Hi All, New here, Question: Hi Everyone, Just... - Headway

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Hi All, New here, Question

Bushman1926 profile image

Hi Everyone,

Just wondering if people have any sort of follow up or treatments following surgery. Basically I had to have a large bleed drained end of October 2 months after I got a concussion.

Basically sent home from hospital and told any problems go see your doctor. Being a bloke I've not, as I don't see my issues as important, reading what some of you guys have been through I still don't. :-)

Nothing to serious, (well I don't think it is), just some short term memory issues and my speech is a bit messed up. Just starting to get me down a bit.

Anyway, have you been given any support after something similar? Or is it up to me to do?

14 Replies

Very little is generally the answer.If you want help you have to ask for it so go see your GP and get referrals to those that can help.

Personally the help I’ve needed I’ve had to pay for because my problems were seen as “within normal parameters” .

Do as much research online as you can then go armed with where you may be able to get help.

Good luck

Janet x

Bushman1926 profile image
Bushman1926 in reply to Kirk5w7

Thanks Janet, I'll get in touch with my GP.

Your GP should have your notes, I would book appointment, you may need speech and language referral, (memory, speech) . Dont worry it's done virtually so no clinic

You could contact Headway for advice too whilst waiting for GP appointment.

Write bullet points on areas you notice are different to support right route.

With my husband he continues to be under Brain Injury Team and Neurosurgeon followed up 9months after. Neurosurgeon happy with progress, actually impressed and will booked down for review (dont know when). Husband was also part of research, monitoring levels before death, that team followed up 3months and 5months after and GP now monitors whilst contacting Southmead with each bloods done and advice.

I dont really know, but find everything slow, so if issues get ball rolling due to lengthy timescale with waiting.

Thanks for that, didn't think about making notes but obvious really.

Same here Bushman. A year on from discharge I still struggled with issues so asked my GP for a referral back for reassessment by a neuro-consultant. It was a further 11 month wait for the consultation.

It seems much the norm to be discharged into the care of our GP and to 'See how it goes' for a while. I guess it makes sense considering how stretched neuro services are with the constant influx of further brain injury cases. And there's no knowing whether a patient will progress or struggle with after-effects or of the timeframe for realising those outcomes.

Brain training pursuits (online games, jigsaws, cards, crosswords, memory games) can help improve concentration and word recall to a limited extent. We tend to devise various tricks & dodges to cope with residual shortcomings !

Ask your GP for a speech therapy referral ; it might take a while to come through so all the better to arrange it sooner rather than later. Stay around Bushman and let us know how you're coping. Best wishes, Cat x 😐

tunas profile image
tunas in reply to cat3

scrabble app is quite good for word finding, it is a online multiplayer game

cat3 profile image
cat3 in reply to tunas

Yes I play against the computer and some of the words it comes up with are pretty ridiculous (and not in my dictionary !) But my word finding is too slow to compete with other folk .......and it keeps me alert & on my toes.. 😏

My partner was in hospital away from home for 6 weeks. He has never had a follow up appt with a consultant - perhaps because we changed health authorities when he was able to return home. We have seen a specialist nurse but she was keen to sign him off. GP barely knows he has a brain injury. Three years on I still feel angry about this. One issue is that he needs to want help and part of the condition is not recognising his cognitive slowness etc

Hi Bushman1926

I would call Headway and get advice, particularly re assessment. It is pretty hard to be aware of and recognize your own deficits.

I will share a quirky one - about 11 years on some did a physical assessment and asked me to tap my toe, as if in time to music. Took for granted I could - but I could not. One can live without this skill, but it just shows that an actual assessment can uncover things you just take for granted you can do - til you try to.

In some ways it is easier to get help when you are still relatively freshly injured.

Hi Bushman, I agree with Leaf100, you had your concussion nearly a year ago then? It's quite important to sort out some rehab help sooner rather than later, as your capacity to improve tends to slow down over time. Ring the Headway helpline for a helpful and informed chat and see what they advise 0808 800 2244.

Meanwhile, perhaps you could tell us what's been happening to you since your concussion? You say you are getting fed up? How are you coping at home? A large bleed is pretty serious - what happened to you?

As the others have said here, it is important to get assessed, because a common feature if brain injury is a lack of self awareness, which can mean you don't seek sufficient help. What do your family and friends think about how you are? It must have been tricky for you while we were in lockdown.

The only thing is the issues that many of us experience in busy environments for example, may not have happened to you yet, depending on how much you were able to get out and about over the year. Do you work by the way?

Leaf100s story has reminded me that I couldn't walk heel to toe across my neurologists room at first without toppling over!

Thanks everyone, good to read others experience.

I'll get onto the GP and I'll give Headway a call, don't really like using the phone, but that's always the case, can't blame that on the head. :-)

Been working from home all through covid, work were great in truth, had 2 months off and then a phased return for a couple of months.

Home schooling 2 secondary kids has been a knightmare too.

Background on the injury was I fell backwards playing football and banged the back of my head on the 3g pitch (concrete underneath apparently)

That caused the concussion want to A&E

X-Rays were all OK then so sent home to rest up. Beginning of October the headaches and tinnitus started and slowly got worse. Went to Docs 21st as was unsteady and things didn't feel right as weak down my right side. Booked me in for a scan on the following Monday.

Got worse rapidly over the next couple of days, got taken to local A&E lunchtime Monday and rushed to St Georges Monday evening. Into Surgery 2AM Tuesday morning.

Apparently it is quite rare for a bleed to be that slow it takes a couple of months to get bad.

What it feels I'm left with are speech problems in so much as my words and mouth can't work as quick as I think I'm thinking. And I've a slight stutter I've never had before.

The memory is an odd one, most long term seems fine, but I can't remember what I've forgotten because I've forgotten it, and that's a constant doubt if I should know it. New stuff, I'm not sure my retention is what it should be.

So in my mind my problems are not that great which is why Ive probably sort of ignored them. The family are great but they have enough to worry about without my problems. :-)

Fed up with the head, and working from home, and with the DVLA being incompetent I'm not likely to get my licence back anytime soon so will be WFH while everyone else is back in the office speaking to people they are not related too.. 2.5months ago my licence should have been returned but no sign and due to government cuts the light at the end of the tunnel has been switched off.

Some people enjoyed lockdown, I hated every single second of it.

Thanks for letting me ramble 👍🏻

Pretty tough then - living and working through lockdown has been bad enough, without adding a brain injury into the mix Bushman. You've done well to start work so quickly.

My long term memory seems to be intact too, but my short term memory isn't good at all - I keep alarms and reminders on my phone, and make copious lists.

I get the problem with not being able to talk as quickly as you speak. For me, I used to just go blank mid sentence.

You may find a neuropsychology assessment useful to work out exactly how your memory has been affected, what impact that has on daily life, and what might be the most useful strategies to take onboard to compensate.

My planning an organising abilities were affected, and are still problematic.

What part of your brain was affected by your bleed? A confusing complication of right side damage is a lack of self awareness of one's own difficulties.

A great book to read for the neuropsychologist point of view, and a good breakdown of the different ways our brains can be impacted and what sort of strategies can be helpful is Mindfulness and Stroke a personal story of managing brain injury by Jody Mardula and Frances Vaughan - her neuropsychologist- and particularly the second half written by Vaughan is the clearest explanation about the different impacts of brain injury and what to do about it, that I've read.

Hi Bushman1926,

As above posts, I think you should seek follow-up care/assessment and your GP should be able to sort this for you. My daughter had brain surgery to remove a blood clot near her brain (extradural haematoma) after falling and sustaining a traumatic brain injury and fractured skull. When she was discharged from hospital she was in the care of a multi disciplinary team who allocated her a support worker who she saw weekly - a plan of goals for her to work towards was set up and she had appointments with the brain injury consultant. She has now been discharged and is managing well. I hope you get the support you need. Best of luck to you.

PS to my above post, in relation to your memory there are tests that can be carried out to assess how your memory is performing. My daughter underwent these tests with a psychologist and they showed she is no longer able to retain information the way she used to - instead she retains information in chunks if that makes sense. After a year post-TBI it was confirmed by ENT that the tinnitus was permanent and she was given a hearing aid which acts like white noise, and information on how to manage the condition. Unfortunately the headaches are still present (3 years later) and again she has learned to manage these with painkillers and rest. I hope you find some relief.

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