Anything happening in the Northeast US?

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

Anything happening in the Northeast US?

Postby tzootsi » Mon Nov 23, 2009 8:41 am

Hi, I'm a newbie here, the husband of a woman with a mild case of ms. We live in New Hampshire USA. Anyhow, this whole CCSVI issue has got us very excited, but I can't believe there is no action yet in the northeast even as far as testing. Does anyone have any leads on when things may start to happen up here? We are very tempted to just take the plunge and set up an appointment at Stanford, but a few things are holding us back:
- Maybe something will happen closer by - with all the medical institutions in the New England/New York metro area one of them has got to get on the stick.
- My wife's condition is fairly mild and doesn't really fit any ms category: a heavy right leg, slight weakness in the right arm, slight balance issues. She has been pretty stable this way for quite some time. Maybe we should wait until techniques are further refined, and the 'stent vs balooning' issue is more resolved?

As few more comments from me as a newbie to this forum -
It appears to me that MS comes in many flavors, and treatments such as the CRAB drugs, antibiotics, stem cells, etc, work fairly well on some, but not others. On the other hand diet modification and LDN (my wife does both of these) seem to help most folks at least somewhat. CCSVI appears to be the by far the most promising thing on the table, and the pioneers who have done the procedure have very moving stories. The Canadian video was amazing (I was the person who made Ashton Embry aware of CCSVI) - where is 60 minutes?
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Postby bestadmom » Mon Nov 23, 2009 9:25 am

Hi,

Currently there is nothing in the US outside of Stanford, treatment-wise. There is a small group of us trying to spread the word in MA, CT, NY metro area and NJ.

I suggest contacting interventional radiologists at the university med schools in your area - Dartmouth for sure. The more these doctors hear about CCSVI, the more likely they will be to pay attention to it.
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Postby tzootsi » Tue Nov 24, 2009 9:58 am

OK!!! I just got off the phone with the chief interventional radiologist at Dartmouth Hitchcock Medical Center in New Hampshire. He had never heard of CCSVI, but was very receptive, he said it sounded very cool, and when can your wife come in (in a joking way at this point). I sent him a bunch of URL's to look at. Also spoke to the coordinator of MS trials at Dartmouth Hitchcock, she also never heard of CCSVI, and I gave her an earful.
I've also contacted Haake's office via e-mail (they are no longer answering their phones), they promptly got an e-mail back to me to tell me to contact the study at Jacobs. However, from what I can tell, Jacobs is not telling their participants what they find. It's not worth it to us to drive 7 hours to Buffalo for something like this.
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Postby Arcee » Tue Nov 24, 2009 10:30 am

Tzootsi, I just sent you a PM to offer up additional East Coast thoughts...
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Dejibo » Tue Nov 24, 2009 12:01 pm

I spoke to Stacey and Dr. Kasper at Dartmouth Hitchcock in Lebanon, and they said they are now getting flooded with requests to look into the reports of this new discovery. I was told they are in fact researching the whole thing. Lets see how long this takes.
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Possible interest in New Jersey

Postby Ruthless67 » Thu Nov 26, 2009 8:28 am

There was a recent headline, Scientific Link To Autism Identified, on Medical News Today. What I wanted to bring up about it is the Center its self. Located in New Jersey.
According to The Center's founder, William McFaul, a retired business person and not a member of the scientific community, "Because of its universal applicability, our Life Sciences group has already used the model as a tool to identify highly probable causal paths for several illnesses and disease entities.” McFaul added, "The Center is seeking to affiliate with academic centers to provide its model for homeostasis to the scientific community for use as a tool to enable researchers to identify root causes of illnesses and disease entities. The Center is a think tank that creates models. We are not an operating company with the resources to educate individuals or organizations on the application of the models we create.”
My thought was maybe as a Think Tank, they’d be interested in looking into CCSVI. Anyone in New Jersey willing to look into it? Might be a lead and pan out, might not.
Lora http://www.medicalnewstoday.com/articles/171457.php
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