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

[Silkncardcrafts]

Hi there,

I understand what you say about a lot of doctors not wanting to see you because you a worker's comp patient. Unfortunately I understand this all too well. I had a car accident last year and the year before, both of which were not my fault. So, face similiar things. Had to change psychologists as the one I was seeing would not bill direct to TAC anymore. Glad I changed psychologists anyway. My old one just didn't get it and was ramming things down my throat.

Just hope you don't have to go through as many operations as I have had to endure to get it right. It took three operations to get it right. Now I have no problems at all. Waiting to see my OS to look at getting the right knee fixed.

RugbyGal, can't believe you ended up doing a two and a half walk. Are you mad ? Am amazed you can go back to sports in six to seven months. It has taken me a lot longer to recovery than that. My OS said it would take at least a year. If you have hypermobility I think the flexion comes back much quicker. It was certainly the case in my situation. My OS and sports physician have been really strict in what I can do, especially in the first few months. I wasn't allowed to do any exercise except everyday activities.

[RugbyGal]

well all i know that my doctor is the Dude to go to when it comes to trochlearplasties and MPLF recontructions and because he is the leading specialist he obviously wants everything to work out. My surgery took 57 minutes complete and more than 10 people were present in the OR and I think the doc used a robotic arm or something. 

 I think progress depends 1) Age - I am currently 22 at the mo so I ll bounce back easier 2) the intensity of the physio 3) dedication.  When I m not sleeping I have to contract my quads every minute every second in order to so call "wake up" the muscles and ice the entire leg as well.  When I'm on the brace and while walking, the doc wants me to put full pressure on the operated leg.  I'm not too sure as to why progress might be slower for you.. Perhaps ur OS is being cautious.   

[Silkncardcrafts]

The conclusion I have come to is that every OS has their own protocol. So, that's why rehab can differ so much. For example, my OS didn't want me using a brace post-op but that was because I had the trochleoplasty alone. When I had my MPFL reco I did go into a brace initially.

My OS uses the same technique as Dr De Jour. Just his protocol differs on what patients can do post-op. A lot of that is based on experience with other patients.

I didn't end up doing physio for long as I have had so many knee ops and know what works. My OS and sports physician guided me on what they wanted me to do. My OS wanted me to go slow in the first 3 to 4 months and plus I am a slow healer so that is why it probably took longer. I also had a lot of setbacks along the way like having a few falls and a car accident. Like you I was full weight bearing when using my crutches.

My OS was probably also cautious as it was the 5th operation on my left knee.

Hope your recovery goes well.

[RugbyGal]

Woah 5 ops already and a car accident.  You must have find it emotionally draining and frustrating. 

Its my actually my first one.  Initially, my first OS told me to do a lateral realease which kinda looked appealing at the time for i think was 6 weeks to heal the soft tissue.  Because it was an operation, I wanted to have a second opinion and the second OS took an MRI of my knee and he finally concluded that a lateral release would definately fail in the long run for I have a severe case of trochlear dysplasia and thus recommended to me to see the French doc.   Trochlearplasties and MPFL reconstructions are pretty big operations and I thought if I do it at a young age I would recover better both emotionally and physically. 

i really hope everything works out for you..Perhaps we can keep in touch through email?

[Silkncardcrafts]

Hi RugbyGal,

I sent you a private message with my email address.

You definitely did the right thing getting a second opinion. Did your insurance pay for your surgery in France ? Hopefully this will be the only operations you need. The surgeon you saw for the second opinion has definitely done you a favour.

Yeah, the 5 operations has definitely taken it's toll on me. I am seeing my OS in a week to decide on the right knee. Hopefully we can schedule a trochleoplasty soon.

[RugbyGal]

No but you know what I was really impressed at price tag of the surgery since it seems very decent.  First, only a handful world surgeons perfom this -one in france, US, Australia, the UK and Japan.  (Trochlearplasties are done in Canada however theyre now in a trial/ research period) I thought about doing it in the US but it would freaking pricey since the medical system is based on a business transaction model.  It would be three or four times the price.  Secondly considering the fact that he is pretty renowned surgeon and the fact I didn't have to wait for so long, I am happy to pay for it and I have no regret about not doing it.  The two week rehab is what is costing bulk of this trip

[Silkncardcrafts]

I can't understand how it could be three or four times the price in the U.S. Just glad I live in Australia and have a great surgeon. It is good you didn't have to wait long. How long did you have to wait ? I had to wait about 6 weeks for mine as I wanted my sports physician assisting and the same anaesthetist as I often have reactions to general anaesthetics.

Fortunately my health insurance covered mine. The only gap I had was for the anaesthetist.

[RugbyGal]

well generally medicine is always expensive in the US if you go private and plus Trochlearplasty is being performed at a certain big name hospital there so the price is increased.  I had to wait for 5 monthes because there was a lot of back and forth through emails and I had send the CT scans and stuff to france.  It was very slow in the beginning since the French dont always respond to emails that quickly.  Moreover he had to arrange the rehab centre and hospital space for me which cost a bit of time.  He also had to arrange some English speaking assitants and nurses as well.  It would definately be shorter if I was a french citizen but i m an outsider.  But I m really happy with the results and the progression at the moment. 

[Silkncardcrafts]

Get that feeling that things are very expensive in the U.S. and can be difficult to chose your own doctor. At least we can choose our own doctors here if we have private cover like I do.

That is great you are happy with results so far. My OS has talked Dr De Jour and apparently they use the same technique which is pretty cool.

Seeing my OS in 4 days to plan the next steps for my right knee. I see my sports physician in the morning. Will be interesting to see what he says.

[fraud_ninja]

As far as health care in the US goes...it can be a blessing and a huge curse all at the same time.  Surgery is expensive in the US...each of my TTT's cost a total of about $20,000 and my screw removals were about $5,000 each.  It looks like my recent ankle reconstruction will be around $15,000 all said and done.  So if you add up four TTT's, two screw removals, and an ankle reconstruction it totals well over $100,000.  My insurance has paid all but $15,000 of it.  Thats a good thing but 15K is still a ton of money.  I'll be paying for my knees and ankle until I am 35!

The buzz word in the US right now is healthcare reform.  We need it.  I could go on for paragraphs about the need for healthcare reform and all that it involves, but I will save everyone the boring details.

The difficult thing with getting treatment in the US is Insurance Networks.  In most circumstances this is not a terrible issue, but when it comes to needing a specialist it can become a major headache.  If your doctor is not in your insurances network then the amount your insurance will pay is greatly reduced.  I was hugely blessed with having Dr Teitge and my ankle specialist in my insurance network.

Anyhow, thats just my input.

Brianne

[RugbyGal]

WTF OMG thats a huge a amout of money.  Sorry I m really in total shock right now

Im really lucky that I got referred to see Dr DeJour and that he agreed to operate on me.  I wish you a speedy recovery Brianne

[Silkncardcrafts]

I can't believe how expensive your operations were, Brianne. It would have been cheaper to come to Australia.

Fortunately my OS doesn't charge a gap with private health insurance. The most I have had to pay for a gap for surgery is $950, which was for my shoulder operation in 2007.

Last year I only had a gap of $100 for my knee operation, which was for the anaesthetist.

[doublemom]

Yep, health care costs here in the U.S. are outrageous.  When my preemie twin girls were born, they were in the hospital NICU for 10 and 11 days.  The one who had lung problems ended up with a bill of over $40,000 for 11 days in the hospital, and keep in mind that that was 15 years ago.  So much of our healthcare problems in the U.S. are because of stupid and outrageously huge medical malpractice lawsuits, so doctors end up paying over $100,000 per year for malpractice insurance.  Absolutely ridiculous....  At the same time, going to a national health care plan scares the heck out of me as well.  Can't win either way, it seems.

Sorry, I just went off on a rant.  I'll step down off of my podium now

Andi

[sandmanusd]

Well, I got done with my second PF tracking MRI last week and it went the same as the first one.  They had me in the prone position during the MRI and I had a tremendous amount of pressure on my kneecaps as I did this "study." So I really dont know how they can get an accurate reading or assessment of how my knee cap tracks if its pinned to the table while they bend my knee.  It seems like common sense to me that you wouldnt get a very accurate picture of how my kneecap tracks normally, when I hve the weight of my legs pressing down on them against a table.

[WorkinWings]

Oh, Sandman!

I am sorry you had to go through this.
I have said it many times here on KGs: it's a hard reality to come to grips with, but most docs really, really have no clue what they are doing when it comes to that big ol' sesamoid. 
We would of course hope that, if they lack the technical knowledge, they would at least still have some common sense going for them, but... Nope! 

You are right--it makes no sense.

I must say, though, I was veeeeeeeeery happy to receive your email today, and to know that you are now in touch with the best of the best!

Now we're talkin'!!

I will reply with more detail in private, but wanted to let anyone in a similar situation know: don't give up!  We have to fight to find the right care, but it DOES exist.

I'm glad you're on finally on the right track.
May we soon be able to say the same for your patella