Please, friends of the AVM, help me for my wife!

Dear friends,
If anyone knows a good neurologist who is willing to read my letter, please send him! Hoping for a chance for my wife.

''Dear doctor,
Allow me to introduce myself: I am Horia Dascal, in Romania,
and I dare desperate appeal to you, hoping you can help me. It is about my wife, Mihaela, 36 years old. She was diagnosed with left temporal lobe AVM, embolization and surgery in Oct. 2009 in Helsinki, by Professor Yuha Hernesniemi. During surgery there was a massive cerebral hemorrhage. Damage results were: total and permanent blindness of left eye, and an atypical mydriasis, which occurs only in the presence of artificial light.
After a very difficult recovery for 6 months, followed a period of equilibrium, with a somewhat normal life, considering the sequelae.
I'm trying to say what is wrong with my wife now : 4 weeks ago, so-called normality, which is already installed, it crashed. It installed a blurring of vision (blurred image, slightly trembling, the glows moving in the visual field, and difficult and uncertain focusing of the image, all, as well as head movement, are accompanied by nausea and constant flurry - I tried to describe, as I could, how my wife sees ), accompanied by a great dizziness, as in the period after surgery, as she would be under the influence of drugs. This condition is unchanged since now.
My wife did an MRI, a detailed eye exam, EEG, lumbar puncture, detailed examination of the inner ear. All showed no pathological changes.
I asked the opinion of a neurologist, in Bucharest. First, he said they have no experience in such cases. The neurologist and the ophthalmologist said they can only assumes that there are problems with blood microcirculation, corresponding to the optic nerve, postchiasmatica area, which, from their point of view, it is practically irreversible.
Do you think these symptoms are indeed irreversible, as was told in our country? Do you think there is no treatment to improve the situation of my wife?
I expect your opinion hopeful, because is the only thing that I can try, hoping that I could help her.
Forgive me once again, that I dared to write you, but pain and inability to help my wife determined me do that. She once went through hell and now she repeats it, worse than the first time.
With gratitude, sincerely yours
Horia Dascal (
PS: I can send to you anytime, if necessary, MRI, and exam. fundus.''

Horia, I also have seen a neuro ophthalmologiest to see what damage was done to my vision because of my brain bleed. The left side is no that bad, the right side had more damage. I was told that there is nothing that can be done to correct it for me. Our AVM friend Trish got some glasses that she said help, as her loss of vision seems similar to your wife's.

I also cannot be in the light or I will have a seizure. So I stay away from it as much as possible.

My neuro team is at Mass General Hospital who are very good, but I don't think they could do much about the damage after a brain bleed. I'm sending their information in case you want to contact them. Perhaps they can give you more information to help your wife.

I wish you the best!