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If you have received a CCSVI diagnosis....

PostPosted: Sat Dec 26, 2009 12:04 pm
by cheerleader
Please come over to Facebook and post your info. Trying to get a thread going to show jugular involvement in patients tested around the world. We have doctors confirming CCSVI in New Zealand, Australia, Canada, France....it's not just Stanford and Italy anymore.
To post, click on the blue CCSVI below-
thanks,
cheer

WILL DO..

PostPosted: Sat Dec 26, 2009 12:54 pm
by leetz
TALKING TO MY DOCTOR MID-NEXT WEEK...WHAT EXACT TEST SHOULD I BE ASKING FOR...Does anyone know? Doppler of IJV's or AZY's or both? Or should I be asking for an MRV or MRA????

Thanks to all...
Together we can move mountains!!!!
From NY
Leetz (campather-now interested in CCSVI)

PostPosted: Sun Dec 27, 2009 9:03 am
by whyRwehere
The problem with posting is that, you have to sign in. Cheer, you can post for me. my husband: doppler, June 2009 Paris....Phlebographies 25Nov and 23Dec Paris. MS diagnosed Aug 2002 Paris last EDSS by a neuro was 4.5, but I would have said at least a 6(he is still working but finds it very difficult to walk)
angioplasty for 3 blockages in internal jugular, no stents, missing pre sacral venous plexus (both sides)...no hope for that.
Why

PostPosted: Sun Dec 27, 2009 9:48 am
by cheerleader
Thanks, Why. I will post for you...
trying to show correlation for stenosis/MS is being found around the world. I realize with Facebook you lose anonymity, and that is a problem for many. (Too late for me and Jeff...our e-mail in boxes are scary places.) 8O

Just trying to help patients who are having a difficult time getting tested.
If anyone else wants me to post for them, anonymously, I will do so...just add your info on this thread.
thanks so much,
cheer

different kinds of CCSVI

PostPosted: Sun Dec 27, 2009 11:17 am
by jean-la-grenouille
Hi,

I have been tested for CCSVI last week in Paris by Dr Franceschi.
I have a problem with both internal jugular veins ( no blood flow). I'm advised to try inclined bd therapy, to see if this can improve some symptoms. Then I could have a venography before intervention (balooning).

One of my sister also as MS, but not the same kind (i have relapsing MS, without any flair-up for 8 years :-) ). My sister has progressive MS (EDSS 6.5).
So my father as asked Dr Franceschi about my sister. The problem is that veins may be damaged in many areas (sometimes even missing). So it is presently difficult to help these patients.
But research on CCSVI is really new and promising. Maybe doctors will be able to help more patients (with specific techniques or materials) in the near futur.

Best wishes for the coming new year :-)

PostPosted: Sun Dec 27, 2009 11:47 am
by IbRiz
jean-la-grenouille that's great news! So you can be tested in Paris now?

Did he say where you can have the balooning performed?

Christian

PostPosted: Sun Dec 27, 2009 11:52 am
by cinder21
Looking at these posts, am beginning to wonder what the benefit of diagnosing stenosis is. After being dx'd with stenosis, defective valves or twisting of the jugulars, then what?. Whos gonna help us be liberated? IS it worth it getting dx'd with CCSVI first or should i wait to see Dr.Dake or Simka where i can get everything done?

PostPosted: Sun Dec 27, 2009 12:01 pm
by cheerleader
Thank you, Jean. I have posted for you anonymously on Facebook.
Cinder, It is important to establish the connection between venous malformation/stenosis and MS. A variety of doctors are finding this now. I met Dr. Franceschi in Bologna, -he is a well-published and very well-respected vascular doctor and he was very reticent to treat CCSVI surgically just yet, but there are neuroradiologists and vascular doctors who are able to deal with a variety of jugular and venous problems. The first step is identifying the venous problem with venography.

A diagnosis will help with insurance coverage for treatment, and help add to the continuing worldwide evidence of CCSVI in MS.
cheer

PostPosted: Sun Dec 27, 2009 12:55 pm
by kinga
Cheer-
If You could post for me also...
woman,35,diagnosed MS 2002,doppler October 2009 showed reflux and valves problem on both sides,MRV November 2009 showed azygous vein blockage,no jugular veins problems.Doctors suggest balooning to resolve azygous vein problem.
Thanks a lot!

PostPosted: Sun Dec 27, 2009 1:11 pm
by cinder21
Thankyou Cheer for your reply. Makes sense. Thanks also for opening this thread. I am trying to establish which doctors are willing to at least test for CCSVI via MRI-SWI or doppler or MRV besides Dr.Dake and Dr.Simka. AM finding it hard to do so.

comment on Dr Franceschi

PostPosted: Sun Dec 27, 2009 2:16 pm
by jean-la-grenouille
I agree with the former threads. The venous problem isnt "a simple narrowing that can be enlarged", the venous problem is wide (especially in progressives MS) and presently difficult to solve.

I'm french and can easily speak to Dr Franceschi. He is very careful (that's why he didn't send me to another Dr to be operated "as soon as possible"). I try inclined bed therapy (as he advised me to do), look for any improvement, then, something could be done.

We have to be patient and go on promoting CCSVI, because it is the most important discovery regarding MS we have ever seen.

Jean

Re: If you have received a CCSVI diagnosis...

PostPosted: Mon Dec 28, 2009 2:27 am
by NHE
If you have received a CCSVI diagnosis, then please also start a post in the Tracking Thread sticky. This can be started now and then updated when you have treatment.

Thanks, NHE

PostPosted: Mon Dec 28, 2009 10:21 pm
by prof8
Could someone post anonymously for me on Facebook? Perhaps Joan?
Tested for CCSVI in Dec. 2009 at Stanford.
90-95% occlusion in BOTH lower jugular veins, some occlusion in upper left jugular vein.
I have not had CCSVI treated.
Diagnosed with MS in fall 2007. EDSS is 1-1.5

Thanks so much!!!! :)

PostPosted: Sat Jan 09, 2010 6:19 pm
by mrsilkykat
Cheer -- If I have a private MRV at my local university hospital by an IR/Vasular guy how does that information contribute to the worldwide connection of CCSVI & MS? Where does my data go other than posting it to everyone on TIMS & Facebook.

I am questioning how individual testing contributes to the store and dissemination of valid data.

PostPosted: Sat Jan 09, 2010 7:15 pm
by simone
[quote="cheerleader"]
"Cinder, It is important to establish the connection between venous malformation/stenosis and MS. A variety of doctors are finding this now. "

I agree with you. Has anyone made a list of doctors that can do the testing? Anyone know some in California other than Dake? Not wanting to wait for the studies.

"The first step is identifying the venous problem with venography."

I thought an MRV was the first step then doppler . Still new to this. Greatful for your clarity.

Foggy with an overlay of a cold.