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

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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bestadmom
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CCSVI treatment coming to the east coast...soon......

Post by bestadmom » 9 years ago

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

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Post by Rokkit » 9 years ago

Wow! This is awesome news!

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CRHInv
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Post by CRHInv » 9 years ago

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
Fantastic!

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CNClear
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Post by CNClear » 9 years ago

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

Lisa

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sewwhat
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Post by sewwhat » 9 years ago

Wow that's great! I choked up a lil' reading that...so cool!

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Needled
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Post by Needled » 9 years ago

You're awesome, Michelle. Great news, thank you!

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cheerleader
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Post by cheerleader » 9 years ago

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

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jay123
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Post by jay123 » 9 years ago

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!

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cheerleader
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Post by cheerleader » 9 years ago

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

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bestadmom
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Post by bestadmom » 9 years ago

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.

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jay123
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Post by jay123 » 9 years ago

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.

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mrhodes40
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Post by mrhodes40 » 9 years ago

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

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Sarahbellum
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Post by Sarahbellum » 9 years ago

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.

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

Post by CureIous » 9 years ago

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

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bestadmom
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Post by bestadmom » 9 years ago

Sarahbellum,

Just sent you a pm.

Michelle

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