Search found 171 matches

by vivavie
Thu Feb 16, 2012 10:40 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!
Replies: 93
Views: 11716

Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Thank you Dania and I wish you the best of luck!
Please keep us informed, by the time you are done I may be ready to do it.
I will think about you and send you good vibes!
When are you scheduled?
by vivavie
Thu Feb 16, 2012 9:58 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!
Replies: 93
Views: 11716

Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

I am not on TIM very often anymore so maybe I missed it but anybody knows the cost of the vein reconstruction in USA?? I will not jump on it as quickly as I did with angio, 1st I don't have anymore $ and not enough energy! I will wait for fine tune of the procedure although I know I can not wait too...
by vivavie
Sat Nov 19, 2011 2:03 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: question about teeth
Replies: 41
Views: 2507

Re: question about teeth

After one procedure I had major jaw pain for 3 weeks, turned out I had 2 dead teeth and needed 3 root canal. One month prior to procedure I had a dental examen, everything was fine. The IR said it was not related. This automn the day after another procedure I lost a tooth in the car during the drive...
by vivavie
Thu May 12, 2011 8:24 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Angioplasty, reg vs oversized
Replies: 29
Views: 3325

I understand the need to make people aware of the potential bad outcome, we need to know of the good and the bad. My story is not very fun but it is a risk a was willing to take a year ago. My problem is that people without insurances don't realise that more procedures may be needed and it won't be ...
by vivavie
Thu May 12, 2011 6:45 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Angioplasty, reg vs oversized
Replies: 29
Views: 3325

Logan, If you are degrading rapidly or for any other of your personnal reasons you choose to have the procedure, i can understand it. BUT be aware that this is MOST probably not a one shot deal. Worst, you may need multiple procedures to correct some problems! Be sure you are FINANCIALLY, emotionnal...
by vivavie
Tue May 03, 2011 10:02 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: chemo vs ccsvi procedure
Replies: 11
Views: 1904

Hum, very interesting Cheer, as usual! I also had radiotherapy and curietherapy for my tongue cancer 15 y ago. This was always disclosed. What is surprising is that my "good" jugular is on the side of the previous tumor where a had most of the radiation and the neck dissection. Chemo was 3y ago. Thi...
by vivavie
Tue May 03, 2011 8:19 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: chemo vs ccsvi procedure
Replies: 11
Views: 1904

I also did Rebiff, copaxone and tysabri, each for a few years but with chemo the damage to the veins is very obvious. I agree that all of those have very bad effects. For some ccsvi the research they have the patients stay on their meds, I wonder if they do a category that never had immunosuppressan...
by vivavie
Tue May 03, 2011 7:34 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: chemo vs ccsvi procedure
Replies: 11
Views: 1904

chemo vs ccsvi procedure

Of all the people who did not have success with the CCSVI procedure, I wonder how many have had chemo (for ms or cancer)? Chemo did not solve my existing symptoms but it did stop me from relapsing. It went from 4 to 6 times per year to zero since. BUT putting poison in my body periodically during 2 ...
by vivavie
Tue May 03, 2011 5:07 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: 24 Hours Post CCSVI, I feel Horrible ! Please Comment
Replies: 26
Views: 5382

Did you get an ultrason the day after the procedure? I once felt worse right after because my jugular had collapse.

good luck, I hope this is just temporary...
by vivavie
Mon May 02, 2011 7:14 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8335
Views: 1568444

Re: follow-up ultrasound in Canada...

Hopefully intimal hyperplasia may resolve with more time. Hum, I thought hyperplasia gets permanent with time!? I was devastated when I learned that my stents were getting occluded again! I tried to ignore it for a while... but I know it is getting worse. I feel the same way as when my jug collapse...
by vivavie
Sun Apr 24, 2011 1:23 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Success rate of 2nd procedure???
Replies: 6
Views: 1790

Dania: Thank you for the info! Is it an option for you? are you looking into the vein surgery in Italy? What is your next step?? As you are developping collaterals are you getting a little better? You are often in my thoughts! Cece: I am not emotionnally and ... Financially ready!!! I have difficult...
by vivavie
Sun Apr 24, 2011 7:26 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Success rate of 2nd procedure???
Replies: 6
Views: 1790

We now know that restenosis is not a matter of "if" but "when", most likely everyone will have 2nd procedure but not the results!?!! Dania: me, hyperplasia again! from your experience I know I don't want to let go of my left jug but I can't continue paying to keep it open! Everytime it closes the pa...
by vivavie
Sat Apr 23, 2011 11:19 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Success rate of 2nd procedure???
Replies: 6
Views: 1790

Success rate of 2nd procedure???

Of the people who had improvements after their 1st procedure then restenosed and had a second procedure, how many got back their improvements? I know that Lucky125 had successful 2nd and 3th procedures but I am under the impression that most did not get back to where they were after the first. Some ...
by vivavie
Tue Apr 19, 2011 7:00 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8335
Views: 1568444

... Some people just form exhuberant scar tissue. i guess the only other consideration if the intimal hyperplasia does not subside might be to put in a covered stent to prevent the intimal hyperplasia from growing through the stent wires... My patern has been to develop hyperplasia within 6-8 weeks...
by vivavie
Sun Apr 17, 2011 10:59 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8335
Views: 1568444

But did you feel ANY better after I opened the intimal hyperplastic narrowing that you asked me to try. That was when you might have had some relief from increased blood flow. Did you? Why do you react so badly to stents. Some people just do. I wish i could predict better. Some people just form exh...