It looks like I'm finally on my way to liberation after doing what I could here locally. I just got my first MRI since 2004, which showed 16 brain lesions including one in the brainstem, plus 2 large upper c-spine lesions and one a bit further down in the c-spine. I was also able to get an MRV done according to protocol, should have been brain, neck and chest but somehow only wound up with neck scans. Insurance refused to pay but I got it done anyway. The report says in part:
Congenitally hypoplastic left transverse sinus, and jugular bulb. The already small left internal jugular vein, however, also appears to have a relatively significant degree of stenosis just below the skull base.
Interesting that they used the word "congenitally." Hypoplastic means underdeveloped.
The scans are fascinating (to me anyway), a right jugular that is described in the report as "robust" and a left internal jugular that is "extremely small at the level of the scalene muscles. As seen on (one of the) acquisition images, it is no more than a millimeter in diameter." You can see how the left looks like a mess of spaghetti compared to the right (yes the image appears reversed). I can't figure out what's what in that tangle:
The important thing is, I fit the pattern and there is stenosis, although I'm curious about the azygos since I have spinal cord involvement.
I got the MRV on June 1st. The next day I received an email from Euromedic in Katowice, Poland (Dr. Simka), from whom I had long given up hope ever hearing anything since emailing late last Dec. with no reply. They asked if I could come on June 25th for treatment due to an unexpected opening. We didn't waste much time debating. We checked with my neuro, who says he can't fully recommend it since he has not visited the facilities, but he has heard good things and wishes me the best. Plus he wants to evaluate me when I return. My PCP is also intrigued. So we raided our meager retirement acct despite the stiff penalties and off we go. Our plane leaves the 23rd and we arrive on the 24th, returning on the 30th.
It is really an urgent matter for me. Even typing this, my left hand has completely frozen up several times so I have to keep stopping and starting. I can just barely manage to walk very slowly with a rollator and it is laborious with foot drop in both feet. I don't have the arm strength to propel myself in a manual wheelchair so next step would be a power chair I guess. Needless to say I can't drive. My smile still works, though, and I have done nothing but exercise those smile muscles these past few days. I am thrilled and thank God for this open door.
I will keep everyone posted and look forward to meeting whoever will be there!
Thanks to the pioneers who have paved the way. You are my heroes.