That is a one bad venous reflux caused by destroyed valve.

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

Postby LR1234 » Mon Mar 22, 2010 3:38 pm

I am so sorry Rici, I hope that we can learn a lot from your case but most importantly I hope they fix you so that you can feel better.
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Postby Johnson » Mon Mar 22, 2010 3:58 pm

Rici,

I seem to remember Dr. Schelling (or Dr. Sclafani?) wrote something about the reflux affecting the hypothalamus veins - and the hypothalamus, which regulates body temperature. As you wrote - "MS Turbo"

Cold sweats at night, the febrile shivering, etc. are something that has plagued me since long before my first MS "symptom". I am sorry for your new problems.

Folks, Rici needs some help to pay for his operation. I know that we all need help, but if everyone could something, Rici could be helped out of his new nightmare. He is amongst the first pioneers, and the doctors have learned, and are learning from what happened to him. This means that we might not have the same bad experience.

If you can help, this is the information for Rici's bank - can also be found here - Rici's website

Bank: Deutsche Bank PBC SA :

SWIFT CODE DEUTPLPK IBAN PL
(if your bank asks for BIC code, it is DEUTPLPK)

Account #: 62 1910 1048 2944 0278 6599 0001

Full Name: Wiercinski Ryszard
Address: Bociania 17
City: Bialystok
Province/State: Podlaskie
Country: Poland
Purpose of Remittance : Gift/Treatment


EDIT - Rici has just informed me that the bank charges $11 for each transaction, so sending him $10 will actually cost him $1! Better to send 20, or 50, or a 100 bucks
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Postby HappyPoet » Mon Mar 22, 2010 6:37 pm

Rici,

I'm so sorry your MS is now TURBO MS -- you've coined a new term.

You are the BRAVEST CCSVI pioneer.

How was the interview? Can you tell us about it?

~HP
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Re: That is a one bad venous reflux caused by destroyed valv

Postby Rici » Mon Mar 22, 2010 11:45 pm

frodo wrote:Hi again Rici,

Have you tried to contact Ashton Embry at Direct-MS? Their society has a fund for research that could be applied for cases like yours.
www.direct-ms.org
Regards.


Hello Frodo
Written. Here's the answer :

"Ryszard,

I am sorry to hear about the complications from your CCSVI surgery. Unfortunately our charity is for research funding and cannot offer you any support (other than moral) for your required surgery. Good luck.

All the best,

Ashton"


Regards
Rici
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Postby Reytan » Tue Mar 23, 2010 8:22 am

Rici is the first CCSVI patient in Poland and one of the pioneers in the world. Doctors and we patients have already learned a great deal out of his experiences, both good and bad. “Moral support” is always nice and it goes without saying, but I am afraid he needs more than that to get on his feat again. Maybe instead of donating millions to all kinds of charities and organizations we should send those contributions to individuals who actually desperately need help? Wouldn’t it do more good to all of us in a long run?
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Postby gibbledygook » Tue Mar 23, 2010 9:58 am

How much money needs to be raised?
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,
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Postby Rici » Tue Mar 23, 2010 11:49 am

gibbledygook wrote:How much money needs to be raised?

The removal of the deformated vein and valve regeneration costs about 40.000 usd. Half of that amount I've already got. Thank you very much for your question.
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Postby EnjoyingTheRide » Tue Mar 23, 2010 1:11 pm

Rici,

I am so sorry to hear of your situation. Can you tell me, how long after your procedure before you noticed the worsening symptoms?

Thanks.
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby Johnson » Tue Mar 23, 2010 2:43 pm

Reytan wrote:Rici is the first CCSVI patient in Poland and one of the pioneers in the world. Doctors and we patients have already learned a great deal out of his experiences, both good and bad. “Moral support” is always nice and it goes without saying, but I am afraid he needs more than that to get on his feat again. Maybe instead of donating millions to all kinds of charities and organizations we should send those contributions to individuals who actually desperately need help? Wouldn’t it do more good to all of us in a long run?


Yes! Yes! Yes! We must help our brother Rici, and all of our other brothers and sisters too. I cannot imagine hoping for improvement, but actually ending up much worse off, as has happened to Rici. If 200 people could send Rici $100, or 400 people send $50, or ..., Rici could be helped. After that, what about all the people that can never afford to have the treatment? If we, in the wealthier situations, could give up one new pair of shoes, or one dinner out, or 5 CDs, we could help so many.

We, who know what this MS/CCSVI is like first hand must help. Remember that if you send money to Rici, $11 is charged by his bank for every foreign deposit, so if you send $10, it will actually cost Rici $1. Send $21 if you want to give $10. Send $111, if you want to send $100.

You might have some trouble with the bank account # if sending an International Remittance. In the space that asks for bank account #, this is the proper way to write it - PL62191010482944027865990001 (it took me about 45 minutes of messing around to get that right). It takes two days for the transfer, Rici is going to let me know that the number is correct on Thursday (when the money should be there). I will post the proper way to do it here on Friday, if anyone is having trouble.

I also thought that it might be good to set up an account to receive donations, which could then be forwarded to Rici as a lump sum, and save the transaction costs of $11 each going to the bank. I know that these kinds of accounts are set up all the time for people and families who need help, but I have no idea how to do it. Does anyone else know? I think that it must be an "In Trust" account to be sure that nobody is making off with the money. After Rici is helped, perhaps a foundation to help others can be set up? I often think about people who have no hope of relief because of a lack of money. How can I be happy to be liberated, when others know only despair?

Sorry about the tear-jerker, it's just the way I feel. Synchronistically, I received an e-mail this AM with these thoughts;
You cannot do a kindness too soon because you never know
how soon it will be too late.
--Ralph Waldo Emerson, American philosopher (1803-1882)

----------------------------------------------------------

We should give as we would receive, cheerfully, quickly,
and without hesitation; for there is no grace in a benefit
that sticks to the fingers.
-- Seneca, Roman statesman & philosopher (4 B.C.?-65 A.D.)


OK, I'm done...
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Postby eric593 » Tue Mar 23, 2010 2:58 pm

Doesn't Poland have a subsidized health insurance system?

Why can't Rici go to any vascular surgeon under the regular healthcare system in Poland and be treated for this problem that has arisen? It doesn't sound like it requires a CCSVI specialist as this goes beyond CCSVI theory and treatment to an issue that any vascular surgeon could deal with.

I'm a little confused why Rici would need to pay for care for this personally.
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Postby Johnson » Tue Mar 23, 2010 3:14 pm

eric593,

I would think for the same reason that the medical system did not pay for original CCSVI operation - it is not a recognized condition, and the surgery that Rici now needs is also experimental, as far as I know. As I understand it, he must go to Israel for the new surgery, because no one else can do it.
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Postby Rici » Tue Mar 23, 2010 3:57 pm

eric593 wrote:Doesn't Poland have a subsidized health insurance system?

Why can't Rici go to any vascular surgeon under the regular healthcare system in Poland and be treated for this problem that has arisen? It doesn't sound like it requires a CCSVI specialist as this goes beyond CCSVI theory and treatment to an issue that any vascular surgeon could deal with.

I'm a little confused why Rici would need to pay for care for this personally.

Unfortunately, they do not perform jugular vein transplantation in Poland yet or anywhere in the world for that matter. Moreover, nobody in Poland would undertake such a procedure. It was very hard to find anybody to perform that operation. Valves have never been regenerates in jugular veins either. The procedure I will undergo will be performed for the FIRST TIME IN THE WORLD.
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Postby eric593 » Wed Mar 24, 2010 12:52 am

Thanks for the explanation and I wish you the very best, Rici.

I'm still trying to understand, forgive my lack of knowledge. I have only done a little research on the veinous drainage system - I see that many people seem to live with IJ valve incompetence without incidence and that it seems to be a somewhat common occurrence in the healthy population. If it's common, are there no treatments for it then?

Also, if the jugulars are only employed while supine, could it help you to use incline bed therapy to avoid the supine position, so that your body does not use the jugulars very often for drainage but will employ the vertebral venous system for drainage instead that is triggered when in the upright position?

edited to add link:

http://stroke.ahajournals.org/cgi/conte ... ct/41/1/67
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Postby Johnson » Wed Mar 24, 2010 1:15 am

eric593 wrote:Thanks for the explanation and I wish you the very best, Rici.

I'm still trying to understand, forgive my lack of knowledge. I have only done a little research on the veinous drainage system - I see that many people seem to live with IJ valve incompetence without incidence and that it seems to be a somewhat common occurrence in the healthy population. If it's common, are there no treatments for it then?

Also, if the jugulars are only employed while supine, could it help you to use incline bed therapy to avoid the supine position, so that your body does not use the jugulars very often for drainage but will employ the vertebral venous system for drainage instead that is triggered when in the upright position?


Good questions.

Andrew K. Fletcher might answer the inclined bed question. Does a 7 degree angle close down the jugulars? Do they share the load with the VVs then?

I think Rici's problem is not just the ruined valve, but his right jugular is 3x as wide as normal. I get the idea that it is the combination that makes it so drastic in his case. You can see the reflux here - http://www.rici-ms.com/. I believe others have had the valves ballooned (maybe stented?) without such an issue.

We will see a lot of weird stuff as the CCSVI unfolds, I would bet.
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Postby gibbledygook » Wed Mar 24, 2010 2:42 am

Inclining the bed might well be worth a shot. I imagine the gravitational pull might prevent some of the reflux. However I find it very odd that a wider than normal jugular creates worse reflux so what the hell....
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,
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