EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Posted: Mon Aug 17, 2009 4:58 pm Post subject: Endovascular treatment of MS: personal experience
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.
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.
Joined: Sep 11, 2007 Posts: 3208 Location: southern California
Posted: Mon Aug 17, 2009 5:19 pm Post subject:
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
dual stents placed 5/09
CCSVI in MS
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.
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).
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
Quote:
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.
Joined: Jul 30, 2009 Posts: 858 Location: Slovakia, Europe
Posted: Tue Aug 18, 2009 12:37 am Post subject:
Welcome! Thank you for sharing your experience, GiCi. _________________ LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs
Joined: Jul 28, 2005 Posts: 2016 Location: Sydney, Australia
Posted: Tue Aug 18, 2009 2:02 am Post subject:
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.
Joined: Jan 06, 2005 Posts: 338 Location: Massachusetts, USA
Posted: Tue Aug 18, 2009 8:11 am Post subject:
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!
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
We encourage you to also visit our Multiple Sclerosis support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no single life experience-- like having MS-- defines a person. EP now covers over 5 million true stories about every possible life experience. Find and share yours!
Forum FAQ
Search
Usergroups
Profile
Log in
