5 replies to this topic

[sucarr02]

Hey everyone, in May of 2009 I traveled to Lisbon, Portugal to undergo an experimental stem cell surgery involving an olfactory mucosa transplant. I wrote about my experience in hopes of helping others who are considering being involved in human trials. Please read this article and feel free to ask questions.
http://www.associate...ugal.html?cat=5

[mellowgator]

hi sucarr,

welcome to the site and thanks for sharing your experience.

i'm also a c 6-7 quad. i've been injured 25 years. i'm able to do independent transfers. i don't have much as far as core muscles go but i do have a good routine down for transferring. using my hands i move my legs to the footplate and then pivot and using my arms and shoulders.

are you certain that your treatmment gave you more muscle control or did you learn how to make a transfer? most people at our level transfer independently.

did you do alot of physical therapy afterwards?

how much did you spend for the treatment?

would you do it again?

did you lose movement or sensation in your arms or hands?


one of my friends had a series of treatments and she regained use of b $ b and she regained some movement in her lower extremeties but still couldn't walk. she's very happy with her results.



mellowgator

Edited by mellowgator, 09 October 2011 - 01:18 AM.

[McTavish]

Hi Sucarr, I read your article with great interest. I must say I think you were very brave, I think if I arrived at a hospital that was so run down I would be out the door quicker than I came in. I can transfer independently so maybe I don,t understand fully that it was worth going through all that to be able to transfer.,but obviously to you it was. I am glad that you are happy you had the operation and that you are happy with the outcome if it was not for people like you willing to take these chances we would never progress with sci. Take care and

[brockit79]

Hi,

Thanks for this it is an interesting read.

Broc

[edlee]

Quite a story, Susy. Considering the sanitary conditions in that ""hospital"",, it's no wonder that they tried to pump you full of antibiotics.

It's been a while, have you gotten any of the strength and feeling back,, that you lost in the surgery? Any other returns?

And I, too, am curious as to how much you were charged.
ed

[Ferreira]

I read your story. I believe your every word and despite everything, i think you, me and all the others deserve the respect for the determination, courage and risk on doing that surgery.
Believe me i am on your side.
Hope you are feeling better since the first post.