Recently in October 2015 I found out I have a cerebral AVM in the left side, after having 2 X seizures the AVM is about 2.5cm deep and 3cm big…
I am a healthy 19 year old and had been seeing the specials here is HOBART Tas, who before Christmas was going to do embolization then surgery, then decided to talk to the neuros in Melboure, who then I flew over and seen I have been back and forward seeing the docs in Melboure after being told I had the decision of Stereotactic radiation or Surgurey. I first made my decision of Surgurey and then was asked to come back into see my doctor who explain how high risk my surgery will be, after more discussion he is wanting me to choose radiation, I fly tonight to get everything measure up… For radiation. I’m jut wondering other opinions on this… I always go with my gut feeling and that’s Surgurey but i have been leant towards radiation - what are you thoughts / post experiences.
Hello Abbey, when my AVM ruptured (grade III), I was 34 yrs old (last year), and even then, my doctor at UCLA said, you’re still young and have a long life ahead of you, go in, get it out, and move on with your life!!! So surgery was the path I chose and couldn’t be happier with my choice. That being said, since every case is unique, just based on how young you are, I would explore if surgery is a viable option for you. Regardless of your choice, remember that the healing process is different for everyone and try not to lose focus. Best of luck in your choice, Richard.
Mine was too small in the size of 0.6 cm. We need to forget about the surgery because it is likely not to be found by the doctor's eyes. Yours is obvious to see I guess. And surgery is the best way to get rid of it. I think it also depends on the spot, and the age. If the doctor says they can do the surgery, please consider it.
For my case, I have been through embolisation and radio surgery. These two options are safe but take time (two years with a chance of rupture).
Please consult with your doctor again. And God bless you :)
Thanks for your wise, wonderful words - last week when I consulted my doctor, he advised that radiation would be the first choice, secondly Surgurey, then doing nothing at all, he explain that of for some opposed reason I did not want radiation then he would do Surgurey, but risk being high of, vision cut, speech impediment, movement and others. Based on the fact of its location, which he thinks is better than doing nothing. his other colleagues wouldn’t offer Surgurey as an option, but in his case did offer if I didn’t want radiation.
I was much older than you and I had my surgery in 2003. I choose surgery hoping it would improve my quality of life. I would get horrible headaches. I spent a lot of time in and out of the hospital. I finally had enough. I knew there would be a very great risk because my AVM was locate inside my brain stem. The surgery paralyze my right side. We don't have enough space to list the problems the surgery has caused, You are young and strong. Make sure, if you choose surgery, you go in knowing all the risk facts. I Hope you beat this and have a long and wonderful life.
I had my AVM brain surgeries back in 1978 and 1983 at the Cleveland Clinic Foundation, Cleveland, Ohio USA and it was long before gamma ray, embolization, etc. It was 14 hrs of microscopic scappel surgery and after a hemorrhage in the Spring of 1986, I have not had any further problems. Praise God. I pray everything goes well for you. I never new anything about radiation treatments. Anything tyou go with just remember to check their experience with things like this first. CCF is world-known.
I see. Please consider the side effect as well. If the doctor is so certain that he can take it off, please go for it becuase you will be completely healed in a short of time while the other treatment ways require time.
The radiosurgery may also lead to cancer in the long run (the research didn't confirm though). Either way is better than doing nothing.
Abbey, you will be healed :) I will wait for your good news! Keep in touch and keep me updated your condition :)
I just went through the exact same thing! The Dr kept pressuring me to do the gamma knife & told me that with the gamma knife it is %80 effective, it was take 3-5 yrs for it to completely go away, & the risk of it rupturing doubles. (why would I want to deal with all that?) he told me if it ruptures I’ll most like drop dead on the spot or I could have a seizure… The risks of surgery are… Loss of smell, problems with speach, problems with memory but that the changes in me would be so minor that nobody around me would even notice so again I ask myself why wouldn’t I go for the surgery? Well, I went with my gut & chose surgery. At that point I could tell the Dr was frustrated & sure enough he denied doing the surgery so I went for a second opinion & got the same thing told to me so again I went with my gut & chose surgery… My surgery is scheduled for March 8th. I’ve been dealing with this for 4 yrs & wasn’t going to do something my heart, gut, & soul was against! You have to feel comfortable with your Dr & your decision & if you have even the slightest doubt then go get as many opinions as you need!! I wish you the best & will pray for you, doll!!
Hope you are well. It's good to hear from another Hobartian on here :) Just out of interest, who is the specialist you are going to? I have an AVM in my left palm that I am considering removing. Thanks ever so much.
Hi James! I seen Dr Thani in Hobart, he is a neuro who referred me to Melb to see dr Laidlaw who is a vascular neuro, hope that helps!
Not sure if there are different types as it is your hand, bust best of luck.