Poll: Getting treatment?

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

Are you getting treatment for CCSVI?

Yes, I am getting treatment at Stanford.
13
24%
Yes, I am getting treatment somewhere else (post where in this thread)
10
18%
No, but I am looking for someone locally to do it
22
40%
No, I'll wait for more research or my neuro to say do it.
10
18%
 
Total votes : 55

Postby chrishasms » Mon May 11, 2009 12:30 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 6:55 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Advertisement

Postby mrhodes40 » Mon May 11, 2009 12:49 pm

But it is kind of OK really: they can do it when it is tested and out. At this point it is kind of the adventurous persons jumping in to be lab rats.

Chris no one can accuse you of not being adventurous.... :lol:

lots of people do not understand it and it seems to me that it just "seems wrong" to them so they do not really TRY to understand it either; you have to have concept that this could be it before you are going to read 100 pages of forum posts, and you can't understand it unless you really take some time with the research.

I tis OK Dr Dake can't treat everyone anyway so it is lucky 1000 people don't want to do this yet, we need to clone him!!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby LR1234 » Mon May 11, 2009 1:16 pm

I think getting tested is a pretty harmless thing to do (if you have insurance) I am not sure about the surgery yet though, that is a big decision.
LR1234
Family Elder
 
Posts: 1503
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby Sharon » Mon May 11, 2009 1:33 pm

Marie - I can't remember if I answered the poll :oops: :oops:

I think there are five of us at Stanford
Jeff, you, Peekaboo, Chris, and me
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby Loobie » Mon May 11, 2009 1:35 pm

It's going to be six very soon if Ohio State does not get on the ball!!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby chrishasms » Mon May 11, 2009 1:50 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 6:55 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby Sharon » Mon May 11, 2009 1:54 pm

Loobie -

Ya, CU Medical Center (University Hospital) hasn't responded either. I will keep trying - it is important to get the message out here in Colorado since we have such a high incidence of MS.
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby chrishasms » Mon May 11, 2009 2:02 pm

123.
Last edited by chrishasms on Sat Dec 05, 2009 6:56 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby skydog » Mon May 11, 2009 10:02 pm

Packing all my cooling implements and heading down the coast to the good old bay area. Add me to the list Going to Stanford... Cheers Mark
Plant a BIG Garden Live in the Moment
User avatar
skydog
Family Elder
 
Posts: 306
Joined: Tue Feb 24, 2009 4:00 pm
Location: North Oregon Coast

Postby Needled » Tue May 12, 2009 6:05 am

I need a chart to keep track of who's going where when -- Good luck to everyone!
N
User avatar
Needled
Family Elder
 
Posts: 361
Joined: Wed Jan 14, 2009 4:00 pm
Location: Connecticut

Postby Sharon » Tue May 12, 2009 6:13 am

Mark - when are you scheduled?
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby mrhodes40 » Tue May 12, 2009 6:30 am

I think you are right about how many so far Jeff (the 5th) me (the 18th) pkboo, Chris and you....and now Mark. Four more until enough for the paper if he stays with an earlier comment to publish 10 or 11 results.

think getting tested is a pretty harmless thing to do (if you have insurance) I am not sure about the surgery yet though, that is a big decision


A person can sure sit on their MRV results and think it over no reason why not. I think a lot of people get an MRI of their knee then think that over too before jumping in.

If an MRV looked like the twisted vein at the bottom of Dr Zamboni's dec 08 paper though, I think that'd be pretty important to a person's decision...

As it is before we have certain acceptance by the neuro community and before a person has even had an MRV or anything, it is all a really vague concept that is kind of theoretical and it feels like a too big committment to go along with it.

I already had dopplers so it has crossed from theory to reality in my body. I want the thing fixed, thank God for Dr Dake! it is a different mental place.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby skydog » Tue May 12, 2009 7:19 am

Sharon, June 29th and 30th is my scheduled appointment. Cheers Mark
Plant a BIG Garden Live in the Moment
User avatar
skydog
Family Elder
 
Posts: 306
Joined: Tue Feb 24, 2009 4:00 pm
Location: North Oregon Coast

Postby Sharon » Tue May 12, 2009 12:11 pm

Marie -
Four more until enough for the paper if he stays with an earlier comment to publish 10 or 11 results.


Possibly another MSer from Colorado - she was really interersted in the research - she is not a member of the ThisisMS, but I bet she is now lurking around this forum after I sent her the links.

I would like my brother to make the trip, but he has a problem with the MRI's - he has metal flecks around his eyes - he has MS but has never had a brain MRI. Dr. Dake was interested in getting him to California - maybe I need to give my brother a nice sisterly "push"!
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby mrhodes40 » Tue May 12, 2009 12:44 pm

Ahh, and I forgot that my friend is going too... June 5 or so if I remember right That gets him pretty close!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service