Chronic fatigue after gamma knife

Hi all, hope everyone is well. Just a bit of comfort, advice really. The last 2ish months, after work I have been feeling extremely tired so
Much so that I have been having an afternoon sleep. I cannot even call it a nap as I fall asleep around 4:30 and sleep until 7-8pm so that is like 2/3 hours sleep I’m having!!! I then wake up and cook my children’s dinner, they are aged between 20-13. I have really fallen into a bad pattern which isn’t healthy for my children I know. I still then go to bed around 11-12pm and sleep till 8 am the next morning. I am waiting for a doc appointment to check iron levels.has anyone else suffered like this? Is this normal after gamma?does it ease of with time?
Thankyou in advance,
Amanda xx

Hi Amanda. I had gamma knife 17weeks ago and have noticed being more fatigued. It seems to accumulate and then I need a catch up. Mind you pre bleed I was living off caffeine and getting about 5 hours of sleep a night. I now get at least 8 a night, made some priority/lifestyle changes. I do notice by Friday after work I’m about done and dread if we have Friday kids sports but try to do it with a smile! I certainly haven’t experienced fatigue to the extent you have post treatment.

Thanks Jd12, I have had two gamma treatments, I’m 16mths post first dose and 9mths second dose, apart from the recent tiredness I have felt absolutely fine, I haven’t really suffered from headaches, seizures etc. I’m just not sure if it’s a side affect of the avm/ radiation or my iron levels are low. I have read lots on here about fatigue.My partner keeps telling me not everything is related to my avm. I have sunk into relating everything to this. Until my avm was diagnosed I used to have b12 injections so maybe I need to go back onto them. I cannot get a doc appointment until around two weeks so was just hoping for someone with similar problem.
Amanda.

Yes its very normal and it could be months depending on how much swelling and healing needs to happen. The brain goes slow. It varies a bunch

Now its none of my business but I’ll say it anyway. What the hell are you worrying about your kids meals for??? You just had freaking brain surgery and they are damn lucky to even have a Mom at all.

If I had kids between 13 and 20 living at home (and have we raised 10 not counting the foster kids or our current population of 3 at home finishing up their education) I certainly would not be guilting over fixing them dinner. If they want to eat at six they can darn well work it out among themselves who turn it is to cook. (13 isn’t too young)

That of course is after after they divide up the rest of the. household chores, cleaning and laundry and the REST of the meals not to mention the grocery shopping. YOUR job is to heal and heal well so can be the mom you know you are for the next 40 years. It won’t hurt the kids (or their school/social lives) one bit and will actually do them a lot of good.

If they are resistant or skip their turn figuring you will bail them out, you don’t need to worry if you stick to it. I promise you they won’t starve to death until they figure it out and whos’ ever turn it was WILL hear from the others. Make sure they leave you some when you get up. You can catch up the day with them while you eat. The worst that will happen is a better and stronger family. Use what gas you have to be and do with them not wait on them.

TJ

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Oh Tj thankyou, that put a smile on my face…I think as a mum we will always feel the guilt of not being able to look after our kids the way we used to. I’ve always done everything for them. I didn’t cook for them one particular day and said they need to sort themselves out. Well their idea of feeding themselves was getting McDonald’s at 2:30 in the morning lol.
As far as I am aware I haven’t ever had a bleed or suffered any swelling due to the radiation.
Amanda xx

Amanda, when is your next follow up? I look forward to hearing how its all going. Great to hear on the absence of side effects thus far, that’s really good news. I go back at the one year mark for an MRI, clock is ticking but seems a little slow!

I really don’t know JD12, when I had my 2nd gamma treatment the gamma surgeon said it has shrunk by around 10% already, that was back in may, it had only been 6months so quite positive been as radiation doesn’t really start to work until the 12 month mark.I had a follow up with my normal consultant in August who requested a MRI with dye to see how things were going and rule out swelling.I have had nothing since, I haven’t received the results of my MRI . It is quite frustrating as we are not in control of when we get to see the docs we just have to sit and wait for the letter to arrive. In the U.K. The appointment system is a bit slow. But isn’t the saying “no news is good news”!!! I hope all turns out well with yourself, I have my fingers crossed for good news xx

Hi Amanda,
I had an AVM bleed and had a lot of fatigue while recovering from that. Back to work after 3 months. Gamma knife treatment after 6 months, as I was not a candidate for surgery or coil/glue. I work 8 hours a day, don’t do to much during the week, pace myself on the weekends. Very different to pre bleed. Eat well or try too. Employed a gardener. It’s now 15 months since the bleed and 7 months since treatment. My MRI shows very much reduced blood flow through the AVM, so all is going well. Am now studying and go to the gym most days for low intensity stuff, along with work. If I’m tired I really try to wait till 8.30 because I know that if I have an arvo sleep it really plays havoc for me. It would be the same 2 hour nap as you though. But each day, week, month I just go along with how I feel and what I can do and I don’t despair of what I can’t. If I get worried about something I get help. My recent hair loss and nausea and weight loss sent me to a dietician, who is helping me. Sounds like you are doing great. I felt my symptoms have gradually lessened as time goes by.