Well after months of calling and talking to the best Doctors in Neurology and Radiology in Chicago, and being scoffed at, I was able to receive an MRV from an Interventional Radiologist who was able to conform to the Stanford Protocol. I have to say he was incredible, as was his Tech who after never imaging the procedure before was able to adjust to the specs like a musician playing flawless for the first time. This is a medium size local hospital. Originally, the MD even offered to do the endovascular procedure, claiming he does more difficult procedures than vein angioplasty every day. I was elated for about 24 hours, until the word came back that it is too experimental. The rug was pulled, and then the frustration set in.
I will keep my contact anonymous, but I will mention that he is aquanted with Dr Dake.
After some persuasion we did agree to do the imaging....
and here are my results for you Jr Surgeons out there...
Axial T@ and Flair, sagittal T1images, sagittal FLAIR images, post gadolinium T1 images were obtained as well as the phased contrast exam also was performed, and contrast-enhanced MR venogram was performed using real time imaging.
There were patent superior sagittal and inferior sagittal sinus vein of Galen, interal cerebral veins. The left transverse sinus is smaller than the right. Sigmoid and jugular veins are patent.
The left internal jugular vein is very small 2 mm in diameter, compared to the right side. The right internal jugular vein is 13 mm, at the level of the inferior thyroid gland, to about 3 mm in diameter, in the lower neck is 11 mm, and in the upper neck is 11 mm again.
1. Left transverse sinus is smaller than the right.
2. Left internal jugular vein is very small.
3. There is narrowing of the right internal jugular vein at the level of the thyroid for a length of 2 cm.
Soo, that is my story....Good news finally identifying there is a stenosis, Bad news, no treatment available.
I was one of the December cancellations at Stanford, and at this time I will have to hope for the good Dr to receive his funding to begin the trials.
And then be lucky enough to get in line for follow up.
I am meeting with my local Radiologist, to try and begin imaging others in the area, and if he will consent I will post the details. I have a mini network of MS'rs that would benefit from the image step.
I honestly believe my Dr would be able to treat as well...he has a fearless nature and great confidence among other qualities. Maybe someday.
Keep on keeping on
DX 1999 EDSS 4.5 Stanford Appointment cancelled 12-09