CCSVI Treatment in Long Term MS Patients

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

CCSVI Treatment in Long Term MS Patients

Postby Toby » Tue Feb 02, 2010 6:36 pm

Hi, this is my first post. I'm 17 years old and my father has had MS since I was around 1 or 2. As far back as I can remember, he's been in a wheelchair. The one thing I really regret him doing is that he didn't actively pursue MS treatment as I was growing up. Now I've just heard of CCSVI treatment and I was wondering how effective it would be for him, just in general. He is wheelchair bound and a complete paraplegic. He is legally blind (although he still can see, just not well at all) and is unable to provide any support for himself. At this stage of his MS, and if he did actually have blockages, would CCSVI treatment do any good? I realize it won't be a full cure but what symptoms could this possibly alleviate?
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Postby Johnson » Tue Feb 02, 2010 7:25 pm

Toby,

I so sorry about your Dad, and that you have never known him as a well man. I have a 3 year old son, and have had MS since you were a baby (17 years), but mine is not so bad. I still feel sad though, when I am feeling like mouldy porridge, and can't take him places and have fun with him like I had with my own Dad. I have always said that MS is harder on our loved ones than us, in a lot of ways.

Your Dad has little to lose, and potentially, a lot to gain from the treatment - especially if it is as effective as we read here. I don't think that anyone knows yet what can happen over the long term. If, and once this treatment becomes mainstream, there will be a world of new therapies to deal with the damage, and to regain lost function. I spoke to a neurologist today who lamented that there are therapies (paid for) for people who have had traumatic brain injuries, but none for MS patients, and little research.

I was legally blind from MS for a while, but have regained 98% The brain and body are amazing machines. I hope that your Dad can get the treatment, and have recovery - even if it takes a long time.

Good luck Toby. Your story really struck a nerve with me, because of my own young son. I'm sure that your Dad is proud of you, and I hope that you are proud of yourself, for caring so much.
My name is not really Johnson. MSed up since 1993
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Postby skydog » Tue Feb 02, 2010 7:55 pm

Welcome Toby, I am proud of you to be searching for any way to gain back a little of what MS has taken from your father. A friend of mine is in a very similar situation. His MS has him wheelchair bound, legally blind and has all the difficulty you’ve described. He also has two beautiful children just a couple of years younger than yourself. He has had treatment for CCSVI and is doing well. The biggest improvement has been a renewed mental clarity. This is huge in its self and has given him a whole new outlook on life. Time will tell weather or not some of the mobility issues will be overcome. The most important thing is he has a life and a foundation to build on. The best advice I can give is help your father stay strong and search this site for the best regime that will help him in his present condition. Lots of great folks sharing a tremendous amount of information here and are all eager to help. Peace and Health to you and your father, Mark
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Postby Cece » Tue Feb 02, 2010 11:47 pm

Welcome, Toby. I think all our hearts go out to you. The only way to know what impact it'll have on any one individual is to get scanned, find any blockages, and have them treated. Even modest improvements are a big deal.

Toby wrote:The one thing I really regret him doing is that he didn't actively pursue MS treatment as I was growing up.


I can see where you're coming from but don't be too hard on him. If he has progressive m.s., there aren't any treatments available for it.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby ClaireParry » Wed Feb 03, 2010 2:45 am

Hi Toby,

I hope my children grow up to be as caring as you obviously are!

As others have said -you don't know until you try. If he has CCSVI, and the way it's going it looks like he probably will have, then he has to give it a go.

Sometimes having a chronic, progressive problem like MS can make us despondent but you can see how CCSVI has us all so excited. Get you dad to try it, what harm can it do?

Claire
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Postby sbr487 » Wed Feb 03, 2010 3:28 am

Toby,

Experience like this gives you a perspective that no college can teach.
Your father is lucky to have someone like you as a son.

There is a wealth of info available here. Halting of the immune attack itself should make a world of difference. This is not speculation but personal experience of people.

As far as reversing of the disease is concerned, quite a bit of discussion has happened here. Plasticity of brain is a topic that sheds light on ability of brain to heal itself after a disease assault.

I would say,

"Leave the brain alone and it can do miracles ..
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Postby kc » Wed Feb 03, 2010 7:27 am

Toby,

Wow. You are 17 and obviously caring and compassionate. I would definately get the ball rollinmg for your dad. Where are you in the country? There is a neurosurgeon in Upstate NY, dr mehta in Albany who is starting to do the ballooning for ccsvi.

My advice to you now is until he can get scanned to see if his jugulars are stenosed,etc tilt the top of his bed by 3 or so inches to start out with. This is something you could do for him now. It is called Inclined bed therapy and it is andrew fletcher's idea.

This has helped me while I am waiting to get liberated.

You will get a lot of support on this site so keep coming back!

kc
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Postby Algis » Wed Feb 03, 2010 7:45 am

kc is right Toby; tilt your Dad's bed by few inches - it help so many people :)

Hang on; we'll help you as we can!
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Postby zinamaria » Wed Feb 03, 2010 2:29 pm

Hi Toby and welcome! I'm with the rest of the gang here, try and at least get him tested for CCSVI, and definately do, if you can, the inclined bed therapy for your dad...you can get the info here on that thread...there's so much great info on this site for you and so many good people willing and wanting to help, so come back...also, if you haven't already, go to CTV News to see the online documentary so you and your dad can hear Dr Zamboni and Dr Salvi explain CCSVI and what it has already done for people with MS..don't lose Hope..

peace to you and your family,
zina
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Postby ElMarino » Wed Feb 03, 2010 5:27 pm

Hello. People on this forum are generally sold on the CCSVI theory. You'd be advised to get your hopes up here. Me, I'm a little more sceptical. I'd wait until the Buffalo study results were released, see if most MS patients do have venous problems, and then start thinking about getting my hopes up. I want it to be positive. But stenting a vein is not entirely safe -
arteries narrow wheras veins grow wider as they return to the heart which is where a disloged stent may end up, I think I'm right in saying.

I have started to attempt to get rid of iron. Dietry changes mentioned in this thread may be worth following up - http://www.thisisms.com/ftopict-10019.html There are other threads here on thje CCSVI forum concerned with iron chelation.

Oh, and published studies indicate that CCSVI may not be of benefit to someone of your dad's disability level in the short term. It hasn't been around so long so it's impossible to say what the long term effects may be.

Biogen has been working on a drug for at least three years (I can't find a peer rated paper written before 2007 at any rate) which promotes, in theory, myelin growth and, I think axonal repair. Others are investigating different strategies to repair damage. Although these therapies are a long way off. it may be that CCSVI would arrest progress for your father's condition in preparation for such a therapy..
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Postby Cece » Wed Feb 03, 2010 6:50 pm

ElMarino wrote:Oh, and published studies indicate that CCSVI may not be of benefit to someone of your dad's disability level in the short term.


Isn't it safe to say that the cessation of progression is itself a benefit? There is only the one published study of the treatment aspects of CCSVI in MS, by Zamboni, but I believe it showed that m.s. progression stopped.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby EnjoyingTheRide » Thu Feb 04, 2010 4:49 am

Toby,

Thanks for writing. I'm in a situation similar to your Dad's. In fact, I have a 17 year old son.

My personal hope for CCSVI is to stop further progression of the disease. Anything beyond that is gravy. If we can stop the progression, then 3 more things can occur:

1. I'll stop fearing what function I'll lose in the coming months, as I have been doing for more than 8 years.

2. My body can ever so slowly and ever so slightly start healing itself to some extent.

3. I can be stable while waiting for future treatments that can promote myelin and axon repair.

So many treaatments for MS in the past have not had any application for me. There's just no way to know right now. But I have hope. I'm trying to find someone, anyone, who will examine my veins and consider repairing them if that's what's needed. I'm on the waiting lists for both Dr. Dake and Dr. Mehta.

Good luck to you and your Dad.
Mitch
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Postby tlynn » Sat Feb 06, 2010 12:30 am

Hi Toby,

Go to the CCSVI tracking project topic it is the 7th one down and it will tell you about the people that have had the procedure and their symtoms before and after treatment.
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Postby ElMarino » Sat Feb 06, 2010 9:36 am

And it looks as though the Buffslo results will be positive..

http://www.bnac.net/wp-content/uploads/ ... 4-2010.pdf
Last edited by ElMarino on Sat Feb 06, 2010 4:57 pm, edited 1 time in total.
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Postby dunkempt » Sat Feb 06, 2010 9:47 am

And it looks as athough the Buffslo results will be positive..


Just a little, yeah :!:

-d
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