3rd Stroke Lucky

[94ER47]

Good Afternoon Everyone,

Just joined and thought an introduction was in order. My name is Steve and as the thread title suggests this is my 3rd stroke.
1st was a TIA in 2008, the second (Lacuna infarct) was in December 2015 and the latest episode was a Brain Stem Stroke in August this year.

Thinking of changing my seven year itch over to seven year stroke in my case!

The current medical reasoning for all 3 strokes is small vessel disease caused by T1 diabetes (38 years), high(ish) BP and unfortunate luck.

This latest one has had more of an impact than the previous 2 strokes and whilst it is relatively recent event, the HCP don’t seem too concerned, I am looking for hints and tips to either help in my recovery journey or whether the symptoms I’m currently experiencing will last for a long time and just adapt.

Look forward to joining in with the community, plus any exchange of experiences with those who have also suffered from a Brain Stem Stroke.
Steve

[John_Jeff_Maynard]

Welcome Steve. I have had two strokes…a big one in 2016 and a small one in 2020.I had wonderful support after stroke one from my health authority and exercised all I could. I was also told to utilise my weak hand and arm as much as possible. I go to three exercises classes a week for over 60s and try as hard as I can to be as ‘normal’ as I can. Grit and determination help enormously, as does a sense of humour. Rest when you need to, but keep working at it.

[Mrs5K]

@94ER47 welcome Steve, you’ve sure been through it. You haven’t said what deficits you have but have you been referred for any physio, speech & language therapy etc? Hopefully you are also on some treatment.

I used the Internet to find exercises to fill in the gaps between NHS sessions & also participated in the Stroke Association 4 week exercise programme.

https://mystrokeguide.com/asol

Often symptoms will get better over time with hard work & determination but you will also need to rest too as your brain will need to repair/rewire.

This is a great place to ask questions & get advice &we look forward to hearing more from you.

Best wishes in your recovery.

Ann

[JuliaH]

Hello Steve @94ER47. I had a midbrain infarct (part of the brain stem) July 21. Have regained much of loss of movement on affected side, mostly within first few months. Vision (eye movement) still affected as cranial nerve nuclei are in that area, so have had to adapt. At least swallowing/ speech recovered very quickly. All strokes are different even in a similar region though. There has been continuing improvement and I hope this and the forum can give you hope. You are a stroke veteran and should be giving us the advice! You are still here and trying to get on with it👍All the best, Julia

[94ER47]

Many Thanks for your welcomes & replies @JuliaH @John_Jeff_Maynard @Mrs5K much appreciated.

Don’t want to bore you with all the details of my recent engagement with strokes, but one thing I failed to mention and may prove interesting to some, that at the time it happened, I was on holiday in France on the Dordogne with my wife, daughter, SIL, Grandchildren x2 and dog in our motorhome.

After symptoms started, I realised what was occurring immediately and my wife & daughter accompanied me to the local French hospital A&E.

Great service from them with ECG, CT scan and usual physical tests (raise arms, touch nose, smile, puff cheeks etc etc) which I passed with flying colours, I was at a loss as to what was causing loss of sensation down the whole left side of my body from head to toe. So we returned to our campsite.

Another thing I should also mention is that it was warm, in fact very hot indeed and 3 weeks prior to our journey to France I discovered that I had a Scaphoid Fracture and my left wrist was in a cast from knuckles to just below the elbow.

As the symptoms were still present and nothing shown up at the A&E earlier, I self diagnosed that the heat had swollen my left arm under the cast, trapped a nerve thus causing the tingling, numbness, weakness in my left side. So I decided a personal intervention would solve this.

My one tip for other SS if you have read this far, do not try cutting a cast off your left arm with a pair of kitchen scissors the same day you suffer a stroke. The scissors break.

The more effective method is using a Leatherman penknife saw blade, this only takes 2 hours!

Long story shortened, we travelled back to the UK went straight to local A&E who performed exact same tests as French hospital with identical results, a couple of days later I was referred to the area TIA clinic where a MRI was done and the small stroke in the right pons was discovered.

Once again, thank you for your time and kind welcome, I have no doubt that I will have a 1001 more questions to ask in the future.
Steve

[Ingo66]

Hi @94ER47 Steve, Wow you’ve certainly been on a bit of an adventure haven’t you?
Welcome to the forum, I hope you’ll find it a nice place to talk to people who have a good understanding of some of the things you’re going through

I found it really useful reading through lots of the post when I first joined.

Feel free to ask any questions, it is surprising how often someone on here has some useful tips.

Good luck with your recovery.

[Mrs5K]

@94ER47 certainly sounds like you’ve been on a bit of a journey. The cast & scissors made me smile. I can imagine that’d be hard without having had a stroke. reminded me of trying to work after I’d had my stroke (although I didn’t know at that point) and not being able to work out why nothing made any sense and all I was typing was complete gobbledygook.
Best wishes.
Ann

[Rups]

Bore da Steve,

I have a friend who had a brain stem stroke at 38, you can listen to his story here. After five years, he has made a very good recovery and now works in stroke survivor support. The stroke I had was just above your last one, mine in the cerebellum. Sorry to hear you’ve been struck thrice, I had six TIAs before the stroke, so had my brain blitzed but managed to resurface, breathing and coherent. I’ve heard of small blood vessel disease, but don’t know enough about it really.

We all need to adapt but to an extent we are in control of our recovery, how long it takes, is the length of a piece of string. I’m two years post, and make 1-2% improvements at a time, experience relapses, and also reach milestones. Ive got a five year plan before I ease off my enthusiasm for recovery therapy and rehabilitation. After that, I will prioritise other things, and hope for the best.

[KGB]

Hi Steve! @94ER47

Welcome and how nice to meet a fellow ‘3 stroker’!!! You are the first person I’ve spoken to who has had 3 like me - I think…

Good luck with everything and please keep in touch!

Kieran

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