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Brain and spinal surgery. A bit of a moan without judgement.

(19 Posts)
NanSue Mon 28-Dec-20 19:45:43

I have been a member of Gransnet for many years now but haven’t actually posted since 2016 when I had a benign brain tumour removed which all went well. The year after in 2017 I had a tumour removed from my cervical spine in the Southampton Neuro which didn’t go so well. I was left with a spinal injury causing paralysis in my right hand side. I spent 4 months in Salisbury Spinal injuries Unit where I was told I would never walk again. However I persevered and promised myself that I would walk out of there. I didn’t quite manage that but can walk short distances which is great and know I am lucky. I have been left with severe rigidity/spasticity in my right arm shoulder and side.
The reason for the title of this post is that I want to complain about the sheer discomfort and pain of it all of the time, which of course I try not to. I know my family don’t judge me when I do have the occasional meltdown but they would I’m sure, if I did it every day. My husband is great and not well himself which makes me feel even worse about complaining. I’m struggling at the moment. I do feel a bit better for putting it all down in words and know dear reader that you won’t judge me. Thank you for listening.x

Luckygirl Mon 28-Dec-20 20:00:07

Oh - please moan away - goodness knows you have good reason. Sometimes it is very hard indeed to keep Mum when every day is a struggle. I know we all put a brave face on things so as not to spread the pain, but you really are entitled to let of steam here.

I am sorry that life has treated you badly over the last few years. flowers

FannyCornforth Mon 28-Dec-20 20:09:24

Hello Sue
A humongous well done for what you have already achieved.
Chronic pain is so draining and debilitating, and also so isolating.
As a sufferer myself I have received much support and comfort here on GN, I'm certain that you will too
thanks

Oldbat1 Mon 28-Dec-20 20:21:14

I’m so sad you are having a torrid time. I think it helps to “voice” things. Wish I could wave a magic wand for you.

Jaxjacky Mon 28-Dec-20 20:21:46

Well done for on your major achievements in the face of considerable adversity NanSue. I cannot begin to understand the amount of pain you have to live with, this is the place for a drop of tlc and cheer. You’re extremely welcome to have a grouch during the worse times and hopefully join in on the other threads going. Drop in to the Good Morning one, it’s a gentle, kindly start to the day and it’s good to have another GN with their news, or just observances.

NanSue Mon 28-Dec-20 21:05:56

Thank you so much for your kind messages. I am so glad I have “found” Gransnet once again after all this time. I have no idea why I haven’t done so before now. I am already enjoying all the different forums, topics and tips including style and fashion along with the competitions etc., , Here’s hoping it will keep me occupied and keep my mind off of the pain a little. I plan on it being a daily pleasure.

Doodledog Mon 28-Dec-20 21:16:58

Have you been to a pain clinic? I haven't needed to use on myself, fortunately, but I have friends who have. You could ask your GP if they are still taking referrals during lockdown, if this isn't something you have tried already.

I hope you are able to find some relief, and that you enjoy your time on Gransnet.

Juliet27 Mon 28-Dec-20 21:33:03

My goodness NanSue you’re fully entitled to moan. You’ve had more than your fair share of problems and your determination is to be admired. I’m only beginning to realise what a comforting place GN can be and it’s good that you’ve rediscovered it.

crazyH Mon 28-Dec-20 21:40:52

NanSue, you have been through the mill and have every right to have a moan. But, you haven’t. You were just giving us the facts and figures, so to speak. This is a good place to come, when you feel down. Chronic pain is so debilitating. There are lots of forums on various topics. There are various games you can play....it does take your mind off things. I hope you keep dropping in .....and if you want to offload your problems and concerns, this is the place. flowers

NanSue Mon 28-Dec-20 22:35:53

“Doodledog” I haven’t actually tried a pain clinic. I’m not sure why unless it’s because it is nerve pain they have given me all the relevant painkillers. I do have Botox in my shoulder arm and hand every 3 months to try to relax all the muscles although it doesn’t help much but I’m scared to stop it just in case it’s doing more than I realise (if that makes sense). I also have had a physiotherapist come in every now and again during lockdown because they haven’t opened it up in the hospital again yet. I’ve been given websites on mindfulness. I might well enquire if it’s a possibility or would be of any use. Thank you again.

grannybiker Mon 28-Dec-20 22:38:21

Sue, you're a star.
Raising my glass of Baileys to your resilience and mettlesome spirit xx

V3ra Tue 29-Dec-20 03:47:01

NanSue have you tried taking CBD oil to help with the pain you're in?
Have a look at the different products available on www.healthspan.co.uk.
There are articles about it as well.
I use the balm on damaged collar bone cartilage which I find helpful.

Charleygirl5 Tue 29-Dec-20 07:16:24

I agree with Doodledog go to your GP and ask to be referred to a Pain Clinic. Like everything else in life some are good, some are bad but you can but try because it sounds as though you have nothing to lose.

I did years ago and the fellow was young and enthusiastic- really helpful. The waiting list may be a problem but at least you would be making progress. Good luck.

M0nica Tue 29-Dec-20 08:42:11

All I can offer is sympathy and admiration for your resilience.

Oldbutstilluseful Tue 29-Dec-20 08:50:57

I have no advice but have to say I think you’re a brave, kind person who deserves to offload. I hope some of the advice here proves helpful.

baubles Tue 29-Dec-20 08:51:19

NanSue welcome back! This is the perfect place for voicing your troubles so do let it all out and know that people here will listen. There’s often someone who can offer practical advice.

Katyj Tue 29-Dec-20 09:02:09

Well done Nansue you are amazing ! Keep on doing what your doing, and feel free to moan away. Hope your pain improves 🙏

NanSue Tue 29-Dec-20 13:25:10

V3ra Yes I have tried CBD oil to no avail unfortunately but I am open to all suggestions. I think nerve pain finds it’s way around everything. I take Pregablin and amitryptyline I also took Baclofen for 6 months which I finished quite recently but I don’t think it’s something you should take long term, that hasn’t helped as it is a relaxant, all of which take the edge off a little. It’s at its worse when I am tired or cold, both together feels like the end of the world at the time but I was warned of this, so I try my best to steer clear of both. I initially tried my best to cope without some of the meds when I came out of hospital by trying mindfulness but had to give in. I don’t know about others but it wasn’t for me.
I know I’ve said it before but thank you all so much for your kind words. I expected nothing more than this to be cathartic for me by writing it all down but you have all been an absolute tonic!

Marilla Sat 09-Jan-21 18:07:11

NanSue I am so sorry that you are having to put up with long term chronic pain. It is debilitating and exhausting. Sometimes it can be all consuming.

Do you have a sympathetic GP who would listen to you and re-evaluate your medication? It would be helpful if you told your GP how awful your pain is and how it is affecting your everyday life, rather than per apps being stoic.

I sincerely hope you find some medication to improve your pain, even if you have to go down the road of some ‘heavy duty’ tablets to alleviate your pain.