Medial Subluxation and me.... My never ending Saga.. UPDATE

[sandmanusd]

Hello all,

I just found this forum and I am ever so grateful that I did.  It seems I'm not the only person in the world with my problem.

Long Story Short:

I recieved a lateral release in Dec of 2007 along with a repair of my torn meniscus in my right knee.

Several months later I was in PT and was doing an exercise when I felt a very painfull pop in my knee, followed by a constant "clunking" of my kneecap every time I bent my knee.

I went back to my same OS and he was perplexed and opted to go in again (after a few months of quad strenghtening) and see if there was some cleaning up to do, or maybe a fragment of torn meniscus he missed.  He found nothing on my second surgery.

I went to PT for 6 more months to strengthen my quads because he thought it was a strength issue that was not allowing my kneecap to track properly.

Another 3 months of PT after that and my legs were the strongest they had been in my entire life, but still the tracking problem.  Finally time to seek another opinion (And this was at the reccomendation of my surgeon too)

Saw another OS and he immediately believed it to be medial subluxation caused by an overly aggressive or failed Lateral release by my first OS.

I am currently in the stages of getting a Dynamic Tracking MRI done of my kneecap to see if this is indeed the problem, but have since started wearing a "U" brace skewed off to the lateral side to pull my kneecap laterally to keep it tracking better.  Which has helped tremendously ( I am currently looking at some of the options for braces that do this on their own, but had to improvise because of the pain I have been in)

My fears seem to have been realized reading these forums that this is a complex problem that is not easily fixed.  My current (second) OS has used words like "Theoretically" to describe how he can fix my knee!  He seems to know what the problem may be and has definately "read" ways to fix it, but that just ISNT good enough.  If he is going to try to surgically fix my problem I want someone that has done this before.

I desperately want a Doctor that has done many of these procedures, whatever I might need done to fix this.  I have gone to PT for 2 years now and that isnt working.

I am obviously willing and able to travel to any part of the Country....

I live in Central California, so i dont know if anyone on these forums could help, but I am trying to find someone that knows my problem like the back of their hand and can fix me good as new.  My job depends on it, as I have been on restricted duty for over a year now and if I dont get this fixed, I face retirement at the age of 31... which isn't an option at this point in my life.

Anyone out there know where I can go or has had my problem and can reccomend a fix?

[Silkncardcrafts]

Hi there,

I feel for you. This problem can be fixed, but as you say is difficult to fix.

Unfortunately I suffered the same fate from my lateral releases on both knees. I successfully had a trochleoplasty on my left knee last year and has worked wonders. It no longer comes out medially. I had the additional problem that it also came out laterally. I am waiting to see my OS in just over a week to discuss having the right knee done.

Just make sure that the OS you see specialises in patella problems.

What surgery is your OS proposing at this stage ?

[sandmanusd]

Hi there,

I feel for you. This problem can be fixed, but as you say is difficult to fix.

Unfortunately I suffered the same fate from my lateral releases on both knees. I successfully had a trochleoplasty on my left knee last year and has worked wonders. It no longer comes out medially. I had the additional problem that it also came out laterally. I am waiting to see my OS in just over a week to discuss having the right knee done.

Just make sure that the OS you see specialises in patella problems.

What surgery is your OS proposing at this stage ?

Well, since he has never done any of them, they were all "theoretically".  But he said, based on what the MRI images say, and what he sees.  He said he could:
1.) Reattach the the tendon, essentially doing a lateral "un-release"
2.) Do a small medial release to correct the overly agressive lateral release
3.) Not quite sure, it may have been trochleoplasty, but said it was the most intrusive with the longest potential recovery period.  I think i was a bit in shock at him saying ""theoretically" so many times that I cant remember exacly what he described....  at that point I think i was distracted by the fact I wanted to see a Doctor who had actually performed the procedures that he was talking about.

But I am getting the Dynamic MRI done on Monday so hopefully then I will be able to get a more accurate picture of what is going on and what my Doc says he wants to do, and if I actually trust him to do it.   At this point I am leaning more toward finding someone who has done many procedures to correct my problem and there is no guess work involved.

Did they suggest any other methods for you? or was it just the trochleoplasty and thats it?  I'm just wondering if anyone has had a medial release done to correct the lateral release, or has had it reattached to correct the problem.

That being said, I am looking to get a better brace then what I have currently and found a few that I was interested in, but dont know if they will push my kneecap medially to lateraly or the wrong way.  Or if they will work well at all...

http://supports4less.com/protec/kneebraces/j-lat-kneesupport.htm



and this one:

http://supports4less.com/breg/kneebraces/breg-pto-kneebrace.htm



Anyone with my problem have any luck with either of these?  I know I might get surgery one of these days, but until then I want to be as pain free as possible.

Thanks again

[WorkinWings]

Oh!! The clunk...
I'm sorry to say, that sounds all too familiar. That was a very life-changing moment.
I went through the exact same thing you describe, and it then took many months and lots of research to find the right people to help me with this problem.   
But you...You are in luck!! I've done all the leg work for you  and you happen to be perfectly located...
I will send you a PM with the name of the two docs you need to contact ASAP.
All the best, and talk in a bit.

[sandmanusd]

Oh!! The clunk...
I'm sorry to say, that sounds all too familiar. That was a very life-changing moment.
I went through the exact same thing you describe, and it then took many months and lots of research to find the right people to help me with this problem.   
But you...You are in luck!! I've done all the leg work for you  and you happen to be perfectly located...
I will send you a PM with the name of the two docs you need to contact ASAP.
All the best, and talk in a bit.

Thank you very much!  I appreciate any help you can give...  I just hope there is a light at the end of the tunnel of pain I have!

[sailchic]

I had a similar problem.  Unfortunately for me mine came after two failed major surgeries.  The first was the LR combined with medial reefing -- not a good idea to make the knee cap more mobile than it already was in my hypermobile joint and then actually pull it medially.  The second was an incorrectly positioned TTT and even more medial reefing.

I finally found someone more more expertise on patellar femoral issues who decided to reconstruct what was cut during the lateral release.  It solved the problem (a little too much -- which was corrected later)

Unfortunately for me, we thought that would cover it but eventually had to have a second TTT to fix that as well.  Now things are nice and stable.

Medial release would not have been an option for me since my major underlying problem is hypermobility.  I just would have ended up with a knee cap that dislocated in both directions.  Actually I haven't seen anyone on the boards that's had this done, but maybe there are.

I'll admit it was a long road, but I'm glad I did it.  I think you're on the right track trying to find a specialist right off the bat and make sure you get multiple opinions before choosing what you want to do.

Good Luck!

Liz

[WorkinWings]

PMed you.  Hope it helps.
Keep us posted, and good luck!

PS-For temporary relief, here's the brace that helped me walk again--before it caused peroneal neuropraxia...just don't tighten the straps too much!
This brace is designed for lateral subluxations, so get the brace for the opposite side (if your problem is on the left, get a right leg brace).
Wear it with the buttress against the medial edge of the patella, pulling it laterally.

http://www.donjoy.com/images/products/pdfs/tru_pulllite.pdf




PPS-hey Liz!!

[sandmanusd]

Thanks for the info in the PM!..

I have my team "aka the wife" looking them up now and seeing what I can do.

Unfortunately the biggest tricky issue with this whole thing is that it is work related so Workers Compensation calls the shots as to where I can go and who I can see.  So in order to see someone out of state I would have to prove that he is the only one that can do the job.  I know its a long road ahead for me, but its been a long road so far with no hope in sight, so at least I have you guys on here to show me the way

Thanks for the link about the brace.  I was sort of wondering about using the brace for the opposite knee to use to get my lateral push that I needed.  I assume that most of the braces out there are for Lateral Subluxation and push medially, so I would need to get the opposite knee on any of them I look at.

Im glad I found you guys when I did.  I was sort of getting lost in the thought of trying to find a pro in the field to fix my knee.  I will keep on trucking and try to get as much info as I can and see where it leads me.  There is hope yet!!! 

Time frame for me is important because the longer I take, the more likely it is they could possibly push a retirement on me, which is out of the question like I stated before.  I hope I can find someone they will approve to let me go see soon.

Thanks again

[Silkncardcrafts]

Hi there,

If I was you I would be finding a patellofemoral specialist that has done these procedures before. It would scare me that he is only talking about these procedures "theoretically".

My OS does quite a lot of trochleoplasties and the most in Melbourne, Australia.

He is a patellofemoral specialist. So, I had no doubt he would work out the best treatment for me.

I also have a Donjoy Trupull Lite brace and works really well. If you have medial instability you need to get the opposite leg to give it stability. I don't need to wear it on my left knee anymore.

Initially my OS did a lateral release repair, but wasn't enough. So, that is why he decided on the trochleoplasty. I had done conservative treatment for a long time and was just getting worse.

My OS did some CT scans and plain x-rays to determine the best type of treatment for me. Not sure how the MRI will help. Sometimes medial instability does not show on scans. That was certainly the case in my situation. However, when my OS examined my knee he could see it would go out medially.

[sandmanusd]

when you say he did a lateral release repair, do you mean he reattached it?

[Silkncardcrafts]

My OS closed up some of the gap made by the lateral release, but left some of it open too.

There are very few OS's in the U.S. that do trochleoplasties. Make sure you see one that does. I know they are very sceptical of this procedure over there. However, it has worked really well for my OS's patients. It has made such a difference to my quality of life.

[crankerchick]

I'm so sorry you are going through this. But the 2 ladies who have responded to you know this condition all too well and have helped many people on this board. I hope it works out for you through worker's comp to see the 2 doctors ClippedWings recommended. She knows her stuff and has very good information to pass on. Good luck on your journey, and just remember, the best customer is an educated customer. Take a proactive approach to your treatment, because in the end, you make the decisions for you body and you want to make the best decision for you.

[Silkncardcrafts]

Hi there,

Even if it is workers compensation push to see the right doctors. I would recommend paying for a consult yourself if you have to. Getting the right treatment is just so important and not all OS's know how to deal with this problem.

I was just really lucky that my OS specialises in patella problems and knew how to treat it, although it took a lot of time and patience from both of us.

Let us know how you go.

[sandmanusd]

Hi there,

Even if it is workers compensation push to see the right doctors. I would recommend paying for a consult yourself if you have to. Getting the right treatment is just so important and not all OS's know how to deal with this problem.

I was just really lucky that my OS specialises in patella problems and knew how to treat it, although it took a lot of time and patience from both of us.

Let us know how you go.

Well thanks, I sure will let everyone know.

Thanks for the posts and the information all, I have started contact with the 2 Doc's that were suggested to me.  HOpefully something will come from that.  The other end of the spectrum, workers comp, is harder to deal with.  Unfortunately Doctors wont touch work related patients with a 200 foot pole.  No matter how you promise to pay them.  They know the problems that come with work related injures and so the only way I could even get a consult with any Doctors is to lie about how my injury occurred, and then once they found out, I would be kicked to the curb. 

They know that workers comp pays very little for treatment and requires far more paperwork, requred to be done a very precise way.  And they know that private insurance wont pay for any operations if its work related, so they know they would HAVE to deal with Workers Comp inusrance... which they aren't willing to do, because of the above reasons.

Its a very silperly slope, this workers comp.  The doctors working for Workers Comp dont get paid as much and have to do far more work, so they cram their offices full of patients to make up for it, which yields inadequate medical care with doctors that just dont have the time to really spend with each person to get them what they really need.

So you end up getting inadequate medical care and are refused by the "good" doctors because of all the troubles that Workers Comp brings to their table, that they just dont need.

I hope they will recognize that my condition is difficult to fix and rare and allow me to see whoever is most likely to fix it the first time around.

[RugbyGal]

Hey well  I just wanted to let you know that I just had a MPLF reconstruction and a Trochlearplasty in Lyon, France last week on wed.  and to be honest..it aint that bad.  The entire thing was an hour and I was on morphine pump for one day.  The pain is alright and bearable.  Im currently on paracetamols and antiflamatory meds and at midnight one pill of morphine.  I was in an extended brace and I was able to put full weight on it with crutches of course. On Sat I went on a 2 and half hour walk (with the brace and crutches) .  I actually didnt intend to go for that long its just that I got lost in the 'hood and of course I'm showering okay as well.  The first 45 days of recovery is slow according to my doctor in terms of flexion and bruising.  But he said that I'll be able to go back to sports and stuff within 6 to 7 months.  Anyways if you have any questions just ask.  I'm bored as hell at the rehab centre