I'm not sure where I should post this, so forgive if its incorrect. I know I have posted here my RSD concerns and everyone has been so helpful.
Background - TKR 12/07 due to osteoarthritis - RSD diagnosed on knee 3/08, manipulation 4/08 for lack of motion - no help. Open debridement of knee 11/08 for adhesions and excessive "fat pad". Still am at only 70 flex, 20 extension. In 5/09 - diagnosed with MS and Ankylosing Spondylitis (form of arthritis to spine).
** Here is where I need your advice! I requested my med records as I am looking for new ortho dr. as the one who did surgery stated he does not know what else to do - must be the RSD. Going over my records I found a Xray report done in hospital during 11/08 operation. During this stay in the hospital, I fell the day after the open debridement and they took xrays and said all was well. In looking at this Xray report of this time, I can't believe what I read. It states that : "there is an ossified density inferior to the patella which was not seen on an prior xray compared with of 4/4/08". It states "It is unclear wheather this represents heterotopic ossification versus a small avulsion fracture." My dr just stated everything was fine after the fall and that is what was written in the main hospital report. No statement of a possible fracture or anything else! My main concern (besides being totally upset at this dr) is if it is the heterotopic ossification of the knee and this is what is making me not be able to move my knee. I have been going from dr to dr and they all state it must be from the RSD - but I keep telling them it feels like something else. I have the swelling, redness and warmth from the knee. Iknow RSD can do the same, but my range of motion is going downhill fast and I keep falling now. My RSD pain is so different - and is on the other side of my knee where I feel different. Who do I go to ??? My neurologist, rheumetalogist and pain dr are all with the same hospital my prior orth is with that did the surgery. Do I trust one of them to go see? Or do I find another ortho I don't know and try my luck? I am so upset by this. Please, I need your input and advice on this as I am so dumbfounded and not sure what to do - but know I need to see someone! Thanks!

Hi Lindkaye,
I'm so sorry you have been deceived regarding your fall and injury at the hospital. Many years ago, my mother's Dr. told her all was well with her tests. But all wasn't well, the technition said suspicious lump existed and needed further testing. She died in just a few months. When we got the records, like you did, and found we had been deceived and lacked opportunity to get much needed treatment that lead to her death, we decided to see a malpractice attorney 100 miles away-Portland, Or. That is what I personally would do and get RSD dr. from Portland , reference from attorney. Inexcusable behaviour! I have a crippled hand because of same type of poor practice.
My mother's case went well with 100% judgment. Had video deposition before her death and shown at trial. So Sad. I was 25 and Mom died at 46.
I didn't pursue any legal action in my RSD case. But glad we did in my mothers case.
Sometimes the way to best Drs is thru malpractice attorney.
Take care, loretta

I would bring it to each and every doctors attention till someone explaines it to you, physiotherapiststs everyone.. if there is another reason for the pain/movement disorder then it needs to be looked at. Also request new xrays, do whatever it takes.

Some times an underlying problem can cause RSD, and can in fact relieve the RSD symptoms when the underlaying problem is fixed. We have in fact had a few such lucky members here

However that said please don't get your hopes up too much as the let down hurts if they tell you theres no chance of repreive, I know.

Keep up the range of motion exercises, imobility is your enemy and will continue to stiffen it up. Always try move as normaly as possible and weight bear.

Good luck,
Sandra

Do you guys think I should go outside the realm of drs I have been seeing at this "nameless" hospital where the fall and operation occured? I feel that it is very much wrong for the drs and nurses to not let me know the outcome of this xray - especially if it turns out that I do have the ossification problem. I don't know if I should talk to their Patient Services dept or whatever......\ Loretta - I am sorry for the problems you had to go thru with your mother - that must have been very painful. I feel at times drs do not want to handle the "hard" cases and sometimes just sweep us under the rug. Do you know of a dr for RSD in Portland? I go to one in Seattle but could drive down there for a meeting. Thanks.

Hi. I am sorry you are facing this. As someone who has got a lot of opinions and been to many different specialists for other conditions then RSD I suggest it. Sometimes when one doctor will say it is X the other doctors just follow. My current pain doctor who was willing to look outside the box and try alternatives then what others wanted has been the best. I am not familiar with a doc in your area. I suggest if you have a major hospital or teaching/university hospital you call the dept area and explain your situation. Have you thought since you do have other conditions of sending your records etc to a place like Mayo as they do a team approach from what I heard. I know this is not always possible for people to travel but I know you can send your records there to see if they feel they can help you and then you can figure out getting there. Hang in there

Hi LindKaye,
In Portland is a well known hospital called Oregon Health Science. It has a good reputation. I don't know any RSD Drs there. 100 miles south of Portland is where I am from. Eugene, Or. I got RSD following surgery there, but wasn't diagnosed for 4 years. We had moved to Arizona and i was misdiagnosed in AZ. But I flew back to Oregon to a very good Sports Injury Group in Sacred Heart Hospital. About 10 years pre-RSD I went to the knee Dr. Jones. This group is well known nationwide. Athletes travel to see these Drs. Of course, Eugene, is a center for tract & field and prep. for the Olympics. I know Jones is very good on knees. But I had made appointment for hand and he diagnosed me in less than a minute, had nuclear med test there at the hospital and confirmed it. He got me started on therapy the next day and ordered a tens unit. If you want his name, I'll get it for you. Also, Portland will have a sports injury group of Drs.You can look on the internet and find the group and phone number and call and ask about RSD. Also Pain Management Groups ususally have experience.Litigation is very difficult and wearing, but a lifetime of pain and treatment is also. That is actually how we won our lawsuit for my mother's death was the hiding the truth of my mothers x-rays by her Dr. and the tech. suggesting a follow thru.
We didn't know about the hidden x-rays till pre-trial discovery and depositions
Wether you follow a legal route or not, I have found getting a 2nd medical opinion is usually best if they are not golfing buddies and belong to the same country club. If there is a glaring cover up, it's just usually best if the new Dr. doesn't practice at the same hospital. Take care and hope the best for you, loretta soft hugs

A CT scan would give you much geater delination than plain x-ray. If there is a question of traumatic origin, a bone scan may still be of some value as they are "hot" for around 1 yr. post trauma.