Trying to Get Referral for NYC

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

Postby cheerleader » Fri May 22, 2009 4:47 pm

another thought, and something I talked with Dr. Dake about....he mentioned this connection to me when we met, since it's already a well recognized medical condition- venous congestive myelopathy.
Print out this research too- A patient thought to have MS was found at autopsy to have "enlarged, tortuous veins" along the spine. Since venous congestion is recognized as causative in this type of myelopathy, it might be easier for your doc to wrap his/her head around it after reading these...

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Postby peekaboo » Fri May 22, 2009 5:41 pm

Cheer You a a marvel :D lots of great info up your sleeve :!:
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Postby marcstck » Fri May 22, 2009 5:56 pm

Thanks cheer. I'll print out both reports and give them to my PCP. He's a pretty open-minded guy, so I don't think he'll have problems scheduling me for the CT scan. But you never know...
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Postby CureOrBust » Sat May 23, 2009 2:47 am

marcstck wrote:He recommended that I ask my PCP to order me a venous CT scan, from the head to the diaphragm. He explained that getting proper results from MRV is more of an art than a science, and that CT scans are more mechanical in their application.
I also spoke with Dr Dake, and he did not know anyone in Sydney he could point me too.

My MRI clinic are happy to do the MRV, but requested clear instructions on exactly what/how/where to scan. I asked Dr Dake if there is any specific scan or documentation etc to guide them, and he said no. He also recommended I get a CT instead, from the top of my head, through the diaphragm.

He was specific in ensuring I made the radiologist aware it was a venous investigation, not arterial (ie not an angiography). He said they should "apply more delay" to ensure this case.

I also had sent an email to one of my neurologists informi9ng him I would be getting an MRV and asked if he was intereste4d in taking part. I got a response from him saying he would be interested in arranging and performing the MRV. But, I think I may go for the CT since it is more reproducible, and less operator dependent.
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Postby Needled » Sat May 23, 2009 7:31 am

So a CT scan is as acceptable as an MRV? I didn’t realize that. I was having problems finding a local MRV, but if I just need an interventional radiologist who will do a CT scan (making sure it’s a venous investigation), this would make it much easier.

I sent Dr. Zamboni’s paper to my PCP and he called me back 2 days later. He said it was very interesting and he wanted me to talk to my neuro. Luckily, my annual checkup with him is next week. Both docs are in the same hospital system, so between them I’m hoping they can get me hooked up with a CT scan and a interventional radiologist, and from there a vascular doctor. That’s my current plan, anyway.
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Postby BEZALEL » Wed Jan 06, 2010 11:06 am

hi marc,

i just saw this forum you startet, i live in ny, my neuro is at columbia presp., i will see him next week, and ask him, abt. doing an mrv etc., there is also a study going on in buffalo, i think of joining enrolling for march '10, if you are interested, i will send you the link.......since i know an angio dr. here at columbia, i asked him yesterday, he seemed ok with the procedure with a stent to keep it open, but would like to see a trial being done......he also said, i could have the mrv done here, but have to see if the insurance pays......

did you have your mrv and else done yet?

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Postby SammyJo » Wed Jan 06, 2010 1:09 pm

Thanks for the info on MRVs being an art form too, I hadn't heard that. I have now given up on trying to find someone in Seattle who can do the MRV, even though I had a copy of Dake's protocol. I have booked my 2 month follow up next week at Stanford.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 |
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