he can tell me more at our appointment.  Just thought I'd let you all know this much so far.  I started researching on the web about stress responses and/or stress fractures.  Think I will just have to wait until tomorrow to see what this doctor thinks.  To be coninued..........................................................

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on July 28, 2005, 09:11:24 PM
Lisa !!

Just wanted to wish you and Heather luck for tomorrow!!!

Mo
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 30, 2005, 01:59:24 AM
Hi,

Sorry to report that we seem to be back as SQUARE 1.  The OS said all he could see is that her bone is rotated back and he doesn't know the cause.  We needed a note as she had to work at our church tonight and he wrote "chronic subluxation of right knee".  He made two fists and placed them together and showed us how her knee should look and then moved one of his fists on an angle saying this is how it looks and that it was not a complete dislocation.  He said he didn't know what was causing this and is sending us on to another OS who deals with Pediatric OS.  The first doctor they phoned did not have an opening until September 1, as did the 2nd doctor they phoned.  I asked him if he thought we could wait that long as this has been going on for five months now and he thought a second and said he would rather see us get seen earlier as he doesn't know if anything is wrong.  So they are now trying to book an appointment with Childrens' Hospital in Philadelphia.  I won't know how soon they can see us until next week.  So, that is where we stand.  Almost, you can say, we are back at the beginning.  At least he doesn't think she is causing this subluxation by favoring.  He said that's like turning the palm of your hand upside down and who would want to do that. 

Thanks for all your prayers and support.  All I know is that if the next OS we see still doesn't see anything going on, I am going to proceed to the pain specialist in N.Y. and then take it from there.  So onward we go.  Sorry I don't have any better news to report.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on July 30, 2005, 04:23:50 PM
oh Lisa,

I was sure hoping to hear that they had some information on what was wrong with your daughter!! Im so sorry that they didnt!!
Be assured that I am praying for you and your daughter!! Faith goes a long way!!!!!

God Bless and hang in there!! There has to be an answer somewhere

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on July 31, 2005, 03:05:46 AM
Hi Paulette,

Thanks for the encouragement!  I agree, someone has to know what is causing this.  I think that The Childrens' Hospital of Philadelphia, being that they only see children from 0 to 19 years old might have possibly seen an injury like this.  They only deal with kids and might know if she is indeed favoring the position for so long.   All I know is that we are hitting brick walls right now and have to keep going until we get an answer that will help her get better, pain free and looking normal again.  I think noone really knows what to write us now as we have hit so many dead ends.  But as you said, Faith goes a long way, and I truly believe that there is an answer.  We just haven't found it yet.  I know down deep in my heart that God will help us get to the bottom of this problem, because I truly believe that nothing is impossible with God.  We will find a way.  It's just he waiting that I have to deal with now.  Like I said in previous posts, I am going ahead "full speed".  Thanks for writing and for your prayers. 

Hugs!
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: RN2BNVA on July 31, 2005, 01:28:39 PM
Greetings Lisa...

I have been following your daughter's knee story for a while but have not had much time to post.


I certainly hope that they can figure out something for her! I hurt my knee when I was nine and I was miserable for YEARS because the OS we went to refused to do anything because of my age. My mom being the trusting person she is, never took me for a second opinion and instead we just waited... I spent 3 years on crutches before the OS would finally do the surgery. I was always told it was not severe enough or that I was too young, etc... when he got in there things were not as pretty and easy as he thought. Oddly enough, I was being treated for chronic subluxations at that time as well.

Now, 10 years later, I am dealing with the subluxations again. After having one OS completely ignore what was going on I searched and found another... and then another... and eventually the 4th one was awesome. Persistance is the key (as if you do not already know that!) and even though this will require another surgery on my part it will be worth it to be able to do normal activity again.

Give Heather a hug from me... I know how hard it is to sit the summer (or any other time!) out while your friends play... and even harder when they ask what is wrong and all you can do is shrug your shoulders. Hopefully, the new referral to the peds OS will shed some light on the situation.

Good Luck!
Alnee
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 01, 2005, 01:35:52 AM
Hi Alnee,

Thanks for writing us.  I gave Heather a hug for you:)  Sorry to hear about all your knee problems.  Heather said good luck on August 2nd.  Me too!  I guess your mother listened to the doctor when you were 9 as you were still growing.  If they for some reason or another would've injured your growth plate, that wouldn't have been good.  It's true, like you said, when someone asks Heather what happened to you it's hard to give an answer when even all these doctors don't know what is really going on.  So  now it's off to another OS and guess we'll take it from there.

Let us know how your doing if you get the chance to post.  Hopefully everything will go well with your procedure on August 2nd.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 02, 2005, 02:02:59 AM
Hi,

I know many of you probably do not know what to say to me and Heather after the last disappointing diagnosis.  I understand and that's no problem.  I, too, would not know what to say:)  I just wanted to let you all know that a referral has been set up for Heather to be seen at the Childrens' Hospital of Philadelphia on August 17.  Don't have all the details yet, just the date.  Like I wrote earlier, if anyone should know what's going on I would imagine they would as they only see children.  But then again with our luck you never know.  Hey, at least I can smile and so can Heather.  It's amazing how we're getting through this, and Heather said, with a smile, "do you know what's amazing?  "We're getting nowhere."  But I really have faith that this will all come out with a happy conclusion.  Let you know what happens on the 17th.

Hugs,
Lisa and Heather ::)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on August 02, 2005, 03:03:38 AM
Lisa,

One thing popped in my head while reading your latest travails with the medical profession....my current surgeon invented a new kind of MRI machine.  It's called a kinematic MRI, meaning it takes pictures while the patient is in motion.  It's a well-known fact that SOME people out there do not have subluxations all the time, just when their leg is at a certain range of motion.  The kinematic MRI is designed to catch this problem.  I know of at least two people who had seen several doctors who just scratched their heads--but when they went to see my surgeon in Colorado and had the kinematic MRI, a subluxation was easily seen/diagnosed and the problem corrected surgically.

Just a thought--while Heather has had several tests, they have all been 'static' or when she was placed in a certain position and held still.  There might be better information gained if she can be seen by a gait analysis or motion analysis laboratory.  Something to think about when you see the new doctors.

Hang in there.  I had several really unhappy months while the doctors tried to iron out my issues.  It turns out that PT resolved them for almost 20 years, but those first few months were very painful.

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 02, 2005, 04:23:01 AM
Heather,

Thanks for mentioning this new type of MRI to me.  I will definitely bring it up when we go to Philadelphia in a couple of weeks.  Will keep you posted on the visit.  It's late and I'm tired or would write more:)  Hope all is as well as can be with you, and hope the rest of your week is good!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on August 12, 2005, 01:08:14 AM
Lisa,

Just want to wish you and Heather well on August 17.  I do not understand why there has not been a diagnosis.  Think that one guy came close, that was awhile back.....

It just must be so exhausting for both of you.  Hopefully, this will be the place.  Heaven only knows you have done all the right things.

Good luck,

Shade  
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 12, 2005, 05:07:39 AM
Hi Shade,

Thanks for the good luck wishes on August 17.  I, too, hope that finally a diagnosis will be made.  This kid has been on crutches for way too long.  I know one thing and that is she has to start physical therapy within the next few weeks if they don't suggest surgery.  The doctor she is seeing has some very good credentials and from what I've researched works with kids with sports injuries so I am hoping he will know what's going on with her knee.  School starts for the kids August 29 and I'm hoping she will be on the road to recovery by then.  Will keep you and the site posted as to the outcome of our visit.  Sure hope I've done everything I could so far.  Don't know what I'll do if we hit another dead end but I don't think we will - my last resort will probably be that pain specialist in N.Y. but I am hoping for an answer on August 17.

Hope all is well with you.  Thanks so much for writing!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on August 12, 2005, 02:02:54 PM
Best of luck to you on the 17th!! My thoughts and prayers are certainly with you guys!!!!

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 13, 2005, 02:23:06 AM
Paulette,

Thanks for remembering us on August 17.  The support we have received from this site really helps carry us through.  Your thoughts and prayers are very much appreciated. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on August 15, 2005, 01:52:17 PM
Lisa:  I'm so sorry you're back to the beginning in all this.  At least the OS did say there is something there, they just need to find the root cause.  So many Doctors tend to fall back on the "It's all in your head" thing when they can't find anything obvious.  The real cause may be in the hip, but they just haven't found it yet.  You and Heather are in my prayers.   :-*
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 16, 2005, 04:19:01 AM
Hi Swikle,

Thanks for your prayers.  Hopefully we'll have a more definitive diagnosis Wednesday.  Will post when I hear the next "specialist" hmmm opinion.  Sorry if I sound skeptical but sort've rolling with the punches so to say - have to in order to keep my head straight these last few months.  Hope all is well with you.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Janet on August 16, 2005, 02:07:16 PM
Lisa:

Good luck to you and Heather tomorrow. There just has to be someone who can help you!! Here's hoping tomorrow's the day you find that person.

Janet
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 17, 2005, 01:58:06 AM
Hi Janet,

Thanks for the good wishes for tomorrow.  I, too, hope tomorrow's visit turns out to be good!  Right now I can't find any of my paperwork - everything is scattered all over the place.  Can't even find the diagnosis letter from HSS.  Thank God I wrote down what it said on this site when I posted.  At least I was able to print that out lol.  I am only going to show it if they suggest any sort've surgery as then I would have to lay my cards on the table for my own piece of mind and Heather's well being.  To top things off, I have this problem with an upstairs neighbor who threatened me tonight.  Long story.  Very intimidating "big" woman with a "big chip" on her shoulder.  So I am trying to calm down and collect myself for tomorrow's visit. Will post first chance I get.  I pray something positive happens tomorrow.  Could use a few prayers!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on August 17, 2005, 09:16:30 AM
Lisa and Heather,

     Good luck tomorrow; I have a feeling this may be your final stop.  I will be awaiting your report.  Make sure he gives you some sort of diagnosis or possible diagnoses, and what you need to do to restore her knee back to normal.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trudy on August 17, 2005, 01:25:18 PM
Lisa

My thoughts have been with you and Heather so much lately.   My heart is pounding in anticipation.   I truly hope this is the Day!!!!   Keep your spirits up.  So many wonderful people are praying for you and Heather!!!!!! 

Trudy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 18, 2005, 01:30:49 AM
Hi,

First I want to thank everyone who wrote us.  Thank you also Trekker and Trudy for your good wishes and prayers for today! 

Okay - this is what happened - Dr. Ganley reviewed the MRI and catscan of her knee.  He took me and Heather into the room where our CD was on the computer and showed us the MRI.  He speciifcally was looking at the PCL.  He said it looked like there was a small tear on the lateral corner of the PCL.  The ACL looked intact.  He told us that he did not think this sort of injury would cause her knee to get inverted as it is.  He said he never saw anyone as young as Heather with this sort of injury.  He wants us to go to a doctor at Geisinger Medical Center in Danville, PA who is supposedly the tops in his field when dealing with lateral corner injuries.  He said this doctor will know if surgery is necessary.  If he does not think surgery is warranted he said they have an excellent doctor at the Childrens Hospital of PA who works with deformities to help straighten out the problem.  He doesn't know why her leg is deformed looking.  He was very puzzled looking and asking us who we saw and he consulted with another doctor while we were there.  At the end, I took out the diagnosis from the Hospital for Special Surgery in N.Y. where they wanted to send her to a pediatric pain specialist for pediatric pain syndrome, not specifically RSD.  He said he did not think it was RSD and that he really wants her to see this doctor in Danville as he is tops in his field.  So this is where we stand right now.  At least we are moving forward.  I am going to schedule an appointment as soon as they can get us in.  I have to say that the Childrens Hospital of PA was wonderful - caring, family friendly doctors, nurses, staff, etc.   When I get a copy of his written report I will post you some info from it - but that will take a few weeks until it's transcribed.
He wants her to stay on the crutches and try to do a little stretch once in a while to keep her leg moving.  I asked about pt but he thinks she has to be seen first by this other specialist.  I am going to look up their credentials on the internet. 

Well, we hoped for a miracle but Heather feels at least we are getting somewhere.  Thank you all so very much from the bottom of our hearts.  Your compassion, caring and support/prayers are a huge help to us.  Will keep you updated as usual.

Hugs,
Lisa and Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on August 18, 2005, 01:35:24 AM
Lisa & Heather,

Maybe not a miracle, but you did not get turned away.  Being referred to a top of the field specialist is a good thing. 

Hopefully you are on the home stretch and things will start moving quickly now and you and Heather will finally get some needed answers.

Wishing all the best.

Thanks for posting,

Shade
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on August 18, 2005, 07:29:32 AM
Lisa,

This is progress, believe it or not!  This is good news, so treat it as a positive step toward resolving this problem.

One quick question--did he say PCL or PLC?  Because the PCL is the posterior cruciate ligament, but a PLC is a postero-lateral corner problem.  It's incredibly rare, and should only be taken on by a very experienced surgeon.  So that would explain the referral to the top guy in the field.  I'm just not sure because the first time you said PCL and then later you wrote 'lateral corner.'  Anyway, the PLC or postero-lateral corner issue would absolutely explain all the difficulties you've had with getting a proper diagnosis, because many doctors don't even recognize the problem!  So that would make a lot of sense to me.

You might want to look up PLC/postero-lateral corner posts by ATSoccergirl, because she has dealt with this.  So has another poster with the user name KJ. 

Hang in there, you are making progress.

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 19, 2005, 01:46:55 AM
Heather,

I think you are right!  It probably was the PLC because he said the lateral corner.  Darn, I wish I had the report in front of me but it still is being transcribed.  I am awaiting an appointment date with this specialist that does this type of surgery as he is supposed to be the one who would know if she requires surgery.  I will look up the names you told me about.  Just don't know where to locate them on this site.  Help me out if you can.

Shade, thank you too for your concern.

Will keep you all posted as to what is going on.  It's amazing that so many doctors don't know what to do.  The one thing that is concerning me now is that this type of injury supposedly does not cause the distortion of her leg like it is now.  Oh well, at least we are moving on.  Something has to be done soon - I pray! 

Hugs,
Lisa and Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on August 19, 2005, 01:05:11 PM
Lisa:  It's a start.  You and Heather are on your way.  Torn ACL and PCL's are hard to detect, but this doctor found it. I know going to another doctor may not have been what you wanted to hear, but it's a step. I'll continue to keep you and your brave Heather in my thoughts and prayers.   ;D
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on August 19, 2005, 03:02:26 PM
Lisa, been awhile since I wrote you. So glad you are getting some results now!!! You are doing an outstanding job in helping Heather! I am sure she appreciates all you do as well.
As for find the Members list Heather M told you to checkout , here is the link to that page and you can do a separate Members Search or go Alphabetical.. http://www.kneeguru.co.uk/KNEEtalk/index.php?action=mlist 

Hugs and prayers !! Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: katmomx2 on August 19, 2005, 03:30:33 PM
Lisa,
I have not written in a while, but I have been following your story. I am very happy to hear you finally have a direction to go in. You are an awesom mom. You and Heather are in my thoughts.  Good luck at the specialist.

Hugs and prayers, Kat
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 20, 2005, 01:09:46 AM
Dear Swikle, Ron and Kat,

Thanks for your encouragement and kind words.  I am still awaiting an earlier appointment with the next specialist.  Hope to know when that will be by Monday.  I was reading some notes from the doctor who sent her to Childrens Hosp. of Philly and might post them later.  Not that it could be what is wrong but, like you said, at least we are moving on and not standing still.  7 is my lucky number so who knows maybe doctor No. 7 will hold the answer.  It's really amazing how so many doctors can't diagnose her condition and sit there staring at us trying to figure out what is going on.   I am sort've wondering now that since she is still growing, if they have to do any sort've surgery on one leg, if that will affect the eveness of both legs as she grows.  Guess I will have to wait and see what they say and ask that question. 

Will post later on tonight some notes from the doctor who sent us to Philadelphia.

Thanks again.  Hope you all are feeling well and have a happy weekend!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on August 20, 2005, 08:40:18 PM
Lisa and Heather,

I'm so happy that you guys are finally getting some answers. That's great news. Wishing you both the best of luck with the upcomming doctor. Keep me posted. You are both in my prayers.

Morgan
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 21, 2005, 05:48:49 AM
Hi Morgan,

Thanks for your good wishes.  Hope you are feeling better after all you've been through.   Will post the next appointment date. Hope the week ahead is as pain free as possible for you!  Take care.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on August 21, 2005, 10:34:23 PM
Hi, I was just surfing through your daughters case and couldn't quit reading.  My heart goes out to you and your daughter.  Also your other daughter. I know it must be hard on her also.   I am also a mother of 2.  There is nothing worse than not being able to make your childs pain go away.  I want to applaude you for your persistance.  Educate yourself as much as possible about the knee problems that have been put in front of you so you will feel more secure in rebutting the Drs.  I know that has been what has  helped me tremendously.  They seem to listen to me more now that I know better about what they are saying. 

I sure do hope you all find a solution.  I know at this point you just want a diagnosis, so you don't feel crazy.  You can't start to fix a problem until you know what the solutions are.  Heather must be very brave at her age to have gone through so much pain for so long.  She will really be able to help others in her life because of this. 

Can't wait till you next post!  Hope it is one you are excited about writing.  Keep your chins up.  Your are a great Mom!  Good Luck!

Cindy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 22, 2005, 03:00:02 AM
Hi Cindy,

Thanks for writing.  Actually my other child is a boy (smile).  The whole situation has no real impact on him.  Teenagers!  I had to take both kids for school clothes today and let me tell you when Heather had to try on the sneakers I told the gals there that they definitely have a sale as she can't really walk on them. 

Thanks again for following our posts.  Hopefully the next time I post will be with the new appointment date.  I have been trying to research as much as possible on the internet.  Came across something called Posterolateral Rotary Instability of the Knee which I believe comes from an injury.  Don't know what that's telling me but just trying to figure out what's going on.  I hope you have a good week!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swift on August 22, 2005, 11:05:51 AM
Hello,

It's my first time making comments over here, but I feel that I should make my contribution to this case.  First of all, I'd like to tell you to stand tall and continue to be brave with your daughter, as you have been since her original injury.  From the first postings, I guessed that this could in fact be a PLC problem!  I am myself a PLC case (quite a complicated one indeed, which has been going on for about six years now!).  I am tending to stick to the feedback you got from 'trekker' and 'john1' that it is in fact a posterolateral compartment issue.  I torn all of the posterolateral compartment in a football injury some years ago.  My knee had no swelling whatsoever, but the shape of my knee 'twisted' completely.  I have not managed to see your daughter's pictures ... i'm sure i'm doing something wrong there, but as you explained in one of your postings, I'm quite sure it looks something like my knee, though not so severe!  Believe me, the plc is a very strange issue, with very few physicians not even knowing what it means, let alone treating it.  I was very lucky to find a sports doctor who diagnosed my injury from day 1, but I was even more unlucky that all OSs over here don't even know what it is like.  I come from Europe, outside US anyway!  After about 4 scopes, with no positive outcome, and don't know how many MRIs and ct-scans, I had complete sublaxation of the superior tibular-fibular joint.  Every time that I was flexing my leg, I used to get a 'clung' at the lateral side of my knee, with, needless to say, lots of excruciating pain.  This led to an arthrodesis of my joint with fibular resection ... it hurt and was a hell of a complicated surgery.  After lots of physio and gym work every single day, I was told to go back to sports because I had regained muscle balance.  There I went and after 10 minutes, during an international overseas tournament, my knee cracks again!!!!  After all this telenovela, I was referred to an OS here in Europe, but outside my country, who operated quite a few popular footballers.  The moment he saw me, he did not even examine my knee, but my foot and the way it rotated completely, he said that it's a completely torn plc that needs reconstruction.  I had plc reconstruction about 18 months ago, and to be honest, I'm still having problems, but my dr here says that are being caused by the staples inside.  Most probably, I will have to go back to my OS to have it reviewed, which is quite a hassle cause I have a 3-hr flight for that! Actually I posted on other parts of this forum with however very limited feedback, cause, there are very few people out there who have gone through this, luckily enough.  On the other hand, I am quite surprised that you are finding so limited support from OSs over there, because I have always been told that the best OSs regarding this blessed plc are there in the US!!
I'm sorry I wrote all this, but I'd like you to make sure that you go to the right person.  Sometimes I realise that the more advices you seek, the more complicated your case gets.  You have to find a person whom you completely trust and just continue praying for you and your daughter's health.

I really wish you the best of luck!!

tg



Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 23, 2005, 02:29:01 AM
Hi Tg (swift),

Thank you so much for such a detailed post on the problems you have been suffering with.  I appreciate your support and contribution to my daughter's complex knee injury.  I spoke to the appointment office of the specialist who deals in plc injuries and they were extremely compassionate.  The woman agreed with me that this can't wait another month for an appointment and will try her best to schedule my daughter asap.  Supposed to hear from her tomorrow.  I am so sorry to hear of all the pain and discomfort you have been dealing with.  I hope you will be able to get back to your OS to review what's going on with you.  I hope and pray that this next doctor will finally be able to diagnose the cause of her injury and fix it.  As to feeling comfortable with a doctor, well don't know how comfortable I will be no matter who we go to.  All I have to rely on is blind faith and trust that all will work out for good.  No need for you to apologize for such a long post.  It is very much appreciated.  All the feedback I can get is a help in trying to discern what's going on.    I wish you pain-free days ahead. 

Hugs,
Lisa 

Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 24, 2005, 05:03:36 AM
Hi,

Just wanted to let you know that Heather has an appointment Monday August 29 with the specialist at Geisinger Medical Center in Danville, PA.  Thank God they took seriously the length of time this injury has been going on and received the report from the doctor who sent us to Philadelphia and pushed up her appointment 1 month.   I want to thank you all in advance for your wishes and prayers for this next appointment.  Let's hope we get an answer so she can start getting off these crutches and re-align her leg.  It's the first day of school, which obviously she can't go to.  I phoned the school and am bringing papers from them in case she has to have home bound instruction in the event of any surgery, etc.  Don't know if I told you or not but now her 15 year old brother has been having pains in his right hand (too much x-box I think) and they xrayed it and everything is fine but he is still complaining and they might send him to pt.  Personally I can't help but think he wants some more attention after all he sees his sister going through.  Don't know how I am keeping sane:) 

Anyhow will post probably after appointment Monday night or Tuesday. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trish85 on August 24, 2005, 08:31:34 AM
Hi Lisa and Heather,

 I am sitting in bed unable to sleep because of the pain I'm having in my knee and I  ironically ended up on this site which tends to happen when I'm in this position.  But tonight is the first night I've read about all the problems that Heather has been having and I couldn't stop reading.  I have had my own issues with a doctor just pushing me off saying there is nothing more I can do for you after seeing me for a few years.  This coming froma world renowned OS.  But I was lucky enough that a family friend recomended this great doctor that I am now seeing and prefromed my 7th knee surgery back in June after seeing meand telling me that my knee was one of the worst that he has seen with PFS at the stage it was surgically that he has seen in his 20 some odd years of being an OS. 
 But I just wanted to say dont give up everything will work out in the end with Gods help.  Keep in mind everything happens for a reason.  Which I know reading that right off the bat you say what he hells the reason for her to have to surfer but it could just be to teach all thosearound her to be strong.  If you think about it that way it might make it easier.  Good luck on Mondays and my thoughts and prayers will be with you.

Trish
Title: Re: opinion needed re 13 year old daughter's knee
Post by: RebelsNMisfits on August 24, 2005, 02:46:09 PM
Hello Everyone,

I can sympathize with you Lisa over the fustration you are having to endure with the OS's and their inability to find and correct your daughters knee problems.
I am 42 now and have been having problems since I was 15. With the advancements in medicine over the last 20 years and the lure of big bucks it seems that the medical community has been infiltrated by what I call the mediocre doctor. You know the one who is in it just for the possibility it will make them rich and successful.They put just enough effort into their training to make it through till they can get established and then they stop. They know just enough to make them dangerous in my opinion. Needless to say I have seen my fair share of these doctors over the years and was so frustrated at times because I knew how much pain I was in but they kept saying ....well the x-rays really don't show anything wrong. It took one doctor who said, well you know x-rays may not show everything so let me go inside and look for myself, then we can see what is the problem. It took him 15 minutes in the operating room to tell me, ( I had a leg block and was awake for the surgery), that he was so sorry his fellow doctors hadn't done this sooner and that I was basically looking at a lifetime of pain because too much damage had been done already for him to repair.
He sayed I will clean it up the best I can but you will be in pain for the rest of your life and that I would have to give up my career and change my lifestyle to make it easier on my knees until they could be replaced.

15 years later and all it took was a recommendation to see a certain Orthopedic Group from a well trusted family doctor,( one who cares more about her patients than her bottom line) and here I am today. Sitting at home  healing from the hopefully successful repair to my knee. The OS didn't even blink an eye. He examined me after talking to me in great detail about my history the type of pain location etc. He said I can fix your knee for you this is whats wrong and I have 40 patients who have had this same pain and it has corrected it for everyone of them. That sold me. I never thought it would happen but since the surgery I haven't had that same pain yet. I am having the pain of the surgery but the once excruciating pain that was always there is now gone and soon I hope the surgical pain will be gone.

I guess what I am trying to say is don't give up. If your not satisfied go see someone else till you are. If I am correct you live in Pa and have gone to Philly.....I am about 2 hours south of there and would recommend this group to anyone who has knee problems......So if you want the name just let me know. Keep your chin up and tell your daughter we are thinking of her.(I have 2 - 16 yr old daughters)

Earl
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 25, 2005, 01:51:12 AM
Hi Trish,

Hope your pain is much less as you are reading this.  I feel bad that the pain has kept you up at night.  Thanks for the encouragement about not giving up.  It is really hard sometimes.  Actually before sitting down at the computer tonight I was speaking with a friend on the phone and was so upset about how we are being pushed from doctor to doctor.  I have these moments but they pass.  I just hope and pray that we will have good news to report after Monday's visit.  Thanks again for writing.  Hope the rest of your week goes better for you!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 25, 2005, 02:02:05 AM
Hi Earl,

Thank you for writing.  I would be interested in the name of the orthopedic group you saw that actually finally helped figure out your problem.  Hopefully our next appointment will turn out better than I am expecting.  I am sorry to hear of your years of pain.  I hope your surgery heals well and fast and that you will be virtually pain free after so many years of suffering. 

Hope the rest of your week goes well.  Thanks for sharing your story with us.  Obviously we are not alone when it comes to the frustration of being sent from one doctor to another.  I feel sometimes they are so afraid of being sued that they would rather do nothing.  Personally I would rather they did nothing than do something that would make her condition worse.  But you would think that someone would care enough not to want to see a child go around in pain and allow it to go on as she is growing, thereby chancing her bones to form deformed.  Somewhere out there, there has to be a caring physician who can start to help.  One doctor in New Jersey wanted to go in and scope but as I said in prior posts I had to get a second opinion when it came to surgery on my child.  So much for second opinions as we are now about to go to the 7th doctor.  Gotta keep the faith though.  It's all I have right now to rely on. 

Take care!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trudy on August 25, 2005, 09:08:35 PM
Lisa

I know I have "harped" on all of this before.  I just want you to know that I try so hard not to remember the years of frustration and heartache I went through with my daughter.   After the undiagnosed hernia which led to them wanting to put her under psychiatric care - she developed severe TMS, Fibromyalgia, ITP, she had one infection after another - was always so sickly - she spent all of her time going from doctor to doctor.She was home schooled for her entire high school years.      Finally after years of this  - quite by accident we found out she had an immune disorder that was literally eating all of her platelets.   A hemotologist was able to get things under control.  Just as she was starting to live life again she was in a serious car accident and wound up with a broken jaw (wired shut for six weeks) along with bruising, sprains, etc.  She was lucky - they removed the kids from the car  with the jaws of life.  I know I am going on and on but my point is that today she is a vibrant, healthy, happy 23 year old woman -  she runs, she exercises - she is a vegan - she is happy and confident and going to school for holistic medicine.  KEEP YOUR FAITH!  Without us to believe in then and push and prod and keep them going - they have nowhere else to turn!   You are Awesome! I know how hard this is and trust me when I tell you - you and Heather are in my thoughts and prayers daily.
Trudy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 26, 2005, 02:25:06 AM
Hi Trudy,

Just want to tell you "you are AWESOME too"  after all you've been through with your daughter!  Thank God she has turned out to be so wonderful now.   Thanks for your concern and especially for your prayers!  Keep your fingers crossed for us Monday and also pray that this doctor does not charge a fortune as he is out of our network and I have to pay 20%.  You know how they can charge insurance companies more than they should.  Will hopefully post Monday or Tuesday.  Being it's the first day of school I am probably going to be overwhelmed with paper work from my 15 year old son.  Heather can't go back obviously until we see what they say on Monday.

Hope you have a good week.  By the way my daughter is turning out to be a Vegetarian too - drives me nuts!  I love meat - steak, etc.  She has to eat what's on the table and you should see the looks I get.  She wants to be an actress like her mother once aspired to - still think about doing it, just have to relocate back to NY.  Sorry I got side-tracked but actually it's good to get my mind off of things for a moment.

Have a good weekend!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on August 29, 2005, 10:18:15 AM
Lisa and Heather, good luck; I'll be thinking of you!  Who knows; this may be one of those cases that ends up as a case study for future orthopedists; Lord knows some of them could use a little more studying!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on August 29, 2005, 01:18:33 PM
Hi Earl, I read your post, and I can sympathize.  I've just started on the knee surgery road, and I admire your courage.  My OS said that I would never be without pain because me knee has been severely damaged by injury and arthritis.  It has begun to lock recently, and that may mean another surgery.  But I've learned in this short time and by reading everyone's posts that you learn to cope and go beyond the pain.  I admire everyone here for their support and strength in the face of such odds.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on August 30, 2005, 01:07:07 AM
Lisa and Heather,

My thoughts and prayers were with you today hope the appointment went well!!!

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 30, 2005, 04:31:23 AM
Hi,

I don't know where to begin - First let me say that at this moment I am very down, just want to cry and cry.  The appointment was a nightmare!  Had a 2:15 p.m. appointment - doctor was running late and we didn't get in until after 3:30 p.m.  They took another x-ray which I tried to tell them we didn't need.  They said he needed one to rule out an ACL injury.   This is after I told them we had numerous xrays, mri's, etc.  But they went ahead and did another of her hip.  Guess they need to make money at my expense. 

Sorry to get off track here, but bottom line is the doctor she was first supposed to see asked her age when she was in xray (I wasn't present and had no idea any doctors were questioning her at the time).  She told me they called in other doctors and that this doctor we were originally supposed to see wanted her to see the Director of OS there.  They said her hip was injured and that was why her knee was out of place.  When I told them then why did the mri and bone scans show nothing wrong with her hip, they all of a sudden after having us wait in another room, said there was nothing wrong with her hip!  The Director told us he had never seen a knee like Heather's and said she was favoring this position.  Poor Heather started to cry and cry and cry!  He told her come on move it back.  She was in pain and said she couldn't and then he said well maybe we will place her under anesthesia and see if it goes back in place and cast her.  Possibly do an arthroscopy but really did not want to if it wasn't necessary.  He went on to say that he doesn't do this sort've procedure but would now like the doctor we originally were scheduled to see to examine her as he does this procedure.  When he walked out of the room, Heather was still crying and apologizing to me saying if she was causing this she was sorry but she is in pain and isn't doing this on purpose.  I felt so terrible as I know her pain is real and just to look at her knee you can see something is definitely wrong.  They had us waiting and waiting until the clinic practically closed for the night.  They took another xray of both kneecaps and finally this doctor came in the room at about 5:30 p.m.  Seems he was seeing every other patient first!  He examined her on the table and told me this was a very unusual thing that he never saw a knee like this in his life.  I told him all the doctors we were to and he asked for the MRI reports.  I told him I was told only to bring the MRI as 2 doctors thought they saw a possible posterolateral corner injury.  He said he did not want to look at the MRI but the reports, which I did not have.  He said that the technicians who read the MRIs are what he goes by as they are the experts.  I told him that the reports are negative and why didn't he want to look at the CD I brought in.  He refused to - shook his head and said he had no idea of why her leg is like it is.  He would not do an arthroscopy unless a report showed something wrong.  More or less said he was sorry but there was nothing he could do.  I was frantic at this point, asides from being a smoker and going over 4 hours without a cigarette I must've seemed totally stressed to him.  I said but her leg is deformed and there's nothing you can do??  He shook his head no and said well perhaps you can take her to (forgot the name) some place that deals with unusual conditions.  He said to let him know when we find out what's causing her knee to be over, and walked out of the room!

So here I sit, typing to you all, heartbroken for my daughter and completely at a loss and feeling so helpless watching her limp around on crutches with a deformed leg because nobody wants to touch her and help.  I marched out of that office ranting about guess it's a money game with all the xrays, etc. etc. Am now probably after work tomorrow going to phone Philadelphia or the doctor who sent us there and possibly the doctor in N.J. but after all these doctors don't want to do anything, figure the one in NJ will go along with the crowd.  All I know is that it hurts real bad and I can't understand how they can do this - guess they are afraid of malpractice!

I want to thank you all for your prayers and concern and I know how sorry you must feel for us.  I am sorry I didn't have good news to report.  I don't know what else to say right now.  I'm pretty tired from the trip to the doctor - it was about 2 hours each way.  Thanks again for being here for us!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on August 30, 2005, 12:50:11 PM
Oh God Lisa, I am so sorry.  :'(  Heather sounds like she is at the point where she is wondering if it is, indeed all in her head.  Heather, I've been there, and it is not in your head.  You're not making it up, sweetie, and it is definitely NOT YOUR FAULT.  Lisa, you are one heck of a mom, and I can understand your frustration.  Going back to the doctor in NJ sounds like a good idea.  My thoughts and prayers are with you.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on August 30, 2005, 08:14:51 PM
Lisa,

I am so sorry to hear that your visit went so bad. I dont even know what to say. Keep your faith- God will come through for you guys. I know it seems like he isnt listening sometimes but there is a place that he has in mind for your daughter to get well and he will guide you there!!

Please feel free to PM me anytime. I was frantic when my son (6yrs old) injured his knee so I can feel for you and what you are going through

God Bless
Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Julia C. on August 30, 2005, 09:14:30 PM
Hi Lisa
I've been following your thread since I joined and am very moved by it. I have no advice, but wanted to send a hug to you and your daughter. You're both very strong and you're so right to keep on pushing for an answer. It maybe worth trying the place he recommended that deals with "unusual conditions"?
Best wishes to you both.
Julia
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on August 31, 2005, 04:50:13 AM
Hi,

First I want to thank all of you who wished us luck and who wrote after my post last night.  Sorry I am not addressing you each by name as I usually do but I am sort've really down right now.  I think you all understand.  Had to fight back tears in work so they wouldn't send me home.  I phoned the doctor in Philadelphia today and told his receptionist the story about yesterday's visit.  She felt really bad and said she would tell the doctor tomorrow as he was in surgery or something.  I also phoned the doctor's office who recommended this doctor to begin with, before we even went to Philly.  They said they want to get the written report first before the doctor could talk to me.  I told her the written report will more than likely say how stressed I was and how upset Heather was.  She said I was probably apprehensive before going there and I told her no I was actually hopeful.  Anyway, I will hopefully speak to someone from the Childrens Hospital of Philadelphia tomorrow and see what they say.  I only have transportation to get there till September 10 and then my friend who drives us won't be available till after the first week in October.  By then this injury will have gone on for almost 8 months.  I hate to see my kid in pain but you know more than the pain I am so worried that she will be permanently deformed.  Guess I have to storm heaven.  Been asking for lots of prayers - someone, somewhere, somehow has to help.  I have to keep myself together because I feel that I am going to break down over all of this.  Feeling helpless is awful.  I am trying so hard to keep the faith.  All I can do is pray that her leg looks normal again. 

Thank you all for your support and kind words.  It means so much especially right now.  A friend of mine said she could understand a little why they don't want to touch her as she is such a pretty girl and the doctor said that he didn't want to scar her and go inside without first seeing written evidence.  But I think that they are more afraid of malpractice. 

Will keep you posted.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trudy on August 31, 2005, 08:21:20 PM
Lisa - All I can say is that I am prayiing you will find your "angel".  Someday you will look back on all this and be totally amazed at how strong you were - I know that sometimes right now you dont feel strong but you have been there for Heather 200% and she knows that!  Dont give up the fight.  The right person is going to show up at some point and help you - I know it!!!!
Trudy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: mhsflute07 on August 31, 2005, 09:40:45 PM
Hi Lisa,

I haven't posted to you before, but I have been following your posts from the beginning. I'm so sorry for all you have gone through. It is totally not Heather's fault! I honestly don't know why so many OSes are like that....it's bizarre. I had an OS want to do a surgery on me that wasn't going to work for cosmetic reasons....it was arthroscopic, so very minimal scaring. It was the dumbest thing I ever heard, and we never went back to him. I hope and pray you find a good OS. Don't lose faith....we are all here for you!

~Erin~
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 01, 2005, 02:57:57 AM
Hi,

Just wanted to let you know that the receptionist from Philadelphia phoned me this afternoon.  She said she told the doctor what happend at our appointment on Monday but that he could not phone me until tomrrow, Thursday, as he has been in surgery.  Hopefully he will be able to talk with me tomorrow.  I said to her that I was hoping he would do an arthroscopy to see what was going on.  She told me that this doctor was not the type to do an exploratory surgery.  She said to me if someone has a headache they wouldn't open their brain to see why.  Sounds like Philadelphia is afraid to do this procedure also.  The only doctor who wanted to was the one in N.J. but I needed a second opinion and have not gotten a confirmation since. 

I will let you know what happens if I get to speak to this Dr. Ganley from Philadelphia tomorrow and see what he suggests next.  I am thinking that he will probably suggest seeing a doctor there who deals with deformities from car accidents or broken bones.  Don't know if that's the best thing.  I am confused as I know any kind of surgery, arthroscopy, etc. can cause scar tissue which can cause issues so I hear, yet arthroscopy is the least invasive.  I have to trust my gut right now and my intuition and go forward.  I dread going to another OS, or pain specialist etc. and again have to repeat the story over and over but guess there is no other choice.  People have been telling me of different OS's in case I need to look further which I feel might be the case.  Heather thanks you all for your prayers and support.  She is happy that you believe in what she is saying and feeling.  She's standing right here next to me as I am typing this and I think it's time for her to get to bed and ready for school. She's been going on crutches and carrying on as best she could.  She said her knee kills her at the end of the day and her hip gets really sore until she relaxes for a while after she gets home.  So I wish you all a good day tomorrow. 

Hugs (((((everyone)))))))

Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trudy on September 01, 2005, 12:46:37 PM
Lisa - Just a suggestion - I did this with my daughter.   I wrote up a complete synopsis of her situation from beginning to end - (keeping it as short as I could because as we are both aware we could write a book about what our daughters have been through)  and mailed it and/or faxed it to every specialist (in this case os) that I could find and asked them to please take the time to read it and at least point me in the right direction.  I did get a few responses.   Just a thought!   
Trudy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Natalie.D on September 01, 2005, 01:56:02 PM
Lisa,

I have not posted here before but have been following your story and I felt compelled to say how sorry I am for you and your daughter's situation.  I have no answers I just wanted to add my support and wish you all the luck in the world.  I do think you may be right in getting an arthroscopy done, it seems to be the only way forward, but I like Trudy's suggestion, it may be worth a try.  Good luck I really hope you get some answers soon.

Natalie.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Janet on September 01, 2005, 10:32:17 PM
Lisa:

I am so sorry for you and Heather. I just wish that even if a doctor can't help a patient, they would be kind and understanding and explain why they can't help! My gut feeling is that they are as frustrated as the patients, but can't admit it. But it still steams me.

Remember.....You definitely don't want someone to do surgery if they don't know what they're doing! And I'm sure you really don't want anyone, even a very competent surgeon, to do surgery unless they think it will help. Surgery in itself won't solve the problem if they aren't doing the right surgery, or don't have the skill to fix the problem once they are in there.

Keep up the fight! I have a small idea of how hard that is. It took me months of fighting with workers comp and finally leaving and going out on my own before I found a doctor who could help me. At that point, I wasn't sure I could take another rejection emotionally. But it turned out to be the best thing. I continue to keep you and Heather in my thoughts and hope you will be able (very soon!) to find the doctor who can help you.

Janet
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 02, 2005, 02:31:26 AM
Hi,

I spoke to the doctor from Philadelphia late this afternoon.  At least they phoned me back - they are a very child/parent friendly hospital.  He told me that he thinks we should see another doctor there who is President of the Angular Deformity Society (not that that impressed me).  He said I should tell him not too much about all the doctors but just about the injury and get an unbiased opinion.  This doctor deals also with lengthening legs, etc. he told me but I don't know where that plays a part in Heather's problem.  He also told me not to get upset but they have an inpatient doctor who deals in rheumatism - that is "not" Heather's problem.  So I am really mixed up right now.  But the good thing is they said the first available appt. with this doctor was October 12 and I told them it can't wait that long and lo and behold he is squeezing us in Tuesday 9/6 early in the morning.  Have to leave my house by 5:30 a.m. to get there by 8:30 a.m.   I just don't know if this is going to be another waste of time.  I keep thinking they should scope her knee yet they all don't want to do that except with the exception of that one doctor in NJ.  Funny, but I was looking at some info from Dr. Greslinger (name spelling?) and it said stay away from doctors who want to do immediate surgery.  I even thought of seeing him.  Actually I don't have any inspiration on what to do right now but just to push ahead as fast as I can.  A woman in my office told me a horrible story of a friend of hers who was injured and no xray showed anything re her knee.  Finally after 1 year someone saw a broken bone and they tried stapling it or something but in the end because it went on too long they had to amputate.  That really stressed me out!  God knows I am stressed enough.  So I am going forward and really want to talk them into an arthroscopy.  Can it hurt to do an arthroscopy?  I mean if nothing is wrong inside - at least that would verify it, I would hope.  My brain is sort've overloaded right now.  Thanks for all your advice.  Would appreciate any input you may have on taking her back to the Childrens Hospital of Philadelphia Tuesday.

Well, as usual --- to be continued......................

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 02, 2005, 12:13:44 PM
Hi Lisa. Hi Heather.
Please remind me - what was Heather's original injury, and how old were you at the time, Heather?
KNEEguru
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shadehawk on September 02, 2005, 12:17:50 PM
Lisa,

Wish that there was something that one could say to make you and Heather feel better.

Hopefully, this next appointment will get you closer to a resolution.  Poor Heather, wonder what goes through her mind about all this stuff.  Has to be awful tough for both of you.

Arthroscopic surgery is still surgery, I just had one myself.  It takes time to recover from sometimes, but I agree with you that someone needs to investigate & find out what is wrong with your daughter's knee.  You do however need to find a good surgeon - I agree with what other's have said about getting an experienced surgeon, it does make a great difference.  

Hoping all goes well at this next meeting.

Shade
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 03, 2005, 03:28:29 AM
Hi,

I have been going crazy trying to sort out what to do.  Today at work the thought came to me to phone one of her pediatricians who has seen her since the onset of the injury and seek her professional advice as I am very comfortable talking with her.  She received an eval from the appointment we had on Monday (the horrible experience - if you recall).  The doctor wrote it could be RSD or pediatric pain syndrome on top of perhaps a locked meniscus.  He wrote further  "I am not convinced what the pathology is".  He also wrote that perhaps an examination under anesthesia with the possibility of doing a scoping at that time if the knee doesn't pop back in place is recommended.  He went on further to say that the doctor who saw us last while up there should handle that.  Now as you all know, that doctor didn't even want to view the MRI.  Her pediatrician said she didn't expect a report from that doctor.

Her pediatrician agreed with me 100% that something has to be done.  She said she was happy when she received the eval because she thought finally someone was going to scope her and do something.  I told her the rest of the story and told her that I really would feel better if someone would just go inside and look, what harm could that do?  She agreed.  My feelings were, as stated to her, that at least it would bring peace of mind to me and Heather to rule out there being an actual injury inside.  If there isn't an injury inside then we could go forward with pain syndrome, etc. etc.  Her pediatrician said that it could be a ligament stretch or small tear and agreed that sometimes these things just do not show on MRIs, xrays, etc.  But she did say that scar tissue should show.  Anyhow, her husband is an OS who happens to work with the same group of doctors that sent her to Philadelphia and Danville to begin with.  I asked her if he would do an arthroscopy.  She said she couldn't answer for him, but that he does them almost every day and that he "loves knees".  I told her if I wasn't happy with the visit with Philadelphia, I would phone her husband's office for an appointment but that I needed a quick appointment - she said she would phone them herself if they didn't get us in quickly.  She is also writing me a letter that something has to be done after all this time as her knee is looking much worse.  She is hopefully going to suggest a scope and is writing that the mother (me) has done her homework.  I told her I looked at Heather's knee while she was hardly awake and it was still bent out of shape!  So this seems to be giving me some hope, but you all know that every time we think we are getting some place, we go back to square one.  Just wanted to keep you all posted on this development.  I am glad I went to see this doctor - at least someone is on our side - she knows about "all" the doctors we went to.  She said she can't even imagine someone favoring the position my daughter's leg is in.

Thanks again for all your prayers and support.  Please keep the prayers coming.

Hugs,
Lisa and Heather

P.S. Hope you all have a good Labor Day weekend!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on September 03, 2005, 06:11:13 AM
Hi Lisa and Heather. The two of you are something special to be able to handle all that is thrown at you. I bet it feels like your digging yourself out of quicksand with a teaspoon. I don't know how you keep all that stuff straight! But it sounds like you are making progress. Prayers and Hugs, Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 03, 2005, 06:49:41 AM
Thanks Lisa for the IM. I'm just trying somewhat belatedly to get a handle on what is happening here.

So, correct me if I get this wrong -

Five months ago, in March 2005, when Heather was 13, she had no problem with her knees, until she had someone fall on the right knee.
She heard a loud noise.
1.5 weeks later the right leg rotated inwards and has remained in that position.



Please could I ask a few more questions?

Was she able to bear weight at the time of the injury?
Was there much immediate swelling?
Was there much immediate pain at the time of the injury? If so, was it general, or located in one place?
Was she able to bend and straighten the leg around the time of the injury?

KNEEguru
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 03, 2005, 04:26:12 PM
Hi Knee Guru,

It was actually 6 months ago when Heather first had the incident, and she had no problems with her knees prior to this.  She did not tell me about the injury until 2 days after it occurred.  Initially we had thought it was just a sprain.  There was hardly no swelling.  I asked her about the pain at the time of the injury and all she could say is that it hurt when the boy fell on top of her and she hit the hard gymnasium floor, so of course it hurt.  She couldn't unbend her knee when trying to get up off of the floor at first but then someone helped her up and she was able to unbend it.  So in answer to the question you asked - yes she could bend and straighten the leg at that time and she was able to bear weight - actually she can still bear weight but it hurts so she tends to just toe down on the injured leg and uses crutches to ambulate.  She was walking with a very slight limp and that is when I asked her what was wrong 2 days later.  The pain basically started right after her knee inverted. 

Hope this gives you a little more info.  I know we've gotten a lot of responses and understand why it is hard for you to get a handle on what has been happening because there is so much to scroll through.  Thanks for any input you could offer.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 03, 2005, 06:38:49 PM
OK. Let's build the history up a little further -

Six months ago, in March 2005, when Lisa was 13, she had no problem with her knees, until she had someone fall on the right knee in a gym.
She heard a loud noise. The knee was initially locked in flexion, but became unlocked, with assistance, soon after.
Initilly pain was not a major feature, and swelling was insignificant.
She was able to walk, and there was no need for crutches. She only mentioned the injury after two days, and thought it was a sprain.

Then 1.5 weeks later the right leg rotated inwards and has remained in that position. This was associated with the onset of pain, aggravated by weight-bearing, necessitating the use of crutches ever since.


Was there any discomfort at all in the hip or back at the time of first injury?
When the pain started after the leg turned inward, where was the pain located? Was it diffuse or very easily located? What was its nature?
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 04, 2005, 12:11:54 AM
Hi Knee Guru,

It was March, not May and her name is Heather - I am Lisa, her mother.  Her hip did not hurt her at first but after walking with a limp it started hurting and still bothers her and she said she feels something popping or moving in the hip.  However, she had an MRI done of her hip, a bone scan and nothing is really showing that seems to concern any of the doctors we have been to.  Regarding the pain - Heather can't really explain where it was.  But, basically, when they examine her as of lately the outter corner of her knee really hurts when they press there. 

I am sorry but I can't go into the whole story again.  As you can imagine, I am very stressed over the length of time this has been going on.  When you have a chance, why not scroll through the pages I wrote and that will answer all your questions, hopefully.  I have been repeating this to people I know as well as writing updates on this wonderful site.  It really is too much on me right now to go into the whole scenario.  Hope you understand.  By the way, if you should know of an OS who deals with posterolateral corner of the knee injuries in Pennsylvania, New York or New Jersey, I would be very interested.  Actually I am beginning to think that the reason practically all the OS's did not want to scope her knee was that they probably are not sure how to fix the problem when inside and don't want to open her up and close her and then have someone fix it.  Plus I believe they consider that part of the knee the "dark corner" whereby it is very hard to diagnose or repair unless you are an expert in that area.  Not that this is the problem, but it is a possibility.  Once again, please forgive me for not going into all the detail again.  Hope you can find the time to research my posts.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 04, 2005, 02:02:23 AM
Very sorry Lisa
My mistake - I was being careless. I amended the post. I'm trying to work out in my mind why you have both been shunted around so much, and I could not see in the first few pages of posts why this had been the case.

Instability is the usual problem with posterolateral corner damage, not pain. There must be a problem in association with that, and the initial locking and the focal pain suggests to me a meniscus tear or avulsion.

I think you are right about the reluctance of the surgeons to scope this knee because of her age.

The only cruciate surgeon I know with a special interest in children is a German surgeon (http://www.kneeguru.co.uk/html/names/cvs/ellermann01.html) - not of much use to you, but quite likely he could advise you about who specialises in this field in the USA.

It seems as if this recent knee journal is focusing on the PLC - it might be worth getting a copy from  your library and seeing who the key surgeons are -
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15915836&query_hl=2
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15915835&query_hl=2

KNEEguru


Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 04, 2005, 03:41:57 AM
Hi knee Guru,

No apology necessary!  I want to thank you so much for taking the time to help us try and figure out what is going on with my child.  The websites you sent are very interesting.  I have not had the chance to research all of them, but have been looking at something called "Dial Test".  I printed out some info but don't know if I should show it to the doctor at the Childrens' Hospital of Philadelphia on Tuesday when we go.  You know some of these orthodpedic surgeons are very opinionated and don't like to be second guessed.  Knowing me, I probably will show them what I printed out, whether they like it or not.  Guess I am getting pretty much fed up with being shoved around for so long. 

Think I will probably try and email tht german surgeon you mentioned and see if he knows of an os who specializes in this field.  She is going to a Childrens' Hospital which is rated No. 1 for the past few years, yet they don't seem to have a specialist in this type of field.  That's why they sent us on to someone they thought was an expert in posterolateral injuries, who did not even want to look at the MRI!!  So now all I can do is wait and see what our appointment on Tuesday brings.  I can't show the letter from her pediatrician as every doctor we went to is noted on there and we really need an unbiased opinion.  Guess you can only imagine how stressful this whole thing is. 

Thanks again for all your concern.   Will keep you posted.  Am going to try and see if I can contact that German surgeon you wrote about.  Gee I wish I could speak german LOL.  Hope he can read English.

Please keep in touch!  What a great site you have!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 04, 2005, 09:44:08 AM
The publisher of that journal might let you buy that April copy - http://www.slackinc.com/bone/jks/ - so that you could read those publications in full.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 04, 2005, 06:31:02 PM
Hi Knee Guru,

Thanks for the website re the journal.  Will keep the board updated after our next appointment.

Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 04, 2005, 10:54:37 PM
Hi Lisa
I was taking a look at the literature on isolated popliteus injuries, and thought this article might interest you -

http://www.sportsinjurybulletin.com/archive/popliteus.html

KNEEguru
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 04, 2005, 11:29:12 PM
This is also interesting - http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=8961231&query_hl=2

I am happy to be corrected here. I am wondering about this internal rotation - a PCL injury, I believe, leads to external rotation, while an irritated popliteus tendon would lead to internal rotation. See -

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11914765&query_hl=8

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11914766&query_hl=8
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 05, 2005, 03:33:28 AM
Hi Knee Guru (by the way what's your first name?)

Thank you for doing research for us.  The articles were very interesting!  I printed out one to bring with me to Philadelphia on Tuesday.  Question:  If perhaps this is what is causing the problem - popliteus - how do they fix that.  Is that the posterolateral corner of the knee?  Doctors don't seem to know much about this area or at least I have been told only very few do.  I would hope that doing an arthroscopy would show any injury but then again from what I've read this is very hard to diagnose.  What's your opinion?  We might have one doctor we can go to if Philadelphia doesn't want to scope her, who might do a scope - that's a big "MIGHT".  Like I wrote previously, not only are they afraid because of her age, but more than likely are afraid that they don't know how to fix it.   

Are you in the United Kingdom?  Do they celebrate Labor Day there? 

Keep in touch - appreciate all the researching you are doing.  Hope you have a good week!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 05, 2005, 09:13:11 AM
Hi
My name - Sheila. Sheila Strover.
The popliteus tendon is one component of the several structures making up the postero-lateral corner. The popliteus muscle is a subtle stabilizer of the knee. It can be torn, it can pop its sheath and form an extrusion of lubrication material, forming a ganglion, it can tighten, it can develop tendinitis. The latter two are not uncommon, the former two rarely occur on their own (but can) - usually they are part of more extensive damage to the structures making up that corner of the knee.

See http://www.casebook.kneeguru.co.uk/index.php/knee/issues/12/

The fact that Heather heard a 'noise' when the knee was damaged suggests that something was torn. I am just trying to help you work through the possible options which would lead to the lower leg rotating inwards.

Here is a presentation of a 'Segond Fracture' another cause of posterolateral corner incompetency and pain in that region. The x-rays seems fine until the author points out the subtle features of this fracture - http://brighamrad.harvard.edu/Cases/bwh/hcache/118/full.html. However, it is usually associated with pain from the time of injury, and ACL damage.

Here is a useful radiology presentation about injuries in this region - http://www.ajronline.org/cgi/content/full/180/3/647 (nb - New Haven is not that far from New York).

This is also interesting, inasmuch as it is a 13year old - http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=2010527&dopt=Abstract

What would be really helpful is for Heather to recall exactly the position the leg was in when that person fell on her. (It may be in the 21 pages of notes of this thread, but I have not had time to go through them all).
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 05, 2005, 05:19:58 PM
Hi Sheila,

Thanks for sharing your name with me.  It's a very pretty name! 

I gazed rather quickly at some of the articles you sent as I have to get ready to go to the Mall.  Wish I knew how to read those MRI images.  I asked Heather to try and recall the position she was in when the accident occurred.  She is going to try really hard to remember.  It happened so quick she said that it is hard to remember.  She told me she was going for the ball (sounds like she would've had to bend to get it as it was on the ground).  She just has to remember if she was standing up straight with the ball in her hand when he went to grab it from her or if she was still down. 

Anyhow all of this is very interesting - but it sounds like a really difficult injury to diagnose.  No wonder why they can't get a handle on it!  Plus it looks like a lot of surgery doesn't work and that exploratory surgery other than arthroscopy is needed.  And, once again, given her age, is probably the reason I am having such frustration with these doctors. 

I will let you know after we get back tomorrow from Philadelphia what they say when I show the doctor one of the articles you sent me.  If you can pinpoint a good page for me to print out and bring, let me know. 

Thanks again - hope you have a good day!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 05, 2005, 05:59:50 PM
Hi Sheila,

Ok - Heather just typed what she tried to recall - don't know how exact it is but here is what she's written:

"I was running for the ball and I bent down to get it.  Then when I was bending down to get the ball a boy came running over to try and get the ball first.  He slammed into my left side and knocked me over.  I fell down really hard on the gym floor on my right side, and probably hit the outer corner of my right knee.  I heard a very loud noise from my leg, which was very  painful, and he fell on top of my right leg but basically more on my right knee.  He did not get off of my leg right away and while he was still on top of my leg, I tried to pull out from underneath him but couldn't as he was too heavy.  When he finally got off of me, I went to get up but I could not unbend my leg at first as it was very painful.  A friend came over and helped me and I kept on yanking my leg to get it to straighten out which it finally did.  It hurt but was not inverted at the tiime.  A week and a half later I was at gym again and it was still hurting me from the accident.  I was in a lot of pain and went into the locker room and sat down and pulled up my pants and saw my knee turned in and it felt very spongy and somewhat red."

So that's the story!  My concern is that she has had mri's, bone scans, catscans, xrays, you name it.  Nobody can seem to diagnose or pinpoint the problem.  Now I am wondering if this specialist we are seeing tomorrow just wants to work on re-alignment of the deformity and nobody looks further for an injury, what problems can this cause, leaving an injury inside - if indeed there is one, which we don't know. 

Hope the doctor looks at what she typed.  These OS doctors never really want to look at any journals she wrote or anything, except reports from medical professionals.  But I will try my best to explain the situation.

Thanks again!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 05, 2005, 08:32:32 PM
Hi Lisa
It sounds as if it was definitely a 'varus' injury, but with the knee in some flexion since it was locked in flexion when she stood up.
Thanks

For tomorrow it would be good if you could print the front page of the MRI article from New Haven as your new surgeon may be interested in getting that team to report on the MRI scan.

Sheila
(KNEEguru)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on September 05, 2005, 11:19:10 PM
Hey Heather,
I just wanted to wish you the best of luck for tomorrow. Sorry that I haven't kept in touch lately. With school starting and everything. Im going to try and email ya a little bit later. Well Im here for ya if yall ever need to chat. I hope that this OS is the one for you. I have been keeping you in my prayers. Let me know how it goes.

Hugs and Prayers

Mo
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 05, 2005, 11:32:52 PM
Hi Sheila,

I don't know which one is the front page from New Haven.  I printed out something you sent from University of Minnesota, Minneapolis.  I will search for the one you are referring to.  What is a "varus" injury?  Guess I will try and look now as we have to get to bed early - have to get up at 4 a.m. to get to Philly by 8:30 a.m.  I don't remember ever having to get up this early in my life - a little more stress for me :) 

Thanks so much for all your researching!  I really mean that from the bottom of my heart.  This doctor we are seeing seems to deal with deformities - but I am going to bring up everything and if I am not satisfied, we will just continue forward until someone helps.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 06, 2005, 08:52:04 AM
Hi Lisa
This one - http://www.ajronline.org/cgi/content/full/180/3/647

It is a very authoritative paper from New Haven. The radiologist and surgeons seem to know their subject well.

A 'varus' force forces the knee sideways (from the inner aspect of the knee, forcing it outwards sideways).

Sheila
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on September 06, 2005, 12:28:49 PM
Lisa and Heather,

Best of luck to you guys today!!!!!!!

God Bless You both

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 07, 2005, 04:48:42 AM
Hi,

I'm quite tired as it's after 11 p.m. here and I have been on the go all day as you can imagine.  Had to go to the ER for myself when we got home for an infected scratch on my toe - for which they gave me antibiotics that I decided not to take because I don't think they are good for me - so have to see my doc tomorrow after work.

OK - here's the story.  First the doctor who is the specialist on angular deformities came in and looked at her knee.  He managed to manipulate her leg and her knee went into a normal position with him holding it there.  Please bear with me as I am very tired so I might not get this totally right.  He brought in the first doctor who saw her there 2 weeks ago.  They want to do an EUA (Examination under anesthesia) first and then if her knee does not go back do an MUA (manipulation under anesthesia - think most of you know these terms).  They want to put a catheter in her leg with a pain block and keep her overnight.  From my understanding they will both be in the operating room when doing this procedure.  They feel that an arthroscopy will not benefit her as it won't show the lateral corner of the knee and are not certain at all if that is the problem.  They really think her knee will go back when she goes under.  They "think" that because of the pain her knee went into this position but are not sure.  I told them I observed her while sleeping and it was still in that position - no comment from them.  They obviously don't want to cut her knee open and do a total exploratory.  I feel they were hoping that the doctor we saw last Monday would be able to say if it were a plc injury but obviously he did not even want to view the mri, which I told them.  If her knee goes back they want to program her psychologically so it sounds to me - so her knee does not go into this position again.  Personally me and Heather are wondering if there is an injury, are they just going to let it stay there or will it go back meaning there is no injury??  I am totally lost here.  Anyhow, I couldn't schedule her until October 6 as I had no means of getting back to Philadelphia until my friend gets back from vacation.  She's leaving this Saturday and to do it this week might mean Heather would have to go back for follow up while she was away.   They seem to feel that waiting that length of time will not matter as it has been going on for 6 months already.

I told them I had internet printouts but they weren't interested - Thanks Sheila - I will still bring them with me when I stay overnight with her Oct. 6.  I think they don't want to surgically go inside and look when they are not sure what they are looking for and nothing is definitively showing up on all the tests.  I feel bad for Heather as she is still in pain but she and I are hoping that her leg will look normal again.  We are just wondering about what if there is an injury and they don't address it.  I am thinking if it is a plc injury, would it go back to normal?  Any opinions would be helpful and really appreciated.

I want to thank each and every one of you for all your input.  Please let me know your feelings on this.  They mentioned something about an immobilizer - I think - I'm not too sure.  I was really exhausted from hardly sleeping before leaving this morning.  Think I better get to bed now.  Look forward to hearing from you all and thanks again for being here for us!  Love you all!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 07, 2005, 09:55:40 PM
Hi Lisa
Heather gives such a clear 'history' that I am totally on her side. I understand that doctors dread patients who arrive armed with information, but it is Heather's knee.

I think an EUA is a good step forward.

Do you have the MRI films at home? If so, and the EUA is negative, I would still be inclined to ask that New Haven radiologist for a second opinion on the films with respect to the postero-lateral corner.

Sheila
(KNEEguru)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 08, 2005, 01:19:37 AM
Hi Sheila (Knee Guru):

Heather does give a thorough description of the injury.  The doctor did read it as I typed it and brought it along.  I too think that the EUA and MUA is a step forward.  But I did hear that MUA's are painful - don't know if that is why they are giving her a pain block.  They seem to imply that it's to help take away the pain she feels when they try to manipulate her knee back.  They said when she wakes up from anesthesia, I should remind her that her leg is still there as it will feel like it's not.  Gosh, my poor baby!  Anyhow, how would I get the radiologist in New Haven to look at the MRI - I have the original films plus a CD.  Don't think I can get to New Haven though.  It's in Connecticut I believe.  I'm lucky enough to have this friend of mine take us to Philadelphia which is a 2 and 1/2 hour drive.  Well we have to wait now until October 6. 

Please keep in touch with any new thoughts.  I was looking at what you wrote re "varus" .  It says it rotates outward.  Heather's knee rotates inward (like toward the other knee - like knock-kneed.  Oh well, my brain is on overload.  Hope you have a good night and a better tomorrow.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 08, 2005, 04:23:04 AM
Hi, me again - Can someone please explain to me what they do in an EUA.  They said they were hoping that once she was under her knee would go back.  I don't understand as it stays in the inverted position even when she's asleep at home.  Is there any website that would detail what they do in an EUA and a MUA?  Thanks.  Do you think she'll be in much pain after the pain block wears off?

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: three_screws on September 08, 2005, 09:01:32 AM
Hey Lisa,
Just wanted to let you know that the pain block they give her in hospital will be fine. I had an epidural when I had my hip done and it was the best thing ever. It's a bizarre feeling, it does feel like you don't have legs as they are completely numb, however I did not have one little bit of pain when i was on it so you don't actually feel like you've had anything done :)!
Goodluck to you and Heather with everything!
Pip :)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on September 08, 2005, 09:56:17 AM
Hi Lisa,

     Maybe I can clear up the confusion with "Varus".  A varus knee is one that "protrudes" out (such as someone who is bowlegged) whereas a valgus knee is one that protrudes inwards (towards the midline of the body, such as knock-kneed).  A "Varus force", on the other hand, is a force that is applied to the outside of the knee, possibly resulting in an inward buckling of the knee.  The boy falling on the outside of Heather's knee created a varus force on her knee.  Hope that clears it up.  Trust me, sometimes I get these things backwards as well!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 08, 2005, 10:37:22 AM
See http://www.merckmedicus.com/ppdocs/us/hcp/diseasemodules/osteoarthritis/figures/figure19.html

and

http://www.sportsdoc.umn.edu/Clinical_Folder/Knee_Folder/Knee_Exam/varus%20stress.htm
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swift on September 08, 2005, 11:02:33 AM
Hi Lisa & Heather,

You should check these two websites provided by the Kneeguru, they're both very interesting.  As regards the EUA or MUA, if I were you I would go ahead.  I had a 'block' thing with my elbow injury once, and it helped.  It was not painful at all, except for that 'funny feeling' as you explained, as if my arm was not mine afterwards.
If you go for it, whether it helps or not, you would clear a lot of doubts from your mind and hopefully help your OSs and doctors in their diagnosis.  Anyway, it is not an invasive thing, it is just a manipulation ... they will not 'open' her knee, so it won't do any harm either way.

Good luck!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on September 08, 2005, 01:54:29 PM
Lisa -

You don't have to go see the Dr. in New Haven to ask him to look at Heather's MRI.  Basically, write a brief, clear letter explaining Heather's injury and lack of diagnosis to date.  Explain that you found him by reading his published research, and hope he is willing to help.  You can tell him that you'd like to send (or have enclosed) a copy of Heather's MRI, and will appreciate it if he takes the time to review the film.  Considering you have the MRI film and CD, you can do one of 2 things.   Go back to the MRI center, and ask them to make additional copies of the film.  They will charge you for this, but the amount varies, so I can't tell you how much.  Or make a copy of the CD on your home computer, and send that.  You can also send a copy to the Dr. in NJ if you'd like, since early on ha had a pro-active attitude towards treating Heather.

Many doctors are willing to consult in difficult cases, even from a distance.  The Dr. in New Haven may be able to write a report on his findings, or even discuss them with Heather's current medical team, to provide the best care possible.

Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 08, 2005, 10:54:20 PM
Hi,

Thanks for all of your input on varus stress and the websites.  I really want to know if anyone knows what they think they will do in the EUA?  On the websites they showed the patient fully awake and being tested with various tests.  I am just wondering what they will do when she's asleep re EUA and MUA, if necessary.  I am still wating for the doctor to phone me regarding my questions about if there is a plc injury and they don't actually go inside and look for it, could it still remain there.  I am really confused about this.  Also with the pain block, that does wear off I hope?  Thanks again for all help.  Gotta go make dinner.  Will check online later.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 09, 2005, 04:01:38 AM
Hi,

My apologies Sheila.  I just looked again at the website you sent.  Guess it was silly of me to wonder whether the patient was awake or asleep - the important part was seeing the way they tested the knee.  So I sort've got an idea of what they are going to do.  Guess I am just a little nervous.  Heather is relatively calm about going through this procedure - I'm the one stressing out here.  Mothers!  They better give me some of that giggle juice they are going to give her before putting her under:)

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on September 09, 2005, 10:45:25 AM
Hi
With all the KNEEgeeks she has rooting for her, I'm sure she will be just fine. The surgeons clearly want to assess the knee without being restricted by her pain.
Did you get the little videos to work on that site?
Sheila
(KNEEguru)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 10, 2005, 01:44:24 AM
Hi Sheila,

Yes, I did get the little videos to work.  I just showed them to Heather.  Thanks for all your research.  You are awesome! 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on September 19, 2005, 04:43:03 PM
Lisa,

Had lost your thread.  Just wanted to check on how you both are doing.  I couldn't remember when she was going to OS next.  Keep us posted.  Good Luck!

Cindy

Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 20, 2005, 04:41:03 AM
Hi Cindy,

She's going to Childrens' Hospital of Phila. Oct. 6 for an eval. under anesthesia and possibly a manipulation under anesthesia.  Hopefully they will be able to get her knee to go back into a normal position.  She now has a small bump (looks like on her spine) which I believe is from the darn crutches.  She said she pulled a couple of muscles while on the crutches.  She's so misaligned because of all these months being on crutches.  Anyway, thanks for writing.  Will keep all posted when we get home from the hospital in a few weeks.  Please remember us in your prayers.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on September 20, 2005, 02:10:51 PM
Lisa,

Sorry to hear that Heather is now suffering from back pain also.  I do believe that she is suffering from this because of the knees.  I couldn't use crutches because they hurt my underarms too much (and yes they were checked by a PT and I had them set right and was using them correctly).  I used a walker after surgeries, then a cane and then just limped until I got my ROM on extension to almost 0.  I have had severe back pain since about the 2nd day after I fell.  OS said that when your gate changes so drastically, it will affect your low back and then on up.  I know how bad back pain is.  Try to see if a walker would be better (at least at home) if she is really limping so much.  It helped my back pain.  Also a PT gave me a secret on sleeping with low back pain.  Roll up a towel (it way take a few trys to get it right for her) and wrap it around mid section then pin it with a baby safety pin (so it won't open at night).  This fills in any places that take pressure while sleeping.  It really works.  You know they always say, never lay on your back unless you bend your knees to lessen back strain, well if you can't bend your knees, this really works also.  Or just elevate legs with pillows.  Put a pillow between knees if sleeping on side, etc. 

I hope she gets some relief from this procedure.  Will be watching posts and you are both in my thoughts and prayers!  Good Luck and God Bless!

Cindy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: John1 on September 21, 2005, 12:37:27 AM
Hi Lisa,

In the first message you wrote to start this thread you said:

The therapists sometimes hold her leg and work the knee and then say "look it is aligned now" but as soon as they stop holding it the knee looks off track.

So it seems like we already know the answer to whether the knee will go back or not. It would be good to pin down the doctors to what they are trying to figure out by the procedure on October 6. It will be a shame if they can move the knee back into position and it just goes back out, then they say they still don't know what the problem is. On the other hand, they will be able to perform all the different types of tests to check for ligament injuries without causing any pain, so hopefully they can say exactly what is wrong.

Good luck,
John
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 21, 2005, 04:20:18 AM
Hi John,

I totally agree with your comment.  Heather has said the same thing regarding her knee just going back into the off-track looking position.  These doctors in Phila. seem to think that as soon as she goes under that her knee will automatically go back into place.  I, too, find that very hard to believe as I look at her knee when she is asleep and it is still turned inward.  Personally, I feel they don't want to go inside and look because nothing is clearly showing up on mri's, etc.  Also, as the doctor who is supposed to be an expert in post lateral corner injuries didn't give them a definitive "yes" that it was that, they are skeptical about suspecting that.  Got the report from that so-called expert doctor of plc injuries who seemed to feel that radiologists reports were good enough to go by.  Well, I do hope, like you said, that they can test for injuries when they do an evaluation under anesthesia. I wonder what they do when they do a manipulation under anesthesia?  Would that get her leg back to normal?  Then this mind-training stuff had me baffled.  Probably won't be able to really discuss all this with the doctors till the day of the procedure, which is approaching fast now.  Will keep you posted.

Thanks for writing.  Hope things are ok with you.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 21, 2005, 04:27:11 AM
Hi Cindy,

Heather has been complaining of back pains for over a few years now. She was checked, xrayed and saw a specialist (actually the specialist was one of the doctors who I argued with about her knee a month ago).  He tested her for scoliosis, which she didn't have, thank God and said she just needed to exercise more.  He attributed the pain to heavy bookbags which since then I have gotten the school to allow her an extra set of books at home. 

Thanks for all your suggestions - actually, she sleeps pretty well at night.  It's not her lower back - it's different places at different times.  I might have her checked before Oct. 6 but probably will just make them aware of it before they do the procedure on that day.

Hope you have a good week.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on September 30, 2005, 04:02:00 AM
Hi,

Just wanted to ask to be remembered in prayer next Thursday, October 6th.  I am sort've stressing and a million things are going through my mind - like is the pain block like a spinal, etc.  Guess I will find out the day of the procedure.  Also, she has lost about 8 pounds since the injury - had her to her regular doctor yesterday just to check her out before bringing her to Philadelphia Thursday and she said everything was fine.  She told me that the Childrens' Hospital of Philadelphia was excellent and rated No. 1 in the country for children.  She also told me that the Dupont Institute in Delaware was excellent in pediatric orthopedics but felt as I did that we should follow through with Philadelphia first as this has been going on for so long now.  Would any of you know if being on crutches for so long would make you lose weight because you are using more energy?  Just wondering.  Heather has a very small frame - is about 5'3" and weighed 93 lbs. before the accident and now is 85 lbs.  She looks alright - but I am concerned being the type of mother that I am.  Worry, worry, worry. 

Well, just wanted to unwind so I hope you don't mind my writing.  Will probably not write till after October 7th, the day we are supposed to come home.  Thank you all for your support and prayers!

(((((KNEE GEEKS)))))

Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on September 30, 2005, 02:50:39 PM
Lisa,

Lisa,

You probably have already read about this but the other day I went to the free course on this site about "Pain around the kneecap".  I saw a picture in one of the lessons that looks like Heathers.  You might check it out.  Maybe that's what's wrong with hers.  It's in Lesson III about "Miserable Malalignment".  Hope you find something soon.  Will have you both in my prayers for the 6th.  Good Luck and God Bless!

Cindy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on October 01, 2005, 04:51:04 AM
Hi Lisa,

     Haven't been on this site in about a week; must have sensed that you posted today! :)  Heather's weight loss can be attributed to a number of things.  We have muscle fibers in our body that are responsible for posture and stabilization; some of these are located in the so-called 'anti-gravity muscles.'  When she decreased her activity and started using crutches, the muscles started atrophying, or shrinking, due to disuse, particularly in her legs, hips and back area (much the same happens to astronauts on extended trips in a weightless environment).  These muscles will have to be exercised and retrained to operate properly once her problem is resolved.  A second cause of weight loss connected to the inactivity is that, normally, very active muscle fibers have a high storage of carbohydrates in them, known as glycogen.  The glycogen also binds water.  When Heather became inactive, she started losing these glycogen stores together with the water bound to it.  A third cause of weight loss, once again, has to do with activity vs. disuse, and that is her bones, which react to gravity and other stresses by increasing in size and density, have decreased, again, much like what happens in space flight.  The end result, in severe cases, is osteoporosis; she is young, so this shouldn't be an issue, but she may have a lower stage known as osteopenia.  If this is a concern you could always have a bone scan done once she gets her diagnosis.  All these are reversible with increased activity.  There could be some other issues, but these are definitely included.  Hope this answers some of your questions.  Good luck, and I'm waiting anxiously for that final diagnosis, although I'm sure no more so than Heather!  Good luck again. ;)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on October 01, 2005, 09:55:33 AM
October today! Thinking of you both.
KNEEguru
Title: Re: opinion needed re 13 year old daughter's knee
Post by: purplestars1881 on October 01, 2005, 12:04:32 PM
Just wanted to wish Heather best of luck with her surgery! Lisa, I hope that you are able to get through the day okay. Bring something with you to keep you busy while you are at the hospital during the surgery!
Heather W.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 02, 2005, 01:30:40 AM
Hi Cindy,

I did try and go into the site you mentioned and even registered with a password, etc. but couldn't access it for some reason.  Probably something to do with how I have my "cookies" set on the computer.  I don't like messing around with my settings - a friend of mine helps me from time to time set up some things.  But, thanks anyhow.  Well, now just waiting until Thursday.  Will keep you posted!  Thanks again.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 02, 2005, 01:39:40 AM
Hi Trekker,

Good to hear from you!  Thank you so much for explaining this weight loss problem to me.  Heather was very happy to read your post too!  I had her back at the doctor yesteday - Friday - as I phoned them and asked what they thought the weight loss could be due to.  Obviously, they didn't take note at the 8-10 pounds she lost and when they looked at her chart and asked us to come in.  Anyway, she feels also that she lost muscle fat in her leg and also was concerned with stress.  She wants her to due some bloodwork on Monday - CBC and a whole bunch of other tests, one for thyroid and electrolite(?) I think.  Just wants to be on the safe side before she undergoes anesthesia Thursday.  Won't be able to speak to her about the results until Wednesday.  I think Heather will be alright though.  Poor kid has been going through so much and the kids in school have been not treating her too nicely lately because of her injury.  Words can hurt a lot.  I am just praying that they get her leg back to a normal looking position and that the therapy won't be too painful for her.  Wish I had a laptop to bring with me to the hospital:)  Will write some time next weekend after we come home.

Thanks again!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 02, 2005, 01:44:47 AM
Hi Sheila (KNEE GURU):

Yes it is October.  October 1st is the feast day of St. Therese of Lieuseux - the saint Heather has chosen for her confirmation name.  Have to pray to her! 

Thanks for thinking of us and for all your concern and input into our situation.  I can't wait until Thursday has come and gone.  I can only hope and pray that they get her knee and leg looking normal again.  Well, that's it for now - hope you have a good Sunday.  Speak to you soon.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 02, 2005, 01:48:56 AM
Hi Heather W (purple):

I love the color purple:)  Thanks for your good wishes for Thursday.  Don't think I will be able to sit and read a book.  Probably will look to run outside for a cigarette LOL - and sit there praying the entire time.  Actually it's not surgery - but a procedure they are doing under anesthesia.  But, who knows, maybe they will decide on something surgical - we just have to wait and see.  Thanks for the good wishes!  Hope all is well with you.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on October 02, 2005, 02:12:55 AM
Hi Heather and Lisa:

I hope that this all goes well for you on Thursday. You are both in my prayers. I hope that they find what's causing all your problems Heather. Well just wanted to wish you both the best of luck.

HUGS!!

Mo
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on October 02, 2005, 02:24:56 AM
Lisa,

I just logged in as a guest.  Not the one with a password needed but the one right below it.  It just says login as guest, and has a click button.  Then go to Lesson III and hit continue on the bottom of the screen until you get to pic of "Q-Angle" problems.  Hope it works.  I have problems getting some things with cookies also.  But I don't think this is one.  Just the one with password.  Good Luck! 

Cindy

Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 02, 2005, 05:06:34 AM
Cindy,

Well it worked for you but not for me.  But thanks anyway.

Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on October 02, 2005, 10:00:55 AM
Lisa,

Sorry you couldn't see it.  Found some other sites with pics like one on free course.


http://www.oandp.org/jpo/library/2000_04_110.asp   (under "Discussion" click on figure 4)

http://www.physsportsmed.com/issues/1996/07_96/arendt.htm  (scroll down to pic)

http://veggie.org/run/chondromalacia/     (scroll down to pics)

Good Luck on Thursday!

Cindy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on October 02, 2005, 11:12:28 AM
Hi
I think cholt is referring to this text on Dr Grelsamer's course (but remember that it is a condition one is born with - it is not injury related)-

"‘Miserable malalignment’ is the colloquial name given to ‘complex torsional variations’ (abnormal femoral and/or tibial rotation) in limb alignment from the hip down to the ankle.

When the patient is examined standing the knee cap can point inwards (“squinting”) or outwards (“grasshopper patella”). The hip joint is usually excessively turned out, the end of the thigh bone can twist inwards or outwards, the upper tibia is commonly twisted outwards, the tibia displays a bow-legged appearance, and finally even the ankle can be twisted outwards. And when all is said and done, one twist compensates for another from the hip all the way down to the foot until the foot points forward!

Such anatomy can be associated with pain at the front of the knee . Clearly, the knee cap is an innocent bystander in this complex malalignment. Imaging will often reveal a normally-positioned knee cap overlying a rotated femur. Fortunately, pain can often be controlled with activity modification, stretching and strengthening exercises. For the patient requiring surgery, so-called small procedures such as a lateral retinacular release are not usually successful. On the other hand, the untwisting bone cutting procedures (osteotomy) are substantial, and there are no long-term reports of their results. "


[attachment deleted by admin]
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 03, 2005, 05:31:14 AM
Hi,

Thanks Cindy and thanks KNEE GURU - gosh the picture you sent Sheila looks like Heather's knee a lot.  But, as you said, that doesn't come from an injury.  Oh well, just will have to wait till Thursday to see what the outcome is. 

Well, have to get to sleep as it's late here - on a lighter note or perhaps darker note (girl talk) - had the highlights taken out of my hair today and tried to go dark brown - well now I have black hair YIKES - my son said I look gothic LOL.  Oh well this should be my biggest problem.

Thanks again for all your good wishes - will keep the board posted - so much going on all at once in my life now - have a prospect at a much less stressful job but just pray the interview can take place before Thursday/Friday.  Could use a prayer for this too - telemarketing has me going nuts. 

Speak to you all over the weekend hopefully.

Hugs and thank you's to all!
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on October 06, 2005, 02:35:07 PM
Heather and Lisa, you are in my thoughts and prayers today.  I sincerely hope Heather's problem can be properly diagnosed.  I fell on my bad knee during Hurricane Rita, and now have problems straightening my leg.  Went to the OS, he said it's a bad bruise.  So, I'm back to therapy exercises to stretch the ligaments.  The OS also told me the arthritis is accelerating (great).  My best friend is yelling at me because I won't use a cane.  I told her that using a cane right now lets the arthritis win.  I'm not ready yet.

I'm glad that Heather is getting help, (however frustrating) early, so her knee problem can at least be corrected before significant damage is done.  Lisa, you have the patience of Job, and the resolve of a mother lion.    You are in my prayers that this time, they can help your girl.

Love always,
Sandy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on October 07, 2005, 05:25:12 AM
Lisa and Heather,

Just thinking of you both.  How did it go?  Hope all is well. 

Cindy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on October 08, 2005, 05:08:23 PM
Lisa and Heather,

I hope everything went well!!

Hugs and Prayers for you both!!

Morgan
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 08, 2005, 06:52:00 PM
Hi,

First I want to thank all of you for your many thoughts and prayers!  Will write more later as we got home at about midnite and were up till after 2 a.m. watching a DVD about what is wrong with Heather.  She underwent the EUA and I think they did a small amount of MUA.  Was casted and on pain catheter and heart monitor until we were discharged.  Originally saw the OS after the procedure where he showed me digital photos they took during the EUA and her both legs were bending perfectly and aligned.  He said they would be putting her on an immobilizer.  They also said it was tibial torsion/femoral aversion - this all changed in the end!  As we never got to see the OS once she was placed in a room - we saw several people that he sent up.  Bottom line -- before she was discharged a pain specialist and a rheumatologist came in and removed the cast.  Her knee was in almost the exact position it was before the procedure!  She was in "agony" as they tried to straighten out her leg which was bent up.  They recasted it.  While we were waiting for our ride home in the room and packing the rheumatologist came back and asked her some questions like why she couldn't straighten her leg, etc.  He examined her pretty thoroughly and was very sure she had RND - Amplified Musculoskeletal Pain or Reflex Neurovascular Dystrophy (nothing to do with Jerry's kids).  They had recasted her before he came back a second time and she undid the cast (she asked to - as it was wasn't on right).  When she did, he got her to unbend her leg and took her by the hands and started helping her walk down the hall.  It was amazing - she was very weak and fell a lot but he caught her.  In simple terms RND is a medical problem involving the nerves going into the blood vessels.  These nerves are overactive and cause the pain.  The treatment is a special series of exercises to retrain the nerves.  They have a progam at CHOP (childrens Hosp. of Philadelphia where we were).  She has to see this doctor in a few weeks and be accessed to possibly go into this program.  He gave us a video to watch and it showed other children with very similar symptoms - one of the child's stories was so much like Heather's except don't think she sustained an injury.  It can come from an injury or stress.  This child after a few weeks was running, jumping, walking and active like a normal child - it was so amazing to watch.  The doctor feels Heather will get better very quickly as she is so determined and was very impressed with her struggling to walk down the hall with him.  GREAT NEWS!  Finally a reason and a cure!  Will write more later. 

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on October 08, 2005, 07:12:59 PM
Lisa,

Gald things went ok.  So glad they think they know what it is and how to fix it!  What a relief to both of you.  Way to go for sticking in there with your daughter.  I have seen some parents turn away from their kids when they were serious ill, because they listened to only the Doctor and not their child.  Actually, I was the one to diagnosis one of my friends children when no one else would believe her.  The Doctor had sent her home multibple times, just saying she just doesn't want to go to school.  I did research on the internet and I told her Mother to go the hospital and demand a test to show if she had this very rare illness, (that required 3 weeks of hospitalization and 3 weeks in home care) and she did have it!  They just don't know everything and I applaude you for sticking with it. 

Tell Heather, I hope she gets better real soon.  From what I read on the internet about RND, it shoudln't take long to get over.  Good Luck!

CIndy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on October 08, 2005, 11:08:24 PM
Hi
Well, we are all learning here. I read this article - http://www.childhoodrnd.org/media/AMP_RNDparentHandout.pdf which I see is from the same hospital.

I do hope that the treatment is effective and that life starts again for you both after this worrying time.

Sheila
(KNEEguru)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 09, 2005, 06:41:11 AM
Hi Sheila (KNEE GURU):

Thank you for forwarding that article.  It is the very one that Dr. Sherry gave us at the hospital.  He is the rheumatologist that Heather saw and is the one we will be going to in a few weeks for an office visit.   From what I just read in an article sent to me by Trekker, Dr. Sherry is the doctor who started this program.  So we are very blessed that he walked into her hospital room just before we were about to go home.  I truly believe that all the prayers were heard and that finally God answered.   It's going to be hard to have her away from me for some weeks in the program but I can see her on weekends he said, but she has to earn the visits by working hard.  Some children can do the exercises at home but from the video he loaned us I really think she would do better with the in-hospital program.  I am still exhausted from the trip and emotional fatigue - especially when the cast first came off and her leg looked exactly the same as it did before the procedure.  I still don't understand how her knee inverted like this but I guess nerves and muscles can do strange things when not working properly.

Hope you and all on the board have a blessed Sunday.  Once again, sorry that I didn't write individually to each of you but I have been on an emotional roller coaster, so to say.  You know, maybe this can be the answer for others as young as Heather on this board with undiagnosed conditions.  I truly feel we were led down this road - at times I wanted to go back to the doctor in N.J. but just didn't - there is a reason for everything.  The doctor from HSS in NY was probably on the right track when wanting to send her to a pain clinic but the bottom line is that we now are being seen by this Doctor who discovered this treatment.  I wish you could see the video, it is so touching and so encouraging to see children going from being so disabled to healthy children again.

Speak to you all soon!  Thank you again from the bottom of my heart for all the prayers and support.  We still need them as we still have a ways to go.  I truly hope and pray we have found the answer!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on October 09, 2005, 11:54:47 AM
Hi
It would be good if you could buy/borrow a digital camera and document her progress. I would be happy to publish this story with excerpts from your posts in the Clinical Casebook http://www.casebook.kneeguru.co.uk/ so that this condition is better recognised by doctors. You just need to ensure that permission is given by anyone snapped in the photo, or otherwise we can edit the photos afterwards so that people are not recognisable.

Certainly I never knew this condition - RSD yes - but not this special paediatric variant. Your persistence has been a lesson to us all, and especially me.

KNEEguru
Title: Re: opinion needed re 13 year old daughter's knee
Post by: blackbeltgirl on October 09, 2005, 02:41:13 PM
Lisa -

A coworker has a daughter diagnosed with the same disease.  For what it's worth, the prograqm at Johns Hopkins, in Baltimore MD is one of the best in the country for this disorder.  His daughter has had both good times and bad times, and she did spent nearly an entire summer in the hospital for inpatient PT, but she has managed to put the disease into remission.

Good luck to both of you-
Jess
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 10, 2005, 03:22:42 AM
Hi Sheila (KNEE GURU):

I have a digital camcorder but if she does go into this program, I will not be allowed to be there, except on weekends if she works hard enought and earns it so the doctor said, plus I have to work and take care of her brother.  I can ask the doctor if he could document her progress and explain to him that we have been on an internet site that would like to document her progress and share it with people on the site including doctors.  I certainly think this is a good idea as there are so many kids out there who might have this condition and go undiagnosed.  I will keep you posted after we see this doctor in a few weeks.  Once again, thank you so much for all your support.  This board has been like family to us!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: bludawg on October 10, 2005, 04:29:22 AM
Take it from someone who was 15 many years ago and shattered her knee running track.  PT can be painful, however, your daughter will know when the knee is not "in place".  I would strongly suggest that you follow my mom's lead years ago and go to a different OS and have them check it out.  We went to one that was at a different hospital.  One more surgery, a great PT team and except for a torn ACL 15 years later, I was able to get thru PT and make it to the state finals in track.
Spunky
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on October 10, 2005, 09:47:01 AM
Hi,

     I think you need to go back, read all the posts, and count how many doctors they have been to!  Trust me, it's a lot more than one!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on October 10, 2005, 12:25:28 PM
Lisa, thank God.  At last a diagnosis, and a method of treatment.  After all of those Doctors who dismissed you because THEY didn't know what was wrong with her, you now have a starting point.   Even though the therapy will be tough, Heather is a tough kid, and I know she'll work her buns off to be able to walk again.  Take a breath, and start the second "leg" of your journey.  God bless.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on October 10, 2005, 04:10:16 PM
LIsa and Heather,

I am so happy for you guys!!!!!!  :D

Hope all goes well with the treatment

God Bless You Both

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on October 11, 2005, 04:43:54 AM
Lisa and Heather, This is great news to finally see a course of action and no surgery !!

 I forgot however to ask in my PM to you, but thought others would also like to know is :When Heather is away from you at the hospital, will she have access to the knee geek site so we can send her words of encouragement ?

HUGS, Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 12, 2005, 05:12:11 AM
Hi (my online knee-geek family!)

You guys are like family to me right now!  Thank you for all your replies.  I have lots of questions to ask this Dr. when we get the appointment to set up the therapy.  Will keep you posted after the visit which will probably not be until the end of October.  I still question if this is the right diagnosis.  Can't understand how her knee inverted like it did and that she doesn't have the severe pain that this RND is supposed to have.  But if this is, indeed, what is wrong with her, I will be extremely overjoyed to see her healed! 

Regarding her having access to the internet to keep in touch with the knee geeks, I will ask the Doctor.  Personally, I don't think they will allow it, but, then again, I don't know.  They don't even seem to want me to see her unless she works hard at the therapy and earns my visits.  That sort've bothers me as I imagine it would bother any parent. 

We just got back a few hours ago from church - she made her confirmation.  It was a beautiful ceremony but I started to cry when she walked up to be confirmed by the Bishop.  All the other children were able to kneel before him, but Heather was standing there on her crutches.  She was the last one to be confirmed - but they say "the last will be first".  Sorry, just wanted to share this with you - it hurts so bad to see her on these crutches for so long. 

Well, it's after midnight and I have to get some sleep for my wonderful job tomorrow (telemarketing is a real bummer!).  Stress upon stress you can say - but it pays the bills for now.  And to think I was a legal secretary when I was in New York.  Up here telemarketers make more than the legal secretaries!

Speak to you later!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sartracker on October 12, 2005, 08:05:14 AM
I have read your trials with finding the diagnosis for your daughter and I'm so sorry you both had to go through this.  It is very hard to see your child hurting and not be able to help.
As to the therapy and not seeing her, I wanted to tell you a story.  A friend's son had severe asthma when he was young (8).  To learn to control it he had to go to a special hospital, by himself, for several weeks.  It was very hard for her to let him go, but he had to learn to take care of himself.  It worked out great (and he thought the weeks he spent there were like a camp, hard work, but fun)!  He was able to do much more than before and his asthma was under control.  Now he is a 23 yo man and pretty much free of asthma attacks.  She hated not seeing him but the end result was a blessing.
I'm wondering if the pain has been so constant that it doesn't bother her as much as it would someone else.  Hence the lack of "severe pain".  In any case, I'm sure that there are safeguards in place such as if she isn't improving or gets worse she can end the program and come home.  Or maybe by seeing her daily they'll find other possible problems and solutions. This RND sure sounds like a likely candidate for the problems she's having and the program is worth a try.
My prayers are with you and your daughter. As difficult as it will be for you and her to be apart, trust God.  He'll take care of you both.
Jesus healed the lame man.  He told him to arise and walk and he did!  God will heal your daughter, perhaps through this gentle Doctor.  And she'll be able to throw those crutches away and walk and play. When that happens, you should have a crutch burning party.  ;D
P.S - What is her confirmation name? 
God bless!  Kitty   :D
Title: Re: opinion needed re 13 year old daughter's knee
Post by: swikle on October 12, 2005, 12:56:09 PM
Lisa:  God Bless you and your daughter.  Sometimes the road is rough and we don't know why.  God never gives us more than we can bear, and most times we come out stronger on the other side of a trial.  Heather is a very brave girl.  She stuck to her guns and didn't allow the Doctors to intimidate her.  She comes by her strength honestly, since her mother is strong.  Sometimes we learn to work around the pain, especially if it's chronic.  We learn to bear it and go on.  Just keep on, one day at a time, sometimes one minute at a time, never looking back, keeping your eye on the ultimate goal.

Love always,
Sandy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Janet on October 13, 2005, 12:53:56 AM
Lisa and Heather:

I am so glad you finally got an answer. See, all that persistance and stress paid off in the end! You deserve a lot of praise for not giving up.

I agree with Kitty that she may just be "used to" her pain, so it doesn't seem so severe. Also, the fact that she has been on crutches for so long shows she really does have severe pain, she just relieves it by using the crutches.

Good luck to you all. I know this has affected your whole family, and you just want life to be back to normal. At least now it's moving in that direction.

Janet
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 13, 2005, 04:45:49 AM
Hi,

Thank you so much for your input on Heather's pain.  It made me stop and think....I was so caught up in the moment, so to say, that I didn't stop and think of the pulling pain she has had and often complained of plus some nights where she actually didn't argue about taking the naproxin for pain relief, which didn't seem to work.  But, now I know, after reading the literature, that pain meds don't work for this condition.   I think you are right that she has learned to deal with this pain - sort've like becoming second nature to her after all these months.

I finally got in touch with Dr. Sherry's office today and the earliest he could squeeze her in was November 28.  I told his secretary how unsettling it made me feel about not seeing her (wish I would've read your posts first).  I also told her that she did not seem to have the awful pain they say this RND brings but now, in retrospect, she probably did and does but to a lesser degree than described in the papers he gave me.  Each child it seems has a different reaction.  I asked her what we could do in the interim and she said they could work with a pt in our area regarding what therapy to start her with until she gets into the program.  I phoned the pt practice we went to and they were unfamiliar with RND, as was the nurse at the OS office in our area who referred her to Phila.  I hope to speak with the OS where I live to see if he knows anyone who can work with her until Nov. 28.  Dr. Sherry's office is mailing me papers for Heather and me to fill out and return.  They also have to see if our insurance will pay for this in-hospital program and will work with us.  She told me that they only have 2 to 3 children at a time in the program and that an individual therapy plan is made for each child.  Some children get better in 1 to 2 weeks while others take a month or longer.  I really think the Knee Guru's idea about getting the word out about RND is an excellent one as there are so many doctors that don't recognize this illness.  I definitely am going to ask about recording her progress so we can share it with others.

Thank you all, from the bottom of my heart, for all your input and insight. 

And, Kitty, her confirmation name was Saint Therese.

Speak to you all soon!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: purplestars1881 on October 13, 2005, 12:08:41 PM
I am so glad that you both finally have answers! Best of luck to you and Heather!

Heather W.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 15, 2005, 12:53:48 AM
Hi,

Just wanted to let you all know that we found a pt who will work with Philadelphia until she gets into the program.  I still have to get in touch again with Philadelphia to discuss this latest development.  I left them a voice mail today and said that I re-thought my hesitation with not seeing her and that I am anxious to have her get into the program as soon as possible, and also left a message regarding the pt who is willing to work along with them.   Plus, I phoned my insurance company and it seems that they cover the program that Dr. Sherry has.  Will keep you posted as things progress.

Hugs,
Lisa

Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on October 15, 2005, 05:08:24 AM
Lisa,
I hope this all means you can relax some now. Looks like everything is good to go. Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 28, 2005, 05:09:24 AM
Hi,

Just thought I'd say hello to all!  I haven't posted as we are still on "hold" awaiting the Nov. 28 appointment.  The doctor's office just got back to me, after I left several phone messages for almost 2 weeks!  I asked if they could get Heather in sooner and was told that if there's a cancellation they will call.  I mentioned the pt that was willing to work with us and asked for Dr. Sherry to phone so I could ask him some questions.  Still awaiting that call - It is so hard to get in touch with them!  I can't really start any pt without knowing exactly what they want done and I am beginning to think that she will first have to be re-evaluated at the Nov. 28 appointment.  It's just so hard to wait so long, plus not knowing when she will be able to get into the program.  I also had a few questions regarding the DVD which was loaned to us.  I watched it again and these children have pain with the slightest touch (like RSD).  Heather, on the other hand, doesn't have that sort've pain.  So I have some questions that I feel this doctor can only answer.  Guess waiting is going to be hard - that's why they say patience is a virtue - one I'm struggling with now:) 

Hope you are all doing well and staying educated on this great site. 

Hugs,
Lisa

Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on October 28, 2005, 04:37:12 PM
Lisa,

just know we are all still here and thinking of you guys!!!!!! Let us know how the appointment goes

God Bless
Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 29, 2005, 05:27:03 AM
Hi,

Well the doctor finally phoned tonight!  He told me that someone cancelled for this coming Monday and that he had to check with his insurance person if we could get her into the program.  He asked if I could stay in Philadelphia for 3 weeks and she would undergo 5 hours of pt each day.  I explained to him this was rather short notice, this being Friday and I am a single working mom with a 15 year old boy at home.  Plus, I need to give notice to my job - but then he said he spoke without thinking about setting up the proper procedure for the insurance coverage.  He said probably getting her in-hospital (which he told  me originally in the hospital) would work better for me.  But, he did not even know if they had a bed available.  He is going to get back to me or have his office get back to me the beginning of next week.  It seems to me that he feels she will get better in 3 weeks and that is really good!  The only problem is that my job is a very shaky one and they could let me go in which case the insurance will end at the end of the month.  They have been letting people go left and right at my job (telemarketing is a numbers game), and it's a day to day thing.  Anyhow, as much as I would love to be able to stay down in Philly I have to think out my options.  If they get her into the in-hospital program, I could get someone to drive me there on weekends.  Guess I will have to wait and pray and see what they say when they phone next week.  He told me to have Heather try some more intense exercise like deep knee bends and she said she can't do that as her leg wouldn't go that far.  He was on the phone when I asked her and he didn't say anything when she said she couldn't do that.  I mentioned the therapist down where I lived that was willing to work with her but in the same breath told him that perhaps he needed to see her first - to which he didn't give a response, but said he would email his insurance coordinator and get back to me at work during the week.  He is going to be away some time during November so that is why the initial appointment is for the end of the month.  How I wish I could get her into the program Monday but there are too many ifs and insurance questions, etc.  So, back on hold again for now.  I want so much for her to start this therapy as soon as possible but need to be careful not to lose my health insurance for then she wouldn't be able to complete this program and the follow up visits which I think in total is a period of 6 months (from the dvd I viewed) till she is discharged from his care.

So, once again, I ask for your prayers.  At least I finally got to speak to the doctor.  He said he wants to start her on music therapy (that sounded interesting).  Well, I'll let you know the next step.  There are so many things to take into consideration for me, but my number one priority is seeing Heather all better.

Thanks for listening.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on October 29, 2005, 06:48:27 AM
Lisa, over here in California we have an option on insurance if we lose our job known as COBRA; you can pay into it for a number of months and you will be covered i.e. your coverage will continue.  Don't know if that's a nationwide thing or not, or whether it covers the kids.  Look into seeing if you have something similar.  Good luck!
Title: Re: opinion needed re 13 year old daughter's knee
Post by: jillo on October 29, 2005, 08:11:05 AM
Yep, it's nationwide and if your employer won't offer it you can often find a state program that will.  It's not cheap though, sorry.  Best bet is to call the State Department of Labour and ask to speak to an insurance/ COBRA specialist.  IME they are super helpful and know more than anyone about the ins and outs of this stuff.  Personally, I always call back and talk to another rep and ask the same questions just to make sure but I'm paranoid about insurance now.

Good luck!  I'm going through insurance woes right now and it's very frustrating.  I looked into the new "Flexible Spending Plan" program that allows you to put pre tax income into an account for medical care today.  It has a limit of $2K for the entire year so it's not great, but still saves you $500 or $600 if I did the math right.  It might not be worth it for you as you have more deductibles than me but it wouldn't hurt to ask.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on October 31, 2005, 03:18:18 AM
Hi,

We have COBRA here.  It was offered to me when I left my last job 2 years ago, but the price was very costly - I think over $700 a month.  Unfortunately, I can't afford that.  I did some research in my employee handbook and saw that they there is family leave of absence (FMLA).  I did some research on that and they can't fire you and have to reinstate you back on the job plus keep your medical benefits intact - though I would have to pay the co-payment I pay now.  So, that's good but it's the fact that it would be an unpaid leave that is going to be very difficult.  Guess I will just wait for the doctor's phone call this week and see what is said - if need be, I probably will phone my sister (we're not very close at all) and ask her to loan me some money (it's a big IF she will do it.)  Once again, I have to rely on my faith.  Also, have to phone the school tomorrow to see how missing 3 or so weeks of school will effect the kids.  Everything is sort've up in the air for now, so to say.  Can't really plan anything until I hear what the doctor's office says.

Thanks for all your advice re the insurance.  I'm not going to say anything to my job until I know if it's day therapy or they can get her in-hospital.  If they do get her in-hospital I will go there every weekend - from Friday to Sunday and stay at the Ronald McDonald House (it is very inexpensive and they have a shuttle which takes you to the hospital several times during the day).  Did a lot of homework this weekend.  Trying to get all my cards in order.  Was really down yesterday after the initial shock of the doctor assuming I could just pick up and go in a few days.  But, I am working my way out of feeling down.  Guess all these months of trying to help my kid has taken a toll and then when finally something looks really positive - money gets in the way, and you feel so helpless.  I just have to keep thinking positive.  Well that's it for now.  Will keep  you posted, as usual, as to what the next step is.

Hugs to all of you!
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: morgan515046 on October 31, 2005, 01:14:12 PM
Lisa,

Glad you got some of the insurance stuff figured out  :) Keep up all your hard work you're doing a wonderful job!! Best of luck to heather whenever she starts this!! and to you to.

Morgan
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on November 21, 2005, 12:14:12 AM
Hi,

Just wanted to wish you and your families a very HAPPY AND HEALTHY THANKSGIVING!  Hope you are all doing well!

Finally, November 28th is almost here and we will go to Philadelphia to see the Doctor who runs the RND program.  Hopefully we will come home with a date!!   Will keep you all posted, of course.

Hugs and more Hugs,

Lisa and Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on November 21, 2005, 03:54:54 AM
Hi Lisa and Heather, boy this sure has seemed like a long time coming . And it must been twice as much longer for you! I hope this week goes by fast and you can get on with life again. Sure missed hearing from you ! Blessings to you and your kids! Lets hope you have much to be thankful for soon ! Hugs, Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on November 29, 2005, 03:29:58 AM
Hi,

Well we saw Dr. Sherry today in Philadelphia.  He said he thinks the best thing is for Heather to be in-hospital and that I can see her on weekends.  He thinks that given I have a 15 year old son that we should keep things as normal as possible and I should go to work and not disrupt the way our lives are.  I told him I was concerned about her weight loss - she weighed 80 lbs. today and 8 months ago she was 93 lbs.  I think he feels that they can work nutritionally with her in-hospital.  He also seems to think that it is better psychologically for her not to see me and concentrate on the program.  When I asked how long she will be there, he said about 4 weeks and that he is hoping to get her in some time during this week.  Her pain level was not very high at all today.  Actually she does not have pain but discomfort with her muscles pulling in her calves.  When I asked him if there actually is an injury that did not show up on the MRIs etc. and could this intense therapy program hurt her, he replied that it would not injure her any further.  His goal is to get her knee back in the right position and he thinks that she somehow has done this??  Well, it's worth a shot - I am not comfortable with not seeing her during the week but I can phone her in the evenings.  My son, on the other hand, is really happy that he doesn't have to stay in Philadelphia for weeks.  I did explain to him about my job situation but he feels I should go to work as normal and obviously not worry about anything.  So, guess I better do some quick shopping and pack as we don't know what day they will want her to check in.

Well, that's it for now, will keep you all posted as to when I bring her to Philadelphia.  This is not easy for me to be separated from my child, but she is atrophied in her legs and probably does need to be monitored.  I had second thoughts when I got home this evening about the in-hospital stay but don't want to delay this treatment any further, so I am just placing her in God's hands.  Now, it's just another wait and see, and as you know, each time we think things are going to take place, there's a setback - hopefully, this tiime things will work out.  Just hope she's home by Christmas!  Keep us in your prayers, please!   Thanks for all your support and suggestions.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shade on November 29, 2005, 11:57:06 AM
Lisa,

You and your family have endured so much, hopefully this will work out.  You all need to get some rest and relax time.....  Hoping this is the answer for Heather and this hospital can get things back on track so she can start doing kid things again..... This has gone on for way too long. 
Sending hugs and good vibes your way.......................  ~Shade
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on November 29, 2005, 12:04:45 PM
You need to do this. I know it is hard for all of you. Hang in there.

KNEEguru
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on November 29, 2005, 01:25:42 PM
I really hope this works for Heather.  I know you all have been through so much.  Keep us posted!

Cindy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: brattkids on November 29, 2005, 11:29:31 PM
I am really praying for you guys!!!! I sure hope that this program helps Heather!! God bless you both

Paulette
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on November 30, 2005, 05:08:39 AM
Hi,

Thanks for the encouragement, prayers and support.  And, yes Sheila, I do need to do this and it is very, very hard.  I'm expecting a call any time soon from Philadelphia.  I phoned my insurance company tonight and they told me a pre-certification was requested for the hospital stay today.  So, tomorrow I'm off buying some things to pack for her and then guess we will be off to the hospital as soon as they say to bring her in.  God, it is sooooo hard but I know it has to be done this way.  For a while I was thinking about changing it to an out patient therapy stay, but know that will only prolong her getting better as we might have to wait again for another opening.  I'm just praying to stay strong for her and think positive thoughts.  By the way, I mentioned to the doctor about this site and possibly video taping her progress but he made no comment and just agreed that so many don't know about RND.  I will see if they will let me video tape her when I go for visits.

Well, it's late and I have not slept very much in the past few nights so I am going to "try and sleep" tonight.  Thank you all for the kind words.   They help more than you know.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on November 30, 2005, 09:04:50 AM
Lisa,

You two (and your son) will come out of this stronger and closer than ever.  It's something that Heather has to address alone on a day to day basis as she learns to deal with this condition.  She will get the strength to do this through your support and your trust and faith in her to handle the daily decision-making.  I was very ill at age 13-14, basically the summer before starting high school.  I had been to Mexico on a cultural visit and picked up an amoeba.  When I got back, within a month of my return I had lost over 35 pounds.  Couldn't keep food down or in me if I did manage to swallow.  It was hard.  And my mom was working full time supporting my family so that my dad could spend the summer doing his dream job--covering the LA Olympics as a reporter for the Los Angeles Times.  And also, he was planning on retiring.  Lots of family issues going on, in other words, and I was about to start high school.  I had to deal with my silly GP and his talk of 'bulimia' and 'anorexia' which I would literally be the last person on the face of the earth to have!  I remember crying one afternoon because my brother and his buds were having a pizza party and the pizza smelled sooooooo good and I couldn't even take a bite without getting sick.   So anyway, I had to go to the library and speak to the reference librarian to help me do research on my potential problems.  Remember, this was in the days before computerized ANYTHING and there was no internet.  So I had to find a person to treat me and pretty much go through it alone while my mom held down the fort and my brother drove me to appointments.

Later, when I was 17, I was critically injured in a car accident--ended up in cardiac intensive care unit with a fractured sternum, broken collarbone, cardiac contusion (bleeding/bruising around the heart--the scary one), and a separated shoulder that we now know was so much worse.  I was all by myself in the CCU, and everyone kept talking about how well I was doing and how mature, and how I was able to talk to the doctors about my condition.  It went back to a time when my mom couldn't be there for much more than to be a sounding board and provide support and guidance.  I really believe this made me stronger.

At age 18 I took a graduation gift of $$$ and turned it into a cheap backpacking trip to Guatemala to continue my love affair with the Spanish Language and Latin American literature in general.  What an amazing summer.  Then I came back to CA and packed up, getting ready to become the first person in my family to go out of state for school....I went 3000 miles, all the way across the country to Washington D.C.  Then I spent a year abroad in Brazil studying at the Universidade de Sao Paulo, and traveling to the Andes and the Amazon and the Atacama desert.  After college graduation I spent a year in Eastern Europe--the first American in my small, rural town in the Hungarian wine-growing district.  I taught English to high-schoolers, and it was an amazing experience.  Then I went back to the US and applied to grad schools (again in DC, across the country from family)...but not before packing a backpack and getting on a plan for Australia....via Tahiti and New Zealand.  I traveled alone for 5 months--until the money ran out  ;D

So the point of my long-winded trip down memory lane is that I'm the independent person I am in part because I had to deal with a serious illness at age 13.  Heather will come out of this strong and confident in her ability to make decisions and care for herself.  It might not be immediate, and of course she's going to need guidance, but this will be her journey.  You will make it through her, supporting and cheering her on.  And while she probably won't grow up on you overnight, you will see a new maturity in her and be so proud.  And she'll be able to look back on this time, once she's all better and back to normal, and realize that she did it.  SHE DID IT!  It's an amazing gift and opportunity you are giving her, and I know the sacrifice is huge.  Hopefully the rewards and benefits will be even better.

Good luck to Heather and keep us posted.  Good luck to you, too, as this is a growing experience for everyone.  It will be great.  We'll be sending positive vibes toward her.

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 01, 2005, 03:56:15 AM
Hi Heather and everyone,

Thanks for sharing your story.  You certainly have been through a lot in your life! 

We are all on an emotional roller coaster again here at home.  Heather really doesn't want to be in the hospital and her brother doesn't want to be away from his home for an extended period.  As for me, I only want what is best for Heather.  I couldn't concentrate too great in work today with all of this on my mind.  I, too, would rather be down in Philadelphia bringing her to the out-patient program.  And, guess what?  Late this afternoon, I phoned my insurance carrier who told me that even though the pre-certification was called in, it was "denied" for an in-hospital stay.  I was in complete shock and tried calling Philadelphia to no avail - answering machines!  I, then went out with Heather to buy pjs, etc. for the trip. When I came home, my son told me Dr. Sherry phoned and left a message on the answering machine but when I went to try and play it back, there was no message, only the hospital number showing on my caller ID.  My son said that all he heard was the doctor saying that the Medical Director approved the stay and then the machine cut off.  I phoned back my insurance carrier and still was told that it was denied and she read me the reason why:

"After review of the information received, the specific circumstances of this member and the milliman guide carelines for recovery facility care, cause for requested permission has been denied.  The information received includes the member's rehabilitation treatment for a minimum of 5 hours or more per day of skilled nursing and 3 or more hours of rehabilitation services.  Further treatment could be provided in another setting - out patient or at home."  She (the woman from Aetna) told me that it further went on to say that if I brought her to the in-patient program that I could be responsible for payment as it was denied.

Don't know if this is an answer to prayer or another setback.  I will have to phone Philadelphia from work tomorrow and somehow find out what is going on.  I can't take the chance of putting her in the program and owing a huge amount of money.  Perhaps out-patient will be the way.  I don't know what the answer will be - all I know is that my kid can't go on waiting for much longer, atrophied as she is.  Needless to say, you can only imagine how stressful this whole thing is.  I prayed again tonight with Heather that not the doctor's will or our will but only what God thinks is best should be done but quickly!"  So here we go again.

Just wanted to keep you all posted - don't know how I am holding it together for so long, but have to believe it is only by the strength of faith that I am getting through this.  Please continue to keep us in your prayers!  Thank you all for following our story and all the support you give us.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: lu.the.roo on December 01, 2005, 07:09:38 AM
hi,
im 14 and am about to get ttt surgery done for a non sporting ingury.
i tried physio for about a month and it did nothing for me so i guess it works with some people and not with others
maybe asking your physio what sort of improvement she should be displaying would help because it may only be discreet.
with crutches it does tend to favour the leg that is doing all of the work but if she is doing physio on the bad one it should even out eventually.
when i go in the water it helps a lot so maybe if she tried some hydrotherapy but no breaststroke because i know from experiance it hurts!!
a second opinion is always good to get rid of the idea that you are doing something wrong.
i dont know if this is any help but i hope it is in some way.
good luck hope she gets better
lucy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 02, 2005, 03:57:27 AM
Hi,

Well, Dr. Sherry's nurse phoned me at work today and said that the in-hospital stay was "APPROVED" late last night.  She said the doctor phoned the insurance company and would not take no for an answer.  So, we are going down to Philadelphia Monday 12/5.  The nurse was wonderful to speak with and very informative, caring, etc.  Heather will not be in the RND section but in the Rehab section with 17 other children around her age.  She felt upset that I was led to believe Heather would be the only one in-patient.  She will be with children recovering from various orthopedic injuries.  They have a teacher on staff with a Masters Degree who will be helping her with schoolwork and she will have access to the internet.  She told me it is a very therapeutic setting and Heather should be happy.  They watch movies, do crafts, etc.  So, needless to say, my mind is much more at ease.  She also told me that if she does well they can move her from in-patient to out-patient but that I should discuss this with the doctor.  Thank you all for your concern and prayers.

I will try and post her progress here whenever I get the chance. 

Hope you all have a good weekend - it is supposed to snow here Monday so a few extra prayers are in order for it not to be a dibilitating snow storm - up here in the Poconos, that could happen easily.  I'm really anxious to meet the staff that will be working with Heather when we get there on Monday.  It's been a long, hard road but hopefully we are coming to a place of true healing.  God bless you all and once again - thank you sooo much from the bottom of my heart.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Heather M. on December 02, 2005, 04:23:35 AM
Lisa,

I'm so relieved to hear this!  You and Heather are VERY lucky to have such a wonderful, caring doctor.  Now let them work their magic, which combined with Heather's efforts will hopefully resolve everything.  Be positive and have faith--she is getting state of the art care in what sounds like a wonderful setting. 

Give Heather our very best and tell her that we'll be pulling for her to get better.  Sending vibes from the healing Red Rocks of Arizona, which are known for their curative powers.  Seriously, this place has been holy to just about every group that has ever come through and seen the rocks at sunset.  So hopefully the good vibes can travel all the way across the country.... ;D

(http://www.experiencesedona.com/gallery/redrock/thumbnails/06_red_rock_crossing_t.jpg)

(http://www.experiencesedona.com/gallery/redrock/thumbnails/11_lighting_t.jpg)

Heather
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on December 03, 2005, 10:41:32 AM
WOW!  A doctor who calls the insurance company and won't take no for an answer?  AND makes them back down?  Sounds like some kind of miracle to me!  Heather is right-you definitely have a group of people who are Patient advocates!  I see good things ahead!  Keep us posted, and stay positive! :D
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 04, 2005, 06:04:16 AM
Hi,

Just thought I'd drop a line before heading off on Monday to Philly.  Almost had another setback, but everything is a "go" for now.  Friday when I came home from work there was a message on my machine from the insurance company - said they needed to speak to a parent of Heather's.  Anyway, I called back but got the answering machine of this Manager.  I then called Philadelphia and spoke to the nurse and she told me to ignore anything they say, like if it's denied because they had the approval, which by the way I go a confirming letter of approval today from Aetna, though it did not state a very long period of treatment.  Anyway, the nurse told me that the hospital would never let me bring her in if the charges weren't approved, because the program costs - are you ready for this - $20,000 a day!  It better be covered!!

Well, I will try and post next week - we put up a Christmas tree tonight, as I thought she should be here to see it early, in case she's still in Philadelphia on Christmas.  It's supposed to snow tonight 3-4 inches, but this is the Poconos.  To me it's the boondocks as I'm all City girl.

Speak to you all next week.  Please keep us in your prayers!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 08, 2005, 04:04:59 AM
Hi,

Just thought I'd give you all an update on Heather.  She started therapy within an hour of getting there.  No time wasted!  Of course, I was not allowed to be with her in the sessions.  She's doing pt and ot plus some days there's music therapy and tomorrow, Thursday and Friday, swimming.  I'm a little exhausted from not sleeping very well, so bear with me please.  I will see her Saturday, God willing.  Now, bear in mind she was admitted Monday Dec. 5 and she told me Tuesday, Dec. 6 that she ran down the hall from end to end of the floor in 22 seconds.  Tonight she told me, she did the same run in 7 seconds.  Amazing!  She is off crutches and has been bending her knee and getting it to stay in alignment.  She has to work with her hip to get the knee in the right position.  She said it sometimes goes back inverted, but tonight she said it stood pretty straight most of the day.  I spoke to the doctor briefly last night on the phone, when he was in her room.  He said she is very determined and is doing well.  They are concerned about the weight loss.  I was the one who initially told them about my concern with the amount of weight she has lost and they said that 13 pounds was not all muscle loss.  So they took blood tests and are monitoring her weight and making sure she eats her meals.  We had to be seen by a psychiatrist, whom I think was trying to rule out Anorexia - that's just my gut feeling.  Heather has always been a very petite child, but the weight loss was something that had to be addressed.  She weighed almost 80 pounds when they weighed her.  She was about 93 lbs. in March 2005 - so it definitely is a concern.  She said her legs are bruised from the therapy - she's doing doggie walks, and all kinds of animal walks.  The therapy sounds very intense.  I know the dvd I watched was simply miraculous and now I just can't wait to see her and see her actually running.  Unbelievable for such a short period of time.  I will let you know more after I visit her this weekend.  The hopes are that they will transition her to out-patient in a few weeks.  I know how hard it must be for her to be alone there.  She wants so bad to come home that she is working extra hard.  Please keep her in your prayers, me too - I have to stay strong and try and sleep.

Take care!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on December 08, 2005, 04:15:25 AM
Great news Lisa!!  I was just thinking about you and Heather and wondering when you were going to post . 1 minute later the good news was here.
I'm sure your mind will be racing with all kinds of thoughts. But you need to get your rest. Tis the season of viruses in the air . You don't need that. Tell Heather we are looking forward to hearing regular updates on what she is doing. Is she going to keep a daily diary of what she is doing and her results? That would be a good thing to post when all is done. Hugs ! Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 08, 2005, 04:27:15 AM
Hi Ron,

I was just going to turn off the computer and "try and sleep" when I saw your post.  I'll tell Heather about maybe keeping a diary of what she is doing but I think she is so exhausted from all this therapy.  It's all day long with the added factor of them staying on top of her nutritionally and asking her a million questions.  The poor thing!  But like I said, I can't wait to see her. Thanks for writing.  Well, over and out - at least I hope I fall asleep quickly.  Just drank some "sleepy time tea with valerium"  supposed to make you tired - doesn't seem to do anything for me - oh well!

Have a good night.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on December 08, 2005, 09:10:45 AM
Lisa,

     That's just great news!  I think maybe we need to learn and be aware a little more of RSD, if that's the final diagnosis; whatever it is, the therapy seems to be working.  It's great that Heather is finally getting the credit for being a fighter!  Tell her good luck and keep working hard; I think we all feel like we've kind of 'adopted' her a little, and look forward to her continued success! :)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Janet on December 09, 2005, 12:58:06 AM
This is such wonderful, wonderful news!! I'm so glad you persevered and fought for Heather and that you finally found the right, caring doctor. Please keep us posted and tell Heather we're all pulling for her....and for you!

Janet
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 09, 2005, 04:52:17 AM
Hi Trekker, Janet and all:

Thank you for sharing my joy!  I just can't wait to see her on Saturday.  We're having a snow storm tonight and tomorrow so I pray that I'll be able to get there Saturday.  Spoke to her tonight and she said that Dr. Sherry is probably going to phone me some time soon.  She said that she's walking straight and that her knee is staying in the correct position most of the day.  She's very black and blue from being on her knees a lot doing all sorts of therapy.  Yesterday she told me that her and some other RND kids in the program were playing Sorry and they had only her squatting the entire time.  Guess that's to keep her knees bending.   I was thinking last night that when someone goes to pt 3 times a week for an hour for 6 weeks let's say.  Well I timed that by 6 hours of pt a day for 5 days - that would equal something like 10 weeks of therapy.  I probably got that wrong, but I was trying to figure out how they get these kids up and back to almost normal in such a short period of time.  She said she feels sore from all the pt - she's doing so many different things, push-ups, weights on her legs, yoga, etc.  She gained a pound, but my guess is that she is still atrophied but I will have to speak to the doctor about all of this.

Well, it's late so I am going to end here - will write more after I see her this weekend.

I'll tell Heather you're all pulling for her.  Thanks so much for all your concern and support.

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shade on December 09, 2005, 09:13:20 AM
Lisa,

Just awesome news!!

Know this has been so hard on your family, but things finally look like they are headed in the right direction.  Hope you have a great visit with Heather this weekend.  Just wonderful hearing how far along she is after such a short period of time.  Great News!!  ~Shade
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trish85 on December 09, 2005, 10:40:11 PM
Lisa
Its amazing that something that took so long to be figured out is almost back to normal in such a short time.  There is definetly someone upstairs on your side about this.  Keep us posted on Heather's progress.
Trish
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 11, 2005, 02:56:20 AM
Hi,

I am typing this from the Ronald Mcdonald House in Philadelphia.  Just wanted to let you all know that I saw Heather a little while ago and it is truly a MIRACLE!!  Her leg is completely normal looking, with the exception of a few black and blues, and she is running, squatting, everything a normal kid can do!  I actually had trouble keeping up with her walking, she was walking so fast! I brought my camcorder and took some pictures of her running.  I couldn't believe my eyes.  Still haven't seen the doctor and don't know if he will be around tomorrow when I go back to the Hospital.  Will keep you all posted.  I just had to write you all to let you know how overjoyed I am.  She still has to build up more strength but this is truly amazing.  I just want to hug this doctor. 

Well, I have to get up early tomorrow so I will speak to you all when I get back to the Poconos.

Thank you all for your prayers.  Most of all I thank God!

I believe in miracles!!!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on December 11, 2005, 03:11:03 AM
WAHOOOOOOOOOOO!!!!!!  HOW AWESOME IS THAT LISA   I don't know how you are going to sleep after all that. I hope you Take some pics too and post them like you did before her leg was so messed up.

You just made me so very happy and warm with this great news. Your undying faith and love have been rewarded. SUPER BIG HUGS !!! Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Newallaround on December 11, 2005, 04:12:11 AM
Last night I read the entire topic from start to finsh, took a few hours. ;) I am so happy to hear the progress, after reading everything I know how much you and Heather deserve it. Truly a miracle. Congratulations!

PS I am new to the boards, but your story and everyone's responses showed me how great this board is.
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on December 11, 2005, 09:52:03 AM
I am so pleased that you found the help you needed, and that it is working. hugs. KNEEguru
Title: Re: opinion needed re 13 year old daughter's knee
Post by: AJStamp on December 11, 2005, 02:28:00 PM
I'm sorry to hear that your Daughter's knee doesn't seem to be getting any better, I have a very different problem with my knee.  Throughout my teens I was in constant PT, I found as a teenager it a constant struggle to be heard by my PT and my poor Mother wasn't sure who to listen to.  Has therapy in a hydro pool been suggested ????

Take care Amanda
Title: Re: opinion needed re 13 year old daughter's knee
Post by: The KNEEguru on December 11, 2005, 05:15:50 PM
Hi Amanda
I think you might have missed some of the latest posts here, as Lisa's daughter, Heather, is now making good progress - once the diagnosis of RND was established and an intensive treatment programme started.

Lisa indeed did not know who to listen too. Because of the original injury, a red-herring of a postero-lateral corner injury was investigated, but eventually after mch persistence the diagnosis of paediatric RND was made and therapy (a concentrated and specific exerise programme)  begun only a few days ago, with startling success.

You are right, though. Many times the clinicians themselves make a mis-diagnosis, or get fed-up when the symptoms persist despite their best attempts. It was a surprise to Lisa, after many visits to experts,  when suddenly a doctor appeared to seemed  to totally understand what the problem was and what to do about it.

KNEEguru
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 11, 2005, 05:30:28 PM
Hi Everyone,

It's Heather and I'm writing from Children's Hosptial in Philadelphia.  I'm just letting you know how I am doing. Today I beat all my times for the animal walks, the run, step ups and other exercises.  Today I ran the hall in 6.6 seconds.  Thank you for all your support.  The doctor plans to let me out of the program next week and just giving me home exercises. I may be going to a PT somewhere by home to help with the atrophy.  Dr. Sherry told me that this week they are going to work on building up my legs before he lets me out.  Feel free to write me.  I'll try to write every day on my progress if noone is on the computer.  Write to all of you real soon.  

Heather  8)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Ronxski on December 11, 2005, 05:53:11 PM
Hi Heather !! It is wonderful to hear from you on this site !  How great is it that you get to go home so soon! Is it hard for you to sleep now that you are able to do things? I bet you just want to get up and get going each day.
You are making fantastic progress! Make sure you have instructions written down for you when you go home for all your exercises. I think you will work just as hard at home on your PT . And that will be important to be self motivated once you are out of that hospital setting.

Are you able to eat good now that you are active? It's really important that you keep up on your nutrition as well so you get better all that much sooner. HUGS, Ron
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on December 11, 2005, 10:18:59 PM
Reading your posts brings tears to my eyes. I am so happy for you that there is, finally, something that helps. Being misunderstood, noy believed, mis-diagnosed is such a hard thing to go through. It will make you and your family really strong.

If it were one of my daughters I hope I would have the same persistance and determination.

Your story ROCKS!!!!!
xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 12, 2005, 04:49:04 AM
Hi,

I am home from Philadelphia and overjoyed after seeing Heather.  Once again, thank you all soooooo much for sharing my joy.  My friend who drove us there said I should, when I have a chance, to mail each of the doctors we went to a short note and attach the brochure I got on RND and children.  So few have heard about this condition and the miraculous results of this new program.  Now, if I could only find the brochure :)  I will write more this week after I speak to Dr. Sherry.  Since I don't know how to email Heather in the Hospital, I know she's reading this board, so you all can eavesdrop as I write something to Heather:)

Heather - Thank you for your beautiful email card - I miss you more than you know!  I want you home just as much, if not more, than you want to come home.  Hope you were able to sleep better last night and that your new room mate did not keep you up again.  Is there a way I can email you there?  Ask one of the kids who use the computer - they probably know more than the nurses:)  Sorry I had to hang up but there was just so much to do before work tomorrow.  We will talk later as long as you like - I'll phone you when I get home from work.  I know you will be home for Christmas! (((((((HEATHER)))))) xxxxxxx

And Hugs to all you wonderful people on this Board - you are all truly amazing, caring people! 

Lisa

Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on December 12, 2005, 12:29:05 PM
Heather and Lisa,

I'm so happy to hear about your progress!  Heather you have a Great Mom!  I hope you will remember her standing by your side for life.  She believed you when so many Drs. had their doubts. 

Good luck for continued healing!  Have a Very Merry Christmas! 

Cindy

Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 12, 2005, 07:32:43 PM
Hi Everyone,

It's Heather.  Today I beat all my times after doing most of them over about five times.  I had to do them over because all my times are so low now that I keep on missing them by a second.  Will let you all know if I get to go home this week.  Still have more therapy to do today.  I did my run down the hall today in 6.5 seconds.  Wil write you more tomorrow probably.  Dr. Sherry will be phoning my mom today around 4:00 PM to give her some info.  I hope that info includes the day I'm getting to go home.  Well, I have to go now because I have more therapy real soon.

Heather  ;)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sparkle999 on December 12, 2005, 08:32:08 PM
heather
you sound really 'buzzing'. This is the best xmas pressie ever for you!
xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: laupinto on December 13, 2005, 04:36:53 AM
Heather and Lisa, I ahve been reading this post since it started and never knew the right things to say to either of you.  I am just so happy everything feel into place and now thingsare going great for you Heather.  I have been dealing wiht my knee problems since i was 8 (now 20)  it is so hard being young and dealing with this, but you both handled this so well.  I hope you will be home into for chirstmas!!!! You both have been and still will be in my thoughts.Much Love,
lauren
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 13, 2005, 07:51:27 PM
Hi Everyone,

It's Heather.  I beat all my times again today.  The run I did in 6.2 seconds.  All my other exercises I beat by ten seconds.  Dr. Sherry told me that he thinks I'm basically done with all the stepups, animal walks, and the other exercises.  He told me that he is going to speak to my mom or leave a message on the answering machine about letting me out of the program.  Dr. Sherry is very happy with my progress and so I'm I.  They can't believe that I keep on beating my times when they are so low.  Well, it is almost time for my next PT session.  I will probably write more tomorrow.  Tomorrow my PT is ready for me to set a record for the person that can stay on the treadmill the longest until they are going to fall off.  I thank you all for your support.

Heather ;D
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 14, 2005, 01:16:22 AM
Hi Everyone,

 It's Heather.  Just thought I let you all know that I get to go home on Thursday!  Will write more tomorrow and let all of you know how my last day is going in this program.   Thank you all for writing and for all your support!  Hoping you all have a wonderful day!

Heather   8)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: shade on December 14, 2005, 01:18:45 AM
Heather,

Wonderful news.  You have worked so hard and it has definately paid off.  Good going.....

It is just so amazing to hear that this therapy has helped you so quickly and so wonderful that your mom found this facility..... 

Hope you and your family have a wonderful christmas season.....  ~Shade
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Janet on December 14, 2005, 01:30:49 AM
Heather:

You're getting an early Christmas present. I bet you're glad to be going home....and doing so well, too! Wait until your friends see you, they won't believe it. We are all soooo happy for you!

Janet
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 14, 2005, 03:39:49 AM
Hi,

It's not Heather:)  It's an overjoyed mom, not upset any more!  I see Heather wrote you that she's coming home Thursday.  I spoke with Dr. Sherry who said she is "cured", and that he is very impressed with her results.  I asked him if the diagnosis was definitely RND and he said it partly was RND - when he saw her the first time in the hospital after the EUA and she was in intense pain; and partly conversion as she didn't have the same pain after.  At any rate, it doesn't matter, what matters is that the program worked and she is, as he said "Cured".  How wonderful, how miraculous!  He said he would meet me before discharge on Thursday and that they would give her a home exercise program and have her come back in a month for a follow-up plus go to her regular pediatrician for weight checks twice a week.  Then she would see him one last time in the summer.  I expressed my thanks to him for her healing and told him how I cried tears of joy when seeing her run! 

And, Heather, if you are reading this, I can't wait until you are home.  Like I told you on the phone, you are my Christmas present! 

Thank you all for following our story and keeping us in your thoughts and prayers.  This board has really been a great source of comfort and support throughout all these months.  I still can't get over how quickly she got well after so long.  I thank God for giving me the insight to keep going from doctor to doctor until something made sense.  This doctor said I know what is wrong and I can fix it -- and he sure did!  I am still so overwhelmed by this - It took a long time but God's tiime is not our time that's for sure! 

Speak to you all later this week! 

Hugs to all!

Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on December 14, 2005, 07:58:13 AM
Hi, Heather;

     I haven't been on the board for a few days and missed out on the rush of progress in the last few days-I kind of feel guilty for missing out!!!  Great work on your part in keeping up enthusiastically with the doctor's program, and BOO to the doctors that implied you weren't tough enough!  Maybe they just weren't educated enough!  You have definitely educated a lot of us on the board through your travails, and I'm sure that in the future your experience will help individuals on this board who have similar problems but have not found an answer!  Maybe in the future you will drop on in to the board on occasion; you never know who you might help with your experience, and I know that there is ONE doctor you will not hesitate to recommend! 

     Lisa, I think this thread kind of took on a life of it's own, kind of like a TV series  that finally seems to have a happy ending.  As I know you believe, these experiences make us stronger in so many ways.  And you know, it really is amazing what the body can do if you just create the right conditions for it.  I'm looking forward to hearing about her continued progress :D
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 14, 2005, 08:33:18 PM
Hi Everyone,

It's Heather.  Today I beat all my times again.  I did the run in 6.06 seconds.  I also beat all the animal walks and other exercises.  They gave me three pages of home exercises to do.  I went in the pool today and the therapist coundn't believe I could not swim because I was doing so well in the pool. They forgot to put me on the treadmill so I did not get to set that record for them.  I have no therapy at all tomorrow. I did all the test they gave me in the beginning to see how strong I was and I passed them all with flying colors.  Once again I thank you all for your support and caring words.  Wishing you all have a wonderful day!  Will write again sometime really soon.

Heather ;)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Boydy on December 14, 2005, 10:15:03 PM
Hi Lisa & Heather,
I have been following your anxieties, disappointments and frustrations from day one, but (along with a  lot of other people, I'm sure ) didn't post, as I felt so hopless & knew not what to say.  :-\ But now I can tell you how overjoyed and thrilled I am that through your dedication and courage and determination, (both of you)  there has been this wonderful and remarkable outcome!!  I am hoping when things settle down you will find the time to write a bit about what sort of things you had to do in the program, Heather,  it seems quite miraculous, that you can be running up corridors in one day !!  :o  It will give us all hope and encouragement to keep looking for the right answers.  I am so happy for you both,  it will be an extra wonderful Christmas.  You have truly been blessed !!   :D
Boydy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: sartracker on December 16, 2005, 02:59:16 AM
What a Merry Christmas your family will have this year!!!   ;D  Good job Lisa for standing up for your daughter and to you Heather for all your hard work at the hospital.  And I think your brother deserves an award for being so patient and helpful during this rough year.   ;)
The struggles of this past year and the Grand Finale of being cured read like a book and I love happy endings.  You truly stayed the course and came out Champions!   :D
Wishing you a blessed Christmas and the Happiest New Year!  Kitty  :-* 
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 17, 2005, 03:09:31 AM
Hi Everyone,

It's Heather.  I'm home and doing the exercises they gave me to do.  If you would like to know what the exercises are just let me know and I will gladly type them up.  When I have the time I will try to also type what I did in the program.  I have an appointment to go see Dr. Sherry in a month on January 23.  After that I see him one more time during the summer.  Mom is going to get me a membership in the YMCA so I can work out in the gym.  I have to take a teen strength course first before I can use the gym there. Wishing you all a Merry Christmas and a Happy New Year.  Thanks for all your caring words and support!  Will write really soon again.

Heather :-*
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on December 17, 2005, 12:05:31 PM
Heather, I'd definitely be interested in seeing the PT program they put you on.  No hurry, just whenever you have the time.  Keep up the good work!  ;)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 18, 2005, 02:47:01 AM
Hi Trekker,

It's Heather.  Here is my PT program.  Keep in mind everybody has an individual program based on their needs. On my paper they show pictures for each exercise.  Not all of these exercises are based on the knee because they work your whole body in the program.  In the beginning they had to make my muscle in front of my thigh (which is the strongest muscle in your body) get loose, they had to snap it - I had to push back while they were bending it up and then it let loose and just kicked me right in the butt! After the muscle got loose, and it stood loose, we had to work on realigning the knee by turning my hip a certain way, which felt to me like I was sticking it all the way out to the side, which it wasn't.  The program was very intense - nothing compared to the home exercises which I will now list. 

1) Trunk Stability
Bridging with Straight Leg Raise

With legs bent, begin by lifting buttocks 6-8 inches from floor.  Then slowly extend one knee, keeping stomach tight.  Hold 10 seconds, then slowly return to starting position.  Repeat 15 times each.  Do 1 session per day.

2) Trunk Stability
Quadruped Opposite Upper and Lower Extremity Extension

Tighten stomach and simultaneously raise leg and opposite arm.  Hold 10 seconds, then slowly return to starting position, keeping trunk rigid.  Repeat 15 times each side.  Do 1 session per day.

3) Trunk Stability
Kneeling to Standing

From kneeling, move to half kneeling, then lean slightly forward over front leg while rising.  Return to kneeling position.  Repeat with other leg.

Repeat 30 times per session.  Do 1 sessions per day.

4) Hip/Knee
Strengthening: Standing Knee Flexion

Standing, bend knee as far as possible.  Hold 10 seconds.  Repeat 15 times.  Do 1 sessions per day.

5) Ankle/Foot
Standing Bilateral Heel Rise

Rise up on balls of feet.  Repeat 15 times per set.  Do 2 sets per session.  Do 1 sessions per day.

6) Trunk Stability
Advanced Straight Leg Raise

Begin with knees bent and feet 6-8 inches from floor.  Keeping stomach tight, slowly straighten one leg.  Hold 10 seconds, then return to starting position.  Repeat 15 times each side.  Do 1 sessions per day.

7) Abs - Crunch

Keeping head and neck in line with spine, elevate shoulders and upper back towards knees, keeping low and middle back in touch with floor.  Complete 15 repetitions.  Do 2 sets.

8) Abs - Reverse Crunch

With knees bent at 90 degree angles, curl hips up until lower back clears floor.  Complete 15 repetitions.  Do 2 sets.

9) Upper Extremity
Push-Up with Press-Up

With toes on ground, feet together, hands shoulder width apart, and chest on floor, push up by straightening arms.  Continue by pressing up shoulders and arching upper back.  Return to start position with chest to floor.  Repeat 30 times.  Do 1 sessions per day.

10) Hip/Knee
Strengthening: Straight Leg Raise, Phase II

Resting on forearms, tighten muscle on front thigh, then lift leg 8-10 inches from surface, keeping knee locked. Hold 10 seconds.  Repeat 15 times.  Do 1 sessions per day.

11) Hip/Knee
Strengthening: Wall Slides

Leaning on wall, slowly lower buttocks until thighs are parallel to floor.  Hold 10 seconds.  Tighten thigh muscles as you return to starting position.  Repeat 15 times.  Do 1 sessions per day.

12) Hip/Knee
Strengthening: Prone Hip Extension

Lying on stomach, tighten muscle on front of thigh, then lift leg 8-10 inches from surface, keeping knee locked.  Hold 10 seconds.  Repeat 15 times.  Do 1 sessions per day.

13) Hamstrings - Head to Knee

With hands on ankle, pull head toward knee and hold 30 seconds.  Repeat with other leg.  Repeat 2 times.  Do 1 sessions per day.

14) Lower Leg - Toe Flexors

From position shown, gently push feet back until stretch is felt.  For greater stretch, sit on legs and gently lean back.  Repeat 3 times.  Do 1 sessions per day.

15) Lower Extremity
Endurance, Agility: Forward Treadmill

Walk Forward on treadmill for 15 minutes.

Remember to cool down and warm up with each session.  Exercises should take only 40 minutes each day.  Do them daily for the next 2 weeks, then you can decrease the frequency to 3 times a week.

Can do something aerobic also.  Stay active.  Do something fun everyday.  Sorry Trekker that this was so long.

Heather  :)
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Boydy on December 18, 2005, 04:27:44 AM
Hi Heather,  thanks for taking the time to write out your program, that was very interesting, boy you do have to work hard , don't you, do you do all that EVERY day ?  Also, does any of those exercises hurt you, ? or cause pain ?  Could you kneel before you started this program, ?  Sorry about the 20 questions,  I am just so blown away by your progress, to think you can even do these exercises is amazing, you must be so happy to have come so far in such a short time.  Well done,  keep up the good work, you ( &  your mum) are amazing !!!   :D
Boydy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 18, 2005, 05:51:46 AM
Hi,

It's Lisa ;)  Think Heather has taken over since getting cured!  I haven't written as I am unwinding from everything as you can imagine.  It's been a long adventure to say the least.  Don't know when I will stop being amazed at her miraculous, quick recovery.  I am convinced that all the prayers that went up did not go unheard.  We went to Church Saturday night and Heather was in a seat that the kneeler didn't reach and she knelt on the carpet instead.  I just glanced at her and said "wow" to myself.  I am so proud of her determination and hard work.  I truly think that the program she was in could benefit so many teenagers whose MRIs show nothing and don't have a clear diagnosis.  So many pts and os's need to be made aware of RND (which is not specifically RSD).  In Heather's case, the pain that so many children have with RND was not present, yet the program healed her.  Thank you all for hanging in there with us.  Heather checks the board practically every night and enjoys posting.

Hope you all are feeling alright and that you have a good week!  As soon as I can figure out how to download some video I took in the Hospital of Heather running, I will try and post it. 

Hugs,
Lis
Title: Re: opinion needed re 13 year old daughter's knee
Post by: trekker05 on December 18, 2005, 11:21:47 AM
Heather, thank you for taking the time to post the exercises; it's a very intensive program.  I am familiar with most of the exercises since I use them with many of my clients who have various dysfunctions and weaknesses.  Aside from correcting your injury, you're going to be in pretty darn good shape at the end.  Keep it up! ;D
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 24, 2005, 04:13:04 AM
Hi,

I want to wish all of you a very happy and blessed Christmas!  Sorry I haven't responded sooner but I've been rather busy fighting the traffic and Holiday madness at the Malls - last minute Christmas shopping!  Still unwinding from the past year.  My son is sick with a fever and sinus infection so hope he's better by Christmas.  Never ending Mom stuff.  When I get a chance, hopefully soon, I will respond to those who pm'd me.  It's just been so hectic lately.  Heather wishes you all a very merry Christmas too!  I want to put a bow on her and place her under the tree LOL.  I won a 20" tv/dvd combo at my job raffle so that makes 2 presents for me - Heather being No. 1.

Once again I want to thank you all for being there for us throughout the past year - I hope 2006 brings you all healing, grace and renewed health, etc., etc.

Love and prayers,
Lisa and Heather

P.S.  I forgot the hugs (((((((KNEE GEEKS))))))
Title: Re: opinion needed re 13 year old daughter's knee
Post by: cholt on December 24, 2005, 06:21:42 PM
Lisa and Heather, 

I hope you don't mind me hijacking your thread to wish everyone a Very Merry Christmas and Happy New Year.  I think just about everyone has been on here at one time or another, so thought it would be a good place for everyone to get my message.

Heather, so glad you are home for Christmas!  You have much to celebrate!

Cindy
Title: Re: opinion needed re 13 year old daughter's knee
Post by: Puzzledbubbles on December 26, 2005, 10:37:55 PM
Hi,

I hope that your daughters knee is feeling a bit better over the holiday period. I know exactly what she is going through by being ignored, my knee problems started when i was 13 and no one believed there was anything wrong until i was 19 when i finally managed to get a 2nd opinion.

Everyone else has given you such good advice there is nothing new i can say except it is great to see that you are so supposrtive of her, my parents were not and didnt actually believe me either which made things a lot harder to bear and in the end, much worse overall.

Anyway, Hoping you are both happier now that things seem to be moving in the right direction even if that is towards a 3rd opinion.

Puzzled xx
Title: Re: opinion needed re 13 year old daughter's knee
Post by: upset mom on December 27, 2005, 04:53:22 AM
Hi Puzzled,

Guess you didn't read the entire thread - my daughter is actually "healed, cured", thank God.   But thanks for your interest.  This is one puzzle - forgive the pun - that I just solved for you.  And, hope that you have a pain free New Year!

Hugs,
Lisa
Title: Re: opinion needed re 13 year old daughter's knee
Post by: 9th grader in pain on September 05, 2006, 04:31:31 AM
 Dear upset mom,
     
      I was wondering if you have any advice for a fourteen-year-old girl who is still in knee pain even after lateral release surgery. If you have any tips for a teen in pain please respond.

           9th grader in pain