This Is MS Multiple Sclerosis Community: Knowledge & Support

I posted my history in the past but here is a summary for friends who have not had the chance to read it.
Diagnosed with MS in 1986 my clinical condition continued to deteriorate along the years. I am from Ferrara and have the good fortune to be a friend of prof. Zamboni. I had CCSVI diagnosed by him and had bilateral jugular veins angioplasty by his radiologist in 2007, with immediate improvement in my mobility and body functions.
I noticed a slight going back and had an angioplasty of the right jugular vein performed in Belfast in 2009, with consequent small improvement. A doppler study in Ferrara in June 2010 showed that the right jugular vein was ok but the left one, which was not dilated in Belfast, was re-stenosed.
Few days later Roberto Galeotti, radiologist of Zamboni's team, performed a balloon angioplasty of my left jugular vein, followed by immediate improvement in my mobility.
I had a new study in Ferrara last june and to Paolo's delight (not to speak about my own) my right jugular vein was found to be absolutely "normal", while the left one was smaller than normal but with completely normal blood flow with no regurg.
I will not need any intervention for the immediate future. Zamboni has changed my life.
Zamboni told me that he has started a clinical study in twenty hospitals in Italy and expects to have results in a year.
You may well know by now that the canadian government has officially approved the beginning of research in CCSVI.
We are getting there, although the wait has been and is going to be painful for another while.

Hello Gici It is so good to hear from you. I am so happy you are still doing well! Maybe all of the old-timers will resurface? Wouldn't that be great? Take care

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Thank you for posting your recap with current status GICI! It is great to here of Dr. Zamboni's trial also.

Thanks for coming back and getting the old timers up to date with your condition. And those of us that never met you are sure glad you came back too.

I am wondering if any of any of the early first group from Zamboni's original study have not needed further PTA after their original procedure?

At the release of his initial study in 2009 I believe those 65 MS/CCSVI patients were at least 18 months out and 50% had restenosed. I am wondering if eventually this number rose or stayed constant?

Did the pwMS for years restenose more than the CIS or very early MS or at the same rate?

Do those early pioneer patients still have their data collected?

Welcome back and glad to meet you

Cat AKA MegansMom

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

A heartfelt thank you for posting, GiCi. You have given me the biggest smile of the day!

good news is always good to hear. thanks for updating.

two bit's of good news .

A. you are doing well

B. Dr.Zamboni is continuing to advance his discovery.

Q : Have you had the " neck collar " used to measure flow ?

Q: Did you use IVUS in your Practice ?

Q : Any Private Clinics performing CCSVI .... in Italy ?




Mr.Success

Mr Success,
Thank you for your post.
The flow in my jugular veins was measured with ultrasounds.
I do not know about private clinics dealing with CCSVI in Italy, but I do know that Dr Gilhooly's team have performed over 200 liberation procedures (Essential Health Clinic, Glasgow).
I am part of the initial 65 patients treated in Ferrara and I know that a certain number were treated for re-stenosis.
Take care

Congratulations, this is wonderful to read.

GiCi, nice to hear from you
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Excellent news Gici, always good to hear from the original pioneers. Mark

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap