CCSVI and Spasticity

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

CCSVI and Spasticity

Postby Ned » Wed Aug 04, 2010 2:24 am

Does anyone have knowledge if leg/foot spasticity is alleviated by angioplasty for CCSVI?

I've heard about people who haven't had MS for very long bouncing back without any collateral damage, but what about longer term SPMSers?

Any info on potential repair of this condition?
If so, are time frames known?
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Re: CCSVI and Spasticity

Postby lucky125 » Wed Aug 04, 2010 5:21 am

Ned wrote:Does anyone have knowledge if leg/foot spasticity is alleviated by angioplasty for CCSVI?

I've heard about people who haven't had MS for very long bouncing back without any collateral damage, but what about longer term SPMSers?

Any info on potential repair of this condition?
If so, are time frames known?

Hi Ned,

I've been RR for 20 years. I've had the procedure twice now. No great relief of spasticity the first time. The second one was only done last Friday. I think that my spasticity may be a little better, but it's too soon to say. Luckily I tolerate oral baclofen well, and it works for me.

I think that results are really so individual. It makes perfect sense that those with only short term disability do better than those of us who probably have some level of permanent nerve damage.

Still wouldn't trade all of the other wonderful improvements I've had though! Check out my blog for more details.

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby magoo » Tue Aug 10, 2010 6:50 am

Hi Ned,
I had terrible stiffness and spasticity in both legs below the knee for 6 years. It took me about an hour each morning to slowly move and stretch enough to get walking. The pain kept me up at night.
I have had a 75% improvement since treatment. It was about 90% improved for the first 7 months, but I have had a slight increase in soreness in the past few months. It is still so much better and I bounce out of bed in the morning, but this new soreness is curious. This change will be discussed at my 1 year check-up and I'll report back then.
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.
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Postby ppicklee » Tue Aug 10, 2010 11:17 am

I would agree. 75% improvement would be awesome. It would kind of be like a vacation. I look forward to hearing more up dates after your one year checkup. Thanks Magoo
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Postby TMrox » Tue Aug 10, 2010 12:21 pm

Hi Ned,

I had a big big problem with spasms, these were triggered by movement and affected hands, arms, trunck and legs. Without meds I would have at the very least 200 spasms a day. These spasms will get the control of my hands and will not allow me to move my legs for a minute or so. Not good.

After my angio, I did NOT notice a difference with spasms right away. It took about a month to see some minor differences. I mean really minor. Two months afterwards I noticed a huge difference. Three months afterwards I was able to get out of my cocktail of anti-spasms meds.

I have no idea why my spasms resolved after the angio. Could be the collaterals affecting the thyroid? I mean who knows.

There are certain things that I'm curious to know how they work, like how exactly planes fly, but at the end of the day, it does not matter much. The important thing is that they fly, most of the time safely. I've taken the same approach re the relieve of my spasms. They went away after the angio, why? I don't know but it might not matter much. The important thing is that they went away and have not returned.

Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby rssugg » Tue Aug 10, 2010 12:40 pm

that is great!
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spasms

Postby elliberato » Wed Aug 11, 2010 10:54 am

I personally did not receive any relief from spasms post liberation, but I have recently been partaking in medical marijuana. What a relief!!!!!!Please consider it. Best sleep I have had in years and spasm free. If i could only figure out a way to get the beneift during the day at work. Maybe tea?
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Postby TMrox » Wed Aug 11, 2010 11:15 am

Maybe sativex could help you (even at work). It is a cannabinoid medicine aimed at treating spasms in people with MS where previous anti-spasm meds have failed.

As far as I know, it was approved in Canada in 2005 and it has just been approved in the UK and rest of Europe. Don't know in USA.

I've never tried. It got the approval in the UK when I got out of my anti-spasm meds. Shame, I missed the opportunity... :D

http://www.gwpharm.com/sativex.aspx
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby IHateMS » Wed Aug 11, 2010 12:29 pm

anyone have a Baclofen pump? I do. Just curious of need post-surgery.
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Postby Vhoenecke » Wed Aug 11, 2010 1:47 pm

My spasms were bad in my right leg and upper shoulders. My bad part was from my groin down to my knee and then in my calf muscle. Since my surgery I can't really complain about my spasms. They must be at least 90% gone. I am very happy. I think one symptom of narrowed veins is spasms.

Val
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Postby kc » Wed Aug 11, 2010 4:20 pm

Ned,

I was liberated 5 weeks ago. I used to get terrible spasms that would throw me around. Started slee[ping inclined 12/10/09 that helped. And now the spams are about 75% better. Sometimes I will just be sitting there and think "OMG my body is relaxed". It is a wonderful thing. I am spms dx 1996.
good luck
k
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