My name is Bea, I am 26 years old, coming from Transylvania (Romania, Europe).
I was diagnosed with AVM in last month, its size is 2,6 cm and is situated in the left frontal lobe. I have started experiencing symptoms at the end of the last year, I felt pressure in my head, pulsatile tinnitus on my left ear all these causing sleep disorders. I received medical treatment for these, but when I interrupted it, sometimes the same symptoms came back.
I was consulted by several neurosurgeons in my country, in the mean time I’m also doing researches trying to find the most efficient treatment way. According to what I heard until now about the possible treatment ways it seems that the surgery could offer a final solution, the endovascular embolization and radiosurgery both are done gradually in several fazes, producing results after years, so the probability of bleeding will constantly exist during this period, both of them having different side effects.
I would like to ask your advice based on your personal experiences and if you can recommend me neurosurgeons from foreign countries, I appreciate any help.
Thank you very much in advance
Based on the location of your AVM, a likely course of treatment would be the Gamma Knife surgery–I have had it twice to battle my AVM that bled in 2006 when I was ten. This surgery takes 3 to 4 years to work, during which time your surgeon will want to do routine MRIs. My first Gamma Knife was 2007 and the second was 2012.
Although you want to avoid head trauma during that time, my AVM bled while I was sitting at my desk doing my schoolwork!
My doctor wanted me to have embolization in 2011/2012, but when I was put under for the angiogram, they discovered that the vein hooked downwards, so the procedure was not possible. Maybe an angiogram could help you determine if this procedure would work for you?
My last MRI showed no residue of the AVM, so the Gamma Knife has been successful. Of course my short-term memory loss and fatigue problems remain, but I am not currently at risk of another bleed.
From what I understand, embolization is pretty instantaneous, if you’re lucky. Radiation does take a long time. So, if the doctors are recommending embolization, do consider it. It may well be effective.
I had an embolisation at the beginning of April. I think I still need a further embolisation, as I still have some symptoms, but I’ll tell you more about that later in the week, as I have an angiogram to look and see what’s left to do this week.
Hello Julia,
Thank you for answering, first of all I will definitely do an angiogram, I have contacted two more neurosurgeons from Hungary and Austria, they gave me the same advice as you. And I have also scheduled an appointment for a consult with them, so I will travel in the next month. They will be able to give me more information about the Gamma Knife and embolization procedures, so I hope that way I will get a clearer image about the most appropriate treatment way. I’m glad that the Gamma Knife has been successful in your case
Kind regards,
Thanks for answering, it seems very hard to choose the treatment way, however in my country everyone, including the most famous neurosurgeon suggested me the surgery (he was against any other options), he is experienced dealing with these cases day by day, doing 650-700 surgeries per year. But I cannot make a decision based on a single perspective, I’m considering every option. I still need further information about the embolization, so I decided to travel to Hungary, there is practiced since 2013 and I will also travel to Austria for a third opinion.
I hope that the embolization will be successful in your case and I’m looking forward to hearing from you.
The surgeon who saved me was trained with a surgeon named Nazergil. He was in Switzerland and performed many AVM resections before died; the man who saved me in a 14-hour craniotomy was at the University of Western Ontario.
Please contact www.uwo.ca to ask them where is best to find a good surgeon. Their hospital is where much of where cerebrovascular neurosurgery was developed.
The man who saved me was the protege of Dr. Charles Drake: a god of avm brain surgery.
