My son suffers after gamma knife AVM left hemisphere of brain

I would like to know if anyone has had similar experience. My son had Gamma Knive September of 2009. Since then he has experienced extreme headaches and dizzyness on repeat occassions. He is usually requested to return to the hospital for an overnight stay, given a “cocktail” to releive the headache and then an MRI. He is then released until the next occurance and the cycle is repeated. It is painfull not only for my son but also for his mother and me. We do not know how to proceed. Is there hope for releif fthat he will even lessen the pain? Is there anyone that can offer guidance as to where we may go to seek more help for him?

Roy,…

You, your son and your family have my complete sympathy and empathy.

The only advice I can offer is:
Gather All of your son’s medical records/files/charts/cerebral images/MRI scans, and seek the professional opinion of another neurosurgeon, (ie) second opinion. If by chance that has been accomplished, well,…seek out another, (ie) third opinion. This is your son we are talking about. If all suggest similar treatments well,…you have your answer. If not,…go with your gut feeling and the rapport you feel with the given neurosurgeons you will be chosing from.

I feel deeply for your family and I will keep your family in my thoughts.

I send you, your son, and your family my prayers.

Stand strong Roy.

“You are,…What You do,…When it counts”

Are they sure he doesn’t have brain swelling or necrosis from the radiation? My son had Gamma, July 2008. He had brain swelling develop in late May 2009- so 10 mths later. It seems that brain swelling after Gamma is very common. Can’t they give him any reason for the severe headaches? I know how hard this is to go thru with your son. My thoughts are with you.

Roy, I am not sure if this would be the same thing, but I am having cyberknife and it was explained to me that there is a possibility that fater the treatment, some of the brain tissue could die. If that happens, there is a possibility that I could suffer bad headaches, seizures or fainting spells. If that were to occur, they may have to go in and remove that dead area so that the symptoms are allived. I would have thought that the MRI’s would show that, but I am no expert. Just some food for thought or questions for you to ask of the doctor…

I totally agree with William…go to anoher dr…and anoher… rule out anythng and everything so as not to keep masking any symptoms. I will keep you in prayer and from one who suffers horirific headaches and a mom of four…I feel fo ryou so much…Please just rule all out and keep finding a dr. who can at least explain why these occurences are happening… xoxo Mare

That email was from my husband. Our son indeed has swlling. So much that it is pushing his brain from one side to the other. His AVM site is on the right, not the left. Now there is a debate whether m son has had a bleed or not. I am taking hom to UCLA in September. Thanks

Joy said:

Are they sure he doesn’t have brain swelling or necrosis from the radiation? My son had Gamma, July 2008. He had brain swelling develop in late May 2009- so 10 mths later. It seems that brain swelling after Gamma is very common. Can’t they give him any reason for the severe headaches? I know how hard this is to go thru with your son. My thoughts are with you.

I’m looking at Gamma too, not yet treated though. I have been doing a ton of research and have had 4 opinions by top specialists in my area. I was told by one doc, brain swelling is usually over and done with by 18 months post treatment date and headache can be a delayed symptom. I’m guessing based on and depending on the dosage they prescribed your son at treatment. If I were you I would ask for all records and the dosage amount that was given and talk to another experienced doctor about what to expect. If the hospital is able to treat it and relieve the headache I’m sure they should know what is causing the headache to begin with. Sounds like swelling to me and they just don’t want to tell you. From my experience some doctors for some reason don’t tell you all the facts and I get my answer from the next opinion. Hope this helps and your sons get better sooner than later.

Hi Roy,I also had gamma three years ago,and just two month ago I started having swelling around the avm ,post edema from the gamma. no problems ,not to much except some good headaches for three years and now this,plus my avm has stayed pretty much the same size, it was 3.2cmand after 3 years is a little smaller but not by much 2.7cm .mine is taking longer then I hoped, sure will keep your son and your family in my prayers and get a second opinion ok,thats what i would do, HUGS Caroline

Hi Roy,
Sorrry that your son is not back to himself, I just joined since my son also had an AVM treated with surgery but now there are some venous malformations, found on his yearly angiograms. Was going to recommend Jefferson Hospital in Philadelphia. my son was operated on in CHOP and the pediatric nerosurgeon recommended Jefferson. i too am seeking out info for a 2nd opinion.
Diane