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Endovascular treatment of MS: personal experience

PostPosted: Mon Aug 17, 2009 2:58 pm
by GiCi
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.

PostPosted: Mon Aug 17, 2009 3:11 pm
by prof8
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.

PostPosted: Mon Aug 17, 2009 3:18 pm
by rainer
Very insightful, especially from a cardiac surgeon.

PostPosted: Mon Aug 17, 2009 3:19 pm
by cheerleader
Thank you for sharing your experience, GiCi.
I look forward to meeting you in Bologna,
cheer

PostPosted: Mon Aug 17, 2009 3:31 pm
by Jamie
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.

PostPosted: Mon Aug 17, 2009 3:54 pm
by Rokkit
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.

Rokkit

PostPosted: Mon Aug 17, 2009 4:07 pm
by bibliotekaren
GiCi,

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

Best,
Donna

PostPosted: Mon Aug 17, 2009 4:43 pm
by Loobie
Word

PostPosted: Mon Aug 17, 2009 4:51 pm
by chrishasms
123

PostPosted: Mon Aug 17, 2009 6:06 pm
by bestadmom
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

PostPosted: Mon Aug 17, 2009 7:41 pm
by mrhodes40
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

PostPosted: Mon Aug 17, 2009 10:37 pm
by ErikaSlovakia
Welcome! Thank you for sharing your experience, GiCi.

PostPosted: Tue Aug 18, 2009 12:02 am
by CureOrBust
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.

PostPosted: Tue Aug 18, 2009 6:11 am
by Arcee
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!

PostPosted: Tue Aug 18, 2009 6:37 am
by chrishasms
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