I need advice and help please I’m struggling so badly mentally I need as much advise from people who have had a craniotomy with there original bone mine was put in my tummy and then put back in my head it’s been just over 6 months since my last operation I’m at the end of my tether I don’t know what feels ok what doesn’t I’m constantly scared about my head I keep phoning the hospital but there like it’s all fine don’t panic you will be ok. My bone flap feels really raised around the edges but didn’t last week? is this normal does this happen to anyone else it sinks a lot of the time then returns to normal is it meant to move is this normal.
I don’t know how much more I can take I feel like I should of died then no one would have to worry about me I wouldn’t feel like this I can’t sleep I don’t want to leave the house I don’t want to eat I just feel myself slowly giving up any advice would be greatly appreciated
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Braininjurysurvivor
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Have you thought of phoning Headway's helpline ? I don't have a cranioplasty but, from what I've learned over the past years, lumps and bumps are commonplace around the scalp for some time after the surgery owing to settlement of, and changes in, swelling, muscle mass and fluid.
I hope that by calling the helpline you'll get a clearer picture of what's normal and what isn't. Reassurance from experts might be all that's needed to allay your worries. I hope so m'dear….
Helpline no is freephone 0808 800 2244 during office hours.
Yes they can help and its operated by trained nurses and other medical staff. From my own experience they can be a voice of calm if that's what you need at that moment or give clarity and guidance.
Regards
Hi,
I have read your bio to further understand the events. I can tell your a fighter with great courage and determination which has helped you get as fas as you have in your recovery.
Out of interest, my wife has had extensive rehab to learn to become independent again, she had the same type of worry as you mention aftwr her crainiotomy and VP shunt fittng and has found help in talking with a neuro psychologist. Were you ever offered this as part of your recovery or is it planned for your on going rehab? please don't feel you have to share an answer, its very personal but I know this has helped my wife and could be of help to you also. I have my daily part to play in reassurance for my wife that it is OK or be the one to contact the hospital if it isn't.
Thank you for your reply I have a Phsycologist but not a Neuro one my surgeon did say if I was struggling I could maybe see a neuro physciatrist but I haven’t done that yet I was explaining to my Phsycologist the other day it’s as if my brain won’t allow me to accept that everything is ok because I have done so so incredibly well I feel as though my whole world is going to come crashing down and something very bad is going to happen I’m sorry if this doesn’t make much sense
It sounds like you're struggling with PTSD or panic disorder and badly need to talk out your fears. You really don't sound stupid my dear but you obviously need reassurance, counselling and possibly a mood stabiliser or antidepressant to help you come to terms with all the trauma you've had this year.
I see from your profile you've had Amitriptyline, which should help with nerve pain and depression, but perhaps a change of (or additional) medication is needed to address your anxiety. As your surgeon has already agreed to refer you to a neuropsychiatrist then that could be the ideal route to investigating the psychological and possible medication issues.
We're often stunned by traumas...... 'sleepwalking' through all the necessary procedures until the point where the chaos is over and the reality of the situation suddenly hits. For some it's just tremendous relief, but for others it's too much to process all at once.
My family and I 'debriefed' for months after my discharge from hospital and it was massively cathartic, allowing us each to let go of repressed emotions. So whilst seeking professional help wherever it's available, keep talking m'love ; it's highly underrated. You're still at a raw stage in coming to terms with everything and no one here is judging you, I promise.
Thank you for your reply I have been diagnosed with PTSD quite badly I’ve now been referred to a neuro psychiatrist and my specialist has recommended that I maybe go onto anti depressants as she’s really worried about the way I’m feeling I just hope it doesn’t take to long to sort out. My family have been a bit of a nightmare at times it’s delayed my recovery and sent me into deep dark holes which most definitely has not helped in anyway. I appreciate that no one knows how to deal with a tbi but it’s like no one even tried they were all there when I was in my coma when I needed them the least and when I came home everyone just seemed to slowly disappear my daughters are the most important things to me I have to get through this for them. My specialist described it as thou I’m in a deep deep dark hole and I can see no light but she said I will eventually it’s going to take a long time but I will get there I really hope that’s true. I just want to go back to work and do some of the things I used to do without this accident taking over my life it’s all I think about 24/7
Sorry for this long message I kind of couldn’t stop once I started. Thank you again
I think your biggest challenge Leanne will be accepting the inevitable changes which come with most brain injuries. I mention this in response to your remark about wanting to get back to work and to do the things you used to do, which is a normal, healthy attitude but one which can bring frustration and disappointment.
Most folk here are changed to some degree ; whether more emotional, less able to cope with excess stimulus, struggling with memory issues,.....or more...
I just think you need to address your mood as a priority, and then take stock of how physically & cognitively able you're feeling before launching into commitments of any kind, be it socially, work-wise, or other.
I left hospital and immediately ordered a bright new yellow bike to prove I was, if anything, fitter than ever.....how naïve was I ? For starters I could only just walk and the bike wasn't used for over a year and it took around 2 years for me to realise my bloody mindedness was no match for my brain injury.
I now drive, ride my bike and live a normal, if quiet, life. But I'm glad I don't need to work as no way could I hold down any type of regular work owing to fatigue and loss of concentration.
We're all unique, so no one can say how good your recovery will be. Many of us can't work.... some work part time....others full time. You'll find your level as most of us have.....by trial, error and experience. Take it one day at a time and don't think too far ahead ; it's only when looking back that we can see how far we've come.
Concentrate on yourself and your daughters Leanne, and let everything else stay on hold 'til you're good and ready... x
I had a crainiotomy 45 years ago following SAH and 9 hour operation. My original skull was kept in the fridge for 4 months until the swelling went down enough to pop it back on. Your body adapts and gets use to not having the bone, so when it goes back on it feels like an intrusion but the body adapts again and gets use to it ......you hardly ever know its there.....the mind plays games with the imagination .....so don't worry they have been doing skull replacements for years it really isn't anything that you should worry about......
I just read your post, it’s amazing what our wonderful nhs can do isn’t it?
I had a craniotomy and it has left me with dents in my skull. They replaced the removed piece of skull as part of the operation. Fascinating to hear that yours was kept in the fridge!
I had one after a rollover car accident. They reattach the bone piece with screws, so it won't move. I have irregular parts on my skull also. I had a stroke also from a brain stem bleed.
Hi I can relate to you I had brain tumour removed 2017 I then got serious infection my bone flap was literally thrown in the bin because of it. I had my third op last June had 4"titanium plate put in try and relax it will be fine mine feels raised with no problems hope this helps good luck with recovery.
I'm 6 years post op for a brain abscess/craniotomy so fully understand where you are coming from,and the dr's not really saying what to expect!!
I also had an infection about a week after which i then had to have bore holes and a tube which was drained everyday and injected with antibiotics....
You will go through many different sensations like an earlier comment the mind plays tricks.
I had a fab outpatient Dr who reassured me that alot of what you also feel is all the nerves knitting back together which takes time.
I won't lie to you,you will go through so many different emotions and weird sensations even now it still happens,but everyone is different in their healing process and emotions,anxiety being the main culprit as of the not knowing what the hell is going on!!
My neurologist suggested to me about maybe going to see a psychologist this was about 2 years after,but i told him i'd got this far without seeing anyone,stubbornness and determination stopped me.
Nowadays i still think maybe i should have done it and get days now where i consider should i still try it!!
Mine was sewn with silk thread not screws,i know this as i had to ask them with working in an airport and having to go through the security machines....lol
Mine is slightly raised(you don't really notice) with dents from the bore holes,but i have that side of my hair shaved and all underneath for the style of my haircut,one being i can't be arsed to grow it and keep colouring it(now grey)....lol..so it blends in nicely with my blond highlights.
I even wear my hair up the scar doesn't bother me it shows you are a survivor and it's all down to mindset and confidence.
Things take time and i never thought i'd get to where i am now (**,) and it hasn't always been easy, but if you are determined you can do anything even if it means counselling to help do it
for peace of mind and even contacting the Headway helpline like mentioned.
Good luck with recovery and try to do things to keep you occupied,one of things i did was the adult colouring books,there's only so much tele you can watch and light excerise helps including keeping hydrated and good diet.....
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