MS patient regrets his 'liberation' therapy

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

MS patient regrets his 'liberation' therapy

Postby scorpion » Sun Nov 21, 2010 8:48 am

Not sure if this gentleman's story has been posted or not. ... on-therapy
User avatar
Family Elder
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm


Postby Jugular » Sun Nov 21, 2010 9:52 am

Resolving not to undergo stenting ahead of liberation treatment but deferring the decision until one is under the knife, is like resolving not to drive home from the bar ahead of a night's drinking.

This guy must have had an extreme case of blockages. I hope his present difficulties subside and he sees some improvement over time.

What irks me is these sort of complications are lumped with angioplasty and are described as risks of liberation therapy. To me that's academically dishonest. Similarily, any reported improvement is dismissed as anecdotal evidence and attributed to a placebo effect, yet any complication (however reported) is taken as gospel.

I accept these reports and feel terrible for the people experiencing them. But for the critics, to be consistent, shouldn't they disregard these as anecdotal as well?

When I go in for my angioplasty, I am going to paste a sign on my forehead - DO NOT STENT (no matter how much I beg).
User avatar
Family Elder
Posts: 375
Joined: Mon Dec 21, 2009 4:00 pm

Postby Blaze » Sun Nov 21, 2010 10:15 am

Scorpion, I don't think it was posted earlier. This is the first I've seen it.

They ballooned 50-60 times with "snapping" and "horrible cracking?!?" Is that an acceptable practice? Has anyone else had that happen?
User avatar
Family Elder
Posts: 405
Joined: Sun Jun 27, 2010 3:00 pm

Postby HFogerty » Sun Nov 21, 2010 10:51 am

Both my jugulars were stenoseed. When they did the angio on my right jugular (75% blockage), it had to be done twice. I did hear a cracking in my right ear during the second balooning. It is a very specific sound that you hear, not like any you have heard before. I assume it was the vein being stretched.
User avatar
Family Member
Posts: 35
Joined: Thu Jul 29, 2010 3:00 pm
Location: Poughkeepsie, NY

Postby Blaze » Sun Nov 21, 2010 11:05 am

Thanks. My big question was if anyone else has been ballooned 50 to 60 times and if that is an acceptable practice. It seems excessive and even dangerous to me.
User avatar
Family Elder
Posts: 405
Joined: Sun Jun 27, 2010 3:00 pm

Postby bluesky63 » Sun Nov 21, 2010 11:23 am

Jugular, I saw this and thought that same thing -- who in their right mind would expect someone to make an informed lifetime medical decision under those conditions?????????

The medical decision had been made already! He said no!

These procedures can be repeated. Once he'd gone through recovery, he could have been allowed to discuss the situation with actual professionals, do some research, and make a rational decision while fully CONCSIOUS and not under emotional and physical pressure or in pain.

I think this is a story about BAD medical practice, not MS, not CCSVI, certainly not Zamboni. That poor guy. What a nightmare. Let's hope the pain diminishes quickly, the stents turn out well after all, and his symptoms improve -- the best possible outcome.
User avatar
Family Elder
Posts: 441
Joined: Mon Apr 18, 2005 3:00 pm

Postby PCakes » Sun Nov 21, 2010 11:55 am

I read this yesterday. He is so young. He wants his life. The life he truly deserves ....

This article crammed so much in ..good and bad.. and i thought, despite the 'scary' words, well put together. Lots of superficial information. Enough, I think, to inspire further research..
In research released in November 2009, Zamboni linked MS to a condition he called chronic cerebrospinal venous insufficiency (CCSVI), a blockage in the veins draining blood from the brain. Zamboni theorized CCSVI could increase iron deposits in the brain, triggering the autoimmune response that occurs in MS. In a pilot study, “liberation” of blood flow in blocked veins reportedly reduced MS symptoms in patients.

I was expecting to read that once he returned home things got worse but instead..
Improvement in his vision has remained, though he thinks it's not quite as clear. He can feel parts of his right leg he hasn't felt in a year and his usually cold feet seem a little warmer. “It's more improvement than I've seen in 21/2 years.”
McGowan is optimistic...

I agree with you 'Bluesky' this seems a story of 'very bad practice' , a surgical nightmare, but we have yet to hear the 'other side'..and for the sake of all, i do hope there is more to this..

Last, I wish for this young man..sigh..he is so young :(.. the miracles of youth and that of the human overcome almost anything and to heal.
User avatar
Family Elder
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service