123

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

123

Postby chrishasms » Thu May 07, 2009 10:48 am

123
Last edited by chrishasms on Sun Dec 06, 2009 12:55 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Advertisement

oh ya

Postby wobbly » Mon May 11, 2009 4:52 pm

it really was not my decision/ i was just recruited 4 a study/ but there has been real relief/ i did not no it was this big or the results would be so encouraging/ i new that it was big when i started 2 hear nobel prize/ chris it is a little funny that u r reaching out 2 me cause i have followed some of your ordeals on yur site/ stay strong all 8) 8)
User avatar
wobbly
Family Member
 
Posts: 73
Joined: Thu Jan 01, 2009 4:00 pm

Re: oh ya

Postby Hub » Mon May 11, 2009 6:39 pm

wobbly wrote:there has been real relief


Wobbly,

Did you have a stent put into your veins or was the blockage in your veins cleaned out with angioplasty (and without the use of a stent)?
User avatar
Hub
Getting to Know You...
 
Posts: 23
Joined: Wed Apr 23, 2008 3:00 pm

Postby wobbly » Tue May 12, 2009 6:49 am

no stent/ just a clean up
User avatar
wobbly
Family Member
 
Posts: 73
Joined: Thu Jan 01, 2009 4:00 pm

Postby cheerleader » Tue May 12, 2009 7:18 am

Well, that explains why you got cocktails 2 hours after, wobbly! :)

It will be interesting to see how many people can get by with just a "cleanup" and how many will need stents in order to return bloodflow.

A cleanup wouldn't have worked for Jeff- his veins were too closed down.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Sharon » Wed Jun 10, 2009 8:28 am

Wobbly - you have posted a couple of times that you have had improvement in heat sensitivity. Have you noticed any physical i.e. arm or leg weakness improvement? Hope you can answer without "blowing" your cover!!

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

hi

Postby wobbly » Wed Jun 10, 2009 11:36 am

big time with heat/ it really doesnt bother me much anymore/ i really wish this would move along faster/ u guys need this done/ legs r close 2 same/ maybe little better/ 4 major lesions on spine so as i m told those r tough 2 heal / but lots better/ STAY STRONG ALL 8)
User avatar
wobbly
Family Member
 
Posts: 73
Joined: Thu Jan 01, 2009 4:00 pm

Postby MaggieMae » Wed Jun 10, 2009 11:58 am

Wobbly, Do you think an exercise program (similar to Chris') would help regain strength?
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 3:00 pm
Location: Pennsylvania

Postby wobbly » Wed Jun 10, 2009 12:03 pm

i am a workout warrior/ go every day / strong as a ox / legs r weak i work out with them every day/ if it will come back then i will get it back/ trying real hard----PEACE :) :D
User avatar
wobbly
Family Member
 
Posts: 73
Joined: Thu Jan 01, 2009 4:00 pm

Postby Sharon » Wed Jun 10, 2009 12:31 pm

Thanks Wobbly for your response. I am also an exercise freak, so I am hoping that I can regain some of the lost strength. Thankfully, I have not suffered from the heat or the fatigue; mostly leg weakness. My lesions are in the cervical spine not the thoracic. My hope is no more progression - a bonus would be bending and lifting my leg to go up a staircase without having to use the railing to pull me up.

Your posts have been extremely helpful and supportive.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby Crabby » Thu Jun 11, 2009 10:53 pm

Wobbly,

Did the doctor in Italy who cleaned out your veins make an incision in your groin area (to insert the catheter for the vein clean-out), or did he make an incision in your neck or arm?

Also, did you have to take any blood thinners or other medications after the procedure?
User avatar
Crabby
Getting to Know You...
 
Posts: 10
Joined: Wed Jun 10, 2009 3:00 pm

Postby wobbly » Fri Jun 12, 2009 6:45 am

groin/ and yes i took blood thinners/ had 2 give myself a shot 4 10 days/ peace :P
User avatar
wobbly
Family Member
 
Posts: 73
Joined: Thu Jan 01, 2009 4:00 pm

Postby Sharon » Fri Jun 12, 2009 10:16 am

A shot Wobbly for the blood thinners? I am glad that we get to take pills :wink:
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby CureOrBust » Sat Jun 13, 2009 6:46 am

Sharon wrote:A shot Wobbly for the blood thinners? I am glad that we get to take pills :wink:
Hey, its a walk in the park for MS. Where I "hear", one can be prescribed daily self injection for the rest of their natural life. under current medical treatments...
User avatar
CureOrBust
Family Elder
 
Posts: 2883
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby Sharon » Sat Jun 13, 2009 6:56 am

Cure you wrote:
Hey, its a walk in the park for MS. Where I "hear", one can be prescribed daily self injection for the rest of their natural life. under current medical treatments...


I have kept myself away from those daily self injections. I'm not afraid of the needle, but just glad that we (The Stanford four {soon to be more})are not having to give ourselves shots to thin the blood.

Let's also hope that in the not to distant future Johnson and Johnson will be making more money on manufactuing of stents for MS recovery than they are on making needles. :)
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users