HI,
My name is Sonia. I live in London. My brother has multi complex AVM (dural fistula). In December he had 10 unsuccessful embolisations followed by an open surgery the next day. Embolisation didnt work for him. He was ok for only 3 weeks and recovered quite quickly with less pain. After 3 weeks his headaches started again. All symptoms forgetfulness, loss of strength, body pains and dim eye sight, diziness. These all came back. On thursday he had a seizure and he was unconsciousness for long time. My mother phoned the doctor and he said he will come back to senses but he was not conscious. He was taken in emergency in ICU where he got a second seizure again. He was not conscious for 2 days. He now gained conscious but he forgot everything around him. He is not eating. He is not responding. Doctors said they didnt find no bleeding inside. He became epileptic. I dont know what to do??? does anyone know what i should do?? is he going to die??? anyone experienced same situation. Please respond. If i can get names of doctors i can contact. I need advice please
Hi Sonia. I know you are frightened for your brother. There is so much doctors do not understand about the human brain. It actually is an advantage. As long as as he is alive…there is hope. Please remember that it has not even been a year since all those procedures. Your brother’s brain is still healing! Please keep us posted. He is on my prayer list!
I am so sorry you are seeing your brother go thru that! The best advice I can give you right now is to not settle for what the Dr. says just because that's what he said and we are supposed to believe it. Keep researching for your brother and find the best Neurologist and Neurosurgeons there is. It is very important that you find one that specialise in AVM. A lot of neurosurgeons do not know much about AVM, yet alone treating them. I was told "inoperable" many times before I found a surgeon just in time: Dr.Robert Spetzler, from Phoenix, Arizona, USA. Maybe he can help you. His assistant was always very happy to answer questions and advice us the best he could, even before i became their patient. They are amazing.
Like Barbara said, the brain is very complex and its amazing actually how it can heal itself. Do not give up or lose hope. The state your brother is in right now is not his permanent one. Just read as much as you can, educate yourself, call doctors ,and find a specialist!! I will keep you in my thought and prayers,
Lisa
Hello Sonia
Where is your brother Dural Fistula? I had/have one behind my left ear. It showed up about 2 years ago and mine was diagnosed as complex I had tremendous pain after my embolism and could not talk. The doctors wanted to go back in after two months but I was in loads of pain so I have postponed until now because just recently I started to hear it again.
I know my surgeon Dr Marks at Stanford he is the founder and head of Neuro radiology surgery- said its like an art form on how they treat it and I think its rare to get it in one treatment. If you bother is having epileptic seizures its so important for him to have a him protein diet. Ketosis helps us not have seizures. Before my DAVF I had a massive stroke and was in a coma. All I can tell you is that I could hear what was going on and so please do not have the news on. Talk to him and tell him what is going on with him. Its like being in a dream state when the phone is ringing and then you dream about a phone ringing. Tell him to fight. High Protein and good fats like coconut and olive oil once he can eat. Short term memory loss is normal well it was for me when I was in a coma. but my family was very patient and explained things over and over each day and it took about two to three weeks for me to start retaining anything Sleep was all I wanted then ice cream.
I am so sorry for your brother you and your family. Is he still in the hospital?
Angela