CCSVI Treatment in Long Term MS Patients
CCSVI Treatment in Long Term MS Patients
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.
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.Toby wrote:The one thing I really regret him doing is that he didn't actively pursue MS treatment as I was growing up.
- ClaireParry
- Family Elder
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- Joined: Tue Oct 20, 2009 2:00 pm
- Location: Worcestershire, U.K
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
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 ..
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
peace to you and your family,
zina
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..
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.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.
- EnjoyingTheRide
- Family Member
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- Joined: Thu Nov 12, 2009 3:00 pm
- Location: Maine
- Contact:
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.
Please visit my blog at www.enjoyingtheride.com
http://www.bnac.net/wp-content/uploads/ ... 4-2010.pdf
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