steroids!

[Pomelo123]

I had a craniotomy about a week ago after finding a 5 cm meningioma which was affecting my vision and balance. I am on high doses of Steroids to reduce swelling and they are having terrible side effects. Anyone else had issues with them? I am being gradually weaned off them but I don't recognise myself on them - bloating , moon face and totally irrational!

[Bananabag]

Hi, I’m 7 weeks post op. after removal of 3 x meningiomas. I was given steroids, reducing over 10 days. I had a large fluid filled swelling for almost 3 weeks and have had some much smaller, lesser swellings popping up in different places since then, mostly around my temple and eye. Not particularly noticed by friends and family but I was very aware of them. My specialist nurses said it’s quite normal in the first few weeks and not to worry. All ok now. I hope things will improve for you very soon. Good luck with your recovery.

[Pomelo123 in reply to Bananabag]

Thank you for your lovely response. I rang the hospital yesterday and I can come off them completely as they were interfering with some other meds I am taking. Recovery is very slow - I managed my first walk unaided yesterday outside - 100 steps and so shattered afterwards. I hope you are feeling better. You must be over the worst now. I am preying for light at the end of the tunnel.

[Bananabag in reply to Pomelo123]

Well done you! I didn’t go out on my own for almost 3 weeks, as it was frosty and I live on a hill!

I can now walk for half an hour and sometimes do that twice a day. Best I’ve done is 8500 steps but it totally wiped me out. I’m back at my jive dance class as of last week but taking things very steady. I still get very tired in the afternoons and head for the TV and sofa - but I’m 73 so quite a bit older than you and we don’t bounce back as we used to! At least we are both on the right side of this now and hopefully things can only get better. Roll on spring!

[Pomelo123 in reply to Bananabag]

What a lovely heart warming story and how lovely you can enjoy your dancing again and a bit of a boogie! am feeling better day by day but I have never had any health issues and this diagnosis was a bolt out of the blue. I am trying to be kind to myself as my body is shot to pieces and it's not a time to be vain. I get my stitches taken out today at the John Radcliffe and for the first time I will be able to blow dry my hair nicely afterwards in terms of not looking like I have been pulled though a hedge backwards. It's really nice meeting you . My name is Sara btw.

[EnfantduParadis in reply to Pomelo123]

Just to add…as you say, maybe not a time to be vain, but we have our pride. My long term hairdresser was fantastic, gentle and skilled. She really helped me feel human after my craniotomy. If you have a good one, take full advantage!

BTW I am also a member of the JR club, and endorse the praise of everyone here for the specialist nurses. They are excellent.

Best wishes for your recovery. It takes as long as it takes 😊

[Pomelo123 in reply to EnfantduParadis]

What a sweet message! The JR were exceptional. I am off the steroids now and and it will be 2 weeks tomorrow that I had my surgery . I feel like a beached whale but I will worry about the weight gain when I am fully recovered! Nice to meet you child of paradise! How is your recovery going?

[EnfantduParadis in reply to Pomelo123]

So glad you have finished steroids - they do an important job but I was certainly happy to say goodbye to mine.

I’m recovering pretty well, thank you, coming up to a year post surgery. I’m retired but have a lot of interests and activities. I have gone back to most of them now, and my fellow volunteers have been very patient with me.

I found it helpful to keep a fatigue log (i.e. learning what triggers the fatigue, as it is not always obvious): and to work out how to get enjoyment from each activity, even cooking (!) without putting in so much physical or mental effort. That was a useful process in itself!

I often feel envious of people who are ‘back to normal’ very quickly - surgery these days can be amazingly efficient - but a) I will be 70 this year, and age makes a difference, and b) I had some complications after surgery which have slowed me down. So don’t take my year as ‘typical’.

I do find that when people ask what happened I forget that I am no longer squeamish about cranial surgery - but other people quickly go pale at the thought. We have survived a big thing. Take good care of yourself.

BTW my name is Elizabeth

[Pomelo123 in reply to EnfantduParadis]

Nice to meet you Elizabeth. My name is Sara. I am 54 and mum to a 15 year old boy doing his GCSEs this summer . Timing is not great but I am over the worst in terms of the diagnosis and the op. I hear you on the fatigue front . Some days I just can't make it out of bed and some days I am good. Wow you are in your seventies but it sounds like you have really bounced back. I hope I will get there- just trying to taking one day at a time

[Bananabag]

I am also under the care of the JR. I had my 40 staples taken out on Christmas Eve by one of my surgeons. Most were OK but about 5 of them really did sting! I hope yours have not been too painful. My meningiomas were monitored for 2.5 years before big enough to cause any concern, and I then had a 3.5 month wait for surgery, so not the absolute shock that you have had. They booted me out on day 4 as I was bed-blocking! A lovely lady on this site advised me to do exactly as I was told for the first 3 weeks and to really listen to my body. I did and I still do listen to it and try not to overdo anything - but I'm not the most patient patient!! So, I'm passing that on to you - do try to take it easy for a while yet. I can sleep on my scar now if I arrange myself carefully. I was struggling being stuck in one position all the time. The specialist nurses at JR have been very kind and helpful - I've emailed them with any concerns and they are very reassuring. Take care of yourself, Sue

[Pomelo123 in reply to Bananabag]

What a coincidence that you were at the JR too . I have just returned from having my stitches taken out and had confirmation that the biopsy results are benign and that it's a grade 1 and unlikely to regrow as they got it all out so the best possible news I could wish for: I even managed 300 steps in sansburys today albeit v slowly . Baby steps but getting there. Your story fills me with hope. Well done on your recovery ! Sara

[Bananabag in reply to Pomelo123]

What lovely news, I'm so pleased for you. Same here. My scan was completely clear. Lucky us! You'll soon catch me up on the recovery.

[Pomelo123 in reply to Bananabag]

feel like I have sort of been reborn. Well done on your scan. I will never look at life quite in the same way ever again. I used to stress about the small stuff and after this I think my outlook will change forever.

[Cast_away]

hi there

Yes I too had steroids to reduce swelling. I needed them prior to surgery as was too risky to perform craniotomy without - in fact craniotomy took approximately 16 hours due to swelling. Steroids continued for about 14 days post surgery and I was bloated and unable to sleep. Not an easy time I know but things improved for me over the following 6-8 weeks. I am now two years post surgery.