I’m Amanda and I’m new here, nice meeting you all. I’ve been feeling that it’s very helpful reading about your experiences and to feel that I’m not alone with this (even if it feels like it most of the time). Some background info about my situation: I’m 31-year-old recently diagnosed with a small (about 1.5 cm), sparse AVM located in the anterior part of the corpus callosum, close to the fornix. In April this year, the AVM ruptured while I was temporarily living abroad, causing a left frontal intracerebral hemorrhage with bleeding into the ventricles. I was hospitalized there for about 20 days before returning to my home country Sweden.
My neurosurgical team here has now offered Gamma Knife treatment, set to take place in one month from now. They say other treatment options aren’t possible because of the AVM’s location and structure. I understand Gamma Knife is less invasive than open surgery, but I’m conflicted as I will not know if it has worked until 3 years later (it can only show through an angiography which will not be offered earlier) and there’s still risks of side effects, especially since my AVM is close to areas important for memory. I’m honestly nervous about this and not sure if I want to go through with it, as my memory and mental stamina are already affected since the bleed.
I would be grateful to hear from anyone who has gone through Gamma Knife, especially if there’s someone with a similar AVM location.
• How was your recovery, both short- and long-term?
• Did you experience any side effects afterwards, and if so, what were they?
• Any changes in memory or cognition after treatment?
• Would you make the same choice again?
Thank you so much for sharing your experiences, it means a lot to hear from people who have been through something similar.
Hi Amanda, and welcome! I hope we’re able to help you out as we have a lot of experience here. I will say that we often don’t know the “right” answer until after the fact, but have to be at peace with the decision we make and have trust in your medical team. My AVM was left temporal, on the inner side of the lobe. It showed itself in May of 2016 and I spent several days in the hospital post haemorrhage, and through all the scans I had three options, craniotomy and Gamma Knife. I assessed the risks of each, and with the input of my neurosurgeon, chose GK. Access via craniotomy was difficult, which made the choice fairly easy.
I had GK in November of 2016, on a Thursday and was back at work on the Monday. The frame was a little uncomfortable but immediate relief when removed. The day was really quite peaceful with amazing staff, I had an MRI, a CT and the procedure and was home by 1:00 pm. At about the 6 month mark I did have some minor swelling, and ice pick headaches but did not require steroids only over the counter anti inflammatories, these disappeared over time and are a distant memory.
I did not experience any change in cognition after treatment, and experienced no further side effects, other than those associated to the bleed. The memory is fine now, and post bleed experienced aphasia, but that disappeared mostly, every now and then I wonder but I am also approaching 60.
In January of 2023 I experienced a seizure, and have been on Keppra ever since. The left temporal is a common focal point for epilepsy, however it was a single seizure and unsure if related to bleed, which left some damage, GK or just a variety of other factors ongoing at the time.
I would make the same choice again, as I was fortunate to have options and did not wish to experience another bleed. I hope this helps! Take Care, John.
Hello Amanda. My AVM happened over 30 years ago (1992), and I am so happy I decided to give this option a shot. After under-going 12 hours of brain surgery to remove a blood clot that formed as a result of an AVM on my left brain that left me paralyzed on my entire right side of my body, loss my speech, short-term memory, had to relearn how to read, write, walk and talk; I have received 2 degrees post surgery (BSBA and MBA). Everyone may have a different experiences, but we all can relate to the same diagnosis. Here are my answers to your questions:
I would be grateful to hear from anyone who has gone through Gamma Knife, especially if there’s someone with a similar AVM location.
• How was your recovery, both short- and long-term? It has been quite a long time since my treatment, but I do know that technology has greatly improved since my GM in 1992. My recovery from the Gamma Knife Treatment was positive. I never experienced any recovery issues.
• Did you experience any side effects afterwards, and if so, what were they? I never experienced any side-effects either. All of my side effects came from the initial bleed in my left brain, not from the Gamma Knife Treatment.
• Any changes in memory or cognition after treatment? I did have major issues with my cognitive abilities an memory but that was from the initial surgery and not from the Gamma Knife Treatment. My initial surgery happened in 1992, but my Gamma Knife Treatment occurred in 1993.
• Would you make the same choice again? I would absolutely make the same choice. The most uncomfortable part of this treatment was me having to sit in the same spot for hours to make sure the laser is in the exact spot needed for the laser to be effective (that was the procedure back in 1992 in Dallas TX, so I am not sure what the procedure is now). There was no pain associated with the procedure and it was successful. I never had a normal EEG until after I under-went this procedure. At the time of my initial surgery, I was 7-months pregnant with my 1st child, so doctors were leery about me having any more children. After this procedure, I was able to safely give birth to 2 more children.
I wish you the best in your journey. May God grant you the peace that surpasses all understanding.
Welcome to our community. I am currently in the wait period after my third Gamma Knife surgery. I’m 28 years old.
To answer your questions…
My recovery from every Gamma Knife was positive. I can’t recall many side effects. I have had two brain bleeds and all of my symptoms and side effects were results of the bleeds, not the surgeries. I was in discomfort for a couple weeks from the angiogram and the head frame.
For me, the surgery did not prove to be a long-term solution. I had my first bleed at age 10, which led to the AVM discovery, Gamma Knife 6 months later, an additional Gamma Knife five years later, a bleed eight years after that, and a third Gamma Knife a year after the second bleed. However, my team suggests that the AVM kept growing because I was so young for my treatments. I’m hoping that having had the third treatment at age 25 proves to be my long-term fix, but I don’t know for certain at this point. Obliteration has not yet been confirmed.
My memory and cognition did not change after surgery, other than my usual symptoms being elevated for a couple weeks from the fatigue and stress.
Would I make the same choice again? I’m not sure yet. I definitely would have waited until a little later to start the Gamma Knife processes… 10 years old was clearly too young. Perhaps if I had given it a couple of years I could have had my first surgery at age 12 or 13, second surgery at age 18 or 19, and not needed a third surgery. But I’m just speculating here… I also don’t know if I would have had another bleed in my pre-teen years had I not had it treated then.
I wish you all the best! I think we can all agree that the side effects of the Gamma Knife are minimal, especially compared to the side effects of a bleed.
I had an AVM located in my left occipital lobe. After medication and gamma knife, I have vertigo of central origin. I am dizzy 24/7. Vestibular rehab helps. I can only focus for an hour each morning. I spend so much cognitive energy trying to feel balanced that I do not have enough cognitives energy. I was forced to retire. The gamma knife got rid of the AVM, but left me disabled.