My CCSVI Liberation Journey

CCSVI (chronic cerebrospinal venous insufficiency) is an up and coming discussion in the MS world. The Cleveland Clinic as well as other prominent institutions have been awarded big grants to study CCSVI and it’s correlation to MS.

Symptoms I have had, in addition to my regular MS symptoms, which made me suspect that I may have CCSVI are headaches, a full head (like a chronic sinus infection), freezing cold hands and feet, inability to bend over without feeling like my head is going to explode, and intermittent nose bleeds. I did ask my neurologist if I could get checked for CCSVI, and she ordered me to have an MRV – not the standard for diagnosing CCSVI, but still a start. However, the technicians had no idea what CCSVI was or the proper protocol for an MRV, thus the results of my MRV were read as normal.

I still pushed forward. I got an appointment with a doctor in Albany who has been testing for and performing CCSVI angioplasty procedures for the last year. He also has IRB approval to be studying the correlation between CCSVI and MS. I was there just this past Monday (on my Birthday!!!) for an initial visit and additional testing. The doctor in Albany explained that my MRV was read as normal because it didn’t show the lower part of the jugular veins, which is the case for most MRV’s that are done by hospitals that don’t know about CCSVI. So even though my MRV was normal because it only showed the upper part of my jugulars, my doppler ultrasound showed reflux in both jugulars, left worse than the right. Even then, a doppler ultrasound, only shows positive in 60% of people with CCSVI. So, had that been negative for me, I still would have gone for the venogram, which is the invasive procedure which is the gold standard for diagnosing CCSVI.

Because my ultrasound was positive, I was offered the angioplasty procedure to fix the flow in my jugular veins. I was elated! So now, I have my “liberation” procedure in two stages, on February 8th and 14th. I am getting angioplasty in both of my jugular veins in order to fix the reflux and stenosis, hopefully stopping the progression of my MS and fixing my current symptoms. I will be filming before, during, and after the procedure so that I can have a record of the effects of the procedure on my walking and balance. I am also hoping that it helps with my cog fog, numbness, and fatigue.

I am incredibly excited! And I will be keeping everyone posted!

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