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Offline centaur532

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New here (and miserable!)
« on: October 21, 2005, 06:59:39 AM »
Hey there,
I just found this site and to be honest, I am thrilled bc I think my friends may be sick of hearing me talk about my constant pain.  I am 21-almost 22 female and I have chronic posterior knee pain.  I've had problems with my right knee since my junior year of high school (2000 I believe) when I got runner's knee.  Since then it's only gotten worse.  I had a scope done in 2003 to fix a potential medial meniscus tear, but nothing showed.  I haven't been able to run consistently in 4 years (which hurts as I love to run!) and I haven't trained consistently in taekwondo for 2 years, which hurts because I was on track for my black belt.

  So fast forward to this year-in February I moved into my dorm room on the fourth floor of the building.  I made a point to get an elevator key so I could prevent any problem from occurring.  I didn't want to take another semester off (the year I had surgery I wound up dropping out of school for a semester to get the surgery done!) but inevitably the knee pain returned.  It's always medial side pain.  At first I was diagnosed with pes anserine bursitis and given a cortisone shot.  This didn't do any good.  I then went into physical therapy for the next 2-3 months, twice a week.  They told me I had a severe lateral tilt of my right kneecap and began taping it, while I underwent ultrasound, icing, iontophoresis, electrical stimulation and of course strengthening exercises.  I did okay for awhile, even reaching the point where I was pain free with the tape, but my PTist wanted to start weening me off the tape.  After doing one set of exercises without it, the pain was back and just continued to deteriorate.  Soon I had shooting pains up the medial posterior thigh and the exercises just stopped.  I spent my entire time undergoing various anti-inflammatory treatments.  Eventually I was just discharged from PT, as they felt they couldn't do any more for me.  I talked with my PTist before I left, and we thought that a lateral release surgery might be the best option for me.  I spoke with my orthopedist about it and he referred me to the guy who would have done the surgery.  This doctor was not very enthused about performing the surgery, cautioning me that it might work, it might do nothing and it might make the problem worse.  He wanted me to wear orthotics.  I had those made, but they didn't help.  The last diagnosis I received before the semester ended was that I had tendinitis and that all I could do was stretch and ice it and get on with my life as there was nothing else to be done. 

In the meantime, my pain continued to get worse and worse.  I spent my entire summer mostly on crutches.  I found myself a new orthopedic surgeon (one of the best in Boston) and I had an MRI and a bone scan done which didn't reveal any problems with the knee.  He referred me to a pain clinic where I had a trigger point injection done and was prescribed a TENS unit.  Neither did any good.  So I'm still in chronic, near agonizing pain all the time.  It hurts to walk, it really hurts to sit, it hurts to stand, it basically hurts no matter what.  I am so frustrated because nothing has worked and I still have no diagnosis, just a lot of swelling and tenderness.  I'm taking hardcore anti-inflammatories, but they're not really touching it (Diflunisal, 500mg 2-3x a day).  I had to wear heels for 20 minutes 2 weeks ago and that led to a night of excruciating pain.  I almost never cry, and that made me shed tears.  I'm starting to think I have a semimembranosus muscle/tendon problem and that my doctor did not palpate deep enough on the exam to pinpoint the problem, so I am going back next week to have him take another look.  At this point I'm so desperate, and the noninvasive procedures have both revealed and done nothing for me, that I'm willing to undergo exploratory surgery to get to the bottom of it. 

I apologize for being so longwinded, but I needed to get that out.  I'm just so happy to have found this place so I can be surrounded by people who understand what I'm going through.  It's so tough to have your entire life completely disrupted (no work, almost no school-dropped 3 classes, no swimming, no running, no martial arts), and I have broken down a few times because I've been so miserable and frustrated.  Sometimes I wish I had just torn my ACL or meniscus or something just so it would be easily diagnosed and fixable.  I'm awake at 2am and in a lot of pain right now.  I've just iced my knee and I'm wondering how I'm going to sleep tonight. 
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline John1

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Re: New here (and miserable!)
« Reply #1 on: October 21, 2005, 07:55:58 AM »
Welcome! You've certainly come to the right place to vent :) I can't help you, but others may have some good advice. --John
4/12/05 Arthroscopy: plica removal and medial femoral condyle microfracture (2 cm^2)
11/9/05 Arthroscopy: complete removal of plica, removal of scar tissue on fat pad behind patella tendon and on medial side.

Offline Natalie.D

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Re: New here (and miserable!)
« Reply #2 on: October 21, 2005, 01:31:51 PM »
Hi,

So sorry things are tough for you right now.  You say that your PT said you had a severe patella tilt - has this been confirmed by the OS?  Is your OS a knee specialist?  If you do indeed have a patella tilt then a lateral release may well solve the problem as this is the surgery that is recommended for a patella tilt - as far as I'm aware the outcome is pretty good - I wonder why your OS is reluctant to do this surgery if all the conservative approaches have failed?   ???  I would make sure you know exactly why he isn't willing to do it and if you're not satisfied with the reasons he gives I would consider getting a 2nd opinion.  Good luck.

Natalie.
Dislocations since age 12
Trochlear Dysplasia
Maltracking
Hypermobile
LR/MR-failed
TTT, LR, MR L knee 95-Success
TTT, LR, MR R 02-Success
Screws out
Partial tear ACL
Severe end stage OA
4 Debridements
Partial Meniscectomy
Failed Microfracture
11mm Defect LFC
Bone Spurs, Kissing Lesions

Offline bikersmurf

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Re: New here (and miserable!)
« Reply #3 on: October 21, 2005, 02:10:36 PM »
Hello!
 I completely agree. It does sound like you are getting a run around from your Os. You can be very straight with him or ask of a refeeral. I had a problem with mine and he did not want to give me pain meds. I had an appointment yesterday and just laid it all out for him and told him if  he could not help me refer me to another doc. Thay don't like to hear that. I found out. I also reminded him of the patients rights on the wall and the one about them dedacaded to treating pain. Sometimes you need to give them a kick in the pants so to speak. I would do some research and go in and ask him alot of questions so he knows you mean buisness this time. Hope you have better luck
Bikersmurf.
Motorcycle accident(open patella shattered)
8-05 reconstruction surgery wires pins, crown and figure eight , FEb 06, had bad fall and damaged knee and hardware. May 5 06 op to remove hardware and repair tissue, quad and nerve damage. Recovering!!

Offline stgiles16

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Re: New here (and miserable!)
« Reply #4 on: October 21, 2005, 06:09:41 PM »
I'm sorry that I cant help you with your problems but you have come to the right place for help. There are tons of people here with all different kinds of experiences who may be able to help you. Welcome, I hope that someone will see this soon and help you.
In the mean time, stay strong. It will get better, you have to believe that.
and feel free to vent here anytime. we all understand how friends and relatives get tired of hearing about our problems. You wont find that here.

Good luck

welcome
missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012

Offline centaur532

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Re: New here (and miserable!)
« Reply #5 on: October 21, 2005, 06:20:33 PM »
Hi,

So sorry things are tough for you right now. You say that your PT said you had a severe patella tilt - has this been confirmed by the OS? Is your OS a knee specialist? If you do indeed have a patella tilt then a lateral release may well solve the problem as this is the surgery that is recommended for a patella tilt - as far as I'm aware the outcome is pretty good - I wonder why your OS is reluctant to do this surgery if all the conservative approaches have failed? ??? I would make sure you know exactly why he isn't willing to do it and if you're not satisfied with the reasons he gives I would consider getting a 2nd opinion. Good luck.

Natalie.

This was back in May after I spoke with my orthopedist treating me at school (I'm a college student).  My PTist said I had a severe tilt, and the tape was the only thing that worked, but even that stopped working for awhile.  Then I started getting the posterior pain which hasn't gone away.  Because my orthopedist was with my university he always referred outside to a different OS to do surgeries, and he happened to be there on the day of my appt so we met and he basically said he wouldn't do it.  So I went off and found myself a new OS in Boston (making sure I picked one of the best!) but he said he can't do anything as there is nothing obvious to fix. 
I made another appt to talk to him about possible semimembranosus tendon issues, but now I'm wondering if all the pain is caused by the tilt-my chiropractor told me that all the muscles on my lateral side were extremely tight and all the muscles on my medial side were extremely loose, which was why I was in so much pain on the medial side.  It would probably explain the runner's knee that started this all off.
What I want to know is how people in PT could pinpoint the tilt immediately just by looking at my knee, and my OS' can't...
any thoughts?
Thanks :)
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline centaur532

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Re: New here (and miserable!)
« Reply #6 on: October 21, 2005, 06:29:13 PM »
Hello!
 I completely agree. It does sound like you are getting a run around from your Os. You can be very straight with him or ask of a refeeral. I had a problem with mine and he did not want to give me pain meds. I had an appointment yesterday and just laid it all out for him and told him if he could not help me refer me to another doc. Thay don't like to hear that. I found out. I also reminded him of the patients rights on the wall and the one about them dedacaded to treating pain. Sometimes you need to give them a kick in the pants so to speak. I would do some research and go in and ask him alot of questions so he knows you mean buisness this time. Hope you have better luck
Bikersmurf.

My current won't give me pain meds either, even after I told him I take tylenol PM to sleep at night, so I've been acquiring them any way I can (my rheumatologist is a bit more sympathetic to my plight and gave me Tylenol 3).  Because I'm a nursing student, I've been checking in my anatomy book to figure out the exact location of my pain, and it is the semimembranosus.  For awhile he thought it might be neurological.  He told me nothing seems to make it worse so to try swimming or cycling.  Ha!  I'd like to see him try living in my shoes for one day and see what makes it worse.  Everything does.  Another thing is the lateral tilt of my patella.  Even just by looking at my own knees I can see that my right patella tilts when I bend my legs.  Now I'm starting to wonder if this all fits-the tilt is causing my semimembranosus to pull out of position because it's trying hard to keep it tracking properly and it's not so I have extreme pain instead.  Hmmm...this is all stuff I should definitely bring up to him.  I've also got to do some research now.
Thanks for making me think of all this.  I love this website already!  (Plus I'm a total medical nerd and with all my knee problems I find the knee joint fascinating so it just makes me happy all around!)
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline blackbeltgirl

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Re: New here (and miserable!)
« Reply #7 on: October 21, 2005, 08:38:30 PM »
Sorry you need us, but I'm glad you found us.  You may want to check out the 2 free classes on the main web page.  One is on the anatomy of the knee and different types of problems.  i think the other is on the best way to conduct an exploratory scope.  Those classes will a) give you something positive to do if you're awake at 2am with pain, and b) give you more understanding to ask smarter questions.  Dr. Gresalmer, in NYC, put together those glasses with the kneeguru, and he does respond to questions you ask in the online classroom.  That may be a great way for you to get the knowledge to press your OS.

Good luck!
ACI was supposed to be 2/21/06.  On 6/29/06 Insurance co said have another scope, and if it still looks good, they'll ok the ACI.
Microfracture Dec 7, 2004
   3cm x 6cm lesion, LFC; 3cm x 1cm lesion, trochlear groove; lateral tibial plateau lesion
2nd degree black belt, tae kwon do (had to stop)

Offline centaur532

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Re: New here (and miserable!)
« Reply #8 on: October 21, 2005, 10:22:50 PM »
Sorry you need us, but I'm glad you found us. You may want to check out the 2 free classes on the main web page. One is on the anatomy of the knee and different types of problems. i think the other is on the best way to conduct an exploratory scope. Those classes will a) give you something positive to do if you're awake at 2am with pain, and b) give you more understanding to ask smarter questions. Dr. Gresalmer, in NYC, put together those glasses with the kneeguru, and he does respond to questions you ask in the online classroom. That may be a great way for you to get the knowledge to press your OS.

Good luck!

Thanks for the advice.  Glad to see another TKDer here too :)  I've gone past the point of frustration when it comes to my tkd, I'm now at the point of resignation that I will not be going back anytime soon.  Still sucks though.  Nice to meet you :)
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline Heather M.

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Re: New here (and miserable!)
« Reply #9 on: October 22, 2005, 04:45:53 AM »
Scar tissue/Arthrofibrosis?  A lot of the symptoms sound veeeeerrrrry familiar.  Look up "Boston" and "Arthrofibrosis" and see if you can find the name of a doctor who specializes in this condition to be evaluated.  You really need to see a top tier surgeon who LOVES to take difficult and mysterious cases...if you can travel, I can give you the names of a couple of great doctors who would likely be able to give you a diagnosis.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
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Offline trish85

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Re: New here (and miserable!)
« Reply #10 on: October 22, 2005, 05:04:31 AM »
Hi
I'm sorry I really can't help you with whats going on but just hang in there. You are definetly in the right place to get support and vent.  You said you are seeing an OS in Boston I was just wondering who I am from boston and between me and my brother I think we have seen almost all of them.  I might end up in the same boat as you with school because I am going in for surgery onFriday and I have no clue how the recovery from that is going to be with taking a full class load.
Good Luck with eveyrthing
Trish
R LR 2/02
R TTT/LR 8/02
L LR 1/03
R hardware removal 7/03
L TTT/LR 8/03
L hardware removeal 6/04
L VMO realignment 6/05
L TTT/VMO revision 10/05
R VMO advancement 4/06
L hardware removed 7/06
R VMO recon 9/06
L VMO recon 7/07
L MPFL recon w/ hamstring autograft 3/14/08
EDS type 3

Offline centaur532

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Re: New here (and miserable!)
« Reply #11 on: October 22, 2005, 06:29:05 AM »
Scar tissue/Arthrofibrosis? A lot of the symptoms sound veeeeerrrrry familiar. Look up "Boston" and "Arthrofibrosis" and see if you can find the name of a doctor who specializes in this condition to be evaluated. You really need to see a top tier surgeon who LOVES to take difficult and mysterious cases...if you can travel, I can give you the names of a couple of great doctors who would likely be able to give you a diagnosis.
Hi there, I fully appreciate your input.  I googled the term arthrofibrosis, and I'm not sure it's me.  I don't have joint stiffness, and I've only undergone 1 arthroscopy and had no major trauma to the knee itself.  All the swelling is medial and the pain is almost completely localized to the semimembranosus muscle/tendon.  But it's one more possible diagnosis to cross off the list, so I will keep it in mind.
Which symptoms did you pick up on in my story?
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline centaur532

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Re: New here (and miserable!)
« Reply #12 on: October 22, 2005, 06:30:15 AM »
Hi
I'm sorry I really can't help you with whats going on but just hang in there. You are definetly in the right place to get support and vent. You said you are seeing an OS in Boston I was just wondering who I am from boston and between me and my brother I think we have seen almost all of them. I might end up in the same boat as you with school because I am going in for surgery onFriday and I have no clue how the recovery from that is going to be with taking a full class load.
Good Luck with eveyrthing
Trish

I'm currently seeing Dr. Glen Ross with Prosports Orthopedics.  Good luck with your surgery-where are you at school?  (I'm at UMASS Amherst) :-P
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.