Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby Loobie » Sat Apr 25, 2009 9:02 am

I have emailed all of this to a doc. at Ohio State and hadn't heard anything. To be truthful, I had been waiting to see Jeff's results so I could start really pushing. This all might be really timely for me as I may have to get off of Tysabri. Although Biogen vetted my insurance twice, and so did the specialty pharmacy, the exact same thing happened as last time. Initially they told me $0 out of pocket, and then give me three doses and come back and said "just kidding, it's $486/dose". So now I've had 2 major insurance companies do this. So I threatened suit and got a 'manager' since I had the girls name and last initial (that's all they'll give you) that told us that it was $0 and they are going to pay for my last two doses instead of me owing over $900 for just two infusions. However, I got a sympathetic guy on the phone from Anthem (he has CP) and we talked and talked and he finally said he sees something that doesn't look quite right 'on my screen' that he is going to check out. In the meantime I'm going to be calling them back and letting them know that I'm recording our conversations. Even if they prove that they just made a mistake, it was theirs, not mine, and I won't pay for those doses when I had other alternatives. So I'm trying to figure out how to push this out of my mind and enjoy the weekend since this all happened (like the last one also) at 5:00pm on a Friday. Convenient huh? So I'm just going to be real patient and see where this goes. Who can afford that for the rest of their lives? I'm not like this, but I feel like suing them for a huge amount and they can settle with me for say 50 or 60 free doses. This has become unbelivable and I even thought about trying to get in front of a news camera. So in 6 doses of Tysabri I'm out $5,526 dollars, according to my insurances. I told them I'm not beyond becoming a sympathy figure 'poster boy' for getting screwed by insurance companies and get on TV. It almost made me puke last night I was so pissed.

Sorry for the sidetrack, it just happened!

But back to CCVI, I even have thought of flying out to Cali and going to Cheer and Jeff's doc. since he's obviously going to have one under his belt and won't need to decide if it's something he wants to do.
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Postby chrishasms » Sat Apr 25, 2009 9:05 am

Can somebody please mail me the studies of Dr. Z and anything else that may be pertinent to getting treated.

I need to send them to Dr. Kerr at Johns Hopkins.
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Postby chrishasms » Sat Apr 25, 2009 9:15 am

BTW, I have a couple of little, little, Cherry Angiomas that appeared when? Right about the time I was diag'd with MS.
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Postby Artifishual » Sat Apr 25, 2009 9:16 am

chrishasms wrote:Can somebody please mail me the studies of Dr. Z and anything else that may be pertinent to getting treated.

I need to send them to Dr. Kerr at Johns Hopkins.



dude this is all i sent to my dr for now. i wanted to see how he reacted, also waiting to see what is happening with dr Z's up coming reveiws.

http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

this ssemed like the spark that started this fire?
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Postby Artifishual » Sat Apr 25, 2009 9:19 am

i have a couple of veins that poke out badly on my left leg that showed up about the same time as dx. one protrudes out over 1/2" especially when i stand up.
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Postby Lyon » Sat Apr 25, 2009 9:25 am

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Last edited by Lyon on Sat Nov 26, 2011 1:35 pm, edited 1 time in total.
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Postby mrhodes40 » Sat Apr 25, 2009 9:27 am

CHris, Bob has it!

I put every single paper related to this work in that thread.

That having been said, Dr Kerr can't do dopplers or venograms, he'd have to refer you to the vascular department for all that only IF he decides it is worthwhile. It'll be interesting to see the response you get.

Chris come back after you've read that post and tell me if it made the idea clear to you a relative newcomer.......I've been dying to know if it accomplished that goal
marie
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Postby AndrewKFletcher » Sat Apr 25, 2009 11:08 am

Artifishual wrote:i have a couple of veins that poke out badly on my left leg that showed up about the same time as dx. one protrudes out over 1/2" especially when i stand up.


How many more people have noticed varicose veins appearing prior to or even during the onset of early ms symptoms? Unrelated? I think not!
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Postby cheerleader » Sat Apr 25, 2009 11:38 am

Hey guys-
Go to Marie's thread and print/e-mail the abstracts and papers she has links to....this is the most recent research on the venous connections to MS. She's done a fabulous job compiling the info for all of us-

CCSVI Research

It was the blood spots on Jeff's calves at diagnosis that started me on this path 2 years ago....those petechiae and his really weird blood numbers: high SED rate, high liver enzymes, low lymphs and lots of inflammation. His neuro said it had "nothing to do with his MS" and to "ask his GP about it." I couldn't believe that it was unrelated to his first big flare...so that's when my research started.

Jeff's neuro does not know we are going to Stanford on Monday for testing. He just saw her, she commented on how well Jeff is doing, did the reflex tests, asked him if he was still taking his copaxone (yes) and if he wanted any new meds for pain relief (no, thanks), and sent him on his way. He is her "most successful MS patient." (gee, thanks...he's still sick.)

Neuros will not be interested in this research. Again, neuros will not be interested. They will say the vascular connection has been investigated before, and nothing was found. What they do not know is that doppler technology was not previously invented to see blood flow from the brain and spine being blocked in the veins. Venographies have not been done before on MS patients. 7Tesla MRIs are brand new. Chronic cerebrospinal venous insufficiency is a new discovery made just last year by Dr. Zamboni.

If you want to pursue this yourselves find a vascular department willing to read the research. Or wait a couple of days after I talk to our doc, he may have some more suggestions. This research is not going away...it is only beginning. The thing that is different from this and all of the pharma research is that the vascular connection has found something mechanical in the MS body that explains the inflammation and immune response. It is not about fixing a "broken" immune system...it is about removing physical blockage in the veins, and letting the body heal from the venous insufficiency. There will be no big drug $, no fancy clinical trials, no important neurologists making very important pronouncements. IMHO this is a blue collar fix....remove the stenosis from the veins, keep your eye on the venous system and heal. Neurologists are not going to be interested.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sat Apr 25, 2009 12:45 pm

There will be no big drug $, no fancy clinical trials, no important neurologists making very important pronouncements. This is a blue collar fix....remove the stenosis from the veins, keep your eye on the venous system and heal. Neurologists are not going to be interested


Right on.
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Postby zap » Sat Apr 25, 2009 12:55 pm

Man, now that I think about it, I think I noticed my hands and maybe feet too were far "veinier" than usual back when I was symptomatic ... huh. And I was really drawn to that "venous pressure" theory.

Any connection between the "hot bath test" for MS and this theory?
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Postby cheerleader » Sat Apr 25, 2009 3:27 pm

zap wrote:Any connection between the "hot bath test" for MS and this theory?


Zap, good point! The hot bath test affects both the neuronal and venous systems in MS. Hot water interrupts neuronal transmission, exacerbating MS symptoms in some. Before my husband was officially dx, he went in the spa at 101f to relax what we thought was a "pinched nerve." He could barely get out...that's what got him to the doc.

Hot water opens up the veins and is one vasodilator I wouldn't recommend...hubby loves his spa soaks now at 95f. Really helps his leg spasms, and not too hot for him. Folks with varicose veins are told not to use hot tubs or bathe in very hot water...because it can increase venous pressure and create more swelling and pain. If there is blockage in the veins, very hot water would only make things worse.
AC
Last edited by cheerleader on Sat Apr 25, 2009 4:11 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Sat Apr 25, 2009 3:46 pm

Thanks Cheer for all your input into the vascular connection.
If you want to pursue this yourselves find a vascular department willing to read the research. Or wait a couple of days after I talk to our doc, he may have some more suggestions. This research is not going away...it is only


I will be interested to hear what the doc has to say.
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Postby zap » Sat Apr 25, 2009 6:18 pm

Huh - not every time, but sometimes, when I take a really hot bath my heart just POUNDS - not particularly fast, but HARD.

(I often am not showing many signs of MS when I go into the neuro, usually in the morning hours - I half jokingly suggested they should really examine people at the end of the day - or better, after a hot bath, but they didn't care for the idea)
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Postby Terry » Sat Apr 25, 2009 8:03 pm

Zap,
I have this too.

I noticed my hands and maybe feet too were far "veinier" than usual


I have it mostly in my hands but occasionally in my feet. My hand veins will be protruding and if I lift them over my head, they flatten, back down and out they go again.
Not all the time, either- seems I usually notice it in the afternoons.
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