NMSS Updated CCSVI statement - alludes to Dr. Dake and Holly

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

Nube Post

Postby Poppy » Thu Dec 03, 2009 10:26 am

I'm new, but I've been reading for a bit. My husband (who has MS) and I found out about CCSVI from a post on Reddit.com.

Cheer I've been following your advice from a post I found on Facebook, but haven't had any luck yet. When I do I will post my findings on http://ccsvi-multiple-sclerosis.com ( http://ccsvims.com for short)

You stated:

cheerleader wrote:Times like these I wish Jeff and I had just gone to Stanford, had his treatment, gone home and gotten on with life.

But I asked Dr. Dake if he minded if I shared the information with a community of friends online...and he said fine. I sometimes wonder if we will both regret that decision. I hope not, but it's not looking so good.

In the end, I know we are only responsible for ourselves- but I don't think folks understand how upsetting this is-

But as Sharon stated:

Sharon wrote:Jay123 and Ozark,
I was in contact with Holly's family soon after she arrived at the hospital in Phoenix. I ask that everyone who is interested in the circumstances on Holly's death, please read the following thread
http://www.thisisms.com/ftopic-7886-day ... ly-30.html

From that thread - written on Aug 19, 2009
. . .
Trudi, Holly's sister wanted to make sure that we understood the stroke was not caused by the procedure at Stanford. This was confirmed by the neurologists at St. Joe's and Dr. Dake (Dr. D was with Holly in Phoenix Sunday afternoon ). . . .

You should not feel responsible at all. Death is an unfortunate part of life. It's not quite related, but my husband and I lost our son to SIDS four years ago. We both beat up on ourselves thinking we may have done something that caused it, or maybe we could have done something to prevent it.

In the end we finally came to grips with the fact, bad things happen in the world. For what ever reason, sometimes people die.

I hope I don't offend anyone by my next statement because I know some people really die badly. We met a couple who lost all three of their children in a fire, so if there is anyone in here who lost someone in a painful death I apologize.

The greatest consolation I had when it came to our son's death was he died in his sleep. He did not suffer any pain or terror as some people do. When someone does die, we grieve for ourselves not the deceased because that person is at peace -- or at least that's the way I look at it now.


As a side note, since everyone is concerned over stints, I don't remember Dr. Zamboni saying his team used stints in the Canada TV program http://www.ctv.ca/servlet/ArticleNews/s ... ?s_name=W5 I thought he merely stretched the vein so blood could flow through. Does anyone know if the Zamboni team uses stints?
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Postby Johnnymac » Thu Dec 03, 2009 10:37 am

its going to be difficult to debate CCSVI without heavy emotion, I think everyone should just try and remain aware of that and try to not take things personally. I know everyone here wants the same thing, a cure for MS, and its OK to be passionate, unyielding, bullish, frightened, combative, helpful, angry, etc. Just remember your brothers and sisters who post on here all want the best for everyone else. A little arguing can be a good thing....

Trev, I had watched your first video post on CCSVI a couple of nights ago along with a few others and its all I can do to not cry watching the hope in your and others faces when talking about this incredible new avenue for MSers to explore. Stay strong and keep putting up videos!

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Postby Ruthless67 » Thu Dec 03, 2009 11:33 am


Thank you for getting the word out about CCSVI, it is great every time we get some print or air time for CCSVI. There is still much research needed before this treatment is available worldwide and we improve the delivery and safety of the procedure.

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Re: Nube Post

Postby Lyon » Thu Dec 03, 2009 2:06 pm

Last edited by Lyon on Wed Nov 23, 2011 1:39 pm, edited 1 time in total.
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Postby patientx » Thu Dec 03, 2009 2:25 pm

Just to add to what Bob said, from my reading of the paper, it looks like Zamboni used a stent in one case where the azygous vein would not stay open after ballooning. I think he is still reluctant to use stents in the jugulars, and he correctly foresaw the migration problem:

IJVs were stenosed unilaterally or bilaterally in 59 of 65 patienst (91%).... Restenosis recurred in 47% of patients overall. Cumulative survival curves demonstrate that such negative outcomes ocurred more frequently 8 to 9 months after the initial procedure.
The logical alternative would be stent insertion. However, we refrained from using this option due to the absence on the market of dedicated devices of the proper size and length. Adapting existing stents at the level of the IJVs could increase the risk of pulmonary migration and displacement, this affecting venous outflow from the upper extremity.
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Postby ozarkcanoer » Thu Dec 03, 2009 2:55 pm

Yes, Lyon and patientx, I noticed that too. So one line of research is to research jugular stenosis and determine the proper size and shape of stents to fit so there is no slippage. It seems like a stent manufacturer would be interested in this at $10,000 a pop !!
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Postby Lyon » Thu Dec 03, 2009 3:43 pm

Last edited by Lyon on Wed Nov 23, 2011 1:38 pm, edited 1 time in total.
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Postby Shannon » Thu Dec 03, 2009 7:14 pm

..and some sort of screen blocking the entrance to other organs. Where did I read that? Anyhow, somewhere I read that this can also be used, so may be a possibility.
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Postby Sharon » Thu Dec 03, 2009 7:29 pm

Shannon -

they could use a filter at the vena cava -- something similar is used for people who tend to throw blod clots - the filter screens the blot clots so they do not reach the heart or lungs.

http://www.debakeydepartmentofsurgery.o ... ent_id=272

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