Search found 45 matches

by WinnipegGirl_83
Wed Jun 08, 2011 10:37 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: open neck surgery
Replies: 11
Views: 3657

Boisegal, i had the same exact experience and outcome as your husband. Crazy... I too have thought vein by-pass may be my only viable option.
by WinnipegGirl_83
Wed Jun 08, 2011 10:31 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Kathleen Lynch (klynch56)
Replies: 39
Views: 10082

I too was wondering where she had disappeared to. I hope she is ok...
by WinnipegGirl_83
Sat Apr 02, 2011 9:31 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: clotted off jugulars
Replies: 82
Views: 17331

Liberation, I knew something had gone wrong after my symptoms started creeping back. Once I had my second venogram I knew for sure. I am not completely certain of the issues that led to their re-stenosis. I know they were angio'd again, some in Egypt and some went to the U.S, another had a stent put...
by WinnipegGirl_83
Sat Apr 02, 2011 9:23 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Completely Blocked RIJV
Replies: 48
Views: 10455

Welcome Munchkin!! You are in good company :D

My apologies for getting off topic with my posting...
by WinnipegGirl_83
Sat Apr 02, 2011 9:12 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Completely Blocked RIJV
Replies: 48
Views: 10455

Thank-you all for your support and encouraging words. I feel a sense of assurance that everything will work out after reading your comments. I don't want it to seem like I am a Debbie Downer, for the most part I am a positive person. There are just periods of time when I spiral out of control...wher...
by WinnipegGirl_83
Sat Apr 02, 2011 7:12 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: clotted off jugulars
Replies: 82
Views: 17331

I agree Griff. I made the best decision that I could at that time. I was also in a complete state of panic, fear, and anxiety. That did not help the situation.
by WinnipegGirl_83
Fri Apr 01, 2011 9:24 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Completely Blocked RIJV
Replies: 48
Views: 10455

Thanks for responding Marc, Cece and Dr. C Sorry Marc, I was under the impression that Dr. Sclafini could not enter your vein. Thanks for clarifying. I am at a loss for words really. There is a part of me that believes I caused this... by going to Egypt and jumping the gun. If I would have waited wo...
by WinnipegGirl_83
Fri Apr 01, 2011 12:16 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Completely Blocked RIJV
Replies: 48
Views: 10455

Thank-you Dr. Cumming.

Based on the images you posted, it looks as though the condition of my vein actually worsened in the months after my first procedure. This makes my stomach sink.

I hope there is another avenue we can take. Here's hoping...
by WinnipegGirl_83
Fri Apr 01, 2011 8:01 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: clotted off jugulars
Replies: 82
Views: 17331

I have no idea. I did not receive any written documentation about my procedure from Egypt. I requested it a few times but never got it. There is a big difference between our medical system and the Egyptian one. The written documentation and follow through is not there. I would really like to know if...
by WinnipegGirl_83
Thu Mar 31, 2011 5:54 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: clotted off jugulars
Replies: 82
Views: 17331

The injectables I took for 10 days. If I had thrombosis or a clot would I still have felt better after the procedure? I'm just spinning here...not sure if it is in my favour to be picking apart the decision to go. I was and am desperate, not sure if I have my head on straight.
by WinnipegGirl_83
Thu Mar 31, 2011 3:00 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: clotted off jugulars
Replies: 82
Views: 17331

At the time, I did not even know if I had CCSVI and so after researching and talking to other Canadians I felt he was my best shot. I was able to get in quickly, and with work I had the month of August off. I am not sure why it is blocked. There could be a number of reasons...I think in due time we ...
by WinnipegGirl_83
Thu Mar 31, 2011 2:16 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: clotted off jugulars
Replies: 82
Views: 17331

I had my procedure in Aug 2010. I was on four anti-coag at the same time one of which was an injection. His regimen with me was very aggressive. I don't believe the cause of my re-stenosis was due to a lack of anti-coag. What do you think? I e-mailed Dr. Sinan a few times with no response. I underst...
by WinnipegGirl_83
Thu Mar 31, 2011 2:09 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Completely Blocked RIJV
Replies: 48
Views: 10455

Thornyrose, I am not certain but it is definitely happening. I know Dr. Sclafini has attempted to do a venogram/plasty on the Wheelchair Kamikaze. I am not certain of all the details but from what I gathered he was not able to get through all of his veins. I know Mark posts on TIMS, hopefully he wil...
by WinnipegGirl_83
Thu Mar 31, 2011 2:03 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: clotted off jugulars
Replies: 82
Views: 17331

I am not certain why it ended up blocked. I know the first time Dr. Sinan had a heck of a time getting in there. Where are you from? There are some great docs in the U.S (in addition to Dr. Sclafini)
by WinnipegGirl_83
Thu Mar 31, 2011 8:49 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Completely Blocked RIJV
Replies: 48
Views: 10455

Mavis, how do I find 'mrhodes' on TIMS? I have tried to search her/him but have been unsuccessful. Do you know if she is on Facebook?

Go to advanced search