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AVM Survivors Network

Gamma Knife Complications?


#17

Get multiple opinions.


#18

Hi Taylor,
My AVM is in a different place but am too struggling to draw any conclusions and decide. Gamma comes with a 5% chance of permanently damaging my vision as AVM on optic nerve. Not easy. Did you make any decisions in the end?
Alex


#19

Hi Taylor,

I too have an AVM that is inoperable and GK was suggested. Regardless of the risks, GK in this situation is the obvious choice.

Now in my case my AVM was made smaller by the GK but not obliterated and unfortunately I was one of the unlucky 2/3% that end up with radiation necrosis. Now i just have to wait for it to bleed.

They dont yet know why some people get the necrosis. In my case 18 months after the GK, i felt sick and suddenly became disabled while jogging to a video rental store.

Good luck! I’d take the chance everytime when its inoperable.


#20

Hi Alex, how re you? what did you decide? My daughter got the same situation with you, difficult to make dicision. Would like to learn from your experience.


#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


#28

Thank you Corrine. I’m just seeing this and you caught me on a bad week. I’d hoped 2018 would bring me hope, unfortunately I declined at a very rapid rate. I’m losing my memory that people on the outside think I’m losing my mind. Mine was on the left front lobe. Awesome place for extensive encephalomacia!! My BP has reached record highs this year and doctors stare at me like they don’t know what to do with me.
Just the other day I was in my neurologist office for my regular appointment and I’ve been having unbearable migraines. I was being put in a dark, quiet and odorless room so I could wait there for the doctor. I come through the door and another patient takes a picture of the staff handling me and the flash was right in my face. Well, needless to say, it triggered a seizure about 10 minutes later. It didn’t help my migraine either. I wish people would use common sense when in these offices. I’m stressed out.


#29

Thank you… my doctor who did this will have nothing to do with me. As soon as I wanted a second opinion and he found out that I had an appointment with the Mayo Clinic, he took me off of his books and had me notified. He’s a very shady doctor. Hindsight!


#30

I live in Jacksonville Florida. I had a friend who went there, but she relocated there. She was (yes, was, she has passed away now.) a cancer patient though.


#31

@Taylor1 have you sent your scans to Barrow in Arizona for a remote consult? I believe it’s around $150
Dr Lawton is considered the best in the USA
Angela


#32

I’m sorry to hear about your friend and I hope you can find a place for treatment you are comfortable with.

Good Luck and may God bless your search,

ron


#33

No, I have not. I have been told that my tumor is dead so what’s the problem?? This is coming from my family and my regular neurologist. The radiologist has listed a mile long list of differential diagnoses. My spinal tap results pretty much agreed with him. I still after five years continue to have brain swelling around the"dead tumor" because that neurosurgeon fried all of the arteries surrounding the tumor when he pumped my brain full of radiation. I wish I could attach the original MRI of the swelling that shocked the ER doctors that wanted to perform open brain surgery ASAP on me after viewing the images and knowing that I was paralyzed on my right side. He would have killed me instantly had my mother not been there to speak for me. How he didn’t know that you don’t cut open someone full of radiation and expose them is insane! To think we put our lives in their hands is scary.


#34

Thank you. I try not to allow myself to give in to the pain, but I have my weak moments…


#35

Allysun,

I’m just shocked really that a patient thought that it would be ok to take a photo of you when you were clearly in a compromised situation. That is incredibly intrusive and disrespectful!

I also declined at a very rapid rate before I was finally diagnosed and then partially treated. It is so difficult having the pressure to act “normal” when you feel yourself getting worse. People looking at you like an alien is really hard to not be emotionally affected by. I see it as a defense mechanism from lack of understanding that causes people undermine or be insensitive about rare conditions.

Are you with a pain clinic? I’m so sorry that you are dealing with migraines, it is incredibly difficult to cope with. I hope your docs find a solution to get your migraines under control.

How are you now?


#36

All the seer I got gum enough last year everything went well set for I have a swelling on the left frontal lobe of my brain