I have had two AVM brain bleeds, the first at age 10, the second at age 24. I received two treatments of Gamma radiation as a child, first was six months after the bleed and then again at age 16. Then, the AVM grew back and bled again in my twenties. When no other treatments worked, I had gamma radiation for a third time. My last Gamma Knife was in 2021, and lately I just feel awful. My brain is exhausted, and I’m not sure if it is from the bleeds, the radiation, or just general stress. I have spent the last 17 years feeling so worn out. I’m even tired in my dreams, I’m that fatigued. I try exercise, I do salsa dancing, and that helped up until I had a second bleed. Maybe it’s being back at square one that feels so exhausting, but I just want to feel like me. (whoever that is supposed to be, aside from the AVM)
Thanks for listening. 
Sorry to hear about your struggles, but know you are not alone… you are still quite young & have so much to live for in life & experience… don’t let this distract you from your purpose on this earth.
Live life, smile, laugh & do the things that make you happy… this will make you more resilient & as you grow you will realise how far you’ve actually come.
I’m assuming surgery hasn’t been considered due to the location of your AVM?
I suffered a bleed before surgery & it was very scary at 30 & has traumatised me… so I’m sure as a child that would have been extremely traumatic for you… please keep up the fight & keep us posted here… we are here for you if you need to talk… God bless!
I understand completely where you are coming from. I go through a bit of a daily thing where I feel good, as you say, like me! But I find I do tire quite easily, but not from anything physical, I can still do all I could before. For me it is a mental fatigue that builds up, and I just need some time with just me. I’m an extrovert, and always have been but never used to crave or need the complete solitude. I certainly do now. I have adjusted me to plan for these times of quiet, these of being alone but certainly not lonely. It is a requirement that I have added to everything else to be as close to “me” as I can.
I can deal with the physical fatigue, it is the mental fatigue that requires focus to re-build and re-store, daily. All of us have to find our own way to try and recharge that battery, it took me several years to have he balance I have now. As I get older I will likely continue to gravitate to the activities that allow me the solitude to recover and recharge. Take Care, John.
Same - so far, I have been “lucky”
“Just” a few brain bleeds & embolization and I’m good as new(I guess)
It’s been a tad over three years now & I still don’t feel my “normal self” - I’m ok, for the most part
I’d suggest getting it checked out - unfortunately this medical stuff does get us down pretty hard
Wish you the best!
Yes, surgery was never an option because it is too deep in my prefrontal cortex. The gamma knife treatment seems to be working, it’s just devastating to be only two years into the five year treatment journey; a journey I am taking for the third time. I try to keep myself busy living my best possible life, even if I don’t feel like myself and it’s harder to enjoy things without being exhausted. I am travelling next month which I’m really excited to do again, and I have published a couple stories. (Being an author has been my dream since childhood.)
Thanks for your response!
Hi Hermione. Sorry to hear what you’re going through but believe me nearly everyone on this forum is experiencing something similar. i had my rupture in early 2016 and I’m still struggling to be normal and get my life back to the way it was. If you ask me why you’re feeling the way you are right now, i would say it’s probably a pos traumatic depression that most head injury patients feel after bleeding in their brain. i feel depression that goes on and off from time to time but i can promise you this, the brain is a remarkable organ that is capable of healing, it will eventually get better and you’ll stop being depressed all the time. I got better after about two or three years but i had to go through a lot of therapies and psychological councelling. You said your AVM grew back, have you considered doing test to see if you have HHT ( heridatary hemmoraghic trengelactasia) it’s a genectic vascular disorder that makes a person prone of developinmg AVMs, if you have that then you should have it treated to prevent another AVM from forming. hopes this helps
Thanks for your response. I asked my doctor about HHT, but he said it was really rare and didn’t think I had it.
I agree that a lot of how I’m feeling is just sadness. I’m going through the motions that made me happy last time, but it’s not as fulfilling because I overcame the sadness before only to be hospitalized shortly after.
I lost someone close to me this week, so I think that’s making my brain stuff hurt more too.
Thanks for listening.
All of us just “try” our best - when tough things in life come up, that aren’t even related - I seem to be more emotional
Sorry about your loss too - it’s never easy
Dear Hermione,
Your story is heartbreaking, you poor thing. I found mine in my 40s, you suffered from such a young age and it has lasted for so many years. Its smazing you still have determination and dreams and this experience has
made you a strong woman. I hope the doctors can help with your fatigue and you start feeling better soon. Did the doctors tell you why the AVM grew back? Was it because they hadn’t fully removed it both times? Take care. Gill
Hi Gill,
Thanks for your response. My doctors said the AVM grew back during puberty. Basically my body wasn’t done growing when they treated me as a child. Since an AVM is part of the cardiovascular (circulatory) system, the cells regenerated… unlike the neuro cells that take such a long time to grow back. My gamma knife doctor said that I am the only third patient he has treated three times.
From, Julia
Hi Hermione. Life has been very unfair on you and you definitely deserve some great times ahead. Enjoy your travelling.x
I have HHT and had one of three of my cerebral AVMs removed. Fortunately, I have not suffered a bleed. However, 15 years before my HHT diagnosis and surgery I had to have a benign brain tumor partially removed, which was followed by gamma knife radiation three months later. I was recovering pretty well from the actual surgery. Following gammaknife, I had to go on disability for severe fatigue and horrible headaches that I never experienced before. My body temperature was never more than 97.4 and I was always freezing. Prior to this, I had worked in a hospital as a Clinical Laboratory Scientist. I tried to go back to work, but my head pain and fatigue was so bad, I just couldn’t work. When I expressed my concerns to the gamma knife doctor at USC Medical Center, he basically poo-pooed me, telling me he treats many patients with terminal brain cancer and I should be thankful to be alive.
But the end of the story is that after about 2-3 years, I woke up one morning and actually felt like myself. I tossed the covers off my body because I was no longer freezing. My husband at the time still remembers this day because he couldn’t believe I said I was too warm. I no longer felt exhausted by 11am. This was the turning point for me. Nobody told me that the radiation continues to work for a long time after treatment. Everyone is different, but hopefully your body will reach that turning point soon.
My HHT diagnosis did not come for another 15 years. I still have two AVMs in my cerebellum and parietal areas that they wanted to treat with gamma-knife, but I refused and said I would take my chances. They couldn’t guarantee the gamma-knife treatment itself wouldn’t cause deficits. That was over ten years ago. I just hope my luck holds out. I did return to my medical profession in 2009 and am still working at it full-time, but am close to retirement.
I hope my story gives you some hope.
Thank you for your response, I’m so glad to hear your story.
I took the rest of the school year off after my bleed (but followed up with home-schooling). I only went to school half-days from grades 6 to 8 because my fatigue was so bad. I work from home now, under my mom as my boss, so luckily I get many breaks to deal with my fatigue.
I’m sorry your doctor didn’t respect you. My doctor in 2006/2007 (at a children’s hospital!) told me to go skydiving a couple months after my bleed. SKYDIVING!!! Needless to say, my parents fired him.
Hi Hermione
I am in a similar situation to yourself. I am probably a bit older than you… I had two AVM Bleeds at 36 years old. I have a Thalamic AVM, discovered when I was 17. I had two bleeds, five months apart when I was 36 years old. I have had two Embolization’s and Stereotactic Radiosurgery. I also suffer from Fatigue since the Radiosurgery and have permanent Double vision, after my second Ebolization. I am now 45 years old. I had my Radiosurgery 8 years ago. I find my Fatigue is worse in the morning time. My most recent scans have shown there is still some swelling where I had Radiosurgery and my Consultants cannot tell me how long it will take for swelling to resolve. They did say it can take quite some time. They also want me to have another procedure to stop me having any more bleeds. Another Embolisation, that will involve two Surgeons. I am sceptical about having it because of my side effects and the risks involved. I joined this Forum in hope of meeting others with similar problems.
I hope your symptoms improve soon.
Claire
I had a bleed and surgery but over 30 years ago. I’m only able to say i hope you do get to feel better but it took me 5 years to get to a good level of life.
For me fatigue can still be a problem and i still have some double vision, which I find infuriating. However I also go travelling because I find it helps me relax and I enjoy it.
Best wishes
Tim
Thank you for your responses. I had no idea embolisation can cause double vision; in a way I’m glad that route didn’t work for me, even if radiation hasn’t been a great alternative. I had double vision after each bleed, but luckily it resolved itself both times, without additional surgery.