I had my first MRI a week ago and I got the news on monday that I have an 10 mm avm deep in the middle of the brain. I have been having headaches since the beginning of summer and tried almost every medicine but it doesn’t stop. The doctor says that these headaches are not from the avm and I don’t have to worry about it, it has been there all my life and will be there what ever I do.
My daughter was also diagnosed with avm in desember 2008 after she had an seizure but her avm is smaller then mine. The doctors say the same thing for her, nothing to worry about.
You and your daughter both, please hang in there!! And They say AVMs aren’t hereditary!!
New news again. I have a cavernous hemangioma in the pons and I have had two bleedings this year in january and may. The left side of my body is numb. I am trying to get healthy again but it is hard then half of the body is numb. Everything is diffrent the feeling of the water in the swimming pool, can’t swim unless going to the left
Margret, I'm so sorry to hear that you've had 2 bleeds this year.
What are the doctor's planning to do to help you?
My AVM was far back in my brain and I was given 1 option and that was having radiation. I did have a massive hemorrhaged after the radiation (I was informed that I had a 90% chance of having a bleed before I had the radiation), however 2 years after having the radiation, my AVM had disappeared. My AVM was on my temporal lobe.
As you know, every AVM case is different and every treatment is planned differently. But have they given you any options so you can become AVM Free?
Sorry for my late reply.
The third time was now in October, and doctors here say that there is nothing wrong with me the cavernous hemangioma in the pons region has not grown and no visible bleeding, I went to the emergency room, could hardly speak and had little sensation in my left hand and leg. At the beginning of the year there was taken MRI image and they observed spots ?? I asked about it and the doctor said the device shows too much and I do not have MS. I have all the symptoms of MS but the doctors here say it is nothing wrong with me and nothing can be done for me.
The only brain surgeon here told me to just go home and live my life.
Sorry if my english is bad, I had to use google translate... so many things have gone missing from my memory like other languages, that hurts because I was always good in english.
Margaret, have you tried getting a second opinion?
Yes and that doctor told me to go home and life my life there is nothing to worry about and this isnt serious and would not bleed or cause harm. Ive been waiting for 4 week to see my local gp and when my apointment was due they went on a strike. So now i will have to wait another 4 weeks for another apointment. Life is so funny in Iceland that it isnt funny anymore.
So sorry to hear that. I hope you can get a better neurologist and neurosurgeon. Praying for your health.
This neurosurgeon doctor is the only one here in Iceland so there is isnt anyone else.
My heart goes out to you and your daughter. I grew up with headaches and also was informed that they are not from my avm.