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Offline Jens GT

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Losing hope...
« on: June 23, 2013, 02:36:55 AM »
Hi all.  I have posted on this forum a few times.  I will give a brief overview of my knee issues.

Born with mild hip dysplasia....dr recommended surgery parents ignored.

Chrondomalasia in late teens.  Lots of PT in mid 20s.  Calves are huge, quads dead.  Kneecaps maltrack...PT doc said the hip joint does not have a normal ROM.  PT did not really help at all.

2 years ago (age 31) walking down stairs felt a very sharp pain in back of knee and for the next few weeks walking sucked because I had quite frequent sharp pains and buckling.  Went to Ortho and he twisted my knee in all the directions after which I could not put any weight on.  Had an MRI after which he basically told me, this is just arthritis...lose weight.  Second opinion basically told me the same thing.  Wanted to just give me cortisone...which I did not take.  Told to lose weight.

Currently...have lost 70 pounds.  Keep being told "I bet you feel great".  Negative.  My left knee still very unpredictably has sharp pain and buckling at times both when going down the stairs and walking.  Sometimes it is fine and sometimes I take a step and get excruciating pain.  My hips have been really tight and stiff lately as well which is painful.

I went to a new doctor yesterday and they did some X rays.  He checked them out and gave me the "good news" that all was fine.  My hips looked "great" and he saw no sign or arthritis in my knees at all.  He saw bone spurs and that was it.  He actually said to me "I don't see any severe pain here".  I wanted to kick him...hard.  I asked if nothing is wrong why can't I walk down the stairs.  He said that because of my gait, the iliotibial band gets tight (perhaps the only thing he said the whole time which I agreed with)....and that I should go down the stairs with my feet pointed outwards to ease the tension.  Said to keep losing weight.

I just feel like if you are not a runner or athlete...and if the meniscus/ligament tests are all negative...they think you are making it up.  I have not had one positive experience with an orthopedic doctor concerning my knees.  I have been told everything from "you will need knee replacement at some point" to now "your knees are fine!".  I KNOW they are not FINE. 

I am just losing hope that I will be taken seriously.  Not sure what to do.  I tried to get in with a Johns Hopkins knee guy, they did not return my phone calls after I sent them my records...when I finally got them on the phone she said "the doctor said there is nothing he can do for you".  Awesome.


Offline kcknee

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Re: Losing hope...
« Reply #1 on: June 23, 2013, 03:25:35 AM »

Keep fighting to get help. If you have  a difficult to diagnose problem and a pre-existing condition that can be used as a possible explanation, then be prepared to do a lot of the work on your own. In my case, I had a stroke as a 4 year old. Every OS I've had has come up with bizarre explanations to blame this 40+ year old stroke for the complications I have had. My current OS in a semi-apology for his latest bizarre "blame the stroke" theory said that OSs look for the "most obvious" cause for a problem.

I've had to write out a timeline of symptoms, research conditions cross referencing them with my symptoms, create a binder full of medical notes and my research, write out my theories in length, reference medical journal articles to back up my theories and even order my own medical tests to get proof. Even then, I have had to resort to seeing specialists and other OSs to get help.

It's not easy or fun, but keep fighting for yourself.

12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline Jens GT

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Re: Losing hope...
« Reply #2 on: June 23, 2013, 04:22:09 AM »
Thank you for the reply.  You are totally right...I am just going to have to keep fighting.  I have been doing a lot of reading tonight and I think that it definitely could be my IT Band giving the severe pain when going downstairs and also the tightness in my hips.

What really annoys me is the doctor seemed to know that but acted like it was "JUST FINE"!  He never suggested any PT or stretches at all.  From what I am reading, IT Band requires quite a bit of work to stretch out and get back to normal.  He just let me walk out of there thinking I was crazy.  Why not give some advice instead of downplaying my problems? 

I am considering going back to the doctor who did diagnose me with IT band issues a few years ago...this was from riding stationary bike at the I stopped doing that.  Maybe she will be more helpful if I see her again.