My son Anthony had an AVM rupture into a hemorragic stroke in june of 2007. Been through 2 rounds of stereotactic radiosurgery because the AVM is deep in his brain under the motor strip which makes surgical removal impossible. He is now developing seizures due to some radiation necrosis. I am scared to death, everything I read on the internet tells me radiation necrosis is almost always fatal! Is there anyone out there that can tell me differently and any treatments that have worked, we are awaiting an appointment with his neurosurgeon at this time.
Michelle,
Rule 1: NEVER trust anything you read on the internet, except for this site.
Rule 2: For this site, NEVER trust anything you read on the internet.
OK, not quite true. There's a lot of us walking around who have radiated for AVMs. We ain't dead yet.
Certainly something to be concerned about, and seek competent answers, like from your Dr team.
Hope this helps.
Ron, KS
Michelle, part of the confusion about radiation necrosis is that most of the material on the internet is about necrosis in cancer cases. I think the prognosis is significantly better for necrosis with AVM than with cancer. If you type "necrosis" in the search box at the upper right of this page, you can connect with others who have experienced this, one of whom is our founder, Ben Munoz. Some members say that hyperbaric oxygen therapy can be very helpful for necrosis; there are also medications that can be tried. I think propranolol is one of them? I wish you and your son the best!
Hi Michele. Here is the link…http://www.avmsurvivors.org/main/search/search?q=Necrosis
The search box DancerMom mentioned is located on the very top right hand corner of the page. You may wish to join the seizure sub-group on here. http://www.avmsurvivors.org/group/avm-with-seizures-epilepsy
Hey Michelle. Your son’s story is somewhat similar to my son’s story. My son is 5 and woke up a month ago, unable to move his left arm or stand. We rushed him to ER, where ct scan revealed a brain bleed and 3blood clots. We didn’t think he’d make it through the night , as they started him on blood thinners and he already had a bleed. He was in hospital for 2weeks and rehab hospital for 2 weeks. I’m writing from the hospital. He still can’t walk, but we’ll continue pt at home, so there is hope. He has had 15 brain embolizations, but no gamma knife, etc.
Hi Kim,
Yes there is always hope, it took anthony almose a month till he could walk with a walker. The doctor told us that things would get better slowly as the swelling in his brain went down and the recovery works from the closest part of the body to the brain and works its way out ex..arm before leg and foot...He waas 14 when this happened and is now 20 yrs old he still and will always walk with a limp on the left side and has very limited fine motor in his hand but he holds down a full time job at a car dealership changing oil and using his bad side to the best of his ability. Dont ever give up hope and prayers there are miracles out there, love and support and most of all time will help heal your son too. Hope he gets stronger soon.
Here a a scientific paper about necrosis after gamma knife surgery and it clearly says it will take some time to wear off ( http://www.ncbi.nlm.nih.gov/pubmed/11409517)
“The median time to development of necrosis was 4 months, and symptomatic and radiographic recovery times were 7.5 and 10.5 months, respectively. The median survival time in patients with necrosis was 30 months.”
This is median not mean.
How is your son, Michelle?
Sorry for the delayed response, I have not been on here for awhile. My son is doing ok, we are still battling with the effects of radiation necrosis. He has edema on his brain which is causin seizures and a loss of some function on his right hand. Follow up MRI tomorrow to see if the swalling in his brain from the fluid has gone down or gotten worse. Then they will decide what to do next. But he is a fighter and a very stong young man and he definitly doesnt let it get him down.
Thanks again for asking and how are you doing with your AVM battle? I hope better
Talk to you soon