ADRSupport Community

ADRSupport Community (https://www.adrsupport.org/forums/index.php)
-   New Member Introductions (https://www.adrsupport.org/forums/forumdisplay.php?f=58)
-   -   Greetings to all (https://www.adrsupport.org/forums/showthread.php?t=12809)

Devo 06-09-2014 01:57 PM

Greetings to all
 
Hello
Been lurking too long. In fact, one not so kind doctor recently told me I have waited so long that I can't have an ADR because of osteophytes. Bah, what does he know.

I have a blown c5-6 with some bone spurs. Cord is flattened out and some myelopathy. Thing is, the myelopathy has been there for 10 years. Every time I get a new MRI for a consult, the docs act like it's fresh and go into panic mode.
I don't have much pain but have occasional trouble with the legs, not too bad. Some arm tremors, twitches but not too bad either. I know it needs to be fixed because at 54, my ability to recover from such a surgery is diminishing.

I do not want a fusion. Nor a laminoplasty. I want an M6. I have consulted with several of the best and been offered the M6 overseas but have been told flat out
"no m6 for you" ( like that Seinfeld soup guy ) by U.S docs doing the new trial.
Clavel, Hamlen, Ritter Lang and Dare all say an M6 would work for me. Even Lauryssn said he could do one for me in Switzerland.

Have any of you heard about FDA expanded ( or extended ) use policy? I understand that a patient who doesnt otherwise qualify for a trial may receive an investigational device if they are willing to pay for it, the risk of side effects is low and there is no comparable option.

I don't want a Pro Disc or some of those other head on a swivel devices as I am not an owl and do not like the idea of pesky chromium ions infiltrating my organs.

Oh well, thanks for letting me vent.

Harrison 06-14-2014 09:06 PM

Hi Devo, I think we replied to a similar post elsewhere, but I just wanted to say hello. Anything new? What are your next steps? Are you qualified for the M6 trials in the U.S.?

:look:


All times are GMT -4. The time now is 01:07 AM.

© Copyright 2006-2023 ADRSupport.org All rights reserved.