CCSVI

[dgriff]

Hi,

I've had MS for over 3 years and mediations arent making it better, its just a bandage. I'm looking to get the "liberation" treatment...(CCSVI) What do you think of this procedure?

Thank you!

[beachcomber13]

Oh I gotcha. ;)

[Sumanadevii]

dud....I see now.  He posted on someone's thread.  Sorry, I thought it was his journal.  

[Sumanadevii]

http://www.medhelp.org/user_journals/show/272710/CCSVI-Treatment---Successful

I can still see it.....

[beachcomber13]

I do not see any journal entries for dgriff. Did he delete it that quickly? (I'm posting 19 minutes after you.)

[Sumanadevii]

I am not understanding something here.  You are asking us what we think of this procedure and state you are looking into having it done.  Yet today you have a journal entry saying you had the procedure done and where it was done.

So, have you or haven't you actually had the procedure?

[sllowe]

Dgiff,

I'm sorry the DMDs have not been helpful to you. Have you considered the new oral?. The traditional are more than a bandage to many - Myself included. I have no new damage in my CNS.

But, there definitely needs to be more study in this area of CCSVI, study that includes the large incidence of MS patients with this condition. And, from my reading, feel that evidence will be in our near future.

I myself would be curious to know if I had an insufficiency, however, I would not opt for vein stinting for the obvious - it's a vein.

This is a pretty good paper:

http://www.ectrims.eu/pdf/ECTRIMS_CCSVI_MS_ECTRIMS_EFNS_ENS.pdf

Some excerpts from the above link I found informative.......

"In considering CCSVI as a highly specific finding in MS, it should be remembered that cerebral venous insufficiencies were already discussed as a causal factor in other neurological diseases such as transient global amnesia or idiopathic intracranial hypertension (Schreiber et al., 2005; Nedelmann et al., 2009). Furthermore, other conditions such as neck-dissection surgery result in changed venous outflow (Gius and Grier, 1950).
There is no scientifically proven evidence for a higher incidence of MS in such patients with confirmed venous obstruction, so that serious doubts are raised about the conceptual plausibility of CCSVI as a significant factor.

For those who wanted more discussion on theory....

"There is the theoretical possibility that the venous drainage of autoimmune lymphocytes from the brain may cause some endothelial changes during the longstanding disease course of MS, maybe in combination with immunosuppressive therapies. Yet even if this were the
case, this is insufficient to justify invasive, costly and potentially dangerous manipulations of the deep cervical venous system in MS patients."

"Therefore, both the EFNS and the ENS Multiple Sclerosis Scientist Panel and ECTRIMS Executive Committee emphasize the high risk and absence of a scientific basis for liberation procedures in MS patients. All societies are in full accord with the Multiple Sclerosis International Federation statement on CCSVI
(http://www.msif.org/en/research/msif_on_ccsvi.html)"

-Shell

[beachcomber13]

I am keeping my mind open about it. The idea that our damage tends to occur near veins makes me wonder. I am definitely following the research on CCSVI. I would consider having the procedure when the methods have been standardized and the safety record improves.

I am also frustrated that the MS meds are mere bandages.

[Sumanadevii]

It is nice that you joined us just to let us know!

Good luck.  Keep us posted.

[jensequitur]

What they've found is that ballooned veins restenose, so the effects of the treatment eventually wear off.  It's not a casual procedure, and re-ballooning a vein may cause more damage to the delicate structures inside the vein.

I think you'll find this interesting reading:

http://ms.about.com/b/2011/10/25/a-ccsvi-breakthrough-i-think-so.htm