4 week update post CCSVI procedure

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

4 week update post CCSVI procedure

Postby soapdiva884 » Wed Dec 08, 2010 8:22 pm

Well, just wanted to let everyone know that CCSVI is REAL and not placebo! Hahaha, had to say that! No, seriously I want to give everyone an update on my bf who was liberated Nov. 13, 2010 in Brooklyn NYC by Dr. Amazing Sclafani! With my bf's permission, of course!

A bit of history:
Dx'd 6-6-06 (rotten numbers!)
RRMS-Rebif for a couple years-Tysabri for a couple years
Left jugular 60-70% occluded--ballooned and stayed open

What has changed:
-Hands and feet are NO longer cold at all!
-Fatigue is 60% percent improved!
-Cog fog has improved 70%!
-Tysabri is not on the regimen anymore!

What has not changed:
-Balance is still way off
-Walking is still difficult
-Foot drop is still there

I know I posted in the begining just after his procedure and was complaining that there was no change. I was told to be patient and wait and see. Well, we did just that and the results are coming everyday that CCSVI is real and there is hope for MS patients. We are so grateful to Dr. Sclafani and Holly for helping to change our lives.
I hope others are having good results too. I would love to hear about others and how your doing.
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Postby Cece » Wed Dec 08, 2010 8:41 pm

*hugs*

I love it when the waiting for gradual improvements pays off. And it could not have happened to nicer people.

I was diagnosed in '06 too, what a lifetime ago!

11/13/10 makes for a far better number, does it not? :)
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Postby civickiller » Thu Dec 09, 2010 12:52 am

I was diagnosed 06/06 too, wish I could remember the day though. Idk I had to say that

I'm glad to hear your bf made improvements and I hope he continues to improve
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Postby soapdiva884 » Thu Dec 09, 2010 5:32 am

Cece wrote:*hugs*

I love it when the waiting for gradual improvements pays off. And it could not have happened to nicer people.

I was diagnosed in '06 too, what a lifetime ago!

11/13/10 makes for a far better number, does it not? :)


Thank you so much CeCe. It is very exciting stuff! We are just happy to have everyday that comes and when my bf feels better with each day that is just an added bonus!
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Postby welshman » Thu Dec 09, 2010 11:43 am

All good news: just thought I'd add that my wife had foot drop, the right foot just didn't want to come up. I noticed about 5 weeks after the procedure that she was no longer dragging the foot, and right now she walks almost normally - still a little shakey with the balance and still uses the security of her walker, but like your friend, the cog-fog is gone, the energy level is up, coming up to 2 months.

Don't forget to add your info onto "CCSVI Tracking"

http://www.ccsvi-tracking.com
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Postby CCSVIhusband » Thu Dec 09, 2010 2:10 pm

Great for you welshman! Love the story!
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Postby malden » Thu Dec 09, 2010 2:59 pm

CCSVIhusband wrote:Great for you welshman! Love the story!


I love the story too. ;)
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so blessed

Postby leetz » Thu Dec 09, 2010 3:56 pm

:D ...it almost feels like when one of us gets healed it helps the rest of us and gives great hope!!! So blessed! praise the Lord!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby drsclafani » Thu Dec 09, 2010 9:59 pm

soapdiva884 wrote:
Cece wrote:*hugs*

I love it when the waiting for gradual improvements pays off. And it could not have happened to nicer people.

I was diagnosed in '06 too, what a lifetime ago!

11/13/10 makes for a far better number, does it not? :)


Thank you so much CeCe. It is very exciting stuff! We are just happy to have everyday that comes and when my bf feels better with each day that is just an added bonus!



well, here is a doctor, really focused and caring, finding out about improvements on line


i must say it hurts a bit

but mostly i am concerned that patients do not share the after story.

we doctors need you all to share with us your good and bad, ups and downs, triumphs and failures

sometimes, it is lonely here
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Postby NotFound » Thu Dec 09, 2010 10:16 pm

Congratulations Diva!

Hello, Doctor! Love reading your posts :)
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Postby soapdiva884 » Fri Dec 10, 2010 7:32 am

drsclafani wrote:
soapdiva884 wrote:
Cece wrote:*hugs*

I love it when the waiting for gradual improvements pays off. And it could not have happened to nicer people.

I was diagnosed in '06 too, what a lifetime ago!

11/13/10 makes for a far better number, does it not? :)


Thank you so much CeCe. It is very exciting stuff! We are just happy to have everyday that comes and when my bf feels better with each day that is just an added bonus!



well, here is a doctor, really focused and caring, finding out about improvements on line


i must say it hurts a bit

but mostly i am concerned that patients do not share the after story.

we doctors need you all to share with us your good and bad, ups and downs, triumphs and failures

sometimes, it is lonely here

John sent you an email telling you how he is doing. I hope you got that email and if you did not, I am sorry about that. I will have him resend it. It was sent about a week and a half ago to you personally. After you had sent me a message asking how he was doing, John wrote a lengthy email and sent it. Please pm me and let me know if you have not gotten it. We would never dream of hurting you!
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Postby Algis » Fri Dec 10, 2010 7:42 am

sometimes, it is lonely here


Here it is lonely ~and~ scary :D

there is a canyon of mis-communication between patients and doctors; some due to humility, under education and mis-understanding from the patients side...
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Postby Cece » Fri Dec 10, 2010 9:43 pm

Hope the lonely was a momentary passing thing, drsclafani.

I think the only reason you found out about the improvements this way is due to your being here as a valued, accepted member of the community. Not many doctors could pull that feat off. :wink:
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