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AVM Survivors Network

Gamma Knife Complications?


#21

Why does no one here speak of or pursue Proton Beam radiation? It’s not as common, as there are only 24 Proton Beam accelerators in the US, but it’s so much safer than gamma/cyber knife. My son is having Proton Beam Radiosurgery June 8 at Massachusetts General with Dr Paul Chapman and Dr Jay Loeffler.


#22

Good point. I was heard Japan have these machines. Australia doesn’t have one yet.


#23

I don’t know, either, but here is an article written by one of our moderators past, Hanne:


#24

I know I am a little late to the table but I am just seeing this as I was researching something else for my conditions AS a result of the Gamma Knife. The actual procedure itself is not the thing to worry about (if at all) it’s very simple. The days following should be ok too with the exception of a headache from the pins but I would think most of us can handle that headache no problem considering what we’ve been through. I wasn’t so lucky with the Gamma Knife. I had mine done December of 2013 on the front left lobe of my brain. I’ve had migraines since I was five years old, but this tumor was so big and wrapped in so many arteries that I was having seizures too. Four months after the I began to have seizures but they were different. I started to lose feeling on the right side of my body until I was totally paralyzed on my right side. I had terrible headaches and couldn’t sleep. I was told I had about a 30 second delay response time when asked a question or spoken to but I thought I was answering instantly. My head felt like it was on fire. I did lose my hair at the site of radiation point (which with my long hair and being in front I was devastated) I ended up in the ER Easter weekend of 14. My mom saw that I was not able to use my right side. They thought I was having a stroke and admitting to the stroke unit. My parents and husband explained my medical issues and the Gamma Knife. I had a MRI done and the brain swelling was so severe the midline of my brain had shifted over 8mm. The neurosurgeon there at the time was trying to convince my parents to allow him to perform open brain surgery to remove the tumor. I was out of it. They wouldn’t let him touch me until they talked to the doctor who ruined my life. It took 2 years for the radiation to completely go away. I have severe damage. I have an autoimmune disease of my immune system. I’ve had unbearable migraines that are unlike anything I’ve ever had before. Mini-strokes, chronic neurological inflammatory disease, demyelination, vasculitis, CARDASIL, small vessel ischemic and extensive encephalomalacia. I live with epilepsy now. I’m just at the beginning part of finding out the real impact the Gamma Knife had on me. I’m probably a rare case. But it happened nonetheless. This is side radiation nercosis and the diseases that are a direct effect from it. I’m 42 years old now. I have three boys just starting their own lives and I am missing it … consider ALL OPTIONS before shooting poison in your brain.


#25

Hey Allyson. I’m sorry to hear of your trouble. Having gone though gamma knife twice and a craniotomy once, I certainly prefer gamma knife! But to get the AVM the cranie was needed for me. I wish the doctors would tell you what your options are 5-10 years post-surgery. That would have a determine factor in the present if you ask me! My AVM bled waiting to schedule gamma knife. All this to say I hope your situation improves! Blessings!


#26

Just read your post if going to PA check out University of Pittsburg they had first Gamma Knife in US {Dr. Dade Lunsford}. He did our sons first Gamma treatment in 1986ish


#27

Allysun,

I am so sorry to hear how much of an effect your gamma knife radio-surgery has had on your brain and life. It is really admirable though that you have shared your experience to give awareness of the risks involved with GK. Definently when I thought GK was an option (it isn’t) I was always concerned about necrosis but it is difficult to find people sharing this side of the coin. It is easy to overlook this risk. For me when I was going in for embolisation, some also under-rated the risks behind it and I was part of the 3-5% risk of a stroke - it seems like a tiny risk until you are the unfortunate one to be part of that statistic! I have not suffered as many side effects from the stroke but I think it is important to allow people to be fully aware of the potential issues - however scary - when going for AVM treatment.

In the end of the day - there are no “good” options for AVM treatment, we just sort of consider our specialists opinions, the options available and pick what we feel is the best of a bad bunch if we decide to treat it. It is important however to make an educated decision.

Although those of us who have been unlucky in our treatment journeys have experienced differant side effects and varying extents of side effects - you are are definently not alone.

I wish all the best for you and really hope your situation improves or atleast becomes less difficult to manage.

Corrine