Marc (Wheelchair Kamikaze) is "going for it"

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

Postby marcstck » Sun Mar 07, 2010 10:40 pm

Thanks for all the words of encouragement and support, folks. They are very, very much appreciated.

We've had some lively discussions on the subject of CCSVI here at TIMS, which have provoked some very thorough examinations of the theory and the procedures used to address it.

I have truly valued everybody's input, and I'm glad that my input has been valued as well.

Thanks again, and of course, I will definitely keep everybody updated. I wish the best to all of you...
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Postby costumenastional » Mon Mar 08, 2010 12:34 am

You surely deserve the best outcome one can get.

You are in our thoughts.

Good luck.
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Postby thisisalex » Mon Mar 08, 2010 5:41 am

you must fight hard Marc! :)
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good good luck

Postby coin » Mon Mar 08, 2010 6:04 am

Good good luck also from germany....I was truly moved by your words and just hope and wish the best for your wife and you!
And am very much looking forward to reading from you again!!!!

and i just loved the line "Surrender is not an option" sounds a bit like
" resistance is futile";-))

best regards from Munich

COIN
-----------------------------
Husband MS since 2001
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Postby jr5646 » Mon Mar 08, 2010 6:38 am

Congrats Marc... I'm pulling for you, man! I was never quite sure if you were an advocate of ccsvi treatment or not... always thought maybe you were on the fence?? I guess we all know now :D

Lets just leave it at "hoping for some much needed relief" of this crappy hand we've all been dealt.

I'm taking the leap of faith with you and am scheduled for the week of April 19th. Testing and hopefully (ultimately) treatment - FINALLY - !!!!!! Not enough exclaimation points to express my elation...

Also, I would love to hear the background of how this wonderful Dr. came on the scene (hint, hint, hint to the ANGEL who referred me)..

Here is to healing !!
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Postby Vhoenecke » Mon Mar 08, 2010 7:07 am

Mark had said that if his symptoms were less he wouldn't do the procedure. I have 'less' symptoms and I am doing the procedure. I think that the procedure will stop the progression so I don't think that I would want to get any worse then try to get improvement. This procedure really works on people like me who don't have bad symptoms other than numbing and extreme fatigue. The results of someone with bad progression will be difficult to study. I don't want to get to the point of going into the wheelchair. I want to stop this disease in its tracks. All the best to you Mark in your quest for wellness.

Val
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Postby TFau » Mon Mar 08, 2010 7:13 am

I wish you the best Marc! I will read your reports with keen interest.
Theresa
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marc's liberation...

Postby aliyalex » Mon Mar 08, 2010 7:41 am

hi marc.

i am pulling for you and for me. (I have only cervical lesion/s as well.) i sent you an email, but didn't hear back. Do you get too many to respond to?

thank you for initiating a ny doc.
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Postby tzootsi » Mon Mar 08, 2010 8:07 am

Marc, your blog is one of the most thoughtful and interesting I've come across. Whatever variant of ms type condition you have, I'm hoping that Dr. Scalafani can help. It's very encouraging that someone of his caliber is now in the pool.
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Postby gibbledygook » Mon Mar 08, 2010 9:31 am

Good luck, Kamikaze!
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 prairiegirl » Mon Mar 08, 2010 10:39 am

Best wishes and hopes for a great outcome for you-- very exciting!
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Postby cheerleader » Mon Mar 08, 2010 11:15 am

Marc-
You know Jeff and I are pulling for you. Whatever is going on or isn't going on in your venous system, we know you will tell the world your situation in your always honest, eloquent and moving way.

(PS- To those wondering where Marc "stood" on CCSVI, it really doesn't matter.... I don't think you need to be an "advocate" for CCSVI to get your veins checked...if you had vasculitis instead of MS, you'd want to know. If you had Hughes Syndrome or Lyme or a myriad of differential diagnoses, you deserve to know. The fact that Marc is coming forward and writing about his experience is pretty brave. He wants some answers...here's hoping he gets some.)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Johnnymac » Mon Mar 08, 2010 12:23 pm

Best of luck Marc, I hope you finally get some well deserved answers
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Postby bestadmom » Mon Mar 08, 2010 1:31 pm

Marc,

You know I'm rooting for you.

Angel
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Postby CRHInv » Mon Mar 08, 2010 2:37 pm

I am thinking of you and your wife. I hope this provides some answers.
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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