CCSVI diagnosed by Buffalo - now what?

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

CCSVI diagnosed by Buffalo - now what?

Postby mshusband » Tue Feb 16, 2010 3:07 pm

OK, for all you Americans on here. I asked this question before, but didn't really get an answer.

This is a hypothetical (for now) ... but ... in the case of my wife. She displays all the CCSVI type issues ... (family venous history, um, just anything anyone has mentioned as a possible link to CCSVI) ...

Let's say we go to Buffalo, and pay the $4,500 to get tested for CCSVI and it comes back positive. They give you your results (I would assume if you pay that much).

What do you do with them then?
What good are they if you still need to find an interventional radiologist to perform the angioplasty/stents?
Do we need to start a letter writing campaign to every interventional radiologist in the country?
What would be the best way to go about this?
I'm just concerned we go get this diagnosis, and then can't do anything about it ... anyone else?

Is anyone else considering going to Buffalo and paying - just to find out?
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dx, then what?

Postby aliyalex » Tue Feb 16, 2010 4:11 pm

Albany is also doing a CCSVI study as well. they will be doing diagnostics and angioplasty only- no stents, as treatment. Send name, address, email, phone #, DOB to
wilcoxm@albanyvascular.com

there was an entry on facebook ccsvi site that elaborated on the offerings. the doc is dr mehta who is googleable.
Last edited by aliyalex on Tue Feb 16, 2010 5:23 pm, edited 1 time in total.
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Postby MS_mama » Tue Feb 16, 2010 5:10 pm

well, I would first try to find someone in your area who will order the right tests. Give them Dr. Haacke's protocol and see if the radiologist will cooperate. That way it will be covered by insurance. I think the most effective way might be to come at it strictly from venous angle--that you want this potential venous problem diagnosed. It might be easiest just to work through the primary care physician.

Then if you get scans done, you can move from there and take them to a vascular specialist. Go armed with presentations from Dr. Dake, Haacke, and Simka. Someone else here suggested to contact a vascular specialist who deals with strokes because they have more specialized knowledge in the area we are dealing with.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby pegmegrund » Tue Feb 16, 2010 5:49 pm

With positive results from Buffalo in hand, I suspect you'll get the attention of vascular surgeons or interventional radiologists. Yes, you might have to do that leg work of phone calls or letter writing, but if it means treatment, it is worth it.

Rather than asking them for testing that insurance won't likely cover, the question becomes 'Something is wrong with my veins - here are the test results from Buffalo. Can you help me?'

Here is Prof8's example (with positive test results from Stanford):

http://www.thisisms.com/ftopict-9541.html

Keep us posted on your progress!
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Postby Wichita » Tue Feb 16, 2010 6:39 pm

I believe there are at least a few thousand of us in the same boat you are describing - and a few hundred thousand other Americans with MS who have not even heard of CCSVI.

Yes, we have signed up to pay $4500 out of pocket for my wife to be tested in Buffalo. We did that on the day that the newsletter came out announcing the availability of testing.

We also signed up for the studies with Dr. Mehta in Albany, and Dr. Laredo at Georgetown.

Also, we have been talking to local doctors about CCSVI, including our family doctor, my wife's neurologist, and three different radiologists. One is a guy who treats strokes and aneurysms who said it is no big deal to him to do angioplasty and/or stents in the jugular veins. He said those procedures would come with a large price tag (tens of thousands) and most of the money would go to the hospital, not the surgeon. So, he says to work with our GP and insurance company to find a way to have it covered by insurance. This I think is one key reason to get tested - to be able to show a defect that requires treatment for insurance purposes.

The other key reason is the time element. If your wife's MS is stable, and not progressing, the best course might be to wait for the studies to wrap up, and the treatment to become mainstream medical practice. In our case, with her MS symptoms becoming more severe in recent years, it seems more prudent to accelerate the process, even if it means more out of pocket expense, and a lot more uncertainty about where the treatment will come from, and whether it will be safe and effective.

These are not easy decisions to make, and I am glad we have a forum where we can bounce ideas off of others in the same boat!
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Postby jilthepil » Tue Feb 16, 2010 7:13 pm

you have several options just as wichita stated above. I would stay on all the lists mentioned until you figure out what will best work for you.

If you have the protocol and you have someone near you that can do the protocol PROPERLY, I would suggest staying close to home and trying to get your insurance to cover it at their portion. This can be done if your GP writes a referral that says "Scan for CCSVI with SWI protocol". If you get the scans and find out - then step #2 is finding a willing surgeon. I think a willing surgeon will be easier than you think if they see a stenosed neck.
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Postby Cece » Tue Feb 16, 2010 7:46 pm

Wichita wrote:If your wife's MS is stable, and not progressing, the best course might be to wait for the studies to wrap up, and the treatment to become mainstream medical practice.


Is there MS that does not progress? My understanding of the disease is that there is a lot of damage being done, even very early in the disease process, and that remissions are not an actual end to the behind-the-scenes damage that continues.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Now What?

Postby elyse_peace » Tue Feb 16, 2010 9:49 pm

Hi Cece. I have read in many ms magazine articles that, whether or not one takes disease modifying meds to reduce exacerbations and symptoms, in the end the result is the same. So, I agree with your understanding that ms progression is the disease process.
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Buffalo Study

Postby combat » Wed Feb 17, 2010 3:53 am

Yes I signed up for the testing (Core Package) on 4 February, immediately I saw the news letter.

I have not heard anything from them yet.
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