CCSVI beyond Stanford, and in Boston in particular

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

CCSVI beyond Stanford, and in Boston in particular

Postby Arcee » Thu Sep 17, 2009 4:49 pm

Hello -

As I noted in the patient log thread, I had my follow up visit in Boston today, at Brigham & Women's, with a doctor whom Dr. Dake recommended. I asked about other patients going there for CCSVI, and, at least at this point, I think I got somewhat of a lukewarm or mixed bag response. On the one hand, he said that they totally could do the tests, but on the other hand, he said that they didn't have anyone who could read them. Also, they do a lot of vein stents, but have never done them this close to the brain. (Mine is quite high in the left jugular.)

I continued the discussion, pointing out that whichever hospital in Boston takes the lead on this will have a ton of business. I think he concurred with that, but also said that he thought some neurologists should be involved and perhaps other colleagues of his. And that certainly makes sense, but the tone was underwhelming.

It wasn't a very satisfying discussion, and I realized that I have been pretty fortunate in having not experienced what so many of you have posted regarding physicians' responses as my neuro spoke with Dr. Dake and my PCP is as thrilled as any of us, and of course Dr. Dake is the inter-disciplinary all-star. So I pursued the question with Dr. Dake, asking him what he would suggest for people here. He said that he wants to evaluate my file from the Brigham, and then will let me know his thoughts.
So I will follow up with Dr. Dake, and will raise the issue when I head over to the Partners MS Clinic in a few weeks. If any of you are interested in plotting strategy, PM me. I think there is a Bologna attendee or two we should reach out to, and other options as well. This city has the skills and resources to do this -- we just have to find the best leverage points.

I did feel like I had a small victory in my emissary mode today. I had to fill out a patient information sheet and since it was for the Cardiovascular Center, there were lots of medical conditions listed that did not apply to me so on the line marked other, I wrote "MS" and then I also wrote CCSVI. I got a big kick out of putting MS in quotes and adding CCSVI!

- Randi
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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Arcee
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Postby cheerleader » Fri Sep 18, 2009 8:08 am

thanks for the report- randi.
Glad the stent is looking good, and you've found a local team for follow-up. I think the response you got is pretty typical- this is a new area, and for most doctors, they have enough work in their established field. Because Stanford is always looking at cutting edge therapies (dear Patrick Swayze was in a clinical trial there) they attract doctors and researchers that want to push the envelope. I did not realize how rare Dr. D was when I approached him with all of this. I've since learned...

Everyone is waiting to see tangible results, MRI reports, restenosis reports- before signing on- but there is a momentum growing as more patients talk about this with their docs and get tested.
thanks for all of your ideas and work!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Fri Sep 18, 2009 9:55 am

Yes, more results data will help, and there definitely is momentum. My PCP is circulating the information to neurologists and patients, and my neurologist is keeping abreast too. I'll keep pursuing the other local leads as well. (Your comment about your mother was inspiring.)

Dr. Dake truly is rare. I was on a flight the other day and checking what audio files I had to listen to and there was this one of an interview with Dr. Dake that someone on this board must have posted months ago and I had downloaded and forgotten. I listened to it and what is remarkable is that it was all pre-CCSVI and he was talking about the value of an interdisciplinary approach. Such foreshadowing!

And Cheer, whenever I think of thanks in this world, I think of you.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
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Posts: 338
Joined: Wed Jan 05, 2005 4:00 pm
Location: Massachusetts, USA


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