Hello again!
So, to recap, a few months ago I discovered I have a right frontal lobe AVM. My only symptoms were very strange feelings that later I discovered it was epilepsy (that now is controlled with anti-epileptic drugs). I did an angiogram and I had the appointment with the Dr but they still didn’t gathered to discuss this case in particular (I’ll have another appointment in May). Basically the outcome was: your AVM is too big (6cm), to high flux and it has a deep component (since one of the drainage veins is deep although I think most of the AVM is superficial). It formed already 2 small (>0.5cm) aneurysms, one in the basilar artery outside the AVM and another inside the AVM. He told me also that if we decide to go to surgery to remove the AVM there is high probability I wont be the same person when I wake up due to the manipulation of the brain. Ok, now I’m a bit worried… And also the guy just told me the opposite in the last visit. I understand now he has more data in this particular case but still, he was telling me the opposite… My father and boyfriend made a lot of research in the field and they believe that he said this because they are not that good, and since its a complicated situation they are like precluding themselves in case things go bad in the surgery… The idea now is to go to Germany for a second opinion since my phD adviser is from there and knows someone there.
As for me, I’m very confused… The high flux together with the presence of aneurysms tell me the risk of rupture is there. If we wait for it to rupture then the probability of things to go wrong in the surgery are much higher, but I also wont risk to remove it before since the guy is telling in my face that I’ll most probably be a different person when I wake up… I don’t know what do to… Psychologically I’m ok, I had one bad day only since this whole thing stated. I’m just confused… I feel I have a ticking bomb in my head.
I’m sorry to hear that; unfortunately with an AVM not all of us get good news and sometimes the journey can get a little bumpy; all you can do is talk to as many doctors as you can get all the information you can and make the best decision based on that information.
I’m not saying it’s going to be easy but that’s all we can do. Best of luck and keep us posted!
It is absolutely your choice but it doesn’t sound like the doc wants to do the surgery or is recommending to do it, so it does seem a good idea to get a second opinion. If at any point you decide it is going too slowly, you do have a fallback plan but why not look into a “plan a” as well as your current option demoted to “plan b”?
Oh Iris I am so sorry- I would definitely get a second opinion. I have heard so many good second opinions. Stats wise that is in your favor. Think positive and go get best second opinion with shortest time frame -
Hugs
Angela
I was in a similar situation to yours and could not find help in Hong Kong. I can highly recommend Prof. Chapot at Krupp Krankenhaus in Essen. He is 99% certain that my AVM has been closed in 3 embolizations. I am hoping that the follow up aniogram will show 100% closure. If you are planning to get a second opinion in Germany I can highly recommend Prof Chapot and his team!
Hi Iris. I’m so sorry to read about your situation. You really must feel ‘damned if you do, damned if you don’t’. Its such a tough decision to make, whether to treat or not. Personally I have chosen to take my medics advice and not to treat. My AVM is deeply embedded in my cerebellum and any treatment carries a massive risk of deficit. Surgery isn’t an option at all due to the risks involved. I decided a long time ago that if the choice is between living with the thing and possible rupture or being a different person now due to treatment deficits I would take the former. I don’t know if I would feel differently if it was high flux or if I had other symptoms that affected me daily though. One thing I know is that it has to be your decision and yours alone. Very best of luck.
I know exactly how it feels finding out that you have an AVM. I went through this last year and I was also very confused and scared. I am also from Europe, from Transylvania (Romania). I would advice you to get a second opinion, in my country the head of neurosurgery also wanted to do micro-surgical resection, but I decided to ask for a second opinion in foreign countries. I did some research, I wanted to know who is the head of this domain in Europe, and I found out that in EANS the AVM topic is represented by Andreas Grüber ( neurosurgeon from Austria). I reached out to him, but he is no longer doing surgeries, he is the head of Kepler University in Linz and he has a team who is specialized to these cases, so I asked for an appointment to one of the team members Dr. Wolfgang Thomae from Linz. http://www.der-neurochirurg.at/ and he convinced me not to choose surgery, because there is a high risk of hemorage. He suggested me the endovascular embolization. I took his advice, financially I could not afford it to choose him but I found another great neurosurgeon from Hungary and because I have also hungarian citizenship I moved to Budapest last year and I started the embolization process, which is going well, I have 2 more months before the third and last level. I hope that I could help you with this information. Greetings
Hi iris,
as others i would suggest the same second opinion and i have also gone through the same problem and condition, i would reccommend you to contact Dr B K Misra of Mumbai India (https://www.hindujahospital.com/Speciality/neurosurgery/) many doubts with fear what you are having in your mind the same was mine but after brain surgery nothing went wrong i am as good as was earlier. Even had second GKR surgery. So dont worry be bold remember your mother and father, keep them in your mind always. everything will go fine and as you wish.
if possible and u belive chant " Matru- Pitru Devo Namah" meaning i do respect and reverend my mother and father as God.
best luck
