Hello everyone
I am new to this group. My AVM was diagnosed in 2011. I had three embolisations and was doing very well. The doctors advised me to embolise even more, but I said no. Now I have a hemi paresis. It came on very gradually. It started in October 22 and now I can no longer move my fingers and my arm and legs are spastic. I was still able to jog in March 23, but suddenly that was no longer possible. I was embolised twice in Zurich in February and June 24. Professor Kulcsar is a very competent doctor. He was able to close 95% of the AVM. My symptoms are still there but they shouldn’t get any worse. As I come from Switzerland, I am in the AVM group in Germany. Nobody has symptoms like mine. Do any of you have similar complaints? My AVM is located in the motor centre. (Spetzler-Martin 4 Ponce class C. Multicompartmental Nidus 5.5.
unfortunately my english is not so good but i hope you understand everything.
Fabi
I have hemi paresis on my left side; i cannot move my left hand, left elbow, left knee, or left ankle. This happened after my AVM was removed. I was embolized twice prior to the removal. With physical therapy parts of my body have begun to wake up, but its been almost a year ( 45 weeks ). For your fingers there is a robotic therapy glove; i have one and i use it. No results yet after daily use for a month. Its designed to promote nueroplasticity in your brain. Your English is Good.
Thank you very much for your message, yes I have heard about these gloves and have been thinking about buying one. I have also been doing physiotherapy and occupational therapy for over a year. Unfortunately without much success. The doctors and therapists say it takes a lot of time. I know a young boy who had hemiparesis after embolisation. In my case it came on gradually and got worse and worse. Now I hope it will slowly get better. Patience is not my strong point. Thank you very much for your answer. It’s good to know that you’re not alone with this illness.
You dont have to be patient, just work hard on your therapy; my PT & OT always tell me hand and arm will be the last thing to come back. My leg has started to wake up. Over the past month i’ve regained minimal function. I still cannot walk independently. Keep your head up. You will recover. We both will. I will play Guitar again someday! Definitely try the glove. I can feel my brain tingle when i use it; right where the AVM was!!!
Hi Fabi
Good to have you here, and nice to meet you - I wish it was for better reasons. Our son shares a similar diagnosis when it comes to size and location of his now obliterated AVM. He was also treated by Prof Kulcsar, but had craniotomy too (6 embolizations from Mai 2020 to August 2021, craniotomy one day after the last embolization, all done at Unispital ZH). I will message you in German, makes it easier for both of us.
All the best, I hope you will go jogging again one day soon.
C
Hey
Danke dir für deine Antwort. Wauwwww sechs embolisationen in solch kurzer Zeit. Das ist ja eine Strapaze. Wie alt ist dein Sohn…? Wie geht es ihm heute…? Ich bin sehr zufrieden mit Dr. Kulcsar. Ich wurde im Februar und im Juni von ihm behandelt. Die OP dauerte ca. Neun stunden und nachher noch zwei Tage in der Narkose, bis sie mich wieder geweckt haben.
Ist die AVM komplett verschlossen worden bei deinem Sohn.
Liebe Grüße
Hey
Thank you for your answer. Wowwwww six embolizations in such a short time. That’s a strain. How old is your son…? How is he today…? I am very happy with Dr. Kulcsar. I was treated by him in February and June. The operation lasted about nine hours and then two days under anesthesia until they woke me up again.
Was your son’s AVM completely closed?
Best wishes