So frustrated

[Ravenclaw]

I was involved in a Roadside Accident on 1st July 2009 at 9.50am, Teesside. I sustained 2 fractures to the skull & a bleed to the brain. I underwent a Right Frontal Craniotomy & Decompressive Craniectomy the next day which happened to mark my parents 28th Wedding Anniversary. I was discharged from hospital on 14th August 2009 but went back once a week for Occupational Therapy. My last session was 1st September and I was rushed straight back to the hospital that day with an epileptic fit. I have had no further dealings with a hospital since. No Neurologist or anything despite my symptoms getting worse.

Is this the normal procedure for a TBI? I am currently in the process of writing my Journey right now and today my Brain Injury Identity Card arrived which asked for the name of my Neurologist as does my Neurology information Passport. I feel very frustrated about having to leave those parts blank.

[cat3]

Hi Ravenclaw. This is commonplace after brain injury ; we receive intensive, expert care for the duration of our critical and immediate rehab period………..then it's back to the real world to cope with our flawed brain and with no support.

After 18 months of struggling with symptoms after discharge and no improvements in sight I asked my GP for a referral back to my neuro-team and, despite a long wait, received an appointment with a consultant. He arranged for all relevant tests plus referrals to other departments and I now have reviews every 12 months and a number in case of emergency.

Ask your GP for a referral ; he/she has a duty of care to provide access to a neurology team if you have issues requiring specialist attention.

Best wishes, Cat x

[Ravenclaw in reply to cat3]

I thank you for your candid reply. I am in the process of writing a book about my Journey since but it is proving to be an extremely difficult thing to do when I have no proof of my TBI and as I cannot get hold of my medical records it is proving to be extremely difficult.

[cat3 in reply to Ravenclaw]

Have you contacted the hospital record's manager ?

[Ravenclaw in reply to cat3]

I am going thtough my GP first and then putting in the Freedom of Information

[WinB in reply to Ravenclaw]

Hi Raven, had epilepsy since 14/puberty and I thought to myself God cannot give me anymore to suffer, epilepsy slowed up and was going about my business and then I collapsed with a SAH4. Not nice things but I have been told quite a few have them after a TBI some go away and others do not ...So get your pills correct and they hopefully will be few and far between. Horrible things to have. I had a real bad seizure after a Dentist mucked my teeth up. Thought it was stress but it was such a bad one I saw my Epilepsy specialist and he gave me an MRI ..He said I'd had another bleed. I was a wreck worried and thought I had my lot. But he said they were small ones and healed themselves up ..Was so relieved xx so get pills sorted and if you feel they aren't the right ones for you ask them are there better ones ..Good Luck Raven here my Essay ends lol xxx keep a smile at hand as laughter is so good for us xxx And Singing xxxx Went 5 years without a seizure xxx

[Shon48]

Morning , I agree with Cat . I have to go through our local general hospital for a couple of days before a transfer to the hospital where they can actually help me . It’s so frustrating but nothing I can do . It’s terrible how we are left to get on with it but you have done very well . Your gp will be able to push things along for you . I too don’t have an emergency number but I think if I phoned the neuro dept. I might be able to get help but I wouldn’t hold my breath . Also I would think the gp will have the neurosurgeons name . Good luck

Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿