Heard Back from the NIH
Posted: Thu Aug 27, 2009 10:58 pm
Just a quick recap: I've been going down to Bethesda, Maryland to be seen by the doctors and researchers at the NIH, to take part in a "Natural History of MS" study that they're doing. My case is so atypical that they've taken a special interest in it, and have done some additional testing (MRI SPECT, diffusion tensor scans, etc.).
Last Thursday I made my third trip down to the facility, and I had sensory evoked potentials, motor evoked potentials, and an MRI performed. In addition, I brought along my CT venography disc for the NIH radiologists to review.
After reviewing the disk, Dr. Dake told me over the phone that both of my upper internal jugulars were extremely narrowed, and in fact he used the word "pancaked". He recommended that I undergo the stenting procedure, although he made it clear that there were no guaranteed outcomes, and he couldn't even say that there was a direct correlation between the abnormalities and my neurologic disorder. The radiology report that came with my CT scan made no mention of any stenosis, and I consulted with the head radiologists of one of the local hospitals here, a family friend, who reported that my left internal jugular did appear to be strikingly narrowed, which which he thought was a very "odd" finding.
I spoke today to the NIH neurologist who is handling my case (one of the most impressive physicians I've ever dealt with), and she told me that my CT scans were generating a lot of interest down in Bethesda. My left internal jugular is indeed very narrowed, and though the right is slightly narrowed, it doesn't appear to be abnormal enough to be of any concern.
According to the NIH neurologist, upon first viewing my CT scans, the neuroimmunology team agreed that the left internal jugular was abnormal, but questioned whether this was of clinical significance. She explained that they discussed the wide variance in vascular system structure from patient to patient, which can be especially apparent when looking at veins, because they are much more pliable and apt to display variance than the much stiffer arteries.
Upon further examination and discussion, though, the NIH team decided that more investigation is necessary. My narrowed jugular is directly adjacent to the Cervicomedullary Junction, which is where my one troublesome lesion is located. The NIH neuro is very aware of the Zamboni research, and is going to consult with some other specialists, both inside and outside of the NIH, to try to determine the significance of my abnormal CT scan, and what, if anything, should be done about it.
I was advised that the narrowing of the jugular in question would be very difficult to stent, because it's located directly between two bony objects (I think one is a cervical disc, not sure about the other). This is in agreement with what the other radiologist I consulted with said, that he wouldn't recommend stenting that area of the vein.
I'm scheduled to go down to the NIH for at least one more visit, for a lumbar puncture and lymphopherisis (primarily for research, rather than diagnostic purposes), and the Dr. today told me that we should hold off scheduling that visit until she had made further consultations regarding my CT scan, because there was a chance that they'd want to do more imaging studies (most likely Dopplers, as they believe that MRV's are too prone to artifacting, especially when looking for areas of insufficient blood flow) to get a clearer picture of what was going on with my CNS vascular system.
In short, the doctors and researchers at the NIH are very interested in the abnormality that showed up in my CT scan, especially so since my case is very atypical to begin with. I was told to expect another call in a week or two to tell me what their continued consultations had suggested.
So, the saga continues...
Last Thursday I made my third trip down to the facility, and I had sensory evoked potentials, motor evoked potentials, and an MRI performed. In addition, I brought along my CT venography disc for the NIH radiologists to review.
After reviewing the disk, Dr. Dake told me over the phone that both of my upper internal jugulars were extremely narrowed, and in fact he used the word "pancaked". He recommended that I undergo the stenting procedure, although he made it clear that there were no guaranteed outcomes, and he couldn't even say that there was a direct correlation between the abnormalities and my neurologic disorder. The radiology report that came with my CT scan made no mention of any stenosis, and I consulted with the head radiologists of one of the local hospitals here, a family friend, who reported that my left internal jugular did appear to be strikingly narrowed, which which he thought was a very "odd" finding.
I spoke today to the NIH neurologist who is handling my case (one of the most impressive physicians I've ever dealt with), and she told me that my CT scans were generating a lot of interest down in Bethesda. My left internal jugular is indeed very narrowed, and though the right is slightly narrowed, it doesn't appear to be abnormal enough to be of any concern.
According to the NIH neurologist, upon first viewing my CT scans, the neuroimmunology team agreed that the left internal jugular was abnormal, but questioned whether this was of clinical significance. She explained that they discussed the wide variance in vascular system structure from patient to patient, which can be especially apparent when looking at veins, because they are much more pliable and apt to display variance than the much stiffer arteries.
Upon further examination and discussion, though, the NIH team decided that more investigation is necessary. My narrowed jugular is directly adjacent to the Cervicomedullary Junction, which is where my one troublesome lesion is located. The NIH neuro is very aware of the Zamboni research, and is going to consult with some other specialists, both inside and outside of the NIH, to try to determine the significance of my abnormal CT scan, and what, if anything, should be done about it.
I was advised that the narrowing of the jugular in question would be very difficult to stent, because it's located directly between two bony objects (I think one is a cervical disc, not sure about the other). This is in agreement with what the other radiologist I consulted with said, that he wouldn't recommend stenting that area of the vein.
I'm scheduled to go down to the NIH for at least one more visit, for a lumbar puncture and lymphopherisis (primarily for research, rather than diagnostic purposes), and the Dr. today told me that we should hold off scheduling that visit until she had made further consultations regarding my CT scan, because there was a chance that they'd want to do more imaging studies (most likely Dopplers, as they believe that MRV's are too prone to artifacting, especially when looking for areas of insufficient blood flow) to get a clearer picture of what was going on with my CNS vascular system.
In short, the doctors and researchers at the NIH are very interested in the abnormality that showed up in my CT scan, especially so since my case is very atypical to begin with. I was told to expect another call in a week or two to tell me what their continued consultations had suggested.
So, the saga continues...