Hello I am 33 years old and found out I had a AVM on the right side of my brain and it larger than some. When I found out I couldn't even say anything to anybody, I was devastated. this is the scariest thing that ever happened to me, they gave me 3 choices, leave it alone, radiation, or embolization.
I went on the internet and did a lot of checking with all of the choices. I didn't like the radiation nor the embolization they were too risky for me because they couldn't promise me it would go all away. So I went with surgery and I was very scared. Day by day I would wonder if I would live to the day of the surgery.
I have been married for 14 years and wanted to be with my husband forever. We thought of a lot of things together on what might happen, the doctors didn't give me a real good outcome. My husband and I was very scared and wondered if I choose the right thing. I finally had the Surgery and I am back to normal nothing went bad I had a very good doctor. and I had a lot of prayers I wasn't very religious before surgery but after I came out of this very well it has restored my faith.
I am so glad I went with the Surgery they got all of my AVM and now I don't have to worry about it any more and can enjoy my life with my husband day by day. I hope this letter gives some help to someone who reads it if you want to e-mail me and ask questions please do. I will help as much as I can.
Update 7 Dec 2000
It has been 6 months now since my surgery and I get unbalanced at times of the day, still have bad headaches, and I don't sleep well. My face swelled up the other day and I felt like right after my surgery. I go to the doctor's next week to get this checked out If any of this family of AVM has the same problem please e-mail me.
Update 14 Jan 2001
Hello everyone, I hope everybody is doing ok. It has been a year since my surgery, and I have been having migraines all of the time now, and I get unbalanced a lot during the day. I don't know if anyone else is having this problem, but if you do please contact me and let me know what the doctors is doing for you. My doctor still won't let me go back to work, and I still don't know if I will get disability. I wish something would happen, it has almost been a year since my surgery. I am still on seizure medication daily. I wish my life would get better. I know that I am still alive, but not being able to work yet and no disability, my bills are hard to pay. I don't want to be broke anymore.
I want my life back without all of the problems and surgery I had last year. I'm tired of all the medications I take now, and not feeling like my head is mine. If I read for a while my head starts to get a funny feeling, and I love to read. People think that I am just faking all of this. I didn't ask to have the AVM, nor did I ask to be this way. I wish I could get some help, in treatment, and in support. My husband tries to understand, but when I get unbalanced and I almost fall, he gets scared and doesn't want me to do anything. Am I alone or is there more of you out there? Please e-mail me if you have any input. Thank you
Update 24 Jan 2002
I have been gone off of the computer for a long time. I still can't work and I still have bad headaches. I can't guarantee day by day that I will sleep during the night or that I won't wake up with a headache. I am glad I went through with the surgery don't get me wrong. I am still alive and still with my husband.
I have a granddaughter now and I wouldn't change anything for all of that. I still don't have disability. I did go to the hearing but no word yet. Things are very hard money-wise but we are getting by. I hope that if anybody has to go through any of this I wish you luck and happiness.
Update 3 Mar 2002
Hello everyone, I finally was declared disabled on Feb, 11. No word on when my benefits will start. I still get bad headaches. My husband has taken me to the hospital for my pain. I still don't sleep. I get depressed all of the time. I cry a lot lately. I still can't do a lot of housework at one time without getting a headache. Warm weather is coming pretty soon and I will be forced to stay inside. The heat makes my head swell and hurt for days. I still can't go to Tupelo which is a hour away without receiving a headache. I hope with time this will all get better.
Update: 18 Nov 2003
Hello everyone, It's been a long time that I wrote. It's been over three years now since my surgery and I still get headaches. I get them at least 3 times a week. I am trying to live with that, but I hate them all the same.
I have two grand-daughters now, and I am glad that I am alive to see them grow up. I have been busy lately, due to my Dad found out he has Cancer, and my mom has Alzheimer's. I try to live one day at a time, but with all that's going on I still have problems of my own.
I still don't sleep, but maybe four hours at a time, so I catnap a lot. I still can't do a lot of housework without getting a headache. I will live with all of my changes. Because I Survied my Surgery in the year 2000, and if I can do that I can live with what I have now.