SCARRING

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
esta
Family Elder
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada
Contact:

Post by esta » Sun Aug 07, 2011 11:32 am

dania
true, but since they still do angioplasty on both, with minimal risk (to date), ccsvi is still a better direction than anything else to date, would you not agree?
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia

User avatar
dania
Family Elder
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Post by dania » Sun Aug 07, 2011 12:12 pm

Absolutely! It is better than what was out before.The only thing I cannot agree with is the minimal risk. My 3 veins are 100% are now blocked with scarring. I am so much worse than before and declining every day. I have been contacted by so many others that have scarring, blocking the veins and are now worse off. I know as along as the veins remain opened you have improvements. But if your veins close up more than originally after angio and you are now more disabled, that is not a good outcome. I do not want someone else ending up like me. And I think patients should be aware of this possibility. If they are not that bad they might want to wait until the technique is perfected. One poor woman posted here about 6 months ago, IF YOU HAVE MILD SYMPTOMS...She had mild symptoms, but after angioplasty she was much worse and could not even work anymore. I was talking to someone that just came back from the meeting in New York. He told me that there were many doctors there performing angio and the all had their own way of doing it. Not standardized. Unfortunately it will take time to get the kinks out of this procedure. Hope they can do it soon.

User avatar
esta
Family Elder
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada
Contact:

Post by esta » Sun Aug 07, 2011 1:55 pm

Dania
i hear you, but I also know people will try anything almost to be rid of MS.

as i've said before, i've done it twice, and now have inimal hypeplasia, but am going to try again, stupidly, blindly et al, just in the hopes of being better, and the dr i choose, i hope, does what he does right and the best he can.
i guess, really it comes down to 'we takes our chances' in everything we do.

i could, by my 3rd procedure, be just like you after, but i'm going in with that knowledge...its a riski'm willing to take.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia

User avatar
dania
Family Elder
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Post by dania » Sun Aug 07, 2011 2:19 pm

I am sure you have heard of RF Ablation? Dr McGuckin seem to do this. Good luck. Hope it works. I have tried 5 times. The last 3 they were unable to do angio due to scarring. Dr Arata said I need a vein bypass. Try and find a doctor who will do that. I am willing to take the risks. If I die on the table , so be it. Better than existing this way.
Death does not scare me. Being like this, knowing what my future holds if nothing is done, scares me.

User avatar
leetz
Family Elder
Posts: 301
Joined: Tue Oct 06, 2009 2:00 pm
Contact:

:)

Post by leetz » Sun Aug 07, 2011 2:45 pm

AGREED!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”