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Author Topic: Recurrent dislocations/subluxes  (Read 2297 times)

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Offline tanyap

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Recurrent dislocations/subluxes
« on: July 11, 2007, 09:47:14 AM »
hi kjwilkin,

Have you already had a surgery?

How long have you been dislocating/subluxing (i never really know the difference, my PTs and OS seem to use the terms interchangeably)?

How often does it happen?

How do you cope?
Tanya
1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Silkncardcrafts

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Re: Recurrent dislocations/subluxes
« Reply #1 on: July 11, 2007, 12:53:05 PM »
Hi Tanya,

Yeah, to date I've had 4 operations on my left knee and two on my right. Am waiting to see my knee surgeon on the 1st of August to find out the next steps. Probably looking at more knee surgery for medial instability of my left patella. My lateral instability of my knees has been fixed and the medial instability of my right knee has been fixed, just trying to sort out the left knee now.

Unfortunately I've had my knee problems for over 12 years. It has taken a long time, but have a really good team helping me now including my knee surgeon, sports physician, knee physio, podiatrist and sports psychologist. My sports physician understands my problems well and assists my knee surgeon every fortnight which helps greatly. I used to see a GP but really had no idea how to manage my problems. My sports physician basically oversees my overall rehab and liaises with the other practitioners regularly. Fortunately they all work out of the same clinic. Have you thought about seeing a sports physician ? Does you OS specialise in knees ? It's really important that both your physio and surgeon specialise in knees, particularly patella problems.

A subluxation is where the kneecap partially comes out of its place, but a dislocation is when it fully comes out. I've only had a full dislocation a couple of times and had to push it back in place, but had countless times when my kneecap has subluxated.

Mine mainly happens when I'm in bed or getting in and out of bed. It has also happened when I've been sitting in a chair at work when I've swivelled my chair to talk to a colleague. My OS finds that very hard to understand. At the moment I'm wearing a zimmer splint at night to reduce the number of times it comes out.

The way I cope is by keeping active, which at the moment includes going to the gym every second day and the hydro pool every other day. Normally I also do clinical pilates, but am currently recovering from shoulder surgery. Hope to start that back soon. I also keep busy doing other non-exercise related hobbies, such as silk painting and card making. In addition to those things I also write in a diary and regularly meet with a sports psychologist. She has really helped me a lot. What do you find helps ?

What is your situation and where are you at in your recovery ?  :)

« Last Edit: July 11, 2007, 12:55:33 PM by kjwilkin »
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 tanyap

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Re: Recurrent dislocations/subluxes
« Reply #2 on: July 11, 2007, 02:41:40 PM »
hi,
wow - you really have been through the mill with your knees havent you???

my knee problems started at 12 years of age (Im 33 now). I had a dislocation in school, I didnt know what had happened. When I saw doctors they didnt know what had happened either because it was back in place and I just had a hugely swollen knee!!
That continued for 11 dislocations (bout a year or so) - each time the kneecap returned to place of its own accord. I never had to have it manually reduced. Then I had a modified Hauser procedure (TTT, lateral release, medial plication, some clean up work on cartilage also). It took around 2 years to recover from that surgery. I was never able to run again. In the third year after the surgery Id started getting back to normal activities when I was hill walking and something 'snapped' in my knee. I didnt have a dislocation but it swelled up etc... A little after that I drunkenly jumped off a stage and I had a huge dislocation. The surgeon says I probably ripped up a lot of repair work they had done.

After the stage jump I dislocated a 2 or 3 or 4 times a year for a long time. Always laterally. It became much less severe but instead of my kneecap returning to its usual position by itself I had to manually reduce it myself. That was pretty much the pattern all of my 20s. I was just used to it. Various OS's said not to do contact sports, not to run, not to do anything 'risky' but overall Id a normal life.

I didnt notice but I was compensating like mad and over time I lost lots of muscle on my right upper leg. I had some personal/family issues going on and although I became aware that my leg was getting weaker - there was no pain and I was dislocating more than usual but I just did not get around to addressing it for some time.
Eventually I had a bad dislocation that robbed me of my stability and my knee swelled up hugely, I was on crutches for a couple of months and I finally went to a physio and made an appointment with an OS.
I saw the OS who is considered to be the best knee man in this country (Ireland). He took one look and said - go build muscle. There is nothing mechanical wrong but you have no muscular support.

SO - I attented weekly, then biweekly, then monthly physio appointments - I did all my exercises at home. And for the next 2 years I just kept dislocating. I counted 150 dislocations in 2 years.
There has been improvement. In the last year Ive had around 20 dislocations. The previous year was the other 130!

I did some research and got the name of the surgeon who had done the original surgery 19 years ago. I went to see him a month ago.
He said the same as the last guy. No mechanical problem, muscles too weak. He was not happy with my physio that Id been seeing because although they had helped address my my glutes, my hamstring, and my quads to some degree, they completely ignored VMO and in his opinion all my problems are caused by weak quads and specifically weak VMO.
So he sent me to new 'super' physio :)

Ive been on my new exercise program for just over a month. I can visibly see some improvement in how my leg looks - and i 'feels' a little better but its quite early days of new physio to see a big improvement.

The thing that worries me most is that my new physio is absolutely positive i DO need a surgery (as was my last one) but the surgeons over the years and especially in the last 2 years all say no more surgery!!

So im battling away with physio hoping ill get my stability back.
the worst thing is i 'feel' unstable all of the time. And have done since my bad dislocation 2 years ago.

Im very interested to hear your story. I hope when you have your appointment on august 1st that you have some good news - its always good to at least know whats to happen next!!

i see my OS on august 9th. if true to form he will say 'keep up physio' - he said that if i get my right leg as strong as my left and there is still a mechanical problem that he will operate. but not until im up to full strength. and he also bet me that if i do get it to full strength that he wont need to operate. he doesnt believe there is a mechanical problem worth operating for. yes he agrees the tendency to dislocate is there but if i had full strength he reckons i could go back to having an ordinary life - still no running or contact sports but its always been that way.

mind you - he hasnt seen my MRI results yet - I only had that done 2 weeks ago and will get the results when I see him. the x-rays dont look very encouraging :)

thanks for all the info you gave me. i might start a diary. That sounds like a good idea.
I try to just live as normal a life as possible but Im relatively slow moving and my friends are all used to that.
I read quite a lot and my boyfriend and I like to walk to the local park (slowly:) and feed the ducks.

I just got my bike fixed - its been in a friends shed for 4 or 5 years so Im hoping to start using it a little.

I think sometimes its the frustration of not being able to just have freedom of movement that gets to me. I wish i could just move as quick as i wanted or feel safe if i had to hurry. I find it very difficult to be unstable so often.
although i no longer feel too unstable in small environments like my apartment so thats an improvement.
my physio says im trying to repair probably 10 years of muscle atrophy so i guess its a slow process.........
1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Silkncardcrafts

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Re: Recurrent dislocations/subluxes
« Reply #3 on: July 12, 2007, 06:22:53 AM »
Hi Tanya,

I was really interested to hear your story.

These days I think knee surgeons are very conservative for patients that have had long standing problems and also had failed surgery. I think in one part your surgeon is right in saying that you need to build your quads up, particularly after a long period of time where your muscles have wasted. However, there comes a point when enough is enough and you need to do something.

My knee surgeon has said that my muscles are quite strong, but physio won't help. So, will be interesting to see what he says.

Will keep you posted ! ;)
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 tanyap

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Re: Recurrent dislocations/subluxes
« Reply #4 on: July 12, 2007, 09:17:56 AM »
Hi,
yes I agree with you - I also had my OS tell me that he would be extremely to do another surgery given my history because it could just start dislocating again after surgery - which would mean id been through a lot of pain and suffering for no gain!!
Also that the tendency to dislocate decreases with age as the soft tissues harden (not a great prospect but a true one!)

Im more than willing to go the distance and get my quad strength up to match my good leg - after that we'll see what happens. I have always found that I can get the bad leg as strong as the good one but somehow the muscles always waste away unless I keep doing something to keep them strong (physio or cyclying or some exercise that ensures i use my legs). I wonder is my brain ALWAYS telling me not to use my bad leg?? Or is it that there has been an imbalance created from the TTT - so unless I always address that imbalance I lose VMO?

Ill be very interested to hear what your OS has to say to you - if your muscles are good then its clearly mechanical - are medial dislocations harder to fix than lateral?
Tanya


1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Silkncardcrafts

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Re: Recurrent dislocations/subluxes
« Reply #5 on: July 13, 2007, 06:12:16 AM »
Hi Tanya,

I'm exactly the same, I need to continually keep my VMO active and strong. Otherwise it goes pear shaped.

Medial instability is a bugger to fix as it's so rare and there's not much other than surgery that can fix it. Sent my OS a list of questions I want answered at my next appointment so will be interesting to see what he says.

I've no doubt that the TTT would be made your muscles weaker. My left side is much weaker compared to the right, probably because I've had double the operations on it.

In relation to your OS saying it could still dislocate post-operatively that may be true, but I think it's worth taking that risk. My knee couldn't be much worse than it is now.

Have a good weekend !! :D
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 tanyap

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Re: Recurrent dislocations/subluxes
« Reply #6 on: July 14, 2007, 08:14:03 PM »
hi kjwilkin,

wow - i always wondered if that was a 'normal' thing to happen to VMO for people who had surgery - i do wish they had told me to keep it big and strong after they operated!!! then again perhaps the did but i was only a kid, im sure i didnt listen to anything i was told at the time.

thats great that you sent your questions in to your OS - give him a chance to read them before youre sitting in front of him.

my OS is saying he doesnt think my knee was ever brought back to full function after surgery - i felt like saying to him that thats really the hospitals fault for discharging me from physio and telling me to get on with my life!!!
im most confused by the fact that my physio is convinced i DO need surgery but the OS is convinced I dont!!! i do wish they would communicate properly with each other!!! i have asked her (the physio)  to tell him what she has said to me before i see him again.

on the plus side i had a small breakthrough today, i tried out my bike, havent cycled it in 7 years, i was so nervous, though tid wobble everywhere and maybe fall off. but i just took off like the wind!! it was great!!
so my legs tired after a couple of minutes, but i can work on that - i didnt feel unstable and it didnt hurt my knee - yeeaa!!
1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline kimmyxs

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Re: Recurrent dislocations/subluxes
« Reply #7 on: July 15, 2007, 03:33:09 AM »
I hate to be a bother, but for me, the dislocations never slowed down as I aged, in fact they increased.  Most of the time I was able to reduce them myself, but I have had two that required reduction.  Unlike most everyone here, my quad are in great shape even though I am almost 49.  A year ago the patella dislocated and ended up on the back side of the joint.  In the process my quad reactted and broke the patella vertically.  I thought that the dislocations were bad, but....   I had a VMO advancement in January in conjunciton with a LR when the screws were removed from the patella (6 months after the original injuty).  My OS orginally intended to only do a LR, but he could not get the patella to stay in place so he opted to do a the advancement   He chose not to do a TTT because of the damage I already had in there.   At 10 weeks, I was released from both my PT and by my OS.  They both said that I have great muscles because this was the fastest they have ever seen anyone (young or old) recover from a VMO advancement.  The hardest of the quad to keep strong.  Today life is good, although the patella tends to sublux a bit lately.  My main issue now is the arthritis that has been caused by years almost 20 of patella instability.

Keeping those muscles toned is important, especially the VMO!  It usually helps, but not always.
6/03/89 - First Knee Cap Disclocation
7/05/89 - Returned to work
6/17/06 - Tramatic Knee Cap Dislocation and Vertical Fractured Patella
6/28/06 - ORIF - Screws - no wires
8/24/06 - Ditched the brace - start PT
9/20/06 - First spinning
1/15/07 - screw removal, LR , VMO Advanc  & patella cleanupl

Offline Silkncardcrafts

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Re: Recurrent dislocations/subluxes
« Reply #8 on: July 15, 2007, 03:42:48 AM »
Hi Tanya,

It's interesting that your knee surgeon doesn't think that your knee was brought back to full function after the surgery. That's part of the problem sometimes. Make sure that your physio communicates with your surgeon. It makes a big difference. I also see a good sports physician that works closely with my knee surgeon and does make a big difference. Have you thought about going to see a sports physician/doctor ? Am actually going to ask my sports physician to speak to my knee surgeon about having some more specific scans done.

That's fantastic about the cycling ! You just need to build it up gradually. Can't wait until I can get back onto my bike again. Just have to wait until my shoulder is further down the track with rehab. Let us know how you progress with the cycling ! 8)

Kimmyxs, my instability has become worse as I get older too. As you get older your ligaments are meant to tighten up, but still waiting for that to happen. I had shoulder surgery in early May and my shoulder surgeon said that I will have to do regularly exercises for it until I'm 40 !!! Fortunately my lateral instability has been fixed, but not the medial instability of my left patella. Just waiting to finding out what will be the next step !
« Last Edit: July 15, 2007, 03:46:49 AM by kjwilkin »
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 tanyap

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Re: Recurrent dislocations/subluxes
« Reply #9 on: July 16, 2007, 10:13:15 AM »
Hi,

kimmyxs - i cant believe your patella broke vertically!!! you poor thing - just goes to show you how strong your muscles really are!!! to break bone!!!
Well Ive found my dislocations/subluxes are more frequent as I get older actually - although my OS says its cos my muscles have been weakening since i got older!! my lifestyle changed, i used to work on my feet through college and after i cycled to my desk job for the first 3 years. makes sense really, i started driving 7 years ago and my knee started playing up more and more from 5 years ago or so.

kjwilkin,
yes i was never able to run again after surgery - nor was i ever able to play contact sports again - I was told not to.
now the OS says - why didnt you run again? im like - i was told not to..... its confusing!!
yeah im excited about using my bike again - its such a faithful old machine too - i had it stored in a friends shed for the past 4 years and it was all cobwebby and dusty when i dug it out - all shiny again now!
whats wrong with your shoulder?



1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Silkncardcrafts

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Re: Recurrent dislocations/subluxes
« Reply #10 on: July 17, 2007, 05:00:38 AM »
Hi Tanya,

I have a similar problem with my shoulder, loose ligaments and very unstable before the operation. It's now much more stable and much tighter now. Rehab is going well and gradually getting the strength back. My pain is now under control which is good.

Today I saw my sports physician and have a clearer idea on where things are heading. He spoke to my OS yesterday and apparently I don't need a bony realignment, so my OS has to decide whether a soft tissue operation is going to help. My OS isn't keen to operate and neither is my sports physician keen about me having another operation. I'm not either but just want my knee fixed and get back to normal. My knee physio was talking about other options so my sports physician is going to talk to my physio about them. So, hopefully I'll know more soon.

Can't wait to get back onto my bike soon. Hopefully once my shoulder has recovered more I can get onto the bike.

Catch you later !  :D
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 Silkncardcrafts

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Re: Recurrent dislocations/subluxes
« Reply #11 on: July 17, 2007, 08:47:05 AM »
Hi Tanya,

How's your physio going ?

I'm feeling really relieved. Got a call from my surgeon's rooms to say he's had a cancellation tomorrow at 4:50pm. It is such a relief. The last month has been really tough in many ways. We had a scare with my Dad, but turned out to be a viral infection. He had a heart attach last year so it's always a worry when he has a scare like that. Also been applying for jobs and trying to do my shoulder rehab. My knee has got worse and has really knocked my confidence around.

Today I saw my sports physician and was very helpful. He spoke to my knee surgeon yesterday and said that I don't need a bony realignment, which is a good thing. However, my only options are soft tissue procedures but isn't keen on operating again. If he suggests more surgery it will be the last time I do as it is so mentally draining and I can't keep going through this much longer.

Will keep you posted on what my knee surgeon says.  ;)
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 tanyap

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Re: Recurrent dislocations/subluxes
« Reply #12 on: July 17, 2007, 10:51:53 AM »
hi kjwilkin,
what did your knee surgeon say?? thats great you got a cancellation!
Im like you in that Id rather avoid surgery if at all possible - it takes so much out of you to have a surgery and then the healing, rehab - its difficult. A bony realignment would be a very tough operation - thank god you dont need that.
Im sorry youve had such a difficult month - these things always seem to come together dont they?

Thats great that your shoulder is behaving itself more now - you poor thing, youre joints seem to want to live their own lives!!

I had good news yesterday at the physio - they strapped me into the isokinetic testing machine and my pure strength has improved 103% since the last test!! so ive more than doubled my quad strength!! My knee has been feeling a lot more stable the past couple of weeks - I still feel like I dont have much speed in it but it doesnt feel like its going to pop out with every step these days if I take things at a reasonable pace.
The test shows the comparison between my bad and good leg and then a comparison of improvement in my bad one. My good leg had improved somewhat in strength too - from the wall slides I guess. There is still a deficit but its not what it once was. The last time I had the test my bad leg had a 44% deficit against my good one.
Their photocopier wasnt working so they didnt give me the printout - the only figure I can remember is the 103% increase in pure strength!!
So Ive to continue my exercise program for the next 2 weeks and then they will test me again - and send all results to my OS, for my appointment with him on the 9th August.
The physio sid that Ive to speak to my OS about what kind of functional outcome I should be looking at - she said we can continue with conservative treatment but if I expect to be running and skiing that might not be a realistic outcome - so to ask OS what he thinks is possible and we can work towards that.

I hope you get on well with your appointment today!!!
Tanya



1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Silkncardcrafts

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Re: Recurrent dislocations/subluxes
« Reply #13 on: July 18, 2007, 10:07:10 AM »
Hi Tanya,

I was so pleased to hear about the progress you've made with your knee strengthening. That's great !!!

Today I saw my OS and the news isn't good !!! My knee surgeon doesn't think he can do anymore. Am absolutely shattered as I was really hoping he could do something. Was also pretty annoyed that he thought my questions were a bit much. I have the right to know what's going on with my knee. I've done a lot of research and want the best for my knee. My job is to analyse and research things so it's just natural to want to know as much as I asked. Before I sent the questions to him I checked them with my sports psychologist and she thought they were ok.

Am soooooo upset right now. Am probably going to get a second opinion. I am seeing my sports physician on Monday so will be interesting to know what he says. I will write more about what my OS said when I am not so upset.

Keep up the good work in your rehab !!!  :D
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 tanyap

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Re: Recurrent dislocations/subluxes
« Reply #14 on: July 18, 2007, 10:21:15 AM »
Hi kjwilkin,
oh Im so sorry to hear that. Absolutely get a second opinion - he is just one surgeon! Perhaps his skills have reached their limit and he cant do anymore for you because he simply has come to the end of his road. but that doesnt mean youre at the end of your road - you can get a second, third, fourth opinion if you want to.
Im surprised he thought your questions were a bit much - of course you are entitled to know every minute detail - its your body!!! Then again surgeons can have very bad interpersonal skills - their skills are in dealing with unconscious people - so perhaps he just spoke out of turn, take no notice, you have every right to ask whatever questions you want.
Definitely speak to your sports physician - he might have some new ideas for you - and maybe can refer you onto an OS who will be able to do more for you.
Youre not done yet, youre just done with this OS. I just dont believe that there is nothing more can be done - he just isnt able to do it.
Do something nice for yourself today to take your mind off upsetting news. And just remember that there IS a way forward - you just gotta find it.
xx
Tanya
1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app















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