So far so good

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

So far so good

Postby Johnnymac » Wed Jan 06, 2010 10:35 am

Well we just got back from seeing Court's GP, and she was more than happy to write a script for an MRV. She's leaving it up to me to find the right place to get the imaging done but did say there is a chance insurance may not pay for it as it could be considered "investigative."

Next step is now to find the right place to get the MRV done.

It interesting that the GPs seem to be most helpful, they really just want to see their patients get better, without any prejudice towards specialists.

The GP didn't seem surprised at all that we're getting a stone wall from the Neurologists.
User avatar
Johnnymac
Family Elder
 
Posts: 213
Joined: Wed Oct 18, 2006 2:00 pm

Advertisement

Postby ClaireParry » Wed Jan 06, 2010 11:45 am

That's really great news! I look forwra to hearing your story unfold. Here in the UK GPs are not so understanding. No one wants to stick their neck out a bit and look outside the box - so your news is very exciting.
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Postby cheerleader » Wed Jan 06, 2010 2:05 pm

Johnny-
Have you looked into UT Southwestern?
http://www.swmed.vasculardomain.com/

of Baylor? Maybe call the interventional radiology depts and see if they're interested?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5077
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Johnnymac » Wed Jan 06, 2010 2:49 pm

cheerleader wrote:Johnny-
Have you looked into UT Southwestern?
http://www.swmed.vasculardomain.com/

of Baylor? Maybe call the interventional radiology depts and see if they're interested?
cheer


Yes, UTSW is hopefully where we'll be getting the imaging done, I've already been in contact with them and they do have the 3d MRV imaging capabilities and are happy to execute the script by the GP. My hesitation at this point is the desire to make certain the person doing the imaging and reviewing the results knows what to look for and is familiar with the MRV protocols being used elsewhere. I'm pretty confident we'll be able to make that happen but it may take a little longer than just making an appointment for imaging....worth the wait though in my opinion to have this test in the hands of someone at least familiar with what we're looking for.

Very excited to be making this progress!! Hoping my posting these updates helps others in navigating the same roadblocks I'm seeing. Had to cut Courtney's food for the first time the other night because her hands weren't working right, I'm so motivated to get her better!
User avatar
Johnnymac
Family Elder
 
Posts: 213
Joined: Wed Oct 18, 2006 2:00 pm

Postby Sharon » Wed Jan 06, 2010 3:42 pm

Johnny -

This is wonderful news!

See my PM

Sharon
Last edited by Sharon on Wed Jan 06, 2010 4:00 pm, edited 1 time in total.
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby SandyK » Wed Jan 06, 2010 3:54 pm

That's great news. So far, I haven't found any place that could do it where I am. Patient I am not!
Diagnosed 1994, Self EDSS is 6.5
User avatar
SandyK
Family Elder
 
Posts: 221
Joined: Wed Oct 14, 2009 2:00 pm
Location: WA


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service