I finally decided on February 14th to go ahead and have Gamma Knife Radiation for my cerebellum AVM. As many have stated the worst part was the head frame. It was painful getting it fitted but after the topical Lidocaine kicked it not so painful just uncomfortable. Also, felt weird lying on the table with the headframe on. I was relieved after it was over because this decision was hanging over my head (ha,ha) for over a year. Lately I’ve been dragging my feet feeling tired all the time and I did have some dizziness the week prior to and Easter Sunday weekend. I was concerned as this was how I felt when I had my brain bleed back in late July 2022. I know it seems like a long time ago, but I didn’t actually know the cause of my brain bleed until Feb 2023. I know fatigue can happen after the radiation but it’s typing in the first week. I’ve been under a lot of mental stress. I’m being let go from my job of 22 years, I’m trying to sell property out of state and it’s been a nightmare that has been dragging on. We also recently lost a family member. So maybe my fatigue is just the stress. I also was told my right ear not only has hearing loss but the sound is distorted. Which I guess falls under a separate topic!
Sounds like a lot going on all at once! I had gamma knife and really had no issues until some swelling around the 6 month mark which I was able to manage quite well. It would be really hard to say what might be cause but it could easily be an accumulation as you suggest. If you are thinking maybe another bleed, I would recommend getting checked out by a Dr.
I find that i seem more fatigued as time passes since my bleed, but I think for me it is an accumulation of busy life, a lot of work related stressors, family things. I always describe it as fatigue vs. tired which I have separated for me at least, everyone understands being tired. I didn’t understand what I view as fatigue, until recovering from my bleed. I certainly need more rest than I once did, and again I see it as an accumulation and maybe not paying s much attention to myself as I should. Take Care, John
Hey I can 100% relate to this. Brain AVM, gamma knife a couple years ago and still feeling an almost constant state of fatigue. I have also had some big life changes, new job and working full time, loss of family etc. I don’t really know if telling you this will help but maybe just knowing that you’re not alone will. It’s a struggle but we get to keep going which is amazing. We got this
Yikes, Amy I’m sorry to hear this. I just put in a call to my neurosurgeon’s office. I appreciate your letting me know. I hope it’s something we can both beat.
Hello! My AVM is also in the cerebellum and I had cyberknife treatment in December 2023.
I also get tired more easily, mostly I have noticed that I need an hour of sleep into the day and it gets better.
I also left my job of ten years but who cares at this point, I work from home less hours.
Do you have any headaches? I wanted to ask a member with a cerebellum AVM,cause mine seem to start from the back when I get tired,through my neck and then head (if it makes any sense)
Yes, I do get similar headaches. They start at the back right side of my head near my neck. Travel into the neck and my sinuses. I take a low dose migraine med called Ubelvy. I also get dizziness and motion sickness.
I;ve been working from home since Covid from home. Two more weeks to go. Have to make trips to the office 1-2 times a week (time there is flexible). It seems like the hot weather makes me sleepy and my arthritis is worse in the heat. I live in Florida. The bright sun triggers my migraines or when I do have migraines the light bothers me more. Sanative to sound and fragrances. I have to stay away from chocolate. I get a delayed reaction where is triggers migraines and makes me feel sick the next day. I avoid processed sugar and sweets too. Have to have caffeine lately, otherwise I can’t function.
I live in Greece so I get it with the weather and the sleepiness!I have a few friends in Siesta Key -Florida.
I have dizziness my whole life but I thought it was from my anemia.
Did the doctor allowed you caffeine?
I totally get it. My last bleed was in 2020, and I had my third Gamma Knife in 2021. I feel fatigued most of the time, even in my dreams. But a lot of it is depression too.
I first had the Gamma Knife in 2007 then again in 2012. In 2020 I talked to my doctor about the intense fatigue I was still experiencing. She didn’t suggest getting my brain checked(!). Then I had another bleed six months later-- the AVM had grown back. So just monitor your symptoms because fatigue years later may indicate it’s still there.
If your tests are coming back good and the AVM is gone, try dancing to overcome fatigue. I did salsa dancing; the exercise really helped my body, and now my doctors are saying that dance is one of the best things for your brain. All the best!
In the US, traditional doctors don’t seem to think diet is an issue. I know it can trigger nerves to act up and headache. I watch a lot of health videos so I know caffeine can be good or bad I really try to eat a good diet but a lot of what you think is good really isn’t. It depends on the person with caffeine. Most times I can only tolerate 1/2 cup of coffee. Today I tried waiting to have my coffee until well after breakfast. Less spike it seems.
I just heard back from my neurosurgeon. My symptom don’t sound like it has anything to do with the radiation treatment. I was told I’d be getting bad headaches. They said they could do a simple CT scan. I said to put me on the schedule and I can always cancel if I feel better.
I live in North Central Florida. I lived in Miami for 13 years so I’m familiar with the keys.
Nice chatting with you Bettybo.
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Hope this helps.
On the subject of coffee / caffeine, patients who have an unoperated AVM are often advised to avoid things that can spike the blood pressure. Coffee or caffeine would be in that list, along with things like alcohol, chocolate, smoking or anything involving lifting heavy weights or straining. That sort of thing.
I cut out coffee, chocolate and alcohol when I was pre treatment and for a while it took a lot of pressure off – I felt noticeably better – but my AVM seemed to be developing quite rapidly and I got more poorly again after a month or so. I am back on the chocolate and occasional beer post op but I have to say I’m unused to beer and ice stayed off caffeine, even though I don’t think it is as important post op.
I completely disagree with it being separate. Nope. It all adds up to where you are at today and it all impacts. I don’t believe ‘separating’ acknowledges the compounding impact of it ALL. I’m sorry to say I don’t have any great wisdom as to how to deal with it all. I took a more self destructive route initially and I wouldn’t recommend that to anybody, but talking to a counsellor may help.
I’m over 10yrs on from my last major neurosurgery and still today I have what I call ‘funny turns’. I’m often asking myself ‘Why?’. If I can identify the why ie I’d overworked myself the day before or lack of sleep etc. I can accept it a bit more, but when I can’t find a ‘why?’ it’s frustrating.
Definitely sounds like you’re going through a lot in general that would cause anyone stress and fatigue… please look after yourself and know these challenges make us stronger, but you do need to try and take it easy also!
I will say as someone who suffered an AVM bleed in 2011, I’m still traumatised by that event all these years later and will never forget it for the rest of my life… that type of trauma as a human is scary from my experience BUT not healthy to dwell on cause we are here, ALIVE to talk about it… God bless!
Just to reassure you I also felt extremely fatigued and not altogether well for a while after my gamma knife. It took around 3-4 months to feel normal. I was assured that this was not radiation related, I had no obvious brain swelling or other complications and my treatment team said that this happens a sometimes and that it was probably down to the stress of the whole treatment build up etc…but I know how it felt and it was very real, I felt unwell after brisk walking, my face hurt (weird!?) and other odd symptoms. But it all resolved completely with a little time and rest and I hope it’s the same for you.
Thanks for letting me know. I know everyone is different so you have to keep the faith things will be better. Yes, I get some weird sensations on my face. But I’ve been having things happen like that for some time. Things that are not normal.
Today the weather was perfect here. That’s another thing that makes or breaks my day. The change in atmosphere pressure creates havoc with me. Bone ache (arthritis) headaches and things like that.
I had my hearing tested a few weeks back. I remember the doctor telling me I had 90% in my good ear but don’t recall him saying how the bad ear was. I found out today it’s only 16%. It’s been gradually getting bad but really since the brain hemorrhage. I’m hoping someday it may improve but not counting on it. He said he thought the distortion could be the AVM. As far as my scans, he sees nothing ear related.
I’m having to work my brain so much more to train people before I leave my job. I did over 3 1/2 hours this afternoon and it went pretty well.
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