tell me

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

tell me

Postby wobbly » Sun May 17, 2009 9:17 am

give me some news abt the stent/ when i was in italy they were trying 2 figure 1 out/ now there seems 2 be 1/ who invented it/ seems like this thing really has wings/ STAY STRONG ALL --PEACE :?: :?: :?:
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Re: tell me

Postby cheerleader » Sun May 17, 2009 9:48 am

wobbly wrote:give me some news abt the stent/ when i was in italy they were trying 2 figure 1 out/ now there seems 2 be 1/ who invented it/ seems like this thing really has wings/ STAY STRONG ALL --PEACE :?: :?: :?:


Wobbly-
Dr. Zamboni is now working with Dr. Michael Dake at Stanford University. Dr. Dake has an FDA approved, patented stent for use in American patients. I'd suggest speaking to your doctor about getting the actual stent placement done at Stanford. I know that Dr. Zamboni is able to use his stents in Italy, but his patent/approval is not international. Is this why you didn't have a stent placed in Italy?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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so

Postby wobbly » Sun May 17, 2009 11:10 am

how did they do the stent/ did they cut his neck open/ how the heck is he feeling--good i hope/ california sounds good but if this is going on i would hope the jacobs place would be lined up 4 it/ HOPE ----WE NEED IT :idea: :idea: :idea:
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Re: so

Postby cheerleader » Sun May 17, 2009 11:27 am

wobbly wrote:how did they do the stent/ did they cut his neck open/ how the heck is he feeling--good i hope/ california sounds good but if this is going on i would hope the jacobs place would be lined up 4 it/ HOPE ----WE NEED IT :idea: :idea: :idea:


The surgery is "endovascular"...the doctor sends a catheter up thru the groin area inside the veins, all the way up to the area that needs opening. Jeff's blockage was in both his jugulars, so the stents were put in there. This is what Dr. Zamboni is able to do for the Italian patients he's treating. Jeff feels GREAT! Read about it here:
http://www.thisisms.com/ftopict-7191.html

No more fatigue, heat doesn't bother him, much less leg pain, more energy and clear-headed. Took about 5 days to recover from surgery (headache and nausea), but he's glad he did it. He'll get new MRIs in 7 weeks to check out his lesions, see if there is healing.

I'm sure Jacobs will be following up with Zamboni on his stent procedure- talk to them about it. Glad the opening up of the vein helped you so much, wobbly...you may not even need the stent if that got your vein working. Jeff needed it really badly...no flow at all on one side, other was really very closed up. Every MS patient will have different needs.
take care!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: tell me

Postby patientx » Sun May 17, 2009 1:13 pm

wobbly wrote:give me some news abt the stent/ when i was in italy they were trying 2 figure 1 out/ now there seems 2 be 1/ who invented it/ seems like this thing really has wings/ STAY STRONG ALL --PEACE :?: :?: :?:


Maybe I'm misunderstanding the question, but it seems a little strange (and a little scary) to me that the doctors in Italy wouldn't know about the stent procedure. This is a fairly common procedure, particularly for blocked arteries.
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Re: tell me

Postby cheerleader » Sun May 17, 2009 1:18 pm

patientx wrote:
wobbly wrote:give me some news abt the stent/ when i was in italy they were trying 2 figure 1 out/ now there seems 2 be 1/ who invented it/ seems like this thing really has wings/ STAY STRONG ALL --PEACE :?: :?: :?:


Maybe I'm misunderstanding the question, but it seems a little strange (and a little scary) to me that the doctors in Italy wouldn't know about the stent procedure. This is a fairly common procedure, particularly for blocked arteries.


They understand it quite well, patient. They have used it in Italian MS patients as Dr. Zamboni's "liberation procedure"...however, since wobbly is American, he was not able to have the stent. There are international medical ethics boards which govern these procedures in the research phase. (Dr. Simka is now appealing to his in Poland to use stent procedures in MS patients.) From what I understand, wobbly was just screened and had a "clean up" while he was in Italy. The "figuring out" part wobbly refers to was how to get a stent approved for international use. This is why I got Dr. Dake involved, so American patients could benefit from this research, and receive diagnosis and FDA approved stent treatment in the states -until there is an international consensus- it will be different in every country.

Dr. Dake treated Jeff's severe venous insufficiency. You need jugular veins, and Jeff's were not working. With stents, he has functioning jugular veins. Now we wait and see if this changes his MS. So far, so good.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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