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!
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri