Recovery from craniotomy/meningioma

[lonestarsky]

Hi all, my boyfriend had a meningioma removed in September 2014. All is well in that they got the tumour out and it has been confirmed as benign. The tumour was on his left, so the right side of his body is weakened. On the whole he is recovering well but his tirendess/fatigue levels have not improved and he now has plantar fascilitis in his foot so he struggles to get around. Our GP and consultant have been very good but can't give us any indication of recovery times for the fatigue, and we are aware that its impossible to say for certain, but I'm just curious as to how long others have taken to regain their enegry after a craniotomy (or if indeed they've regained it at all). We do realise its early dys yet (4 months today since his surgery) but we don't know anyone else who has been through anything similar so it would be good to hear other folk's stories. (And all the best to anyone reading this who still has a long recovery to go).

[Kirk5w7]

Hi Lonestarsky, I'm almost 3 years on from my brain injury, not the same as your boyfriends, mine was caused by encephalitis, but we all seem to have very similar resulting problems, balance tiredness etc,

Personally my fatigue is just the same, I can sleep for England, and mainly only have bursts of energy, if you can call it that, about once an hour for 20 mins.

But, do remember we are individuals, yor boyfriend will have to work ou for himself how to manage his condition, the doctor cannot give him a definitive answer

[Kirk5w7 in reply to Kirk5w7]

Sorry I didnt mean to send that then, I was trying to rectify the spelling mistakes!

But I'd all but finished anyway, just remember, practice, practice, practice and push a little further occasionally.

Hope things work out, Janet x

[lonestarsky in reply to Kirk5w7]

Thanks Janet, yes you're right its something he really needs to get to grips with himself so that he can manage his own recovery. As horrible as these things are, it is reassuring that everything he's suffering from is 'normal' under the circumstances. All the best with your own recovery x

[Hidden]

Hello lonestarsky, I think in lots of ways it's harder on loved ones/familes than for us with ABI so can feel how hard this is on you. I found this the other day about brain tumour, don't know if useful or not but had thought to put the link up here in case before I read your post. Here:

everywhereist.com/70-things...

It's called: 70 Things I Learned from Having a Brain Tumor, put up 10 September 2012, I think it says.

Headway do great carers stuff and I'd recommend you get in touch, meet others (maybe with tumour/same) and talk to other families: great sort of 'family' feel: WE understand.

I think Headway were going to do a buddy scheme, those with ABI but further down the road of recovery helping those newer to all this. Sounds good...

If only more INFO was out there, easy to find and reliable!

I wish you 2 all the best.

[lonestarsky in reply to Hidden]

Ooh, thanks for that link I'll check it out shortly :). And thanks for taking the time to reply, I do think it would be good to meet others in a similar situation to both of us as it can be so hard for other folk to understand (as I'm sure you know). He looks well so its easy for people to assume that he's fine now, but he has such a long way to go. And there is not a lot of info out there, so glad I came across this forum. Take care x

[cat3]

As Janet has said, any type of brain trauma whether it be tumour, stroke or impact injury will almost certainly result in fatigue. Other after effects such as short-term memory problems, mood swings, headaches and depression, among others, are also common.

Fatigue has been top of the list for me (haemorrhage 3 years ago) and it's more a matter of working around the problem than trying to fix it. It's a process of adaptation and patience, but most of us have managed to find a new level of normality which time has taught us to accept.

I hope your partner's foot problem can be rectified so that he can increase his level of activity little by little. Exercise, however gentle, can improve mobility and motivation with the aid of all those extra endorphins.

All good wishes to you both and for your partner's continuing recovery. x

[lonestarsky in reply to cat3]

Thanks cat3 :). Its funny to think that just a few months ago he and I were completely ignorant of anything like this, it really has been eye-opening. Yes, the foot problem is the biggest issue at the moment but he's trying to keep as mobile as he can. He's been quite down recently because he assumed his recovery would be a lot quicker, plus he has a physically demanding job so he can't return to work (whether he ever will remains to be seen) but I think he's now starting to realise that its not really been that long since the surgery and he just needs to learn to adapt to the new level he's at. All the best with your own recovery x

[cat3 in reply to lonestarsky]

Yes, I think it's human nature to believe we can recover by sheer determination and when reality hits, that it might be a long, slow process, it's not surprising if/when the depression sets in.

It's like bereavement and all the different stages . . . . . . . . . disbelief, grief, anger, and finally acceptance. It's rough at times getting through it all but, with your love and support, your man might just surprise you both ; I hope so.

Please keep in touch. x

[Matt2584]

Hi Lonestarsky,

I was diagnosed with a brain tumour in 96 and it was located on the brain stem so I did not have to undergo craniotomy as such.

I was 11 when diagnosed and Was half the way through my first year at my senior school. I eventually went back to school but had to battle more operations so this really messed up my education. I experienced a lot of fatigue and probably a little more when I went to college as work was being piled on me which was one of the reasons why I left early in the end. After college is where I did not do a lot with myself at all. I wasn't getting as tired as I had been and now I am a member of Headway, so My mind is focusing on more things now but not too much were I knacker myself out. I still get tired but not as badily as I did. Actually I think I have improved a little with fatigue now :). My eyes would get heavy a lot and I might sit in my chair and close my eyes for a few minutes. I see it as an excellent way of recharging the batteries but not oversleeping, say if you were to have a nap. My eyes are somewhat heavy as I type this so I shall probably rest my eyes in a bit.

Speaking of Plantar fasciitis, does your boyfriend do any stretches at all? There are exercises to stretch the tendon out on the bottom of the foot. I thought I had it once before I looked it up on the net. I have flat feet where the muscles in the foot overpronate when I walk. It is mostly active in my right foot. Like your boyfriend, I have a slight right sided paralisys, mostly notable in my face. Back to the feet, I do stretches in the mornings for my feet and I also wear orthotics in my shoes. My R foot used to get painful but the orthotics are magic :).

[lonestarsky in reply to Matt2584]

Hi Matt, thanks for your reply :). Wow, I've never heard of an Astrocytoma - and I hadn't heard of a meningioma before my boyfriend got one! Glad you're doing ok. Yes, he is supposed to do stretches in his foot but he has bad pins and needles just now which makes it sore to stretch, He's on medication for it and has been told by the doctor that its nothing to worry about, so its just an annoyance more than anything else. Hopefully he'll be able to start doing them soon, and I'll mention orthotics to him as they would probably be helpfil.

Thanks again

[Matt2584 in reply to lonestarsky]

I don't actually know if the orthotics are only to help with flat feet or if it helps plantar fasiitis too? You mentioned 'doctor' was this the GP or chiropadist? A chiropadist may be able to help more than I did though, I just pointed you and your boyfriend in the right direction :).

[Matt2584]

By the way, my tumour was benign and was an Astrocytoma, sounds like a planet or something haha. Haven't heard of meningioma before until now. Whatever the weather, the tumour I have and your boyfriend had are both 'oma's' :).