Thanks for sharing, Johnny....the pics are incredible. As I'm sure you realize they are part of a very complex story.
Venography is the only way. Once inside, Dr. Dake confirmed Jeff's high pinching of the jugular veins. His lower jugulars, valves and azygos were perfect. Jeff had 2 following venographies to clean up restenosis in the high area, and they showed the same reality. EVERYONE is different. Which finally explains why every MS patient presents with different disabilities, lesion loads, and progression.
Dr. Dake did not just treat high jugulars, and I am becoming really tired of this mythology being perpetuated online. He treated many different forms of stenosis. It just happens that Jeff went first. And Dr. Zamboni confirmed with me and Dr. Dake in the month between Jeff's MRV and venography that he had patients who had presented as Jeff did (with high jugular stenosis and LOTS of brain lesions- Jeff had over 20), but he did not find a way to treat them which lasted. Jeff and I are thankful that Dr. Dake treated him. He is awake and not progressing and we take a day at a time. There is not one pattern of CCSVI. High jugular blockage can present on its own (due to outside muscular or bone impingement) without lower venous involvement. The consistent is the fact that only once inside, with the catheter in the veins, can the areas of stenosis be located and repaired.
Doppler, echo-doppler, transcranial doppler, MRV are only indicators. They can be good indicators, but they are not precise. Everyone is different. I will say this again. And I thank Dr. Dake for treating my husband.
I am extremely uncomfortable with patients and doctors making diagnoses online. I have always said, if at all possible- go local and visit a doctor you trust, who will take the time necessary to deal with your specific case.
Court may have lower venous involvement, but that will only be clear once the venography is done. Wishing you both the best and some answers, Johnny.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09