The effects of permanent brain damage

JayBee

Hello, it’s taken me a long time to get here so please be gentle.  I’ll try and keep this brief but I am really struggling to come to terms with what has happened to me.  Nobody seems quite sure how or why I have the problems I do but in a nutshell, I had a single session of very high dose stereotactic radiosurgery to a small brain tumour in May 2016.  It seemed to go well altough I had to stay on steroids until the September to try and control the swelling in my brain.  Apart from the side effects of the steroids I coped very well and continued running regularly, including a 50k ultra! Towards the end of a holiday in Germany I started feeling odd just as I’d been weaned off the steroids.  My balance was awful, my right side wasn’t working well and the fatigue was crippling.  The Christie hospital had me in for a brain scan and found that the swelling in my brain had returned.  I was put straight back on the steroids which did reduce the swelling and I was able to come off them again completely in August.  However, I appear to have suffered permanent brain damage which has affected my dexterity and ability to walk or run.  I still try to do both but my right side doesn’t work properly and I have a degree of muscle wastage now and it requires a lot of concentration so I tire easily.  Pilates has helped with my balance but now I have permanent pain in both hips, shoulders elbows and hands.  This is seriously affecting my quality of life and so far nobody seems to know quite what has happened.  They suspect the swelling caused the brain damage but they dont know why I am in so much pain.  I am reluctant to become dependent on pain relief but my sense of frustration is off the scale and emotionally, I’m not coping well at all.  I don’t know where to go for help or advice as late onset symptoms like mine are unusual. 
Many thanks to you for reading and if any ody has any advice they can offer then please do xx

Pippa_Alumni

Hi @JayBee, welcome to the community and thank you for sharing your story with us - I'm sorry to hear that you've had such a difficult time. Do get stuck into the community: we have lots of friendly members here who are always up for a chat. If there's anything specific we can advise you on, just let us know!

CockneyRebel

Hello JayBee and welcome

It is bad enough having problems when the cause is known, it must be even worse not knowing, fully, the cause.
It could be that the pain you have is unrelated to your brain swelling but we are not medics so cannot give medical advice.
There are many hidden disabilities, and being hidden makes them difficult to diagnose. Until recently, for example, fibromyalgia was little understood.

Not wishing to pry, you don't mention your age or if you have familly or work.
We are here to listen help and support in any way that a forum can. So please do ask any questions or just come and blow a bit of steam if it helps

CR

Amy36

That's so awful. I'm not an expert, but I think you will tire much quicker than most people, so I would say stick to pilates, yoga and walking. The running is probably making you feel worse. Personally, I don't think lots of running is very good for anyone, I prefer very gentle jogs or just a brisk walk.

  Have you thought about counseling to help you process what has happened?

JayBee

Thank you everyone.  I am 51 CR and because I am post menopausal that could be contributing.  Or long term steroid use as they wreak havoc.  I have been living with kidney cancer for 10 years, it has metastasised to both my lungs and remaining kidney over that time and I have had various treatments over the years.  However, my fitness and diet have helped me cope and recover well.  It was the brain tumour and/or treatment that was the real game changer.  I am married and it has put a huge strain on us and we are having some marriage counselling. Our 30year old son doesnt live with us now.  
I have had some counselling at the local hospice but we got as far as we could really.  Its my sense of loss and frustration I struggle with.  I just can’t believe what’s happened and on the whole, nobody seems to understand.  when I say I am still trying to run, you really can’t call it that as most people can walk faster than my efforts but I try and get along to parkrun most saturdays for the social side as running has been such a big part of my life for such a long time and has really helped me cope with all the stresses having cancer throws up.  Another difficulty, I’ve lost my coping strategy and have still to find something that isn’t hugely challenging.  I don’t mean to sound hugely negative but it’s so hard trying to make sense of it all and learn to live with my limitations whilst keeping a big smile on my face

Amy36

It's OK to sound negative; if that is your reality, that is what you need to say. Wearing the "I'm fine look at my smile" mask all the time is so draining. You could try opening up to people more and its OK to arrange for a coffee with a friend to say "I'm not coping well". Nobody is going to understand completely, but real friends will listen and accept you because they love you.

smiler43

HI I am a 43 year old woman who had a brain tumour medulloblastoma . I had 5 ops to.my head to remove it but unfortunately could not remove all of it too dangerous for me . I have been left with effects of the damage done by the tumour I have poor balance and walk with a four wheel walker now I also have a  peg feed as have swallow problems in van eat a small amount of blended food or mashed no lumps in it only ten spoons of it , I also have poor vision and have  double vision in one eye also have a scar on that eye ad had a ulcer which had healed now but caused blurred vision.  I sm shakey in limbs too . I don't know whether I will ever get back to how i was. I am in a care home in lowesroft flats now as independent living carers come regularly at times set . I would love to speak with anyone who is going through similar xx

smiler43

Hi how are you getting on?x 

whistles

Has nobody considered a stroke? Its been thought of on a few occasions that I was showing the signs of a stroke. The brain is good at repairing itself to an extent, but any interference can leave you with lasting problems.

smiler43

Hi  jaybee
Just wondered how you are getting on ? 

JayBee

Hi Smiler, I hope you’re doing ok?  I do apologise for not replying to you sooner.  I kind of flit in and out of social media so don’t tend to keep a very close eye on what’s going on.  You really have been theough it haven’t you?  I’ve not done too badly really, all things considered, but of course I still have cancer which isn’t going to go away but I’m not currently on any treatment and I am very grateful for that.  My neurologist has given me the go ahead to apply for my driving licence again which I’m really excited about.  She has explained that I will have to surrender it again if progression resumes or I develop a new metastasis but I’ll take a summer of independence!  How long have you been living with your tumour?  Do you have people supporting you?  You are very young to be dealing with such a huge change to your life.  I can only imagine how tough it’s been.  All the best xx

fishingmum

What a lot you have been through (and the others who have posted here) I know someone suggested counselling, however, anyone suggested bereavement counselling? as what you are going through is a kind of bereavement of your life when you have lost so much of what you were able to do, and now unable to do and you are losing part of your social life and the streesses it has put on your family life. I know it may sound a bit heavy but it is your life, and missing part of that is a loss.

You have done so well in keeping going, however the emotional stress will drain you as quick as the effort into running. You could still be part of that group but maybe in a change of roll, for example take water offer support and encouragement as well as walk part of the way. Look for other ways you can still do this without it taking so much out of you, maybe offer to do some short walks for a local dog shelter could offer you a mix of company on a walk, and keep you going with a different emotional need.

I wish you all the best.