Back home, safe and sound.

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

Back home, safe and sound.

Postby marcstck » Thu Mar 11, 2010 4:38 pm

Hey, everybody, I'm back home after my CCSVI procedure performed by Dr. Sclafani. I'll hold off detailing the results until I myself have a clearer understanding of them, except to say that several abnormalities were found that couldn't be fully addressed during the procedure.

With all of the conversation and give-and-take on this forum, it's sometimes easy to forget that this is all brand-new stuff, uncharted and unproven territory for medicine. The truth is this is all very experimental, and the techniques and tools used to treat CCSVI will need to be refined if and when proof of the theory mounts. The current procedures and tools used were all designed for use in the arteries, and many are actually less than ideal for venous interventions.

The procedure I underwent lasted about 5 1/2 hours, and although not painful, was extremely tiring. While I am pleased that verifiable abnormalities were found, it's very frustrating that they couldn't be readily addressed.

I will go into more detail after I consult with my doctors, and after Dr. Sclafani consults with Zamboni et al. I can't praise Dr. Sclafani high enough, he's truly an outstanding human being and physician.

Thanks for all the support and words of encouragement, they were appreciated beyond words.
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Postby Lyon » Thu Mar 11, 2010 4:42 pm

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Last edited by Lyon on Mon Nov 21, 2011 6:07 pm, edited 1 time in total.
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Postby SCGirl » Thu Mar 11, 2010 4:48 pm

I know it is frustrating for you. I cant imagine what you must be going through, though I am glad to see you posting again. As someone who is scheduled for a venogram in a few weeks, I am anxious to hear your story. Best of luck.
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Re: Back home, safe and sound.

Postby Cece » Thu Mar 11, 2010 4:49 pm

marcstck wrote: Thanks for all the support and words of encouragement, they were appreciated beyond words.


Lots of people are pulling for you here.

I still can't believe it but I'm scheduled with Dr. Sclafani in May. It has been good to read your very positive endorsement of him.
Last edited by Cece on Thu Mar 11, 2010 4:55 pm, edited 1 time in total.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby happy_canuck » Thu Mar 11, 2010 4:51 pm

Thank you Marc for all you do! My stenosis may not be fully treated YET either, but I hope more techniques will be developed.

Stay well.

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby TFau » Thu Mar 11, 2010 5:22 pm

Thank you for reporting back to us Marc. I'm glad that you're home safe and sound. Sorry that they couldn't readily address everything for you today! I'm looking forward to reading more when you're up to it.

Theresa
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Re: Back home, safe and sound.

Postby larmo » Thu Mar 11, 2010 6:06 pm

Cece wrote:
marcstck wrote:I still can't believe it but I'm scheduled with Dr. Sclafani in May.


I'm scheduled for the procedure on the 12th. Perhaps I'll see you there. This sure beats flying to Poland :) $100 on a passport, I wish I had that $100 back.
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Postby ozarkcanoer » Thu Mar 11, 2010 6:25 pm

Thanks !! With Dr Sclafani talking to Dr Zamboni, maybe some new ideas will bubble up to help you ! We are all following your story. Sleep well tonight.

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Postby cheerleader » Thu Mar 11, 2010 7:18 pm

thank you, Marc-

I agree with Marie:
Every person that steps up to be in this "hopeful limbo" adds something for every other person


5 1/2 hours of lying still on the table, being poked and prodded, isn't easy for anyone. Certainly not for you. Hoping your spirit of adventure brings more answers.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby L » Thu Mar 11, 2010 8:25 pm

Sorry to hear that it wasn't straight forward.
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Postby Sharon » Thu Mar 11, 2010 8:35 pm

Marc -

You have invited so many outsiders to go along with you on your "wheelchair journey" with MS. Thanks to you, hundreds if not thousands of MS'rs have a better understanding of not only CCSVI but also learning to understand how to live.

Be well, my friend
Sharon
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Postby MrSuccess » Thu Mar 11, 2010 10:49 pm

that's a long day , Marc. Get some rest . All are looking forward to your report.

I'll mark you down as another brave pioneer. :!:




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Postby flipflopper » Thu Mar 11, 2010 11:12 pm

Marc,

I've been reading your posts on thisisms since you joined in 06 and read everything you have tried to slow down your progression. For years, I've hoped to read that you found something helpful. I truly hope I will be able to read something along those lines in the near future.
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Postby hope410 » Fri Mar 12, 2010 12:29 am

Glad to hear you made it through the procedure in good stead. I too have been reading of your trials over the past while.

Anyone who has read this forum is well aware that the treatments used to address the stenoses were originally designed for arteries that are very different structures than veins. So I don't think it comes as any surprise to anyone considering this that the treatments may not work, or may come with their own risks/problems. I'm sure you were also aware of it before undergoing any procedure if you read this forum often.

I too look forward to hearing the rest of your experience, but am glad as well that you are now "on the other side" and can now report on any possible effects of treatment.
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Postby costumenastional » Fri Mar 12, 2010 2:09 am

Marc, i was waiting in agony for you to return safe and sound.

Please, while your preliminary statements sound very promising, take your time to rest and straight your mind up.

We are confident that you have a lot of useful and interesting information to share down the road.

For now, i can only wish you that recovery will take place full speed.

Thank very much for taking this further and further. You did the right thing for yourself and the rest of us. At least, this is my conclusion since there were abnormalities found.

One more time, thank you.
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