If you have received a CCSVI diagnosis....
- cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
If you have received a CCSVI diagnosis....
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
To post, click on the blue CCSVI below-
thanks,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
WILL DO..
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)
Thanks to all...
Together we can move mountains!!!!
From NY
Leetz (campather-now interested in CCSVI)
- whyRwehere
- Family Elder
- Posts: 917
- Joined: Mon Oct 03, 2005 2:00 pm
- Contact:
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
angioplasty for 3 blockages in internal jugular, no stents, missing pre sacral venous plexus (both sides)...no hope for that.
Why
- cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
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.)
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
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.)
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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
- jean-la-grenouille
- Family Member
- Posts: 58
- Joined: Sun Nov 01, 2009 3:00 pm
different kinds of CCSVI
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
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
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?
22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI
- cheerleader
- Family Elder
- Posts: 5361
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
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
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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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.
22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI
- jean-la-grenouille
- Family Member
- Posts: 58
- Joined: Sun Nov 01, 2009 3:00 pm
comment on Dr Franceschi
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
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...
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
Thanks, NHE
- mrsilkykat
- Family Member
- Posts: 67
- Joined: Tue Dec 01, 2009 3:00 pm
- Location: Berkeley, CA
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.
I am questioning how individual testing contributes to the store and dissemination of valid data.
Kat
[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.
"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.
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