Hello my friends,
had yesterday my second yearly check for new AVM in my spinal cord. After 1 hour contrast MRI no swelling or myelopathy visible, so no reason for spinal angio for further controls.
No official T8-T12, incomplete with Brown Sequard Syndrom.
Its a downgrade of the Level. But a upgrade for my physically health I hope.
My Professor Dr. Dr. (more is not possible in germany) is the president of the german Neuroradiology association. The best in germany, perhaps best in europe.
And I am only lucky to "have" him, cause my desease is so rare (1:200 000), that it was a adventure for him to help. Spinal dural AVM with my type was like a battle for him (and me btw....).
So yesterday I had the time to have a longer talk to him. After they made the 1-hour MRI with contrast, he watched the pics with me. And again. like last year, he was unhappy.
No new AVM feeders - so I was happy yesterday. Cause thats the fundament, basic, I can plan and fight. If every year are new AVMs and new damage - dont know how to handle this.
But doesnt matter: Fact is = no new AVM.
But now, after the swelling and irritations are complete gone on the MRI pictures, he saw the damage. And it is the area between T8 and T12. The spinal cord is very very thin and compressed there. But incomplete sure.
I asked him about the brown sequard syndrom and my future, hope and fears.
And this, short, are the answers:
1) Suddenly loosing control over the "good" numb bss leg (right): Sign of exhaustion. Cause I have to control every move I do. Normal people walk subconscious. I have to manage every step. Left high, right standing and so on. And if in any case I have not the control cause of fatigue - the "feedback" between the nerves (brain - body - leg) get lost. Nirvana. And so I loose the function of standing right leg sometimes.
2) Chances for recovering for the future: So, he was the man who told me: 2 years are the most important years. (in this 2 years the first 6 month are very very important). He told me: If after the 2 years nothing happens, no little little recovering for longer period, then its a bad sign. But if after the 2 years little improvements happens: Then is much possible. So my numbness right has gone for about 4-6 cm (dont know exactly). This is a very very good sign for my future. So recovering is possible. But not all cause the spinal cord is now to thin, small, damaged.
3) Fatigue: Finaly I know why I have this damn fatigue: Cause doesnt matter what I do - many percent of my brainwork works for movements. Not subconsicious like AB. My brain tries to compensate this, and at the end I have this damn fatique and listlessness.
4) Bowel and bladder: This important functions are direct in my damaged spinal cord area. He told me, if normal therapy does not work, I need the stoma solution for better live (bladder is managed with concomurinal, thank you god for this good invention).
But if you see point 2) => I dont give up point 4). Like our good old Randy (omg, his Date of Death is 18 august, its one year he passed, cannot believe how fast time goes by) I will fight and try everything. And then, only then, I am mentally prepared for stoma.
So the good thing is: No new AVM and everything is possible !
Best for you,
PS: And thank google for the great idea of https://translate.google.com/:-))))))))))))