Ongoing exhaustion after surgery

[Pinkrose1]

Hi All, does anyone still suffer with chronic fatigue and exhaustion after surgery. Mine was over two years ago and thought I would be fine by now. Is it normal to still have really bad fatigue?

[Paul469]

Yes, I am now 14 months on after surgery and am unable to do anything for more than 30 minutes without getting exhausted

[Pinkrose1 in reply to Paul469]

Sorry to hear you have the same. It's difficult to deal with when it's unrelenting.

[MattBusby]

Good morning, I had radio surgery in March 2022 for my AN, it measures 20 x 10 m.

I was told that it has stopped growing.my symptom's are mainly fatigue, and balance issues. I am 72 and before the diagnosis enjoyed very good health, i have been told a to pace my self, but its difficult, and the fatigue does take time to adapt. I had my treatment at Christies in Manchester, I will have a scan in September this year to check that it has not changed. Good luck.

[Pinkrose1 in reply to MattBusby]

Hope all goes well with your next scan

[Fairy-Princess]

Hi,

Yes! Had my op 19 months ago and chronic fatigue is my biggest challenge. I was lucky to attend a 6 week fatigue clinic (aimed at MS suffers) and it really helped me understand what it is, how it impacts daily life and how to manage it. I try and use these techniques but it doesn’t always work. I’m afraid it’s something you may have to just accept and live with. I have been going to the gym a lot and I find this helps manage my fatigue levels. X

[Pinkrose1 in reply to Fairy-Princess]

Yes i'm thinking the exhaustion may be something i have to accept and just do the best i can, a course on managing it sounds a good idea

[Ukulele21]

I have this problem too. I have been out of hospital for 16 months. My head and eye’s don’t seem to get on sometimes but when I have done a lot of gardening or housework , the next two or three days I’m can fall asleep at the drop of a hat. Trying to ration what needs to be done but it is so difficult. I hope you will less exhausted soon .

[Pinkrose1 in reply to Ukulele21]

I know what you mean about prioritizing things to be done, it can be frustrating and overwhelming. My husband does a lot for me now. I hope your health improves too.

[SunFairy]

Hi Pinkrose1

I am only 7 weeks post surgery for a Cystic AN removal.

I am sorry to hear you are still suffering such fatigue after 2 years post surgery. I hope things improve for you. Seems I have such a long journey ahead of me.

I was wondering if you suffered the head pains and roughly how long for? I am really suffering at night. I wake up every couple of hours and my head is so painful. I usually sit up for 10-15 mins waiting for it to ease off enough to lay down again. Thankfully I don't suffer this during the day. Do you have any tips (if you had this problem too)?

TIA 😊

[Pinkrose1 in reply to SunFairy]

Hi Tia, My pains were more when I moved, so if i sat up or stood up I would get intense head pressure and pain, like my head was going to explode. This was especially bad for the first few months after surgery but gradually eased off as time went on. I couldn't sleep on the side of the AN for a long time as that would also cause pain, it does take a while for things to settle down and you probably still have some swelling there which I think is normal as i had it too. I hope you will start getting some relief soon. If it keeps getting worse give your skull nurse a ring to check it's all ok.

[SunFairy in reply to Pinkrose1]

Hi PinkroseThank you for your reply. That's how my head feels ready to explode when I get those pains. I also find it difficult to sleep on the right side (AN side), obviously it is very tender still.

I have spoken to my skull nurse, who is absolutely amazing and she reassured me that it's just the brain readjusting and settling down after the trauma of the surgery. It is also reassuring to know other people have gone through the experience and things improved for them. So thank you for sharing your experience, it does help.

Thank you.

SunFairy 😊

[Pinkrose1 in reply to SunFairy]

You are very welcome. All the best with your recovery x

[SunFairy in reply to Pinkrose1]

Thanks again. I hope you can improve your energy levels. X