PATIENT'S STORY

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

PATIENT'S STORY

Postby dania » Thu May 19, 2011 5:00 am

What is very interesting with this story, is that she restenosed but the stenosis was in a different location than the original stenosis.
The same happened to me.

http://www.youtube.com/watch?v=MMo3qrjI2io&NR=1
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Advertisement

Re: PATIENT'S STORY

Postby DrCumming » Thu May 19, 2011 5:04 am

dania wrote:What is very interesting with this story, is that she restenosed but the stenosis was in a different location than the original stenosis.
The same happened to me.

http://www.youtube.com/watch?v=MMo3qrjI2io&NR=1


I haven't watched the video but have seen this problem. In many instances, I believe, the restenosis is happening because we are over dilating normal vein. See case #3 in the IVUS thread. My approach to ballooning has changed dramatically in the last couple of months because of restenosis problems.
User avatar
DrCumming
Family Elder
 
Posts: 209
Joined: Sat Dec 25, 2010 3:00 pm
Location: Minneapolis, MN

Re: PATIENT'S STORY

Postby dania » Thu May 19, 2011 5:27 am

DrCumming wrote:
dania wrote:What is very interesting with this story, is that she restenosed but the stenosis was in a different location than the original stenosis.
The same happened to me.

http://www.youtube.com/watch?v=MMo3qrjI2io&NR=1


I haven't watched the video but have seen this problem. In many instances, I believe, the restenosis is happening because we are over dilating normal vein. See case #3 in the IVUS thread. My approach to ballooning has changed dramatically in the last couple of months because of restenosis problems.

Thanks for the input. I wondered about that.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Postby Cece » Thu May 19, 2011 5:33 am

But why would the restenosis be in a different area of the vein?

I wondered about this with Dr. Sclafani's Friday night example, with the upper jugular stenosis having become completely closed off in less than a year. It had been open originally and as far as I understood, it had never been ballooned there. Why would it close off?
Cece
Family Elder
 
Posts: 9044
Joined: Mon Jan 04, 2010 3:00 pm

Postby codefellow » Sun May 22, 2011 5:02 am

Wasn't there also a case a few years ago of a patient who's veins
spontaneously de-stenosed?
User avatar
codefellow
Family Elder
 
Posts: 120
Joined: Tue Nov 18, 2008 3:00 pm

Postby HappyPoet » Sun May 22, 2011 8:29 am

Dania, thanks to Dr. Sclafani's post-procedure protocol of using Arixtra, my six-month old totally occluded femoral vein (different doctor) is now flowing freely again. I believe he saved my leg and perhaps even my life.

Can you get a doctor to prescribe you Arixtra for 21 days? It sure helped me, so maybe it can help you, too. Perhaps it's worth a try?
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 2:00 pm

Postby dania » Sun May 22, 2011 9:04 am

HappyPoet wrote:Dania, thanks to Dr. Sclafani's post-procedure protocol of using Arixtra, my six-month old totally occluded femoral vein (different doctor) is now flowing freely again. I believe he saved my leg and perhaps even my life.

Can you get a doctor to prescribe you Arixtra for 21 days? It sure helped me, so maybe it can help you, too. Perhaps it's worth a try?

My veins are occluded with scarring. Not with blood clots. If you can imagine an incision from surgery like open heart surgery you get a scar. That scar is sometimes thick and raised. Vein bypass is my only hope.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Postby Cece » Sun May 22, 2011 9:45 am

codefellow wrote:Wasn't there also a case a few years ago of a patient who's veins
spontaneously de-stenosed?

I remember that....was it a stenosis seen on MRV but not there in the venogram? Or was it present in a venogram but not there in a second venogram?
Cece
Family Elder
 
Posts: 9044
Joined: Mon Jan 04, 2010 3:00 pm

Postby codefellow » Sun May 22, 2011 7:56 pm

Cece wrote:
codefellow wrote:Wasn't there also a case a few years ago of a patient who's veins
spontaneously de-stenosed?

I remember that....was it a stenosis seen on MRV but not there in the venogram? Or was it present in a venogram but not there in a second venogram?


What I remember was so unusual about that case was that it was very carefully measured before and after by some very reliable equipment and very competent people. I don't remember how it was measured (I suspect MRV), but I do remember there was almost no chance of operator error.
User avatar
codefellow
Family Elder
 
Posts: 120
Joined: Tue Nov 18, 2008 3:00 pm

Postby Cece » Sun May 22, 2011 8:18 pm

Here we go, it was prof8:
www.thisisms.com/ftopict-10465.html

My guess now is that the MRV was accurate, there was stenosis in both jugulars in the usual area, and that it was missed on the venogram but would've been found on IVUS or by a more experienced operator (and in early 2010, they were all inexperienced). Maybe a septum or a windsock or that sort of thing. Or too much contrast used, which hid the issue.

(this is what made me think septum:
Dr.X showed me video of contrast dye flowing through the veins yesterday--if anything the previously blocked parts were now the widest part of the vein.

remember the funny-looking azygous that Dr. Sclafani posted, that looked a little like a snake that had swallowed a mouse, up at the arch of the azygous? It was wide there and it took ivus to find the issue.)
Cece
Family Elder
 
Posts: 9044
Joined: Mon Jan 04, 2010 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service