Brain AVM 4-5 months after Gamma Knife Treatment

Hello everyone. My wife had her Gamma Knife treatment 4-5 months ago now and yesterday she woke up in the early morning to go to work and noticed her right hand was weak ans the needle feeling. She exercised her rright hand with her putty and her strength came back,somewhat. This morning her hand again went very weak where it was hard to lift a pillow. called the doctor and the on called doctor says to either go to ER or wait until nine to talk to our doctor.

Has anyone have this type of symptoms after having brain Gamma Knife treatment. Thanks in advance.

Andy

Yes. Gamma becomes more active as time goes on. Im not a doctor but it sounds like a partial seizure to me. Also could indicate swelling. Get it checked soon.

My Dr. say to wait until more symptoms occur, The last time my wife had her right arm with needles and numb they gave some meds of steroids to take for a week for swelling. It works but it made her appetite grow too.
I sure hope the side effects don’t keep showing up. It’s stressful
Thanks for the reply.

My AVM is in the left partial frontal lobe. Since gamma (9 weeks) I have had frequent focal/ partial seizures in my mouth and right hand. My advice is to document anything strange thats happening on the right side. Some side effects may seem unremarkable but they all add up. Hope she feels better soon.

I'm back again and have been away for a while now. Since then my wife had two events of tingling in her right arm. She had her Gamma Knife in Apr of this year and had events in her right arm three times now. One in June, Oct, and last night. This last time Right hand tingling and heavy right chest feeling. She is on Keppra and dilantin but the Doctor is weaning her off Dilantin for more Keppra.

I'm wondering if this is a common side effects of the Gamma knife treatment as the AVM shrinks. Anyone Please.

I am currently 5 weeks seizure free (ish:) Until then I has regular focal partial seizures as a side effect of Gamma starting day one. I am currently on 2000mg of Keppra and anticipate an increase next week after my MRI and Neurology appointment. I still occationally lose feeling in my right hand and have tingling. I feel like the meds are just holding something bigger back.

Stephanie, I know it may feel like it will get worse but everyone is different. AS my wife now, she was on 2000mg a day, then she had right side tingling and they boost her meds up to add Dilantin. 300mgs at bedtime. Then when we went to the Doctor he did not want my wife using Dilantin cuz it causing swelling in her gums. So he started weaning her off but the next day she started getting tingling in her right arm and chest. She was then given Klonapin and up the Keppra to 1500 mg at night and 1000 daytime. Well that did not work so she is now on 3000mg twice a day and 200mg Dilantin to 100mg for one more week.

I'm constantly worried what more will come. I just pray that it will be enough. I'm going on the statement the doctor said that as the GK treat deteriorates the AVM you will get side effects.
Don't think that the big one is coming. These are just side effects.
Are you working?

When I say my meds are holding something back I don't mean to imply pending doom just yet another seizure. Those of us who have seizures as side effects from gamma can often feel them coming. It's rare that I would have one without warning. They are often triggered by exhaustion or anxiety. I anticipate a med increase because my seizures are not yet controlled. I will not be adding anything else to the coctail just increasing my Keppra. I also have major swelling. In my MRI images from October my AVM was not visible due to swelling. Hopefully we will see an improvement on Wednesday.

I am not working. I can't. No drivers license do to seizures. My job requires alertness and clarity and right now neither is available. I would put myself and others in danger. Not a risk I am willing to take. I am on a leave until November 2012 and then I will reassess.

Please never say to your wife "these are just side effects". They are very real and some days unbearable and exhausting. My husband found the book "My Stroke of Insight" extremely helpful understanding what it's like to live with a brain injury.

I wish your wife well.

I just started that book myself, it was recommended by a friend. As someone living with AVM and having had Gamma Knife, with lots of not so fun side effects of brain trauma, I am finding it very insightful. A must read for anyone trying to understand and care for someone with this stressful and potentially dangerous condition.

I have to agree with Stephanie, these "side effects" can at anytime be or become a bleed or seizure, worst being stroke. The GK causes the vessel walls to swell and become even more fragile. I have to say as someone in my 6th month that anyone minimalizing my symptoms or emotions regarding any of this experience would be very hurtful. If this has not wreaked havoc on you and your wife's lives you are very lucky I would say. I can no longer do my job, the symptoms/migraines derail a good part of each day for me, and I have lost people I thought close to me who can't deal with the whole situation I never asked for.

All that said, I hope we all are AVM free and on the path to normal as soon as possible.