Hello everyone! I just found out last week I will be haveing surgery on my AVM to remove it. I guess you can say it has really started settling in me that I am going to have a craineotmy! I have to admit I was very very shocked to hear this. I really thought the Dr. was going to say lets keep a eye on it and see what happens. After all it is really not that big, approx the size of a dime and it is right on the top of my brain! I was just wondering if anyone who has had the surgery could let me know how they delt with it and what is was like for them. I have to admitt I am very nervous and very scared!
Thank you everyone!
I don’t doubt you are scared and nervous! I had my craineotmy on Jan. 21st of this year. I found out just 2 weeks before it that it was going to happen. Well I knew from the time of the discovery of my AVM in Nov of last year that surgery was going to happen. I was so scared, but knowing what could happen if I didn’t have the surgery scared me even more. I had absolute confidence in my doctors and their abilities so that helped a lot. I kept myself as busy as I could spending every moment I could with my friends and family making sure they knew how much I loved them. I also read everything I could about the procedure and even watched a few utube videos of an actual surgery. Oh and I called my surgeon about a million times with questions and concerns I had and he was very helpful.
As for my surgery it went great! I have had 2 angios after that have shown that the AVM is gone. I am having a pinching pain, but my nuero dude told me it was because of healing.
I wish you all the best in surgery and recovery! Stay strong and be informed. Ask all the questions you want and google your doctor to find out everything about him.
Hello, my son Andrew had an AVM around his spinal cord in his neck and it was successfully removed in December, in NYC Columbia Prespyterian. It sounds encouraging that the Dr’s feel they can operate and want to go get it. A friend of mine’s wife had a similar surgery to yours last year and she is doing well. She had 2 removed. June 16th is a good day, it is my oldest daughter’s birthday, so we will be thinking of you, and your successful surgery. Always “THINK” positive, only the very best doctors deal with these cases. Wishing you the very best!! God Bless!
Hi Jessica…I had my surgery on November 9, 2009 and have just returned to work full time. My avm was in my cerebellum, so in the back of my head. The surgery was not exactly the nicest way to spend a day, but hey - I’m here writing about it instead of recuperating from a bleed, so I guess complaining would be kind of ungrateful. They fixed me - and I can get on with my life - and that is amazing, and wonderful, and I am filled with joy as a result. The day of the surgery was pretty scary, they gave me an MRI before I went in. When I woke up I was vomiting for a few days and I wasn’t able to walk for 2 days, but after that I got quite a bit better each day. After about one month, I could go out with my husband for short periods of time, and I was having physiotherapy twice a week to help me get my coordination and balance back. I am lucky to have a job that allowed me to take 4 months off and not feel as though I ‘had to get back quickly’ - and that made a HUGE difference. Being able to really rest and take each day as it came was important. It is a really big deal…of course you are nervous and scared. For me, I just focussed on the fact that my illness could be ‘fixed’…so many cannot be fixed. That, to me, was the greatest gift. Focus on that positive side of things, and you’ll get through the scary parts. Let people love you and take care of you. Keep us all posted and be well - /pat