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AVM Survivors Network

Permanent Brain Damage?


#21

Christine_Ottens,

Thanks so much for the advice and information. I will have to continue to see how the radiation effects me over the time to come. I think I have finally find a great neurologist at university of penn. Hoping the symptoms don’t get any worse. Thank you again. and I wish your son a healthy and speedy recovery. We all know this process is a long waiting game sometimes =/
-Alyssa


#22

Hopefully you are over the worst of it now. Brain rehab can help with some damage - reforming cut connections, but as always with the brain, it’s a case-by-case basis.
Other than the swelling, minute damage may not show on a scan but it doesn’t mean it isn’t there. If you feel it or experience it then it’s real.
A period of adjustment for you and your brain is quite normal and can’t be rushed but that doesn’t mean it can’t be assisted. Just give yourself time.
I assume that you have also been advised that now that you have had radiation you will need to be checked every year or two at most for the rest of your life?
Thank you for your kind wishes in regards to my son. His situation isn’t a good one but I’m not giving up :slight_smile:


#23

Christine,

I will have to look into brain rehab, can’t hurt. I have heard of it and i’ve heard good things.
I’ve been told that I will have to be checked every year until the AVM is shut down, is that what you mean? Thank you!
I will keep your son in my thoughts


#24

There is the annual MRI to check on the AVM itself but even once it’s shut down you still need to have an annual consultation because you have had radiation.


#25

Christine,

Interesting see I didn’t know that. It makes sense, I’ve asked that question to another group before about checking the brain years after radiation for cancer. Thanks for this information!


#26

I wasn’t going to say but now that you’ve mentioned it, yes there is a risk of brain tumour in the location of your AVM as this is where the radiation was focused.

There’s a 1% of this around the 20 year post radiation mark. It won’t happen sooner and it won’t happen later from the radiation. I’m told an easy fix compared to an AVM and 20 years from now there will be much better treatments so don’t let it concern you. As long as you keep up with your checks you will be fine.

Good luck, God bless and stay positive :slight_smile:


#27

Christine,

Really? No one has told me this thus far along my journey. I will have to talk to my radiation oncologist about this. Absolutely, will always continue to get routine checks for the rest of my life! Thanks for the information I’m glad you said something.


#28

Definitely discuss it with your specialist. Some things different members of my son’s team disagree on but this was not one of them. There is a tendency not to mention low risk side effects as the list could be too long and the incidence of it so small in their opinion. The age of the patient is also relevant when discussing risks. Maybe it was mentioned to me because he was only 6 at the time he had radiation so would only be 26 when this could become an issue.


#29

Christine,

Thank you so much. Yeah you’re right I have also noticed that the doctors tend to often leave out the lower risk side effects but they are just as important to know about in my opinion. I found and recieved cyber knife radiation at 23 and its only been a year so i’m only 24 now so I have awhile haha! But I will be discussing this with my specialist for sure. Thanks so much for the information


#30

Hi;

I had Radiation Treatment in 1991 with no serious long term side effects. I’ve heard of a slight increase chance of cancer but not me, thank god. I’ve had further brain surgery(knife, Jan 16)) as my inner fossa bone above my ear drum had to be repaired. I had spinal fluid leaking out my ear. Doctor said cause may have been weakened bone due to the radiation but no way to know. All in all the radiation was worth it - I’d be dead.

My vision took about two years to come back fully after leakage. All the best, Allyssa.


#31

Steve350,

Thank for your the information! I appreciate it. Will keep this in mind


#32

Hi kosta! I live with extreme numbness on all my right side! I m one year and a half after radiation, sometimes now is better, but never went away and it change location like or is more on the upper side or more on the leg, did your numbness ever disapearead? Is this from the radiation or swelling ling or from the initial bleeding?? I m desperate and so sad sometimes…


#33

Hello RitaF

I am sorry that you still have a lot of issues but I would wait a little longer and see what happens. In my case the numbness will come and go and it wouldn’t last long a few minutes at the time. I never had a bleed and not real symptoms before the AVM was discovered. I had a lot of headaches when I was a teenager or in my 20s but had never gone to the doctor. My problems after radiation lasted about 2 years. My doctor thought that it could be due to inflammation because of the radiation or because the AVM is closing down and the blood is looking for another way to empty. In any case think positive I always tried to ignore every symptom and go on with life, you try to do the same. It seems to me since you did have a bleed you had no option but to do something and radiation is not a bad choice. Did you have numbness before radiation or before the bleed? If it is due to damage from the bleed that also needs time to be corrected and it may take time. Just stay calm and it will be fine. We can only do so much. Please feel free to chat anytime

Kosta


#34

Thank you so much for your words, I see improvements when I Think about “how was I feeling a month ago” but sometimes I look and see how long it has been the bleeding (2 years and 3 months) and start getting really desperate and anxious thinking i m going to suffer for the rest of my life. I only had gammaknife option because my avm is in thalamus totally inoperable or possibility of embolization. My neuro said what you said, when it reaches December 2018 at two years mark it will not be normal to feel the numbness and pain at this level but i still have 6 months for that mark and you saying your problems lasted for 2 years make me think that its still early and have hope and calm down :pray:


#35

And no, I had zero symptoms of numbness or anything before avm bursts


#36

what about from the time you had the rupture and the time you had the radiation.

In any case I feel that no matter what you are in the recovery stage either from the radiation or the rupture and it will be much better. Just hang in there and it will be just fine.

Kosta


#37

In those 9 months between the bleeding and the radiation I didnt had any feeling of on the right side and lots of pain and burning but never the numbness, after gammaknife the pain and burning got worst for 9 months but after it got better but it started the numbness… Thank you so much for your support and help! I will try to be more patiente…


#38

Good luck Rita.


#39

I’m going to be undergoing a GammaKnife treatment eventually for my AVM.

I hope you feel better soon.


#40

Thanks for the support! If you want to know anything about the procedure feel free to ask!