NIH
Posted: Thu Jul 16, 2009 10:44 am
Hey everyone.
For the past year, I've been part of an MS screening protocol at NIH--I go a couple of times a year for MRIs, exams and to pester the very nice neuro there with my questions. This time I came armed with Zamboni et al. I was worried she would shut me right down--but in fact, she was familiar with the study and said they are watching it with interest and had even gone as far as to find out if they could run a similar study there at NIH (turns out they can't because they don't have the correct Doppler equipment--gee--your tax dollars NOT at work folks.) She is, without putting words in her mouth, watchful but cautious about Zamboni's work because it is so new and his results haven't been duplicated in large numbers elsewhere. (Not sure that's actually correct--research mavens out there can weigh in!!) Her objection was a little silly actually--she felt it was impossible to be getting something that was turning up in so many MSers!!! (I refrained from saying--but isn't that a good thing? To finally find a common element??) She also said it would be important for other groups to duplicate Z's results because MRV is notoriously faulty and prone to artifacts. It's much more accurate for MRA because the blood flow in the arteries is more robust. But, she did not dismiss it out of hand. In fact, when I brought up my TMJ, wisdom teeth, headache history she said she would look into getting an MRV and felt that my history merited it. (In my case, my TMJ was so bad that the mandibular joint would lock and pop out...not fun) So go figure...next trip I may be getting the works...However, she did say, even if we do see something with the jugular, what do you do with that info?
So I brought up Dr. Dake--who she also knew about (I guess these research neuros are actually researching!). But she was more cautious on that front--not willing to go out on a limb and say this might actually be a viable intervention and stressed that the surgery carried real risks. She felt like there needed to be real studies with controls (I know--how do you do controls on a surgical procedure? I didn't ask that....) and that more time had to pass. More studies need to be published. More science and not just anecdotal evidence. Yadda-yadda. But as someone else said on here--what happens when all those with MS are just "out of wait and see." A change is coming, right?
So, a mixed bag of results. NIH takes a pretty conventional approach--no surprise there. But I take some comfort in knowing that her team is listening to the tom-toms at least. And if I get an MRV, that's great (I did mention that I thought there might be special settings they would need....and she said she would look those up). Wouldn't that be cool if a couple of blocked jugs were right there staring them in the face??!!!
Anyway, I thought I would share with the group. And to all of you at Stanford, my heart and my prayers go out to you. You are so brave--willing to go where no one has gone before. God bless.
KKA
For the past year, I've been part of an MS screening protocol at NIH--I go a couple of times a year for MRIs, exams and to pester the very nice neuro there with my questions. This time I came armed with Zamboni et al. I was worried she would shut me right down--but in fact, she was familiar with the study and said they are watching it with interest and had even gone as far as to find out if they could run a similar study there at NIH (turns out they can't because they don't have the correct Doppler equipment--gee--your tax dollars NOT at work folks.) She is, without putting words in her mouth, watchful but cautious about Zamboni's work because it is so new and his results haven't been duplicated in large numbers elsewhere. (Not sure that's actually correct--research mavens out there can weigh in!!) Her objection was a little silly actually--she felt it was impossible to be getting something that was turning up in so many MSers!!! (I refrained from saying--but isn't that a good thing? To finally find a common element??) She also said it would be important for other groups to duplicate Z's results because MRV is notoriously faulty and prone to artifacts. It's much more accurate for MRA because the blood flow in the arteries is more robust. But, she did not dismiss it out of hand. In fact, when I brought up my TMJ, wisdom teeth, headache history she said she would look into getting an MRV and felt that my history merited it. (In my case, my TMJ was so bad that the mandibular joint would lock and pop out...not fun) So go figure...next trip I may be getting the works...However, she did say, even if we do see something with the jugular, what do you do with that info?
So I brought up Dr. Dake--who she also knew about (I guess these research neuros are actually researching!). But she was more cautious on that front--not willing to go out on a limb and say this might actually be a viable intervention and stressed that the surgery carried real risks. She felt like there needed to be real studies with controls (I know--how do you do controls on a surgical procedure? I didn't ask that....) and that more time had to pass. More studies need to be published. More science and not just anecdotal evidence. Yadda-yadda. But as someone else said on here--what happens when all those with MS are just "out of wait and see." A change is coming, right?
So, a mixed bag of results. NIH takes a pretty conventional approach--no surprise there. But I take some comfort in knowing that her team is listening to the tom-toms at least. And if I get an MRV, that's great (I did mention that I thought there might be special settings they would need....and she said she would look those up). Wouldn't that be cool if a couple of blocked jugs were right there staring them in the face??!!!
Anyway, I thought I would share with the group. And to all of you at Stanford, my heart and my prayers go out to you. You are so brave--willing to go where no one has gone before. God bless.
KKA