CCSVI treatment coming to the east coast...soon......

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

CCSVI treatment coming to the east coast...soon......

Postby bestadmom » Mon Oct 12, 2009 4:12 pm

This was posted on msworld.org forum and the poster gave me permission to crosspost here:

"Went to an MS Conference this morning...

I'm a nurse and this morning, I was told by our wonderful neuro fellow that Patricia Coyle MD was giving a lecture on MS today. So went and she promised at the beginning of the lecture that she was going to "drop a bomb" about MS later on. She went over the usual stuff about MS etc. and then she brought up CCSVI and let me tell you, it was exciting. The lecture was for neurology residents and neurology attendings and this CCSVI thing went over big. I spoke to Dr. Coyle after the lecture and told her I wanted the doppler study! She wants to bring this study/treatment to our hospital (Stony Brook University Hospital) and have our neurointerventional radiologists do the procedure.

Here are the two articles I was given by the MS research coordinator:

"Chronic Cerebrospinal Venous Insufficiency in Patients with Multiple Sclerosis" P. Zamboni

and in the Journal of Neurological Sciences:

The value of cereral Doppler venous haemodynamics in the assessment of multiple sclerosis

Just passing the word."


This can't happen fast enough as far as I'm concerned, and am calling Dr. Coyle's office tomorrow. Here's her contact info:

Patricia K. Coyle, MD
Professor and Acting Chair
Department of Neurology
Health Sciences Center T12-020
SUNY @ Stony Brook
Stony Brook, NY 11794-8121
Phone: (631) 444-8188
Fax: (631) 444-1474

Michelle
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 2:00 pm
Location: CT

Advertisement

Postby Rokkit » Mon Oct 12, 2009 4:14 pm

Wow! This is awesome news!
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 2:00 pm

Postby CRHInv » Mon Oct 12, 2009 4:33 pm

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
Fantastic!
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ

Postby CNClear » Mon Oct 12, 2009 4:44 pm

YEAH!!!!!! :D :D :D :D :D :D :D

Lisa
User avatar
CNClear
Family Member
 
Posts: 96
Joined: Fri Aug 28, 2009 2:00 pm
Location: Near Atlanta, GA

Postby sewwhat » Mon Oct 12, 2009 4:49 pm

Wow that's great! I choked up a lil' reading that...so cool!
User avatar
sewwhat
Family Member
 
Posts: 35
Joined: Mon Sep 14, 2009 2:00 pm

Postby Needled » Mon Oct 12, 2009 4:59 pm

You're awesome, Michelle. Great news, thank you!
User avatar
Needled
Family Elder
 
Posts: 361
Joined: Wed Jan 14, 2009 3:00 pm
Location: Connecticut

Postby cheerleader » Mon Oct 12, 2009 5:02 pm

I met Dr. Coyle in Bologna, and she was an open and gracious person. She seemed excited by the CCSVI research, and this confirms that observation. This is such amazing news- there will be neurologists that understand this paradigm, and as they come on board, more will consider it.
Thanks so much for sharing, Michelle-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby jay123 » Mon Oct 12, 2009 5:44 pm

Yes great, but as a neurologist is she only talking about getting the diagnostic tests started? We really need to get more vascular surgeons interested in performing the surgery. I am surprised that at the Jacob's clinic they are only doing the dopplers and MrV's, but not the surgery.
You would think some surgeons would look at this and even if they don't see the humanitarian and research side of it (which it appears Dr. Dake see's) they would see the money making side at least and jump on this!
User avatar
jay123
Family Elder
 
Posts: 381
Joined: Mon Sep 21, 2009 2:00 pm

Postby cheerleader » Mon Oct 12, 2009 5:52 pm

She wants to bring this study/treatment to our hospital (Stony Brook University Hospital) and have our neurointerventional radiologists do the procedure.


sounds like treatment to me. And Jacobs will treat in the future, as well.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby bestadmom » Mon Oct 12, 2009 5:53 pm

Dr.Coyle told one of the nurses that she wants to start doing the diagnostics and procedure and has 2 interventional neuroradiologists from Stony Brook in mind. They might not know this yet, however. I think the procedure would need peer review approval. Hopefully the Jacobs Neurological diagnostic test numbers will support the next step, and we should have an idea about them soon.

I've been working on an email campaign with our other 2 TIMS resident Connecticut members. So far we've hit every university hospital interventional neuroradiologist in CT, and I've expanded my reach to NY and NJ university hospitals. I added the two guys from SB to my list, and we will send them something later this week when we have all of the email addys...and I work from home and can get it done.

We need to get the docs to know and talk about this, if not to us, then to eachother.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 2:00 pm
Location: CT

Postby jay123 » Mon Oct 12, 2009 7:24 pm

OK, my bad. I did do a search on "neurointerventional radiologists duties" and saw that their duties do include (amongst other) stents.
I thought this wold be more of a vascualr surgeon specialty.
User avatar
jay123
Family Elder
 
Posts: 381
Joined: Mon Sep 21, 2009 2:00 pm

Postby mrhodes40 » Tue Oct 13, 2009 6:35 am

This is balm to my soul! What great news! :D :D :D
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 2:00 pm
Location: USA

Postby Sarahbellum » Tue Oct 13, 2009 9:05 pm

bestadmom wrote: Hopefully the Jacobs Neurological diagnostic test numbers will support the next step, and we should have an idea about them soon.


Define "soon." I am subject 400 something out of 1,700 and I won't be tested until November at the Jacobs so don't hold your breath. Soon may be a year from now or longer.
User avatar
Sarahbellum
Family Member
 
Posts: 37
Joined: Sun Sep 27, 2009 2:00 pm
Location: east coast

Re: CCSVI treatment coming to the east coast...soon......

Postby CureIous » Tue Oct 13, 2009 9:08 pm

bestadmom wrote:This was posted on msworld.org forum and the poster gave me permission to crosspost here:

"Went to an MS Conference this morning...


Stony Brook, NY 11794-8121
Phone: (631) 444-8188
Fax: (631) 444-1474

Michelle


This is so incredibly exciting. Really, it sends a message to all specialties to come on in, the water's fine, at least do the testing and see what you find... M.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby bestadmom » Wed Oct 14, 2009 4:04 am

Sarahbellum,

Just sent you a pm.

Michelle
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 2:00 pm
Location: CT


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