Endovascular treatment of MS: personal experience

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

Endovascular treatment of MS: personal experience

Postby GiCi » Mon Aug 17, 2009 3:58 pm

I am a 63 year old Italian consultant cardiac surgeon working full time in Belfast since 1993. I was diagnosed wirh chronic progressive MS in 1986. It started with spasticity and progressive weakness of the lower limbs, more marked on the right side. It affected my ability to walk and control of bladder and bowels became a problem, in addition to erectile disfunction. When I met prof. Zamboni two years ago I walked with a stick, 200 yards seemed an unsormountable distance, and fatigue and back pain were a real problem. I met his wonderful team, Erika a very skillful sonographer, Annamaria competent and lovely researcher in functional assessment, and Dr. Roberto Galeotti, a skillfull interventional radiologist. In brief, Ultrasounds showed obstruction of the venous drainage from the brain at the jugular veins level, this was confirmed at angiography showing 95% stenosis of the left jugular vein and an inverted valve in the right jugular vein. Dilatation of both sites with a balloon was carried out during the same session. I experienced an immediate benefit: I was taller, the strength in both lower limbs improved, and so did bladder and bowel control. I could stop using Viagra.
I read all the papers that Zamboni and his team have published so far and from the first one I believed that he had made the first real breakthrough in the understanding the etiology of MS.
Now I have notice a slight deterioration of my condition, although I am still a lot better than before having the procedure. A check-up with Zamboni a month ago showed that the flow in the left jugular vein is still ok but there is reflux in the left one: the plan is either a further dilatation or surgery. This shows a strict correlation between venous drainage from the brain and symptoms.
Zamboni invited me to take part in the press release during the international congress on CCSVI in Bologna in September: I look forward to sharing my experience with others. I am very proud to share with Zamboni the place of birth (I am from Ferrara) and I know that his idea will change the destiny of thousand of MS sufferers. I hope that the medical profession will hopen his eyes soon.
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Postby prof8 » Mon Aug 17, 2009 4:11 pm

GiCi, thanks so much for sharing this with us!!!! It gives me such hope which as you know is hard to come by for people with MS. Good luck with further treatment. Thank you, thank you, thank you.
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Postby rainer » Mon Aug 17, 2009 4:18 pm

Very insightful, especially from a cardiac surgeon.
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Postby cheerleader » Mon Aug 17, 2009 4:19 pm

Thank you for sharing your experience, GiCi.
I look forward to meeting you in Bologna,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Mon Aug 17, 2009 4:31 pm

Thank you for sharing and spreading the word.

I can't wait until September!

I'm glad we got in quick because that waiting list is only going to grow.
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Postby Rokkit » Mon Aug 17, 2009 4:54 pm

GiCi, thank you so much for posting. It is very good to hear from someone with progressive MS. Reports like yours are giving me so much hope for the future.

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Postby bibliotekaren » Mon Aug 17, 2009 5:07 pm

GiCi,

Thanks for sharing your unique perspective. I wish you continued healing with the next procedure you'll be receiving.

Best,
Donna
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Postby Loobie » Mon Aug 17, 2009 5:43 pm

Word
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Postby chrishasms » Mon Aug 17, 2009 5:51 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 6:30 pm, edited 1 time in total.
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Postby bestadmom » Mon Aug 17, 2009 7:06 pm

Hi GiCi,

Thank you for sharing your story. I am glad to hear that your walking and strength improved, and hope your new symptoms are alleviated soon. Your story gives me even more hope that once I have the surgery, I can improve (I'm secondary progressive 3 years and can't walk).

Michelle
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Postby mrhodes40 » Mon Aug 17, 2009 8:41 pm

Hi Gici!! You are very welcome here and thank you for taking time to share your story with us stranger it means so much to all of us.

Like you I am praying for the day the eyes of the neorlogical community are opened and I also welcome more research into this paradigm and all of the details of how this approach works for patients.

you said
Zamboni two years ago I walked with a stick, 200 yards seemed an unsormountable distance, and fatigue and back pain were a real problem
Have you noticed any changes in your ability to walk? I am curious.

Thank you so much for sharing
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby ErikaSlovakia » Mon Aug 17, 2009 11:37 pm

Welcome! Thank you for sharing your experience, GiCi.
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
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Postby CureOrBust » Tue Aug 18, 2009 1:02 am

chrishasms wrote:The reason I ask is I am wondering if the same results are possible with the angio plasty alone, is the stenting process is better, or is it just to early to tell?
In Zamboni's presentation of preliminary results, he talks how for those that the stenosis did return for, he has now placed stents. It would appear that for some abnormalities, both Dr Zamboni & Dr Dake are very clear that stenting will only do.

Zamboni was originally hesitant for stent's of the jugular, regarding the shape he felt they were required to be. Not sure of his current thoughts.
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Postby Arcee » Tue Aug 18, 2009 7:11 am

GiCi, heartfelt thanks for posting. I hope that the current reflux is easily rectified, and I look forward to hearing more about your experience. And your hometown pride is very understandable and exciting!
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Postby chrishasms » Tue Aug 18, 2009 7:37 am

123
Last edited by chrishasms on Sat Dec 05, 2009 6:30 pm, edited 1 time in total.
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