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AVM Survivors Network

Permanent Brain Damage?


#1

Has anyone ever heard of permanent brain damage from radiation treatment to healthy brain tissue? I know its probably rare but I’m just concerned because its been 9 months since my treatment and I still have signification brain swelling and some vision loss. Thanks

Alyssa


#2

Hi Alyssa, I didn’t have radiosurgery. I had a crainiotomy to remove the sucker from my brain. I do know however that the amount of radiation used has an affect on the surrounding tissue. I also know you will find much information that may help you understand online. Google, bing, etc., and this site, were not around when I had my AVM. I was on my own.

My AVM was discovered when I was 32 after a head-on collision completely tore my face open when it smashed into my steering wheel. Lots of head and brain trauma too. The AVM was asymptomatic. So I was just lucky they found it.

Judging by your photo you’re very young. That is a huge benefit to the healing process. Huge!

I had my crainiotomy at 33. I was a Triathlete, marathoner, rock climber, mountain biker, outdoors dude. This was in 1993. In excellent physical condition, it took me nearly two years to completely recover. And I was able to get back to 97% of my former life.

What I’ve told quite a few of people here is what got me through the very long healing process: get in your mind that there is NO other option but getting better. Of course I’m stubborn, which helps. But focus on whatever therapies are available, and watch your diet (an important part of recovery, but too often ignored). You don’t need to eat grass, raw oats, seaweed, and rub mashed yeast all over. Just eat healthy. Also easy to find online.

It’s all to easy to become depressed, frustrated, complacent, and want to just give up. Don’t. Positive reinforcement from your family, boyfriend, girlfriends, is nice to have too. You’ll get there. There is absolutely no other option!

Hope this helps.

Bill


#3

Alyssa, all the research I did and the talks with the Dr. in respect to potential side effects due to the radiation indicated there is some risk. The risk is directly related to a number of factors, size, location being two. They were able to give mine a “generous” dose due to it being in the void left by the bleed. The larger the target area the greater the chance of some necrosis to surrounding tissue. I was also told swelling is not uncommon. I know you’ve been battling the swelling and vision for quite a while now, I haven’t looked into that aspect. You have such a great attitude, you’re a positive influence on me and I’m sure many folks on here. Stay strong!


#4

Alyssa,
how many doctors have you talked to? If your insurance allows it, you should try to bring more input(people) into the situation.Doctors can be very ambiguous at times :weary:, and almost never admit they made a mistake.
As Bill mentioned, the challenge with radiation is that it affects normal brain tissue, not just your AVM. My personal issue with the doctor who recommended my treatment is he sold me on the good and never went in-depth with the bad. Now almost a year later I’m still battling to overcome the bad. The second opinion that I got (after the bad popped up) questioned the original treatment recommendation. Good luck :triumph:


#5

Hey, yeah it can. The trade off is that you are trying to prevent a stroke, which would be much worse. Some of the risk factors for more side effects are involvement with the thalamus & basal ganglia, and an AVM with a diffuse vs. defined edge (more normal brain gets nuked). Got to be brave, and remember healing happens, albeit sometimes slowly. The brain can adapt when there’s an insult.


#6

Rob, I have gotten a second opinion from another hospital within this year so I’ve been to two hospitals with two sets of doctors looking at this. I feel like I have the same problem you did, my original doctor never really explained all the bad things that could happened until after they happened. And the doctors from the other hospital pretty much told me everything up front additional things that could go wrong (like my vision might not come back) while the other doctor keeps saying “oh it will come back”. Two very different personalities. Thank you!


#7

DB20, Thats true, thank you! Trying my best


#8

JD12, Ah I see. My area of treatment was pretty large, my AVM is about 4 cm so the necrosis sucks right now. Hope it goes down at least a little bit soon.Thank you!


#9

Bill14, Thank you for sharing and the information! We have all been through so much, trying my best to stay strong.


#10

I hear you Alyssa,
I guess we would all be better off with time machines. I strongly dislike the blind optimism of people who haven’t experienced your struggle( cold professional detachment drives me crazy with therapists and doctors). This is an extremely difficult journey.
Patience is not a easy thing when you’re confronted with challenges like these. Do your best to keep pushing and good luck!


#11

Rob1990, I agree. We all face different symptoms and reactions to the entire process. It can seriously be frustrating, patience is hard to keep. Thanks for the words of encouragement I appreciate it!
Alyssa


#12

I think that radiation now a days is so exact that I do not believe it is possible. I had a lot of numbness on my left side of my face and arm for a year and a half after the radiation and the doctor thought it might have been due to inflamation from the radiation


#13

I didn’t have Cyberknife, I had GammaKnife for a 6cm AVM in my Left Temporal lobe in 2014. Three months later I was in the hospital with “stroke-like” symptoms. I had brain swelling, so I was put on IV steriods for 3 days then released home with a cane a a script for physical therapy and more steriods. After 6 weeks of steriod and physical therapy, I was twice my size, but could at least write my name and walk slowly. My Nuerosurgeon had another MRI done and it showed 1cm in diameter around the AVM of necrosis. I was told I may not get all functiona back, but the AVM was shrinking. I can now walk, talk with little speech problems, I can write just fine, but no longer have sensory on my right side and it is very weak and I fall a lot. My vision on my right eye is a bit blurry. I am tired all the time and have some memory loss. I have not seen anyone else with this much damage after GammaKnife yet and hope I am not alone.


Gamma Knife Brain Damage
#14

Malushka868,
Your story sounds very similar to mine. I was admitted to the ICU for stroke like symptoms also about 6 months after cyberknife and thats when they found the brain swelling. I was also told I may not get all my vision back and that my AVM was starting to shut down. All the doctors keep saying they dont see people that often with the radiation necrosis this long after radiation (i’m 9 months post cyberknife now). and I am still having trouble with the swelling, still on the steroids. I get an MRI on March 7th to see if it has gone down at all.


#15

Kosta,

I unfortunately still have swelling from radiation 9 months later. Could be that causing it too, they don’t seem to be to sure


#16

last July, a year and a half after radiation I had stroke like episode for a few minutes only effecting my speech and freaking out my co-workers. When I told the radiologist she said it was probably due to inflammation in that area since they found no leakage with CT and MRI. After that episode 2 months later I had a few minutes of numbness of my tongue and lost of feeling on my left hand. That was the last time that had any issues. The 1st year and a half I had hundreds if not thousands stroke like symptoms (numbness of different parts of my left side such as cheek, tongue, arm, hand, fingers a few times as bad as chest, shoulder blade, and leg) which I ignored and moved on with my life trying not to alert the co-workers or the people around me.


#17

I hope your results are encouraging.


#18

Kosta,

Interesting, sounds just like the episode I had. Guess its just something we have to live with. My neurologist thinks it might be minor seizure activity from the swelling but thats all i’ve heard about it. I’ve just learned to read the signs.


#19

Thank you malushka868!


#20

My son’s Neurologist told me that although the ray is directly targeted to the AVM it has to get through healthy brain tissue to get there. The ray is sent in from all directions all aiming at the AVM area to reduce the risk of damage to the healthy tissue but you have to understand that the radiation you are being given is high dose - higher than would be used on a brain tumour, so some damage is quite possible. Naturally the tissue directly surrounding the AVM is most at risk. What the effects of this will be varies depending on the size of the AVM and the location as the surrounding tissue has different functions in different parts of the brain. Damage appearing months and even years after radiation is possible. Most particularly within the first couple of years. But…once you’ve had radiation it cannot be switched off and will continue having some effect on you for the rest of your life.
Radiation doesn’t come without risks and although they might not be able to give a full or accurate prediction of those risks they should at least have given you some idea.
The risks have to be weighed against the risk of rupture and the possible consequences of that but you should still have been advised as it was your decision to make.
Going forward get yourself a REALLY GOOD Neurologist as he/she will be your best avenue for consulting regarding any current and future symptoms.
Good luck :slight_smile: