CCSVI: had liberation done in January 09

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI: had liberation done in January 09

Postby jennifero » Mon Oct 26, 2009 1:07 am

I am sorry that I failed to mention,I was the first U.S. patient in CCSVI's preliminary study. If I had to go back & do it again,my answer is YES,YES,YES.

In January 2009, I left my home & country and went to Italy for Liberation at the University of Ferrara Vascular DiseasesCenter,all in hopes to help my brothers&sisters around the globe end the suffering!

3 years in to my MS diagnosis, tried Avonex, MANY IV's Steroids,Copaxone, GammaGuard-IVIG and CellCept.
First night after of liberation(1/12/09) I was able to get undressed & dressed standing in middle of room w/o holding on to chair or having to sit down.
Which has not happened for me in 3 years. I have also driven approx 10 times which I was not able to do before the liberation and I missed my 4X4,that's for sure! My last neuro visit was better news,I have to share first I dropped an entire point off my EDSS rate and second,shared how I believe this happened. My mobility has improved and I keep the body moving with my WiiHab@home. I use the Wii Fit& Wii Active and truly enjoy the challenges in the games yes,even on the easy settings it is still challenging.
HUGS from your sister around the globe. GOD BLESS

UPDATE 3/24/10- Visit w/neuro. brought news of two new lesions on brain,very tiny but new. huh..I don't feel worse than I did over 14 months ago. I am still able to do more than I did before Liberation!! I will continue w/WiiHab @ home,sorry Nintendo Wii. Yes, I did start out w/bowling but have added Wii Fit,Fit+ &Wii Active to continue working/moving the body and having fun doing so. HUGS
Last edited by jennifero on Wed Mar 24, 2010 2:06 pm, edited 3 times in total.
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that's two

Postby jay123 » Mon Oct 26, 2009 5:46 am

That's two posters from the Jacob's clinic who posted about great results after heading to Italy!! I have also heard rumors that one of the trial patients is now out of a wheelchair and using a cane, hope it's true....

Now the question is, if these results from Italy are so good, why hasn't Jacob's started some of their own interventions along with their 2 (?) year study!

They will probably use angio when they do the interventions though since they are so aligned with Zamboni, I do think the stents are a better idea imho non expert opinion.

Cheer, was there any/much debate about angio vs. stents at the conference? I have had some private chats with GiCi about his logic in preferring angio which I respect, but after the reading I have done and talking with Dr. Dake I like the stent option. Pus I don't trust health care to let me get re-tested and re-corrected enough with the angio method.

Congrat's jen!!!
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Re: that's two

Postby cheerleader » Mon Oct 26, 2009 7:59 am

Jennifer,
Welcome! Thanks so much for posting your experience! Dr. Zamboni is an incredible doctor, and you are so fortunate to have been part of this groundbreaking research. Continue to keep us posted, and consider adding your story to the "Tracking" thread. Down a point in EDSS is HUGE! We wish you continued healing.

jay123 wrote:
Cheer, was there any/much debate about angio vs. stents at the conference? I have had some private chats with GiCi about his logic in preferring angio which I respect, but after the reading I have done and talking with Dr. Dake I like the stent option. Pus I don't trust health care to let me get re-tested and re-corrected enough with the angio method.


Yes, there was debate and there will continue to be. Zamboni is looking to open neck surgery or some sort of dissolvable stents and wants to do angio until then. Jacobs seems to be of like mind. I think everyone's waiting to see how the Stanford group does. Venous stents are very different than arterial...they endothelialize sooner, and are not subject to pulsing and pressure issues. They are basically passive draining mechanisms. Read up on this yourself....there have been issues with the Stanford folks- the neck location is very mobile and tight, with the vagus and accessory nerves going thru the same area. Jeff's been fine, but he needed a second ballooning to clean up a thickening in his left stent. He continues to heal and do quite well, and I hope he remains so, but as I've said before- no crystal ball. As with most things in life, you need to measure risk vs. gain.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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j en

Postby wobbly » Mon Oct 26, 2009 2:41 pm

jen jen jen was my partner in crime in italy / all i can say is--marino/ jen will get that/ whole point way 2 go / so all good i didnt get 2 talk 2 u at the party / STAY STRONG :oops: :oops: :oops:
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Re: j en

Postby jennifero » Mon Oct 26, 2009 2:56 pm

wobbly wrote:jen jen jen was my partner in crime in italy / all i can say is--marino/ jen will get that/ whole point way 2 go / so all good i didnt get 2 talk 2 u at the party / STAY STRONG :oops: :oops: :oops:

MARINO the man who took care of US!! God bless him,that was the MOST fun I had were the knights we spent at a local bar with that great man. Hanging strong dear,staying out of trouble and enjoying the Sabres,they make me smile..HUGS
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