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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Rokkit
 Post subject: Oh, Radeck?
PostPosted: Wed Nov 25, 2009 4:50 pm 
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Expected to hear from Radeck by now. High stents are the only thing I can think of that would keep such a man quiet this long, but I didn't think high stents were in the cards for him. Anyone know anything?
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cheerleader
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PostPosted: Wed Nov 25, 2009 5:01 pm 
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Location: southern California
I saw him right after his procedure, but I don't want to tell tales out of school. He did get some high stents, but I want to let him come on here and share. He was awake and talkative when I visited his room, sadly his wife and baby couldn't visit, because the hospital has a tough no kids policy now, due to H1N1. I hope he's recovering well, and will come on here soon to update. Miss you, radeck!
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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radeck
 Post subject:
PostPosted: Thu Nov 26, 2009 12:26 pm 
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The procedure didn't go at all as I expected. I will tell more about this when the time is right. When I recovered from the sedation I was told that they put 5 stents in me, including the upper jugular and azygos. One of the high jugular stents was too narrow and slipped into my right ventricle so I had emergency open heart surgery to remove it. l'll update you when I have more energy.


Last edited by radeck on Sat Jan 16, 2010 6:49 pm, edited 2 times in total.

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LR1234
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PostPosted: Thu Nov 26, 2009 12:28 pm 
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Wow Radeck, that is a first. I am so sorry you had to go through that.


Last edited by LR1234 on Thu Nov 26, 2009 12:53 pm, edited 1 time in total.

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zap
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PostPosted: Thu Nov 26, 2009 12:35 pm 
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Egads. So glad you're alright ... recover well!
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bibliotekaren
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PostPosted: Thu Nov 26, 2009 12:36 pm 
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Radeck,

I've been watching your journey as someone who is in line behind you. Am so so sorry to hear this. Please take good care.

Donna
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Mutley
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PostPosted: Thu Nov 26, 2009 12:48 pm 
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So sorry to hear about that Radeck, get well soon we're all thinking of you

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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ErikaSlovakia
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PostPosted: Thu Nov 26, 2009 1:39 pm 
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Get well soon, Radeck!
Erika

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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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flipflopper
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PostPosted: Thu Nov 26, 2009 2:13 pm 
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Wow...so sorry to hear this. Wishing you the best in your recovery Radeck!
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radeck
 Post subject:
PostPosted: Thu Nov 26, 2009 2:47 pm 
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Unfortunately I'm not allowed to use blood thinners for now
to reduce internal bleeding, which means there may be an increased risk of clotting around the stents.


Last edited by radeck on Sat Jan 16, 2010 6:38 pm, edited 1 time in total.

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marcstck
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PostPosted: Thu Nov 26, 2009 4:33 pm 
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Radeck, wishing you a quick and complication free recovery.

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Marc
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Needled
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PostPosted: Thu Nov 26, 2009 4:37 pm 
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Oh Radeck, so sorry to hear of the complications. Please know we're thinking of you and wishing you the very best.
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radeck
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PostPosted: Thu Nov 26, 2009 4:49 pm 
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Thanks all. Recovery is slow, since surgeries pretty much don't come in more invasive forms than open heart ones, and long term effects on health are pretty unclear if you have a stent bouncing around jamming against the walls of your ventricle and valve for several hours.


Last edited by radeck on Sat Jan 16, 2010 6:37 pm, edited 1 time in total.

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Habenoughyet
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PostPosted: Thu Nov 26, 2009 4:52 pm 
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All the best... We all need you to get through this!!! :wink:

HEY

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"Never argue with stupid people... They bring you down to they're level and beat you with experience"
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marcstck
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PostPosted: Thu Nov 26, 2009 5:03 pm 
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radeck wrote:
Thanks all. Recovery is slow, since surgeries pretty much don't come in more invasive forms than open heart ones, and long term effects on health are pretty unclear if you have a stent bouncing around jamming against the walls of your ventricle and valve for many hours. I guess it's an obvious complication of this procedure, that I just didn't think about, you all on the wait list should seriously consider. If something gets lose in the jugular, it's a straight path into the heart. I'll tell you much more details when I'll (hopefully) be better.


Point well made, radeck. I'm so sorry you had to deal with such a frightening complication.

I think this must be one of the reasons that the NIH has been so adamant in warning me about the dangers involved in such surgery. Hopefully, your experience will contribute to the knowledge base regarding the procedure, and corrections will be made that will diminish the chances of such a complication from ever happening again.

Thanks for having the courage to be a pioneer.

Get plenty of rest, and be well...

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Marc
www.wheelchairkamikaze.com
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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