My CCSVI Diagnosis and (hopeful) Treatment

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

Postby Cece » Tue Mar 16, 2010 7:42 pm

Wishing you all the best tomorrow!!
"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 EnjoyingTheRide » Wed Mar 17, 2010 6:16 pm

My procedure went well. Found stenosis is both jugulars and in the azygos, and successfully ballooned them. A bit tired now, so will blog more details soon.
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby prairiegirl » Wed Mar 17, 2010 6:19 pm

Great to hear things went well-- hope for the best of outcomes with your recovery and look forward to hearing more news. Thanks for posting!
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Postby ozarkcanoer » Wed Mar 17, 2010 6:26 pm

:D Fabulous !!!! I hope this frees you from MS !!!
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Postby bluesky63 » Thu Mar 18, 2010 4:51 am

I loved discovering and reading your blog. :-) I hope this makes a major difference for you -- sending you all the best positive thoughts! :-)
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Postby Cece » Thu Mar 18, 2010 11:25 am

Fantastic!!! I have to admit, I get teary-eyed whenever stenosis is found and treated, whether I'm close to the person or not. It could be such a life-changer.
"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 EnjoyingTheRide » Fri Mar 19, 2010 4:30 pm

I just posted a fairly complete accounting of my liberation experience, at www.enjoyingtheride.com. This is essentially non-technical.

I will make another, more technical post soon that goes into more of the details of what Dr. Sclafani found, and what he did to treat it. First I'll need him to proofread that post though.

Home now, and quite comfortable. What an amazing week.
Last edited by EnjoyingTheRide on Fri Mar 19, 2010 5:11 pm, edited 1 time in total.
Mitch
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Postby cheerleader » Fri Mar 19, 2010 4:59 pm

Great post, Mitch. Jeff understands the sandwich comment...I'm sure your wife did too :)
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby TFau » Fri Mar 19, 2010 6:32 pm

Hi Mitch:

I just read your blog - what a wonderful writer you are!

It's wonderful that Dr. Sclafani is a non-reckless maverick. I think there are a few surgeons in Ontario who would like to do that, but something is stopping them - I know of one that would do it for free, but he decided against it. It must be that their work wouldn't be insured.

Anyway, I look forward to the day that my husband is treated, and I look forward to hearing how you're feeling in the coming months!

Theresa
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Postby DizzyLiz » Fri Mar 19, 2010 7:05 pm

Mitch,
How thrilling to read such a well written description of the procedure and your excellent opinion of Dr Sal, in your website. Thank you for all the info and especially enjoyed the pictures! Am travelling there soon too and wish you the best for the future! So fortunate to have peple like Dr S and Holly - and hopefully more, soon.

DL
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Postby EnjoyingTheRide » Sat Mar 27, 2010 12:10 pm

Thanks everyone for your kind words and well wishes.

I have written about what this procedure was like for me (Log Entry #6), and details of what was found and how it was addressed, with images (Log Entry #7).

Dr. Sclafani does good work.

Check out these log entries at www.enjoyingtheride.com
Mitch
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sclafani treatment on 24 march

Postby jak7ham9 » Sat Mar 27, 2010 1:25 pm

Hi mitch. enjoying the ride. i had treatment the 24th .I pretty much agree with everything in your blog experience wise. I was the first to get new cutting balloon for pesky valve. I am just waiting to see what changes occur too. Scalfani and holly are super though. Yes king's Co needs new general staffing ...island time. We made many jokes that the cafeterias staff would really be much better at running the hospital as they were supremely efficientGood luck i'm waiting for improvements too B
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Postby hopeful2 » Sun Mar 28, 2010 12:22 pm

Enjoying the Ride: Thanks for your info about the process at Kings County with details on what happened each day for you. I'm on the list to see Dr. Sclafani, and your blog entries were informative but also helped make me feel more comfortable if/when I get a chance to have testing/treatment.

I hope the treatment helps you out and I'll keep checking your blog.

Patrice
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