Last week I spent two days at the Mayo Clinic in Jacksonville, FL. I was blown away by the level of care they provided. Every Dr. I spoke to treated me like this was the most important thing they had on their schedule and talked to me and my family for as long as we needed them. I had appointments at other hospitals but none compared to the ease I felt at the Mayo clinic. That aside, I am still considering scheduling my radiosurgery. I have an unruptured cerebral avm located very close to my brain stem. The Drs have put me at about an 80% risk of rupture, eliminating the choice to monitor it, and I was given a 15-20% chance of permanent side effects with (in my opinion a very risky) craniotomy. So that left radiosurgery.
I spoke to the radiologist at the Mayo Clinic and she went over all the risks of radiation, which in my case were brain swelling, numbness-paralyses of the left side of my body, headaches, nausea. My risk of these side effects was about 5-7%. Along with the risk of hydrocephalus and the growth of tumors later on in life (less than 1% risk). The radiologist said I would be able to do the plastic face mask for the procedure instead of the metal band, so that was a plus. This is obviously a super scary decision. But I feel like if I’m going to do it, there no time like the present. My husband and I were planning on starting a family later this year. Now with this new finding, that has all been put on hold.
I’d very much appreciate any advice, stories from experience, or just words of encouragement!
Hi Abbey I am not very active on the site but when I read your message, it felt that you are going through something I went through 3 years ago.
I found about the avm in my brain in jan'13 incidentally and was told that I can either monitor it or get it treated by radiation since it is pretty deep in the brain and risks were high in case of a surgery. After a lot of thought and discussions I did go through with the Gamma-knife procedure in April'13.I was also told about the side-effects involved with Gamma-knife, the chances of those happening. Even though in my case the chances were low, I was hospitalized in Dec'13 for swelling in the brain, weakness in my right-side and was on medication for a few months. But fortunately there were no permanent side-effects. Since I have had the procedure, the avm has shrunk and only about 5% of it is left, which I hope would go away this year and then I can move on.
I know it is scary, but you are making the right decision. :)
Thank you so much for sharing your story. I’m so glad your avm doesn’t have far to go. I have read quite a few stories about brain swelling. It’s comforting to know your side effects weren’t permanent. Thanks again for sharing and for your support
I have an AVM in my Cerebellum. I had never heard of an AVM and didn't know I had an AVM until 11/13/14, when it ruptured and I was in a coma. On that day my life as I knew it, forever changed. I spent almost a month in Yale Hospital, and another 3 weeks in a Rehabilitation facility to learn to walk again; Speech Therapy; and Occupational Therapy. I did not need surgery to stop my bleed because my bleed sealed itself and my body absorbed the blood that was in my brain. I was LUCKY, to say the least. When the swelling in my brain went down and the brain healed, I had Gamma Knife Radiosurgery on April, 29, 2015. Due to the location of my AVM, surgery and embolization were not an option for me because my AVM is too close to my neck muscles. I came through the procedure without any bad side affects. I had some pain in the forehead where the frame was screwed in and in the neck nape area. I had moderate headaches for about 3 days after the procedure. The headaches were treated with Tylenol. And, I had a numb scalp for a few days and I slept a lot for the next week or so. Now the waiting begins to see how much of the AVM has been eradicated. For the next 2-1/2 years, testing will be done to determine how much, if any of the AVM remains. I am very hopeful that I will get positive results. In the mean time, I pray a lot; get plenty of rest; refuse to stress out over other people's problems; exercise moderately; and pray some more. The Gamma Knife procedure was best for me. The doctors say that I have a 94% to 96% chance of not having another bleed. I was happy that a solution was available for me. Talk to your doctors, your parents and God and you will then be able to determine your course of treatment. Remember, no 2 AVM's are alike. We all tolerate and heal in different ways. I wish you the absolute best in whatever procedure you decide on. Keep me posted on your progress.
I had a right frontal AVM and it was found incidentally, after a fair bit of thought we decided to go with embolisation and follow up with Gamma knife. Scary time but with friends and family around you'll have a good support network. Side effects weren't too bad (although my hair did fall out after embolisation).
Listen to what the Dr's say and go with what you feel is right.
A lot of us on this site are very lucky to still be here. I consider myself very,very lucky.
To cut a long story short 3 years after my treatment the AVM has been obliterated.
Good luck and hope all goes well
Alex :-)
Hi Abbey. I go to the Mayo in Jacksonville too. Who is your neurosurgeon and radiologist? Mine are Dr Tawk and Dr Peterson. Super nice and very knowledgeable. I just had another round of radiation. Been dealing with this since discovery in 2012 after a seizure at work. They missed a part when they did the initial treatments because it was a staged treatment because of the size, 5.6 cm. It shrank considerably. The part they missed had grown 2 new feeders, so we opted for another radiation treatment and followed with another embolization ( which I had two of also back in 2012 ).
