I survived!

I'm finally done for good. I had my embolization on May 13th. The AVM could only be partly embolized (volume of about 250 ml) so I was shoved into intense care. Since my AVM was right between the motoric and sensoric area, I already suffered of sensoric and motoric disfunctions. In plain English, my left side was partly paralized and numb.

Three days later I went into brain surgery; the surgery was long & complicated. During the surgery one of my major veins in the brains started cramping ("Vasospasmus") and there was the fear that I was about to get a brain stroke. So the surgeon (Prof. Hänggi and Dr. Edminam of the University of Düsseldorf) decided to resect the blood vessel entirely to save my brain from further damage. After waking up I suffered of severe epileptic seizures, though they turned out to be only focal, yet convulsive. I had as much as 30 seizures per day, which was really bloody annoying and frightening. They put me on 3000 mg of Levetiracetam and the seizures stopped. I spend about a week in intense care and was then released to the normal neurosurgery ward.

Unfortunately some moron did not read my papers correctly, so they forgot to continue giving me Keppra - triggering a long series of seizures for days, until everything "went back to normal" (what's normal anyway for my nowadays?)

Physiotherapy already started in the hospital and after about five weeks I could already walk a few dozen meters and was able to move my arm again. I went to rehab, and another three weeks later my walking (with the help of a walking frame) improved a lot - I managed to walk about one kilometer before I had to take a break.

But. Then came the fever. 40°C, for days. They made a CT image of my brain and foundvthat the remaining cavity in my brain was filled with pus. So I was taken back to the University to get emergency surgery. After waking up, the paralysis was worse than ever, it turned into a full plegic syndrom. Also, they couldn't get rid if my fever. It turned out that I had three thrombosises in my leg who were actually responsible for the fever! So they saved my life. If there were no thrombosis, the fever from the abcess in the brain would have appeared in a stage, when I certainly would've died.

Mobilization turned out to be complicated, I had severe pain in my leg due to the thrombosises. Also, it was already late August when I was transfered back to rehab. I suffered of heavy dizziness, so it took me until late September to be able to sit in a wheelchair for longerbthan a few minutes.

While attenting physio- and ergotherapy it turned out I started to develop spasticity in my arm. Also, one of the muscles in my leg (Pironeus or something) was still plegic and it's antagonist turned spastic so that my foot is always in a stretched position.

In mid-October I was finally able to walk short distances with my walking frame and was transferred home and started attending ambulant therapy. They fetch me in the Morning and bring me back after 5 hours of therapy on weekdays.

Next Tuesday will be my last day in rehab; in December I will start working again (part time), slowly working more hours every other week. At the moment I still suffer of spasticity in leg and arm, epilepsy (dormant due to lots of Keppra), a little remaining paresis in leg and arm and ataxy. I will continue going to rehab twice a week for two hours, doing physical- and ergotherapy. Also I go to psychatric counseling ecery know and then; even though I don't suffer of depression any more, it's a good idea to let a professional keep a close eye on you.

In summary, it was all a big mess. But I can live with it. Without the surgery, I might have died at some point [1]. The option for embolization only didn't work for me, the AVM was just too large and the flux of blood exceeded 1.5l/minute. Radiation therapy was no guarantee for success.
The AVM is fully removed. My migraine is gone. I can already walk 500 meters again without taking a break. My arm works somehow.

So. Will try to get regular life again, even though I'm considered to be officially handicapped - but hey, whatever! If my aunt manages her life with a walking frame, I can do that too. And maybe, at some point in the future, I might be able to walk with crutches or even hands-free.

All the very best, Alex.

1. I'd like to point out the ARUBA-study which is investigating if it's better to leave an AVM, which dudn't bleed yet, alone or if it's better to remove it. The last time I checked the results were still inconclusive, becazse there wadn't enough data available. This might change in the future, so if you have an AVM which did bit bleed yet, tell your doctor to keep a close eye on it. http://www.arubastudy.org/

P.S. Sorry for the typos. I'm typing one-handed on a tablet

but I couldn't take the thought of having a time bomb in my head when I knew it could be 100% cured by having surgery to remove it. Embolization does change the anatomy of the avm, which icreases the risk of rupture until it is completely removed so very important that a person is closely monitored in icu after embolization AND I read the avm should be removed within 24 hours of embolizing it, although I guess its a balance of not embolizing too aggressively. complicated stuff