Very little information on discharge from hospital.

[hazeldjh]

I was told very little about what to expect after my operation for subdural heamatoma.

I was only told to take paracetamol for two weeks. No follow up appointment was thought necessary.I went to see GP several times as I

was still suffering from awful pains in the head and I asked to see a consultant but none of the doctors I saw thought this was necessary.(It is almost impossible to get an appointment with my own doctor. Eventually I was put on amitriptyline which at least meant I was able to get to sleep at nights. I was still however suffering symptoms a year later and asked again if I could see a Consultant. Reluctantly a letter was written and I did see a Consultant who was kindly and I had a scan which was clear. I have tinnitus frequently and odd feelings in my head. The consultant said most people who have this operation are better after a year and I was one of the unlucky people who might have symptoms for the rest of my life. I would like to come off the amitriptyline but can't bear the thought of sleepless nights which made me feel so awful. The most helpful person was the Occupational Therapist but I did not need help with walking etc. so didn't feel I could keep bothering her. I am seeing

a Haematologist next month as the Consultant felt I should see him before going back on aspirin as I have a high platelet count and used to see someone years ago about this.

[peaches2]

Hi sorry, I didn't have the same operation as you as I had a brain tumour, I totally sympathise with you about pains in the head, I get that and for a while it was so excruciating that I couldn't actually cope with the pain and was given amitriptyline. It was a godsend! However I have been told that I can't take it for too long as it causes problems with kidneys/liver....I'm dreading having to stop taking it as the pain was uncontrollable and I'm terrified of ever having that kind of pain again! I've never taken meds before, I got through the op and the radiotherapy etc with minimal meds but that head pain is beyond even being able to explain! You maybe need to be more assertive and not ask if you can see somebody in future, maybe say you must see somebody....I think we are way too lenient when it comes to getting help for ourselves when really we know best when we need help and when we don't! Good luck at your appointment and remember to tell them everything and ask everything you need answers to! I'm sure somebody else will come along and reply to you soon but I just wanted you to know you're not alone! xx

[Gaia_rising]

I think that's a fairly common theme, Hazel- doesn't help those of us living in it, though.

I had emergency surgery for a ruptured brain aneurysm in February 2015, the occupational therapist assessed me on the ward, and didn't really give me any guidance, probably because I was antagonistic. There was no formal discharge as such, I sort of signed myself out, because the ex-husband was complaining about having to wait so long. The occupational therapist had referred me to a local rehab centre, and I 'took up' two appointments there, with the lovely lady wanting me to colour-code housework schedules, and telling me it was 'usually men' who were eager to get back to work, not women... that didn't sit well with me.

I asked my GP for a referral to neuro-psychology in January of this year, again, two appointments, again "There's not really very much I can do for you that you're not already doing yourself." I fully appreciate that the NHS is over-stretched, and that there's a lot of 'nobody knows' about recovery/adaptation post brain injury. All of these weird symptoms and after-effects are quite often brushed under the 'at least you survived' carpet, and we're expected to just get on with it, with our damaged brains, wondering if every single twinge, ache, or dizzy spell might be related to the brain injury...

[cat3]

Firstly Hazel, please don't give too much credence to the consultant's remarks about recovery being completed in one year ; I'm coming up to 5 years post-BI and still seeing signs of progress. In any case, the 12 month recovery claim was disproved long ago.

My head pain persisted for at least 18 months but I kept it to a minimum with codeine and diazepam. Keep up with the amitriptyline and pain-killers for a while longer and try to keep your fluid intake high ; low hydration is a regular cause of headaches/pains. And if stressfulness is an issue with you, see your GP again (when possible) and ask for a course of anxiety meds.

Take care m'dear. Cat x

[BeckyT77]

Hi im sorry to hear your story x my son had a bleed from a bang on the head and surgery to remove the clots. We are 16 months in now and he still has headaches. They wont go for a long time they say x. Its awful you havent received much care after surgery x. We are under Birmingham Childrens. They are wonderful. I wish everyone had the same care x all i can say is to keep taking the painkillers. Thankfully your scan was clear xx take care and hope you find some relief from it all xxx