4 week update post CCSVI procedure

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
soapdiva884
Family Elder
Posts: 167
Joined: Mon Apr 05, 2010 2:00 pm
Contact:

4 week update post CCSVI procedure

Post by soapdiva884 »

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.
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

*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? :)
User avatar
civickiller
Family Elder
Posts: 558
Joined: Thu Feb 04, 2010 3:00 pm
Location: Hawaii

Post by civickiller »

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
User avatar
soapdiva884
Family Elder
Posts: 167
Joined: Mon Apr 05, 2010 2:00 pm
Contact:

Post by soapdiva884 »

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!
User avatar
welshman
Family Elder
Posts: 112
Joined: Wed Dec 16, 2009 3:00 pm
Location: Kelowna B.C. Canada
Contact:

Post by welshman »

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
User avatar
CCSVIhusband
Family Elder
Posts: 475
Joined: Sun Jun 27, 2010 2:00 pm
Location: Pittsburgh, PA USA
Contact:

Post by CCSVIhusband »

Great for you welshman! Love the story!
malden

Post by malden »

CCSVIhusband wrote:Great for you welshman! Love the story!
I love the story too. ;)
User avatar
leetz
Family Elder
Posts: 301
Joined: Tue Oct 06, 2009 2:00 pm
Contact:

so blessed

Post by leetz »

: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...
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Post by drsclafani »

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
User avatar
NotFound
Family Elder
Posts: 125
Joined: Sat Jun 26, 2010 2:00 pm

Post by NotFound »

Congratulations Diva!

Hello, Doctor! Love reading your posts :)
User avatar
soapdiva884
Family Elder
Posts: 167
Joined: Mon Apr 05, 2010 2:00 pm
Contact:

Post by soapdiva884 »

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!
User avatar
Algis
Family Elder
Posts: 829
Joined: Sat Nov 21, 2009 3:00 pm
Location: XinYi District, Taipei City, , Taiwan

Post by Algis »

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...
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

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:
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”