delayed reconstruction

[Jodieb73]

I had a subdural haemorrhage in may 2023 removing most of the right side of my scull even encroached my forehead that’s some 10 months ago now.

I was supposed to receive reconstructive surgery and have titanium implant to protect the sensitive area where my skin is my only protection to my brain. That was supposed to be 3-6 months after the initial surgery.

After all this time I’ve been suffering With electric shock type pain in my scull edge I have also been to my doctor because I’m developing a lump on the bone my doctor said it’s my scull calcifying to compensate.

Still knowing this the hospital have been ignoring my awaiting surgery and concerns.

Does anyone else have any similar experience

Many Thanks

[cat3]

I'm still in pain, waiting for an osteo appointment after 9 months ........ But your plight makes mine look trivial by comparison !

Maybe time to involve your MP Jodie. The NHS, now 'On it's knees', needs this government to urgently get on with the job of financing it and restoring it to its former excellence.

My daughter in law waited over a year in dreadful pain until my son contacted their local MP. Councillor Western intervened swiftly and her surgery took place within the week.

So sorry you're facing this neglect m'love ; please speak with your MP...

Good luck, Cat x

[Jodieb73 in reply to cat3]

Thank you good idea

[DTBI]

I experienced a TBI back in 2014 and had the left side of my skull removed in France where they bin the bone. I was lucky enough to get the titanium replacement 4mths later. Unfortunately my memory is poor, the only bit I remember was my balance getting up too quickly.

Luckily I’ve had no problems since they installed the Titanium. Good luck with your replacement x

[Jodieb73 in reply to DTBI]

Thank you for reply yes I do agree mine should have been 3-6 months after my op I also have poor short term memory and left side balance issues thank you

[DTBI in reply to Jodieb73]

Don’t worry too much, my short memory is poor, and I’m confident your balance will level once the titanium is in place. As an aside it took me some time to come to terms with my TBI.

As difficult as it is try to think & concentrate on any positives you remember. Good luck x

[Needlefelt]

Hi, I suffered a TBI in a car accident back in 1997 - severe head injury plus other serious injuries - after major surgery and neuro rehab was sent home but then an infection was discovered in the wound on my skull where I’d had surgery and I was rushed back in and they had to remove a large part of the infected skull bone (on my left side). Unfortunately there were complications and I developed Hydrocehalus. To cut a long story short, after months of them trying to sort this out without putting in a shunt I was sent home to ‘try to get on with my life’ ( I was only 17 when I had my accident) and if I needed it I could go back for lumber punctures for the pressure in my head. I didn’t need to and the pressure settled. A couple of years later I went back to see about putting in a plate to give me a full skull and was advised not to (I think because of the risk of pressure building in my skull). Me and my family were concerned, I think I remember my dad asking if I should wear a helmet all the time but was told to be careful but not to worry! 26 years later I am still living without a large part of my skull. I have had a few close calls but to be honest have generally been ok (or maybe just lucky). The join between the edge of the skull and just the skin does get quite itchy even now and I do get weird pains sometimes along the join and the skin where there is no skull. My balance can be off sometimes and I do get pain around my head and face (I did have reconstructive surgery on my face after my accident though). I can’t remember what it was like to have a full skull and I do worry as I get older if I start falling etc that it could be a problem but I try to just focus on the now and just hope everything will be ok because the fear I would have if the skull was ever replaced of having problems with hydrocephalus again would be unbearable. Looking back I now know I was completely traumatised by what happened the second time I spent in hospital (on top of the first visit). Obviously back in 1997 there was no recognition of mental health issues following such a traumatic experience and I’ve never had any help.

I really hope you get your surgery as while I am ok and getting on with my life the best I can, it does cause me a lot of anxiety which I wouldn’t wish on anyone. I hope I haven’t rambled on too much here, I have never had any connection with anyone living with part of there skull missing. If you want to ask me anything then please feel free and I will keep my fingers crossed for you that you get your surgery. Take care and be careful.

Best wishes x x

[Jodieb73 in reply to Needlefelt]

Thanks for your reply it’s really awful they said to be carefull they were very particular about me wearing my helmet which is very ugly and quite a spectacle for the public but I can’t believe they said no to you

[Needlefelt]

Hi I guess because it was so long ago and as I’m not under any neuro specific medical supervision anymore the only way I’d find out about progress in treatment/care would be to ask for it. It’s been really helpful for me reading other people’s experiences on here. It must be awful to have to wear a helmet that doesn’t look great while at the same time knowing it is helping you keep safe. Take care and keep us updated on your progress,

X x

[Jodieb73 in reply to Needlefelt]

Thank you don’t tell anyone but I’m getting a little complacent with my battle hat. I know not good. Yes it is very good to know there are people who have been there and are still doing well

Thanks for your message

[Needlefelt in reply to Jodieb73]

Hi, good to hear from you again, I can totally understand about wearing the helmet it must be so frustrating. Don't let it stop you from going out though. I saw your other message about the swelling - yes I've always had this. I've never had any advice or info from any doctor on this but I've put it down to the build up of fluid in the brain and often if I have a headache then it will be more swollen. It always goes down though. In the early days and sometimes even now I worry that it won't go down (when my skull was removed I suffered from Hydrocephalus/water on the brain so it terrifies me that this has come back) - it always does though but if you're worried you should check with your doctor. I guess you haven't had any news about your surgery?

x x

[Forxxxxsake]

Hi sorry to hear another person let down by no surgery,my son is 2yrs 2mths left waiting for surgery,so many time frames come and gone with no news or updates,I think it's terrible . He stopped wearing the helmet which he hated ,and now wears a bump cap . So at least he can look normal . Wonder if anyone else has had to wait this long ?