After affects of gamma knife- is this normal?

I had my first gamma knife on thursday (i have to have another in 8 weeks) and I felt ok after it, just the expected mild headache and sore pin sites etc. Since i got out of hospital though I seem to be going downhill mentally and im really struggling to sleep as my brain doesn’t seem to be able to shutdown and when I do manage to fall asleep I am having bad nightmares. Today (day 3 post treatment) I have had a terrible day with very strange mood swings, lots of crying and anger which is really frightening me. I Feel on edge and anxious all the time and feel very strange (dizzy and shakey), im hoping this is a normal reaction but im not sure?
I would appreciate anyone’s advice

thanks
caroline

HI Caroline,
After my GK knife surgery I had crazy nightmares for weeks. I thought my teeth were falling out into tiny pieces of sand… I was having strange halunations when sleeping or awake. I was crying all the time & my mood was all over the place! And Yes anger was one of them!

I was scared too… but then I kept reminding myself that I was just shot full of radiation & my brain was messed with! Lol. I was fine after a few weeks. Each day I got better & it was different.

You’ll be better soon too! Take comfort knowing your symptoms are normal… at least they were the same for me!

Just take it easy & rest… I could barely sleep, my head hurt so much & my brain wouldn’t shut off! And my pillow felt like shards of glass for days when I laid on it.

Your journey will be better one day at a time!!

Caroline,
mood swings are very common with any brain injury and that’s what an AVM is. Cognitive therapy is recommended l, it is physical therapy for the brain and it is the step in recovery that most people don’t do. If I wasn’t forced to go by my wife I have no idea where I would be today. after a brain injury most people think that it’s just physical recovery is needed but mental help is needed too. The thought process needs to be fixed too. I highly suggest that you ask the neuro doctor where or who you should see. I saw a neuropsycologest for a year and it helped me tremendously. Good luck

Sometimes my pillow still to this day feels like a ball of razor wire and I am 11 and 9 years post gamma knife.

Caroline,

I had all of the same issues after my procedure. It has been almost 5 years and after finding a Neuro Physchiatrist who helped me to understand what was going on in my mind and body. Treatment of the brain to save our lives is stil a brain injury and because of that it needs to be respected and treated as such. I am feeling so uch better now that Ihave my doc.

Lori

Same hear! Although getting better, I also have mood swings. Quick to get upset (anyone) and cry easily. My surgery was 9 months ago. I’m slowly getting better. Hang in there.

Hi,
I went through gamma knife radiation in January 2013 to treat an AVM in the pons area of my brain. What followed was perhaps the most significant time of my life. While I was thankful that I was being treated, I was scared of what the outcome would be- would I be the same person that I was before? Well, 2 years later, yes and no. While I feel less anxious than I can ever remember being in my life, I feel as though I have "lost" something. Sometimes I just feel "weird". Just what "weird" means, is hard to put into words. My family will ask me, but I just don't know how to explain it other than I feel "different" than what I did pre-gamma knife. I continue to take each day at a time but can't help wonder what it is that changed within me. Is the change in blood flow responsible? Is the fact that my brain was jolted with radiation responsible? Are the steroids that I took following the procedure responsible? I have no idea. I definitely have my moments where I am scared, frustrated, etc. I am thankful beyond words to be alive every day, but I still wonder what the ultimate outcome of this whole treatment will be. The brain is such a complicated organ, and no two peoples' experiences with gamma knife are comparable.

Hi Caroline,

I'm so glad you posted about this. I had my Gamma knife treatments in October and December last year. The same happened to me, i felt a big shift in mood swings and snapped at the drop of a hat. I still have this now but not so bad. I believe like the others that this is totally normal. We don't realize it, maybe because it is not an invasive surgery, that our body goes through a lot with the treatment. It takes a big toll on us physically and mentally. The nightmares are normal too (horrible! Bit normal. You are fine, its just another unfortunate thing that we have to go through. But i promise you that it gets better and what helps me is to think about the long term. In 2 years its most likely that it will all be over! No more treatments, no more angios, no more MRI's. The treatment overall is a positive thing. Its just a bit shitty that we have to deal with all this stuff in the meantime.

I hope this helps a little.

Once again you are fine.

Hey there, I would say stay positive and just take everything as it comes but you have herd it plenty before. So Ill say something more comforting instead of telling you what you know you have to do. I have not had Gamma knife or any treatment yet BUT I have and do feel everything you described. In 4 months I have almost lost my wife to be, kids and everyone else that meant something to me. As I type this Im ignoring texts from a mate who has been my best friend since school and i have no intentions to reply to him(for a lil while). Told my parents i dont want to see or hear them for a long time. Ive cried more in the last couple months then i have my whole life. Told my fiancé I have a monster inside of me which has swallowed every positive feeling inside and is screaming to come out of me. I could literally kill someone for not listening to me correctly. Haha will laugh about it now but its been hell for sure yet Im still here and striving to get better and know i will. I joined this site last night because I finally realised I need people just like you in my life. People to relate with because in my head, no one I know has a slightest clue how I’m feeling. In saying that im taking everything back to basics in life. I dont want to go out like that so im making changes for sure. Wont happen overnight but its gonna happen.I might finish it there for another time. Take care and speak again soon :slight_smile:

Hi DillingersDead. On reading your post I just had to write back. You are so brave!!! I too have an unruptured and untreated AVM, It doesn't cause me too many issues in my everyday life and for that reason I was hoping I could leave it be and live the remainder of my life without treating it. But I don't know if that is the right decision or maybe if I'm just a bit deluded. Sometimes I don't know what to do for the best. On the outside I'm perfectly fit and healthy. But inside I'm a bit of a mess. Anyway, I know exactly what you mean when you say you need to connect with others with this condition. I feel like that also. My family and close friends try to be very understanding about my medical problems. But I don't for one second think they truly understand. The best thing about this site is that we are all here to support one another and I truly believe we make things better for ourselves by doing so. Best of luck to you.

Hi Dillinger -

So glad that you found this site. People here will offer support and may be better able to understand what you're going through. Although every AVM is different, they are all traumatic because they completely derail the "normal" rhythms of a life.

If you can find a neuropsychologist, they will probably be able to help you process and deal with the chaos you're feeling. The things you write about feeling as if you have a monster inside you that's consumed every positive emotion sound so very familiar to me. I'm lucky enough to have a spouse who's very understanding and a heavy bag in the basement to work on when things feel like they're getting out of hand.

Stay strong and please keep us updated on how you're doing!

Caroline,

I have not had gk yet, I go in in a few weeks for it, but even without gk, just the emotional trauma of having to go through dealing with an AVM might produce mood swings, insomnia and anger and crying. Load on top of that a physical procedure that is traumatic to the brain, and you're looking at the potential for a lot of symptoms that people might not expect from a "non-invasive" procedure. Our emotions and our mind are not physical things, but they arise from the brain, which is a physical thing, and which has just been mucked about with in your case.

I'm hoping that hearing from other people who have had gamma knife and have had symptoms they were not expecting is helping you to realize you're not alone in this.

You might want to contact your doctor, let him or her know what you're experiencing, and ask for a referral to a neuropsych, who specializes in emotional challenges that result from brain surgery and AVMs.

From what I'm reading here, you're in good company.

Thanks everyone who replied to my post, I am having such a horrid time mentally since the gk and I really needed reassurance last night that my behaviour for some was normal, you all really helped me, so thank you. I have had a slightly better day today and now learnt that my brain just cannot cope with too much at once so im avoiding my children/friends/work etc for a while and keeping myself very calm and this seems to helping me a lot. I have even managed some sleep today! !

Hi dillingers dead, thanx so much for your reply yesterday, I really wanted to reply directly to you because what you wrote really touched me. I am glad you have found this site and decided to get support from everyone here, I have got lots of support myself but also try to give it too if I can. As much as my family try to support me im afraid they don’t understand and they never will but we have to be strong and not push people away. I went through a stage where I did this but I came through it and now appreciate all support that friends and family give no matter how small or insignificant It may seem to them. loneliness and frustration in coming to terms with having an avm was a huge problem for me but slowly I am feeling more positive (except for yesterday, gosh that was a horrible day) it felt like an eternity for me before I finally got a treatment plan and the road I am taking is still very long but taking one day at a time is sometimes the only way to cope. I wish you well and hope you rid yourself of that monster soon, :slight_smile:

Hi Caroline
I had my radiation a few weeks back January 27th. So far the only indication for me that I had a treatment is the hair loss on the side of my head which started a week or so after the treatment. I could not sleep for a couple nights but I was warned about it by the Doctor and that was due to the medication that I was taking. Good luck to all of us. Just hang in there and feel better soon.

Hey lady, long time no speak !
We’ve both had treatment and both struggling ! Thinking of you and sending a big hug xx this too shall pass eh lovely ? xx

Thankyou for this xx