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Author Topic: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP  (Read 3630 times)

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Offline tablpa

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Anyone with experience or advice regarding our experience, please respond with your comments:

My 14 year old daughter had a dislocation the end of March while playing basketball.  This was a "bad one" with much swelling, pain, etc.  We went to family physician, PT and finally a MRI, which showed inflamation and bone brusing.  She was out of all activity for 4-5 weeks and everything seemed to be going pretty good.  She was doing strengthing exercises and wearing a lightweight brace,.

The end of June again while playing basketball, another dislocation, but very minor compared to the first.  (Both dislocations reduced by themselves).  A little swelling, ibuprofen, etc.  We did consult the therapist she had seen and he suggested more exercises, a better brace and to see the family physician again and still felt she would probably outgrow the problem upon completion of puberty.

Family physician referred to OS and boy did we get slapped in the face.  This is a girl who lives and breaths sports, I'm sure many of you know the type volleyball, basketball, track, some softball, but actually still plays baseball with the boys regular and all-star teams.  The OS said his recommendation is the TTT surgery.  This was not the best part.  She is 14.5 and the MRI shows her growth plates are not nearly closed yet.  This surgery will cut through the growth plate and cannot be done until the growth plate is almost closed.  His recommendation is for her to not do any strenuous activity (PE, or any sports) until that time, which will be based on further tests, but could be 3 months to one year away.  Then total recovery from TTT to activity would be 3-4 months.  That could be anywhere from 7 - 16 months this child could not do "anything" by her definition.

Of course we are getting a second opinion (from a pediatric sports medicine physician who is not a surgeon) and that is scheduled right after vacation, but I have learned a lot from reading other posts on this forum and would like any comments or feedback from any parent/child that may have been through or have knowledge of similar situations.

If the surgery is truly the solution, then I think we can consider that, but my questions are

Are we at that point with one serious and one minor dislocation?

Does activity really HAVE to be so seriously limited while waiting for growth plates to close for TTT surgery?


Thank you in advance for any advice or comments!,
Mother of a distraught 14 year old

Offline sinequanonsarah

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #1 on: July 08, 2006, 06:49:41 PM »
Hi tablpa -

I was going through the same things at your daughter's age.  Dislocations started at 11/12 years old.  My OS - who I thought did a really marvelous job with me - used surgery as an absolute last option (and I was to the point that my knees were dislocating about once a week).  I went through LOADS of physical therapy (to the point that my schools accepted them as phys ed credit), they tried taping my knees, and using braces (varying the times/conditions I used them for - I started using them only for strenuous activity and then worked up to using them all the time).  When all of these things failed (and this was over a year and a half time period), my OS finally suggested that I have a lateral release/medial reefing done on each of my knees (you can search the kneeguru site to get descriptions of these surgeries, which are often done together).  These procedures are much less invasive than a TTT, and for a girl who is still growing, probably a much better option than the TTT.  The lateral release surgery doesn't have the most marvelous success rate, though.  I've heard that it has worked for some, and not others, which is why I think that OSs sometimes jump straight to the next option, which is often the TTT.  But you're right, a TTT is very invasive and certainly not recommended for adolescents who are still growing.  The lateral release/medial reefing surgery did help stabilize my knees for a short while.  I was 13 when I had my lateral release surgeries, and 16 when my right knee dislocated again.  This is when my OS finally decided on the TTT.  My left knee hung in there for a little while longer, not really giving me TOO many problems (beyond minor subluxations) until college.  The left knee dislocated while I was travelling in Ecuador.  I put off having a TTT on that knee until it was too much for me to deal with - I'm now almost two weeks out from that surgery.  I would bet that your OS's time frame for complete recovery might be pretty conservative as well.  Everyone's post-op experiences with a TTT are different, but I don't expect to be off of crutches for 2 - 4 months, and will certainly have work to do even after that point. 

The TTT really is a major surgery, and I certainly wouldn't recommend it for your daughter just yet (keeping in mind, of course, that I'm not an OS - I'm only basing this on my own experiences).  After "only" two dislocations (which I'm sure were terrible for her) I would hope that her doctor and physical therapist would try as many options as they could before going the TTT route.  I might also consider getting yet another opinion from another OS - who knows, perhaps surgery IS in her future, but perhaps it might not have to be so invasive right away.

Please feel free to ask me any more questions - I know what your daughter is going through and I really feel for her right now.

Sarah
hypermobile joints
lateral release for patellar stabilization (L) 12/1995 and (R) 03/1996
Tibia Tubercle Transfer/Osteotomy (R) 08/1998 and (L) 06/2006
Synvisc injections (R & L) - 6 series since 2009
Steroid injections (R & L)

Offline doublea21

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #2 on: July 09, 2006, 02:29:29 AM »
I know what your daughter is going through.  I was active in sports when I was younger but started to have knee problems at age 8 (i'm 23 now).  When I was younger I was able to push through and play some sports with the assistance of some very good braces to help prevent my knee from slipping out.  I was in PT more than I wanted to in order to try and build up my quad muscles to help hold my knee in place.  I eventually had to cut back my activities more around your daughters age due to growth spurts and my muscles not being able to cope.  I had a lateral release with VMO advancement on both of my knees at 14 in an attempt to help the problem so that I could return to some activities with out so much pain since my growth plates had not closed.  This worked in the short term for one of my legs and not the other.  I was able to return for one season of basketball still wearing a knee brace after the first surgery.  I then had the TTT on my left knee at 17 and on my right knee at 18.  This is a big surgery and takes a lot of recovery but it was very successful for me for several years.  I was able to enjoy my time in college and while my knees will never be normal they were 100% better than they were before the surgery.  I have had some problems again in my right knee for the past year and a half after a very bad fall down some stairs which caused a major dislocation of my patella and has caused that knee to once again experience dislocations and subluxations again.

I am someone who never had a full dislocation before my previous surgeries so I would say that there is no number required if it is impacting your daughters life.  My knee was constantly subluxed which led to my problems.  This site has a lot of information on the realignment surgeries.  Look through some of the information on the main site and also talk to her OS about what other options she might have so that she can enjoy her teen years.  None of the surgeries are quick fixes and require dedicated rehab but if she is a proper candidate for them and puts in the time hopefully she can return to the sports she loves. 

Good Luck with everything and let me know if you have any other questions.

Amy
Dec 98 - R and L knee LR and VMO advancement
Dec 00 - L knee TTT
May 02 - R knee TTT and VMO advancement
Dec 04 - R knee screw removal
still too many subluxations and dislocations
July 06 - R knee MPFL Reconstruction

Offline Leentje

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #3 on: July 09, 2006, 03:56:59 PM »
Hi mom!

Sorry you're having to deal with this. I can only give my 2 cents in...

I was 14 when I had my first dislocation, it was the worst one I had over all these years... I was treated, but told at the same time  I would grow ou of it... Well I didn't, believe me! I too was (sorry, AM!!!) very active, and I didn't stop playing sports. Most dislocations weren't caused by sports, but by little things like walking on uneven surfaces of running downhill. My orhtopedist I had back then didn't treat me any serious, so I started to treat myself : dislocation, weeks of rest, put a bandage on and then "rehab". Not wise, but there wasn't a difference with my OSs treatment.
In my case it just got worse and worse over the years... i was 23 when i had a Lateral Release (which failed), 25 when I had a TTT. The TTT helped me and saved my life! But I feel like I missed my teenager years because I always had to be carefull not to dislocate my kneecap...

Try finding out WHY she is haveing the dislocations. Is her kneecap misaligned? Is it tilted? Of course you have to put off surgery untill her growth plates are closed, that is sure!
Is she having PT? PT can help a lot to find muscle balance back and correct tracking.
But I wouldn't wait untill she is grown out of it, from my own experience...

Good luck!
Bilat patellar malalignment/PFdysplasia
00/06/83 L wrist #
11/12/00 L knee LR + chondroplasty
21/08/02 L knee TTT
02/03/04 L knee stretched PCL
11/09/07 L ankle dislocation/medial avulsion #
25/05/09 L ankle medial avulsion # AGAIN!
05/06/13 R ankle dislocation

Offline Kai

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #4 on: July 09, 2006, 05:59:25 PM »
I also had repeated knee dislocations as a youngster, however, I did grow out of it.  I remain hyperflexible, but without the bad symptoms...  As a youngster, I had chronic pain and was even hospitalized once.  I never did get a diagnosis.
Good luck to you....
ACLR - (patellar BTB autograft) left knee - May 31, 2006
Partial Lateral Meniscectomy right knee Feb 20, 2008
Partial Lateral Meniscectomy right knee Aug 11, 2008

Offline tablpa

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #5 on: July 09, 2006, 09:10:52 PM »
Thanks for the comments received so far. 

To answer a few of the questions asked, she has had PT and taping (the PT tried to show me how, but I have not yet mastered this; she tells me it doesn't feel the same when I do it), has been using a Breg PTO brace since the second dislocation and uses it for activity.  Also wears a less substantial brace on the other asymptomatic knee and on the bad one for normal daily activity.

I am pleased to see that there may be hope for the second opinion not to be as bad as the first in making her become completely inactive until the growth plates have closed, even if the second opinion may still be the TTT. 

I just really hate to jump right into this dramatic of a surgery at her age.  So many people end up with many, many surgeries after the first. 

I am still welcoming comments and personal experiences of other "still growing" teens with similar experiences.

Thanks,
Becky

Offline Amanda82032

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #6 on: July 09, 2006, 11:39:14 PM »
Becky,

I understand your concern, because this is a big thing. The TTT is a big surgery, & if it isn't needed right away, it shouldn't be rushed into. I've heard from my OS that it shouldn't be disturbed if she is still growing. But also, usually people who have TTTs have them because their body allignments are different than others. There could also be a different less evasive solution to your daughters problem. I have similar problems & I used to play basketball until my knees stopped me from it. I know that no doctor stopped me from playing sports on a competitive basis , but I know it wasn't for my good. I think your daughter should take it easy because irreversible damage can occur. I would just be a little more cautious.

Keep us updated & good luck!!
-Amanda
18yo
Jan. 04=LR=R
Mar. 04=VMO Adv=R
Jul. 04=VMO Adv=L
Jan. 05=Chondroplasty=R
Jul. 05=TTT=R
Nov. 05=TTT=L
Jan. 06=Goodbye staple=R
Jul. 06=Patella ligament recon&shortened patellar tendon=R
Dec. 06=Goodbye staple=L
May 07=diagnosed w/EDS
Jul. 07=MPFL recon=R&L

Offline Kelsey

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #7 on: July 10, 2006, 03:00:11 AM »
Becky,
I can relate to your daughter alll to well. Im 15 years old right now..and have been going through the exact same thing she is for about 4-5 years now.

I had my first dislocation when i was 11 years old and since then have had 8 major or "bad" dislocations. But instead of one knee, its both of mine.  In between that ive had tons and tons of subluxations and minor dislocations. As well as your daughter..im extremely active..ive always played sports all season round, never taking a break..and on top of that i run constantly.

My doctors told me by the time i stopped growing i would grow out of the condition. None of the orthopedic doctors were much of a help..telling me the same thing. I tried evvverything, I also had several MRI's and all came back the same. Signs of a dislocation knee with serious bone bruising. I did physical therapy forrrevver, i mean enndless PT. I tried every type of bracing possible. Still the orthopedic dcts. didnt seem to think it was anything not normal..so as i kept having dislocations i started doing the same routine after every disloation. Crutches, immoblizer, ice, ibprofen and no sporttts for at least a while.  I was also told to stop playing some many sports..but i didnt. For me it was just a single movement and my knee would pop out, it didnt really matter if i as playing a sport or not.

I just had a dislocation about 6 weeks ago..and my knee is still not back to "normal." It's gotten to the point where i cant even walk without feeling like my knees are going to pop out of place..and sometimes thats all it takes.
So this time we went back to an OS demanding an answer..and they suggested surgery. My OS told me after two serious dislocations the knee usually keeps dislocating. He suggested either a Laterall Release with a Medial Plication or a TTT. Im going back to get a second opinon on tuesday.

This is the absolute last option for me too..just like your daughter, i dont look forward to not being able to play any sports. My advice to you would be to try every other single option before surgery..including finding another OS,differnt types of bracing and a lottt of PTAlso because shes still growing, some OS's prefer to do a laterall release sometimes with a medial reefing/plication, this isnt as serious as a TTT. Getting a second opinion woukf probably be helpful, im not an OS..but if shes only had two knee dislocations so far is it time for surgery all ready?

Im sorry this is so long haha, im just in the exxact same situation as her, just add a few more dislocations haha. I hope this helps a little..good luck with everything!!

kelsey
15 yrs. old
tons of dislocations and subluxations on both knees
TTT/LR/medial reefing on left knee- August 29, 2006
TTT/LR/medial reefing on right knee- February 13, 2007

Offline mhsflute07

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #8 on: July 16, 2006, 03:51:39 AM »
Becky,

I, too, can relate to your daughter. When I was 11 my kneecaps started dislocating. It wasn't until I was 16 (17 now) that an OS would tough my knees surgically. By the time I had my TTTs done, I had 5 major dislocations (3 on one knee, and two on the other). During the years prior to having the TTTs, I was told to "simply" stop all activities and lead a sedentary lifestyle. I ignored the advice and continued playing many sports and just wore my knee braces for any and all activity.

I think it's good that you are getting a 2nd opinion. Hopefully it will give you an opportunity to ask more questions and gain another doctor's perspective. Personally, I don't really think that it is absolutely necessary to restrict your daughter's activities so much, but I'm not a doctor.

As for when it's "time" for surgery, nobody here can say for sure. Your daughter will "know." For me, it was when my knees were impacting my daily life in such a way that I was willing to give up everything to recover from the TTTs.

Good luck!!

~Erin~
June 2, 2005 TTT/LR  R.
July 26, 2005 TTT/LR  L.
June 6, 2006 Microfracture R.
June 5, 2007 Microfracture & Screw Removal R.
March 12, 2009 Scope and ACI Biopsy R.
May 12, 2009 TTT, Trochleoplasty R.
December 15, 2009 ACI (patella) & bilateral hardware removal
December 21, 2010 LOA and LR

Offline lissamrie1

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #9 on: July 17, 2006, 09:03:39 AM »
Hi to you and to all the others who read this! remember me, I am RPC(ryan)'s mom. If you recall, he was injured playing basketball june 2004. His left patella dislocated and he began the most challenging time of his short life, both physically and emotionally. Please refer back to September 7th 2005 for his TTT post op report which he did himself to share his experience BUT if you would like to speak to me please feel free to E-mail me directly    [email protected] I hope that we can help you through this acceptance period, it is a difficult time and I cannot help but hear the words we said @ the time that our barely 14 y/o son was told he had a serious knee  problem and his athletic future was in question at least for the time being. On the bright side, he has had three surgeries, the last being the TTT in sept. 2005 and he is now finally playing basketball again. He is playing summer league with the varsity team and the smile on his face, despite his frustration is worth every penny and countless hours of time he has required from us over the past two years.It is NOT 3-4 months, i will be honest to tell you that. There is so much recovery time required following this injury/surgery. Ryan has worked his body back and has so much to be proud of but it was a long long road. We have learned so much about life, love and perseverence as a family. I don't know where you are but we have an amazing Dr. in connecticut(Dr. Fulkerson). Please keep in mind that each dislocation causes damage underneath that is not worth risking. All the best to you and your child and if you or she would like to talk to Ryan or myself please contact us. He is very understanding and sensitive to this issue as it is practiclly all he knows!!!! By the way, he is looking to become a physical therapist as a result of his wonderful  interactions. Good luck to you.

                     Lissa

Offline tablpa

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #10 on: July 17, 2006, 05:21:12 PM »
Lissa,

Thanks for your comments.  Just a couple of questions right off.  What were the other surgeries that Ryan had before the TTT? and why?  Was he at full bone growth for the TTT or was that an issue with your OS?

We see the OS for a second opinion today.  My daughter is a very difficult time for her as we live in a small town and she is fairly good at sports and as an incoming freshmen has the opportunity to play at least JV and possibly a little varsity on some very good teams.  In other words this is what she has been waiting for and working toward and now this. 

Of course her overall knee health is uppermost, but also having read a lot on this site, so many kids seem to have sooo many surgeries both before and after having a TTT.  I am hesitant to jump into this and have this just be the beginning of multiple surgeries.  Although I am also sure that a lot more people are on this site that have continuing problems.  If everything is ok, they probably aren't as obsessed with reading others' problems.

I will look forward to your answers and will certainly contact you again for more help and support.

Thanks,
Becky

Offline lissamrie1

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #11 on: July 17, 2006, 08:37:53 PM »
Hi. Ryan had arthoscopy to "clean up" the first dislocation mess. He rehabbed for 3-4 months and played in his first freshmen game and the following morning @ practice his knee dislocated. We had to wait till the swelling went down and he had a Lateral release with some medial refining(this surgery is open2 inch scar directly on knee cap.) The rehab was long and we conservatively waited 6 months to let him run and play. He was well for 5 months and subluxed playing in a pick up game @ a fair. The LR/medial refining DID NOT work. His knee never felt right even when he was playing that few months. Now, 10 months after his TTT he feels like himself, like his knee is strong and in the right place although the rest of his body is slow to recover from 2 years of ups and downs. As far as his growth plates are concerned, Dr. Fulkerson felt it was imperative that ryan have the TTT or his knee will suffer irreversible damage by subsequent dislocations. He is 6'1" now and he was one inch less @ the time of his surgery. What that means in terms of growth plates I don't know exactly. As you well know, these kids don't want to be able to walk or hike, they want to play competitive sports. Let us know if we can help!
                                                                                                                                Lissa

Offline tablpa

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #12 on: July 18, 2006, 02:01:05 AM »
We had our second opinion today and are very pleased.  This OS does not think my daughter needs surgery at this point, and even if she did, he would not recommend the TTT for her.  He stated that looking at the MRI that he knee is structurally perfect at this time.  She does have "loose" kneecaps and that is why she has dislocated twice. 

He feels she is doing the right things at this time with exercises and the brace and that hopefully this will strengthen the muscles and continue to protect the knee with the brace.  He was very pleasant and encouraging (very unlike the first OS).  We do not need to go back to see him unless she dislocates again. 

Thanks to everyone for their support and relating their experiences.  We will continue to hope and pray that the knee continues to do well.

Becky

Offline Silkncardcrafts

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #13 on: August 12, 2006, 01:40:53 PM »
Glad to hear you've got more help from the second OS.

Often the first dislocation/subluxation is more severe and after that comes out more easily.

I've had patella instability problems for about 10 years and have now been able to find what treatment really works.

When I first started seeing my orthopaedic surgeon he sent me off to physio for a year before he'd do anything. Luckily he was really conservative and understood my situation.

About 5 years ago I started seeing a sports physician which has really helped. I've started doing an individualised pilates program and has helped immensely. Think the best thing with patella instability is to keep as active as possible. Unfortunately I think a lot of general practitioners don't have a good understanding of the problem and just tell people to rest. However, that's probably the worst thing you can do.

Good luck with your daughter !
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline kneeharris

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Re: Looking for advice/feedback 14 year old, 2 dislocations; PLEASE HELP
« Reply #14 on: August 25, 2006, 11:05:59 AM »
Hello concerned mother-

I think you and my mom would have a lot in common. One quick question, which I may have missed along the way - are your daughter's dislocations total knee dislocations or patellar dislocations?

As for me, it's been patelllar dislocations. They began when I was 9 years old (I'm now 24). At age 9, they weren't so bad. Mostly sublexations (where the kneecaps slips over and back in again). I fractured my right kneecap after one dislocation and had an arthroscopy and lateral release when I was 12. After that, when the patella dislocated, it did so properly and I had to learn how to 'pop it back ito place' - a practice I've regrettably become very good at. I was also very sporty and continued to play basketball and volleyball, but as the number of dislocations increased, I decided it wasn't worth the risk. So I took up swimming instead and did this throughout highschool (generally a safer sport because it's non-contact). This was encouraging because it means I didn't have to completely give up sport, so perhaps in the first instance, your daughter could consider something similar?

After 15 years of constant dislocations, another arthroscopy in 2004 on the left knee because of a dislocation that dislodged cartilege (sp?), I'm currently at home recovering from a Roux-Gothwaite procedure on my left knee. It was originally recommended that I have a TTT as well, but I think this procedure is better. It's basically the same idea as a TTT but instead of manipulating bone, they simply split the tendon below the kneecap and cross it under itself, creating a kind of triangle. And, as my engineer husband likes to point out, a triangle is one of the most stable structures you can have.

My kneecaps are terrible. Every surgeon I have gone to see since I was 9 has balked at the scans and x-rays. My kneecaps began dislocating on an average of once a month. I have no femoral grooves, my patellas ride very high and sit laterally (that is, they aren't where they should be and are actually pulled toward the outside). Personally, I know how your daughter feels and I know the tears and the anxiety and the fears associated with having knees like these. However, more dislocations make the knees worse, so you have to consider whether that's a chance worth taking to continue playing sports. If taping, braces, etc work, that's fantastic, but they didn't for me and the experience of a dislocation while wearing a brace was worse than a normal dislocation.

I'm sorry if this is long and sounding negative. What I mean to say is: I've seen a lot of clueless surgeons before finding this one would did my latest op and he's fantastic and knows his stuff. I've been through the ringer because so many doctors have so many different ideas. I suggest getting lots of opinions and not rushing into anything - 14 is quite young for such an invasive procedure and regardless of how things may seem now, your daughter can and will have a happy teenage life even if she can't do everything she wants to be able to do. I also suggest using this fantastic tool available to you (as you seem to be doing) - the internet. Learn the lingo and read the doctors' reports. This Roux-Gothwait is a lot for a 24 year old, I can't imagine having to go through this 10 years ago. However, my surgeon is very confident that my left kneecap will no longer dislocate. He was the very first surgeon to tell me he could do that for me (lots of others gave me a 50% chance) and he was worth waiting for. I'm excited and elated and so glad I didn't let any of those other surgeons near my knee.

A lot of knee places are sports places. If your daughter's knee problems are entirely sports related, go there. However, if (as it sounds), they're more congenital, find an understanding doctor who will do more listening than telling. This has been a long 2 cents worth, but I do hope it helps. Feel free to email me with any questions...I hope you find good help and peace of mind soon.

- Angela















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