Posted "Update on CCSVI" on my blog...

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

Posted "Update on CCSVI" on my blog...

Postby marcstck » Fri Aug 28, 2009 9:06 pm

My original blog post about CCSVI has gotten hundreds of hits, so I thought it appropriate to post an update.

Feel free to critique at will...

http://www.wheelchairkamikaze.com/2009/ ... sease.html
User avatar
marcstck
Family Elder
 
Posts: 560
Joined: Tue Jan 03, 2006 4:00 pm

Advertisement

Postby Ernst » Sat Aug 29, 2009 1:14 am

I have to say really BIG THANK YOU, cause of your blog, which I found beginning of summer. Because of your blog, now CCSVI is known in Finland. So your blog has BIG meaning !
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
User avatar
Ernst
Family Elder
 
Posts: 292
Joined: Sat Nov 15, 2008 4:00 pm
Location: Rovaniemi

Postby ErikaSlovakia » Sat Aug 29, 2009 1:23 am

Hi Marc!
Also BIG THANK YOU from Slovakia!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1117
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby bestadmom » Sat Aug 29, 2009 6:38 am

And a big thank you from 35 miles north of you. Because of your blog I got here too.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby Sharon » Sat Aug 29, 2009 6:46 am

Marc -
1.
Although most of the patients who have undergone the procedure were not severely disabled due to MS, they all suffered from the usual array of MS symptoms, including cognitive dysfunction, heat intolerance, and severe fatigue.

I question whether this statement is true. We know about the people who post on TIMS, but there are others whom Dr. Dake has treated and we do not know about their disability status. And, actually I think most of the TIMS members were disabled...SPMS or PPMS. Jeff and Mel would be the exceptions. I guess it could also depend on your definition of disabled...if your definition requires a wheelchair than you are probably right.
2.
It's very important to keep in mind, though, that nothing has yet been proven, and that all of the results so far reported, as positive as they've been, have only come from two sources

Are your referring to Zamboni and Simka as the reported sources? Dr. Dake has not reported yet. Dr. Simka did replicate Zamboni.

Marc - You are spreading the CCSVI story and that is important. You should have great things to report after the conference in Italy. I have enjoyed your videos of New York...classic!
Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby gibbledygook » Sat Aug 29, 2009 10:38 am

great blog! Keep it rolling.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1408
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby cheerleader » Sat Aug 29, 2009 11:16 am

Thanks for updating on the CCSVI story, Marc. There's alot of curiosity out there.
Think your readers might be interested in your personal connecton vis a vis your own scans and jugular abnormality? Might be of interest to include.

Also, just to clarify the history...Dr. Dake met Dr. Zamboni at the Charing Cross Vascular Symposium in London. He and Dr. Zamboni were scheduled to speak on the same day, the same room, same hour. My Stanford connection, Dr. Cooke, gave Dake the paper about a week before he attended. I didn't know Dake, or know he was also going to London....Dake later told me he made it a point to hear Dr. Z, but never would have if he hadn't received the paper. (I consider all of this more than coincidental.)

I'd love it if you'd consider doing another update after the reports come back from Bologna-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 4939
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby marcstck » Sat Aug 29, 2009 11:42 am

Thanks for the encouraging words, everybody. It's incredible to me (and humbling) that my little blog has reached out to so many. I never expected to get such a substantial response.

Sharon-thanks for your input. When I talked about two sources, I was talking about Dr. Simka, but I didn't want to further complicate the picture by throwing in another Dr.'s name. Perhaps I should, though. Also, I guess your definition of disabled changes are more disabled you become, and from where I'm sitting "very disabled" would include wheelchair use. Maybe I'll amend that, though...

cheer-I didn't include information regarding my jugulars because my neuro and his staff read my blog, and I'm not yet ready to disclose to them. I'm going to wait to see how things turn out with the NIH, and if they determine that the condition is of significance, I can disclose everything to my neuro with the weight of the NIH behind me...
User avatar
marcstck
Family Elder
 
Posts: 560
Joined: Tue Jan 03, 2006 4:00 pm

Postby Arcee » Sat Aug 29, 2009 1:52 pm

Just want to point out that I am on the 'exception' list with Mel and Jeff. In fact, from what I have read, my MS symptoms were less troubling than theirs. I wasn't motivated so much by the symptoms I was experiencing (some of which I only recognized after the jugular switch was flipped, so to speak) as much as by my curiosity, my inability to tolerate MS meds, and my (and my advisers') confidence in the procedure if I qualified. I guess I am trying to say that there is a real range in the patients Dr. Dake has treated.
Marc, when I started telling my friends about what I was doing, they sought to learn more and found your site so thank you for sharing too!
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 4:00 pm
Location: Massachusetts, USA

Postby marcstck » Sat Aug 29, 2009 5:01 pm

Sharon, I made the suggested changes to the article.

Cheer, I definitely intend to post an update when the info comes back from the symposium...

I'm also hoping that the NIH will not only confirm the relevance of my vascular abnormality, but come up with a treatment plan. At that point I will have a virtual "coming out" party...
User avatar
marcstck
Family Elder
 
Posts: 560
Joined: Tue Jan 03, 2006 4:00 pm

Postby Sharon » Sat Aug 29, 2009 6:31 pm

At that point I will have a virtual "coming out" party...

ooh, now that sounds intriguing :wink:

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby prof8 » Sun Aug 30, 2009 12:26 am

I'm sure I am on the exception list too. I'm on meds and have no current symptoms except brief word finding problems and minor tremors. Tysabri has helped get rid of fatigue and cogfog and urination issues. But when I was diagnosed two years ago next week the Mayo Clinic neuro told me I needed to be aggressive because of the black holes. That scared me to death. I am more motivated to prevent things from getting worse just to cover as many bases as possible within reason. Hicy didn't appeal to me because blasting my body with heavy duty poison didn't feel right. And now it's looking like a lot of people are still having MS issues afterward. Vascular problems run in my family and I've had varicose veins removed so this makes sense. So I'm not sure how much obvious change I will be able to report but I hope over time things stay quiet!
User avatar
prof8
Family Elder
 
Posts: 189
Joined: Sun Jul 13, 2008 3:00 pm

Postby Needled » Sun Aug 30, 2009 6:06 am

Marc, I know you'll keep us posted. You’re often in my thoughts. Fingers crossed for good results on your next visit to the NIH.
Prof, December is barely 100 days away! You’ve already started with your reservation plans – before you know it, you’ll be on your way.
User avatar
Needled
Family Elder
 
Posts: 358
Joined: Wed Jan 14, 2009 4:00 pm
Location: Connecticut

Postby whyRwehere » Sun Aug 30, 2009 5:28 pm

Loved the photos.
User avatar
whyRwehere
Family Elder
 
Posts: 907
Joined: Mon Oct 03, 2005 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users