Getting an MRV... Woot woot!

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

Has anybody heard about this fatality?

Postby jbro » Tue Oct 27, 2009 1:18 pm

I'm trying to find out more about this? The guy who wrote this seems pretty credible, and he does not seem to think the death was caused by the surgery itself, but I'd like to see all the facts.
http://www.wellsphere.com/multiple-scle ... ase/786771
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Re: Has anybody heard about this fatality?

Postby cheerleader » Tue Oct 27, 2009 1:33 pm

jbro wrote:I'm trying to find out more about this? The guy who wrote this seems pretty credible, and he does not seem to think the death was caused by the surgery itself, but I'd like to see all the facts.
http://www.wellsphere.com/multiple-scle ... ase/786771


That's Marc...he's on here as marcstck and this was written for his blog last August. Lots happened since then. He's a good guy, search his pen name as author to read his posts on TIMS.
We've talked about Holly (peekaboo) on here many times...
still miss her. Her stroke was unrelated to her procedure.
http://www.thisisms.com/ftopic-7886-day ... ly-30.html
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jbro » Tue Oct 27, 2009 2:54 pm

Thank you, Cheer. Now I understand the facts. I remember reading Holly's posts before I ever posted here. I'm sorry this happened to a well-regarded member of the TIMS forum.

jbro
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Dr Coyle's visit

Postby jenf » Sat Oct 31, 2009 6:44 am

Hi bestadmom,
My appointment with Dr Coyle went well. She thought this theory was worth exploring. In fact, she's considering approaching the head of Neuro to discuss a clinical trial at Stony Brook. I've already signed up for the clinical trial in Buffalo! I also made an appointment with a Vascular doc this Monday.... Very exciting stuff!!
Jen
RRMS - dx 06/09
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Postby bestadmom » Sat Oct 31, 2009 8:47 am

Thanks Jen. My appt w/Dr.Coyle is Dec. 2. I'm excited. I hope they are already planning their trial and I hope it's an intervention. I think they are further along that she let on according to some chatter I heard from other SB people.

Michelle
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Re: Dr Coyle's visit

Postby zap » Tue Nov 17, 2009 2:25 pm

jenf wrote:I also made an appointment with a Vascular doc this Monday....


How'd that go? I might have to have my 2 month followup MRV somewhere local (changing insurance plans at work, and Dake proabbly wont be In Network anymore ....)
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Postby jenf » Tue Dec 08, 2009 6:07 pm

Hi Zap,
Unfortunately, it didn't go anywhere. While the vascular doctor did appear to be receptive to the CCSVI theory, he advised me that he only specializes in the veins from the neck down, and that I would need to consult a Neurosurgeon to look at the veins from my neck up. Whether or not that's true in all cases, I don't know. It was my first visit to this doctor, so we didn't have a preexisting rapport. I am patient, and early on in my disease, so I do have the luxury of time. I did participate in the clinical trial in Buffalo though, and will do anything within my power to assist in furthering this reseach...
Jen
RRMS - dx 06/09
LDN 4.5 mg - 06/09
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Postby bestadmom » Tue Dec 08, 2009 6:47 pm

Hi Jenf,

Sorry to hear the vascular guy wasn't one who works with jugulars. Keep looking for an interventional radiologist.

Have you heard anything more on trials coming from Stony Brook? I had to cancel my appointment from last week.
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Postby topper » Tue Dec 08, 2009 7:08 pm

i went to see my no-ro today. All he could say was no. No to mrv; no to mri; no to ccsvi. He told me it would be ten years at least for ccsvi, i should stay on my meds and let the neuros take care of it. What a douche!!! I told him that I was on betasaron and stopped a long time ago because of the side effects. He told me it wasnt working and to try a new med. REBIF. Looked it up online and its excatly betaseron. He told me because of 2 relapses this year that beta wasnt working and rebif will help. I thought about it for a second and then looked around his office; rebif poster to the left; rebif poster to the right; there i was stuck in the middle... Again. lol
Go Tigers!
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Postby TFau » Wed Dec 09, 2009 6:03 am

10 years! Very insensitive!
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Going to see GP in NC

Postby judipom » Thu Dec 10, 2009 3:18 pm

Hello--I'm going to see my GP tomorrow and ask to get tested. I dislike my neuro's practice so much (he's a pretty good guy, but his staff....) that I'm going to try to go through other avenues. I've been emailing with a vascular surgeon at Duke University, I sent him Dr. Zamboni's letter to the Ontario Paper, he forwarded it to other MDs and this resulted in getting the interest of a radiologist on board. I think if we all keep doing our part--little by little we'll get there. It is really exciting to be part of an internet grass-roots movement!!

I'll keep you posted as to how it goes. Also, could someone tell me what Family Elder means?
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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Postby Johnson » Thu Dec 10, 2009 3:37 pm

Judi, as far as I have discerned, after so many posts, you are not a "newbie" any more, we are "getting to know you". After another number, you become a "family member", and after 100 or so posts, you become a "family elder".

It seems a bit hierarchical to me, but fora can be set up in a number of ways. If I make it to "family elder", I am going to sign up under a new name - because I am only 48, and not yet ready for dotage. Grin.
My name is not really Johnson. MSed up since 1993
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Family member

Postby judipom » Thu Dec 10, 2009 6:32 pm

Dear Grin (grin)--Thank you for the explanation. I can't wait to be a family elder with all the newbies looking up to me. It will be familiar--I'm the 4th of 9 kids and was always one of the "elder kids" in that lifetime. Anyway, if I had to choose a family to be part of, this would be it. Judi (my real name!)
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Postby judipom » Thu Dec 10, 2009 6:57 pm

[quote="topper"]i went to see my no-ro today. All he could say was no. No to mrv; no to mri; no to ccsvi. He told me it would be ten years at least for ccsvi, i should stay on my meds and let the neuros take care of it.

That's interesting. When I sent Zamboni's research to a friend who is a Chief Surgeon at Georgetown, Univ. she felt that if it had merit it would probably catch on pretty quick.

My father who is a retired psychiatrist would often talk about the personalities of the different specialists. Surgeons, he would note, were very confident, assertive people. If it comes down to a battle between specialists--I'll throw my hat in with the surgeons.

I once asked my neurologist (of 10 years who closed his practice without word) "If I have an autoimmune disease, why do I see a neurologist and not an immunologist--He looked at me and said "that's a very good question, basically the neurologist don't want to lose their MS patients." He, by the way, was an excellent doctor--I just don't know what happened to him.

Looking for a new neurologist, I saw one, who said to me "Do you want your son to be changing your diapers when he's 13 years old?" as a way to convince me to get on the drugs.

Just some musings on the topic. I have a lot of confidence that things are going to go well for us MSers.

Judi
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Quotes

Postby judipom » Thu Dec 10, 2009 6:59 pm

How do you do that thing where someone elses' post is put in white? Judi[/quote]
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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