Side effects from AVM and/or Gamma Knife

I had my first embolization in Oct. 2010 and my 2nd in Nov. 2010. Since the one in November, I am cold ALL the time. My mouth has a tin taste. My speech is messed up, I often limp, my right hip and knee have a lot of pain.

Has any one else experienced this or other after effects? Can you let me know if you've dealt with any of this? How long did they last? Did you gain a lot os weight?

I go in next month (March) for spot radiation with the gamma knife at Washington Hospital Center in DC. Please let me know what to expect. My AVM is in the center of my cerebellum (posterior fascia, and is supposed to control motor function.

Any after effects from the gamma knife? Will I lose my hair where they have "spot" radiation?

Hi Pamela. I cannot respond to questions about radiation. However, I opted to have my head shaved bald for my craniotomy. My best friend took me shopping as soon I got out of the hospital. Well...everybody came out and started hugging me including sales help and other customers who had Mothers...sisters...cousins had cancer...tumors etc. Being bald was a plus in their book. There was so much love and support.

Weight gain...I was on steroids so yes. However, I lost it and you can too! Lots of different programs out there.

Weakness...try Yoga or other forms of physical therapy.

Pain...look around for a Pain Management Clinic. Believe me...these folks understand pain.

Hi Pamela,

As for the radiation yes you will probably lose your hair in the spot where your avm is located. I have had gamma doen twice and both times lost me hair about an inch or so in diameter. The 1st time I didnt know that i would lose it and cried like a baby the 2nd time I was well prepared. I also lost it with in a 2 week span of the gamma. As for the tin taste I didnt have that with either of my embolizations, so I hope that passes quickly for you. Good luck with your Gamma its a long day and a long road ahead to get results. Keep us posted :) Andrea

Thanks, Barbara,

I finally got into a PT program. Tell me how you lost the weight!

You are very brave to have gone the craniotomy route, my prayers are with you...

Pamela

Barbara H. said:

Hi Pamela. I cannot respond to questions about radiation. However, I opted to have my head shaved bald for my craniotomy. My best friend took me shopping as soon I got out of the hospital. Well...everybody came out and started hugging me including sales help and other customers who had Mothers...sisters...cousins had cancer...tumors etc. Being bald was a plus in their book. There was so much love and support.

Weight gain...I was on steroids so yes. However, I lost it and you can too! Lots of different programs out there.

Weakness...try Yoga or other forms of physical therapy.

Pain...look around for a Pain Management Clinic. Believe me...these folks understand pain.

Andrea,

My doctor told me to my face, no hair loss. I knew this was wrong from everything I had read.

Thank you for your kind thoughts, I hope you are feeling much, much, better.

Andrea Fisher said:

Hi Pamela,

As for the radiation yes you will probably lose your hair in the spot where your avm is located. I have had gamma doen twice and both times lost me hair about an inch or so in diameter. The 1st time I didnt know that i would lose it and cried like a baby the 2nd time I was well prepared. I also lost it with in a 2 week span of the gamma. As for the tin taste I didnt have that with either of my embolizations, so I hope that passes quickly for you. Good luck with your Gamma its a long day and a long road ahead to get results. Keep us posted :) Andrea

Thanks, Becca. You are in my thoughts.

Pamela

Rebecca Lamb said:

Pamela,

I had one embolization in 2009..........afterwards I didn't experience any of the symptoms you described as a result of the embo itself........I had the "tin" taste as a result of the Topamax I was on, as for weight gain.......none actually the opposite, lost weight (also partially due to Topamax and partially due to acid indegestion that made it hard for me to eat), once that all cleared up and I was off the Topamax ..........I gained all my weight back + 10lbs.........working on getting rid of it again. The cold feeling as well as numbness and tingling, all also medicine related in my case. Are you on any anti-convulsants?

As for the Gamma - I just ad my first treatment on Feb. 4th and to be honest so far......nothing to really complain about. I had headaches (but heck when have I not lol), I was tired for the first week (didn't stop me from working or cleaning or shopping), and I did have some dizzyness/lightheadedness (but nothing that lasted more than a few minutes at a time). As for hair loss.........absolutely none! My doctors did say it was possible in the area of your avm (mine is right temporal lobe), but that has not been my experience. So I say prepare yourself for the "worst" but expect the best! I did and I am very happy with the outcome thus far (now let's see how everything is a year or two from now lol).........Best wishes and prayers coming your way.

Never give in and never give up.......Becca

Hello Pamela,

I had Gamma in Sept 09' I think everyone reacts to the treatment differently so you may have side effects you may not. I lost my hair in the two spots where the radiation was given. I too wasn't expecting it and cried but then realized if this is it what am I crying about! I was so lucky to even be able to do a treatment. My AVM is located in the same location as yours motion. I have had some focal seizures and numbness on my left side as my AVM is on the right. I also experienced swelling in the brain due to the radiation which made me have convulsion seizures the doctors put me on Cortisone and have gained weight :( but I will work hard to get it off when I am done these pills all other side effects (the seizures) went away. Otherwise, I have been for a few check-ups and the doctors say the AVM is changing which is great news. About one year to a year and a half is when I had the most side effects because my doctor said the treatment is at it's peak. The day of Gamma is long so get a good night sleep. I hope this helps you! Good luck with everything!

Melissa

I had 2 embos & gamma knife one time & I didn’t lose any hair after the gamaa knife i only had 2 bald spots where the screws were placed the size of an eraser head!!

i had gamma knife two weeks ago and today about a two inch area of hair came off…so theres a big bald spot there…im not sure if im gona lose more hair or what other side affects are gona happen?

i have epilepsy now. i urinate more than a nine month pregnant woman. i have epilepsy that causes seizures. i was a heavy drinker before now i think i compensate from the carb loss with ice cream or whatever. cant drink anymore, thank god. i dont think i ever would have if i didnt have that thing in my head. mine burst in the front right lobe so i dont kno if its gona difer for you. i really dont want to worry you tho. so please dont worry. please and thank you. stay strong. i dont even kno what a gamma knife is. mine burst and i had a craniotomy. i thought that was the only way it happened until i joined this website

i cant beleive that there is hope for my seizures to go away. thank you so much

I was 12 years old when I had gamma knife radiation. I was put to sleep for it since I was so young. I have two hole scars on the corners of my forehead but they aren’t noticeable unless you know my story. I remember that the hole healed about two weeks after my gamma knife. I never lost my hair and Im pretty sure you don’t lose your hair. They just put this metal helmet into your skull Which is what leaves the scars but it isn’t that terrible. It sounds worst then it is.