Post stroke follow up

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1

Good morning all, I had my stroke at the end of May and just wanted to get an idea on the timescales for follow up assessments so thought I would ask my fellow survivors of their experiences. I had a CT scan on the day I was admitted and also a Doppler scan on my caratoid arteries in my neck. As I was away from home  I was discharged in to the care of my GP and local hospital after a couple of days. I eventually saw the consultant at my local hospital in August but he didn’t have my records! He said he would review my notes and arrange another appointment which hasn’t happened despite several requests from my GP. I did eventually get called in to have the 24 hr monitor fitted and also the ultrasound scan of my heart, after several prompts - this was in October and still no communication. 

My GP requested an MRI scan as after several weeks of making good progress and losing 28Ibs I started to go down hill with the symptoms of my initial stroke seeming to come back even worse! This request was knocked back by the hospital as apparently GPS aren’t allowed to request this. The silence remains deafening and does little to help with my anxiety and insomnia. It’s getting to the point where I feel like presenting myself at A & E every day until someone tells me what the hell is going on. Thanks.

Danny

2

Dear Danny

Sorry to learn of your being bitten by a stroke.

The follow up by the NHS is hopeless. Put bluntly, the NHS can not fund nor deal with the long long recovery of many stroke survivors. However, you really have been treated poorly. You dont need that on top of a stroke.

Everyone is different, but a general idea is;

Day 1. Stroking

Week 1. Medically cleared and able to leave hospital.

About week 6. Consultant outpatients.

About month 6. NHS check up and signed off.

This applies to the likes of you and me who have had pretty mild outcomes. Others are far worse and spend months in hospital.

The MRi scan will search for the damage in your brain. Not sure how this will help the doctors at this stage.

What is probably more important is looking at ways to ensure you will not have another stroke. I trust you have nedication prescribed.

I wonder if you have a stroke co ordinator from the stroke association ? I think this would help you to ensure you are being treated correctly. Not available everywhere.

And/or any local stroke groups. The staff at your GPs should help you with this.

Hospitals vary a lot.

What I found was useless was to present myself at GPs or walk in centre and me trying to say I have had a stroke and now my face is swollen.

What works better is .... I have insomnia can you help please. Then ....I have anxiety, can you find therapy for me.

Doctor will then look at your records and adjust his suggestions to stroke related.

If your records are lost, then you need to get your GPs surgery to find them as a matter of some urgency. You might wish to be quite insistent on this. Mine were lost some years ago and NHS staff needed to locate the lost files on the computer systems. Something about a spline.

So A&E is unlikely to be the right place. Local stroke groups should be better, probably the stroke association. The SA doesnt cover my area. But there are local voluntary groups that do provide alternative care. Mine is jolly good. I am in deepest rural Essex.

You are at a horrible stage in your recovery. So many ailments. The cognitive stuff is the worst. Are you anxious through lack of sleep or is it the other way round.etc etc

Things do ease in time.

Hope the cavalry will arrive on this site soon.

Colin

 

 

 

 

3

Hi Colin, Thanks for your wise words. I do try and remember that there are lots of people in much worse situations. I think the biggest issue for me is the poor communication between the various departments involved. I think I’m going through my “Victor Meldrew” stage and do feel sympathy for my fairly young GP as I speak my mind. I do wander how other survivors,who may not be as forthright as myself, get along.

In terms of anxiety;I think the fact that I am back at work in the place where it happened, a fair distance from home doesn’t help. It tends to come and go but on a bad day it’s a constant battle in my head which is all consuming. I suspect that some of the medication I’m on may not help. I tend to wake up around 1 or 2 a.m and then can’t get back to sleep.It’s a bit of a vicious circle - lack of sleep makes me tired and anxious and then the anxiety prevents me going back to sleep. I never have a problem getting to sleep initially though as I am so knackered after a days work! I have a 150 mile drive to work on a Monday and the same back on a Friday which doesn’t help the situation. I spend the weekends recovering from the previous week and dreading the following one,too tired to do much. Hopefully I will go down to a 3 day week in the new year and have some time for myself.

Best Wishes

Danny

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Dear Danny

I dont think the NHS communicates within its various parts. I also observe that our recovery is down to us. Good advice and good support helps, but its down to us to formulate our own recovery.

Have you had counselling since the stroke ? The fear of the place where the stroke happened, that fear should have faded away by now. I had counselling and the main area was post traumatic stress disorder. I never gave PTSD a thought, but sure enough the shock of stroking had addled my thoughts. The counsellor was crucial to help me recover. Has to be a stroke specialist. Mine was free on the NHS. She came to my home. 

Anxiety is a pain. And you wonder if the medication is partly to blame. A difficult area. I am adamant that we need sufficient sleep. Took me months to work out I need 7.5hrs then work out that retirng at 11.20 is right for me. Then I get a decent nights sleep. But any stress and the sleep fails. I get up, make a bed on the settee and watch TV. That gets me off to sleep. It is a disturbed nights sleep but better than no sleep.

My limit of driving is 30 minutes. My concentration then fails. I am in awe that you can do 150 miles. I have a second home about 80 miles away and I can not make the journey. Havent seen my second home for three years. My adult son lives there, in our large suburban family home .

If you can go three days it might improve things no end. I reckon its important to get the work reduction, sooner rather than later.

Grey day here today. I am listening to football on the radio. I follow York City, which is probably stressful this year ! 

Best wishes

Colin

5

For me the priority was home recovery. I was glad about that,Nothing muck happened for 6 weeks or so, they can’t do much as to a certain extent the body and patient has to get themselves better, through rehab. Keeping blood pressure down is key using the prescribed drugs. Light exercise, reading, brain training and other hobbies. But do not over do it. Lots of rest. 

Then you have to pester. If you know your consultants name phone their secretary and get them to arrange an appointment. 

You should have vocational therapy available. There is support but you need to push for it, your gp should know.

 

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Hi Danny   --  this catalogue of events just makes me feel so sad, and I know your situation isn't unique.  Many SSs feel very let down by the system, just at the time when they do not have the energy for a battle, and need support and reassurance.  I note that Colin has been chatting with you, giving you advice; he has a lot of experience and knows just what to say in these situations, so hopefully his comments have given the confidence to take some next steps.  

Take care, stay strong, best wishes, Nic 

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Colin - you are the person leading the cavalry charge!!  Saddle up, hi ho Silver, away ...  you are very qualified to offer words of support, common sense and reassurance.  Your message is simple and memorable and has helped many people coping with life post-stroke.  

Hope your team won ?

8

Hi Danny

I would suggest you ring your consultants secretary at the stroke unit, explain and I am sure they will fit you in for an appointment.  Really stress that you need an appt asap. Good Luck.

Wendy

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Thank you for your compliments. Amazingly my team did win. A rare event of late. York 2 FC United of Manchester 0.

 

10

Happy days!  

Is that the same as Manchester United?  Pre-stroke, M.U. was my husband's team, but he tends to lack interest these days, (suits me actually!)  He's recovering from an inner ear infection, which has been rather scary, as the lack of balance, tiredness etc reminds me of earlier days after stroke. (I'm watching him like a hawk, but he hasn't noticed fortunately, blissfully unaware of my hyper-vigilance!!)  I think it takes him longer to recover since he had the stroke, he was previously able to bounce back fairly quickly - yet another legacy ?

Have a good evening

11

Are now there is a long explanation. Machester United are the big club with more money than sense and they are in the top division. Some years ago a group of fans and players became disillusioned with the club being taken over by Americans so they formed their own club FC United of Machester. They are in division six and low down that lowly division. My York City used to be around division 3 but have (mainly since I have been following them closely ) crashed downwards to division six. To be fair, FC United of MAnchester have worked their way up from about division ten which is impressive.

Hubby might get the gist of this.

Ears do seem a very common source of difficulty post stroke. I have all sorts of problems and it drives me up the wall. How people cope with full time tinnitus I dont know. I get whistling etc for a few hours, usually when I lie down

And yes we get layed low by a cold or anything else. I am sure there is good news in here somewhere but I cant lever it out right now. Nope. Stroke is the pits. 

Colin

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Hello Danny,

What a horrible time you’re having. The others have given sound advice and at least you get some support on this Forum. I’ve just read out your post to my husband and he suggests it might be helpful to contact PALS for advice. I think that this is the link.

https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

we hope you have a more relaxing weekend and are able to build up stamina for work next week. Take care, Veronica and John 

13

Hi Colin - thanks for the potted history, I've just noticed that M.U. are playing NOW!!  I'm afraid I have the brain power of a garden snail, and know nothing about football.

Hubby says he thinks he experiences some tinitus, but I'm not sure that it's too frequent, thankfully, as we have a friend who suffers almost constantly, and it's a miserable thing.  

Please don't tell JJM, but I attempted to bake a c & w cake this morning - disaster - it looks likes two digestive biscuits sandwiched together, I'm such a failure when it comes to baking ?  

xx

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Tell the truth you didn't want to show the rest of us up. Being Mary Berry's stunt double. ???? xx

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Here's one I made earlier ...

 

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Looks so yummy! And beautifully decorated well done.  smileyyes

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But is it gluten free? Can’t chomp on it if not! ?

18

I'm a fraud, I made that cake ages ago, I daren't show you today's pathetic looking apology of a cake!  However ... I may be pants at making cakes, but hubby just said he fancied pancakes, so I've had to pop my pinny back on and rustle up a plate of pancakes!!  No rest for the wicked ??

19

ooooh, I've messed up, sorry, it's full on flour.  I'll have to research some gluten free recipes ?

20

Poor you!  It's what becomes of being a culinary genius ?‍??‍?

Hope you managed to see Strictly in between all the cooking.  Just when I thought it couldn't get any better and it does ?? xx