CCSVI - get diagnosed ASAP

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

CCSVI - get diagnosed ASAP

Postby ajpapasta » Thu Dec 31, 2009 3:53 pm

How can I get lined up to see Dr. Dake ? - I have been diagnosed with MS since 1993 and firmly believe in CCSVI and the treatments - I have dizziness and pain when I lay down on my left side, and then when I lay on my right side it goes away almost immediately - I get dizzy when the brakes get hit quickly, when I look up at the sky etc. I have seen real top notch MS neurologists and have been on all the MS Drugs, including trial drug (Zenapax) and am currently on Tysabri. My MS has improved immensely with Zenapax, but dizziness and fatigue go unchanged and ignored by MS doctor. I am tired of being dizzy and want to see a Vascular Neurologist or Vascular whatever to get tested ASAP. I understand more studies in Buffalo and elsewhere are going on, but I have done the study circuit a few times now and I know how long they take. Can anyone provide simple contact protocol to see Dr. Dake or anyone else in the country. I have contacted Dr. Haacke in Detroit and he is gearing up for a study/patients in January, so I will continue to pursue that if nothing else.

Angelo Papastamos, Salt Lake City, Utah 801-633-7712




b]1. What is CCSVI? [/b]

Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging.

[b]2.How is it related to MS? [/b]

Every MS patient tested so far has it. Over 500 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Forty five MS patients in the US have it. They were tested by Dr. Michael Dake. Six clinically defined MS patients and 3 probable MS patients have it in Poland. They were tested by Dr. Marian Simka. 1700 patients and controls are being tested for it by Jacobs Neurological Institute at SUNY Buffalo.

None of the normal patients (controls) tested have it. None of the patients with other neurological diseases have it. Only people with MS.
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Postby shye » Fri Jan 01, 2010 5:03 pm

he ajpapasta,
check out a number of the threads here--re Dake and Dr Simka(Poland)--Dr Simka in poland is the only place you can currently get treatment.
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Postby whirlaway » Sun Jan 03, 2010 5:14 pm

Hello,

Your post states, Every MS patient tested so far has it. Over 500 MS patients in Italy have it. I've had Ms since 1982 and two weeks ago I had an MRV and there was no narrowing in my viens. Where do I go from here?
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Postby SaintLouis » Sun Jan 03, 2010 5:31 pm

I'll chime in my first thought and hopefully someone with more knowledge will come along and provide you a complete answer. My first thought was 1) Was your MRV read by someone who really knows what they're looking for and 2) If your veins aren't narrowed but instead you have a valve or membrane issue causing the reflux...I'm not sure that would show on an MRV...?

Just 2 thoughts. Like I said, this response will bump up the question and maybe you will get a more solid answer.
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Postby ozarkcanoer » Sun Jan 03, 2010 5:34 pm

whirlaway,

My advice is to wait and see what happens with the clinical trials and clinical studies at Buffalo, UBC, Stanford and Detroit. Maybe these studies won't show 100% of MSer's with CCSVI. Maybe these studies will recommend specific protocols that must be followed to find CCSVI. Remember that Dr Zamboni didn't use MRV to find CCSVI but doppler ultrasound. These are early days.

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Postby bestadmom » Sun Jan 03, 2010 8:49 pm

An mrv is not a diagnostic tool for ccsvi. The doppler is, as is the venogram which is done by an interventional radiologist.
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Postby MrSuccess » Sun Jan 03, 2010 11:08 pm

can you say where you had your mrv ? If you are going to post information that disputes CCSVI stenosis , more information would be greatly appreciated .





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Postby CureIous » Sun Jan 03, 2010 11:16 pm

SaintLouis wrote: If your veins aren't narrowed but instead you have a valve or membrane issue causing the reflux...I'm not sure that would show on an MRV...?

Just 2 thoughts. Like I said, this response will bump up the question and maybe you will get a more solid answer.


Bingo. Valves, membranes, can't see em on an MRV.
Hence my contention that the faster we get UT the better. MRV's are limited and easily misinterpreted. Even the whole 3D is a bunch of hogwash, it's "simulated 3d", you are viewing it on a 2D screen, 4D is better too like the one Dake did, if you make a movie out of the images you can watch the bolus of ink go up then back down again. I'll be posting up an MRV very soon of a "failed" testing that I feel was misinterpreted. Then again whadda I know anyways lol.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ErikaSlovakia » Mon Jan 04, 2010 1:40 am

Maybe I did not mention Valsalva maneuver during your MRV
I had problem with my valve as well.
Dr. Zamboni mentions Valsalva in his study. I had to do Valsalva maneuver during my MRV more times - you stop your breath and you must push your air down into your belly. It can make you little bit dizzy after couple of times. They always tell you when you may start to breathe again.
I do not know if you do it in the USA while your MRV, moreover Haacke`s protocol is important!
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
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Postby whirlaway » Wed Jan 06, 2010 5:39 pm

Mr Success,

I had my MRV in Providence RI, if that is what you mean. I was a MRV of the Jugular.
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ccsvi-mrv-neg

Postby leetz » Wed Jan 06, 2010 6:14 pm

Whirlaway and all other's......I got an MRV yesterday in upstate NewYork..I am a 4.5 on EDSS scale evaluated by neurologist...a Neuro-radiologist read my result's and was instructed for what to look for...it showed NOTHING wrong...I DO NOT BELIEVE THIS TO BE TRUE and I am going for a second opinion by a vascular-radiologist whom is familiar with CCSVI---I will not faulter---I WILL NOT GIVE UP!!!! It is like God is telling me not too, to keep on searching until I get the answer..I know I have CCSVI---it makes sense to me...so no matter what I will pay for every test under the sun until I am PROPERLY DIAGNOSED!!!THAT IS MY WORD TO EVERYONE ON THIS FORUM!!!

BY THE WAY:MRV test was done in 3d head and neck on a 1.5T machine...hoping to get a CT scan as well as Doppler...fund raiser anyone????LOL

IN all honesty do not give in...will report more next week!!!!

Wonderful GP and hopefully Interventional Radiologist....pray because I sure will!!!!!!!


LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby markus77 » Thu Jan 07, 2010 6:41 am

i think it may be better to get a vascular surgeon to look at the results. it is their field you are dealing with not a neurology. they are trained in issues such as this and are much more familiar with what to look for. neorologists have no training in this.
STAY REAL MY FRIENDS

dx 1989, spms
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Postby whirlaway » Thu Jan 07, 2010 6:19 pm

It was a vascular surgeon who read my MRV and he told me that there was no narrowing in my jugular.
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