Trachostomised from severe stroke

Hi All,

My dad suffered a huge stroke in the brain stem on 11th April 2022 whilst living abroad. Fortunately, we were able to transfer him back to the UK after 2 months but unfortunately, he has weakness all over and has had a trache in for 2 months which is slowing down his recovery and opportunity to go to rehab. I’m conscious that all this time in hospital with limited physio is slowing down his recovery or potentially stopping him from recovering to what he could have done if intense rehab started earlier.

Whilst they try to wean him off the trache and close the hole he struggles to breathe. We are waiting for him to be put under general anesthetic so they can put a camera down to investigate why he is struggling. Has anyone got any experience with being on a trache as a result from a stroke? Communication is tough due to no vocals but he is miming but at the moment he spells sentences out using an alphabet chart.

He is very emotional and often has vivid dreams about crazy scenarios and they feel real to him, unsure if these are hallucinations?

I wanted to a paint a picture of my current experience and was hoping there was someone that could shed some reassurance if they have experienced similar?

@Sam2 welcome to the forum. Sorry to hear of your dad’s situation. Must be very difficult for you all. I don’t have anybexperience of a trache so can’t help there. I do however have a lot more vivid dreams since my stroke. Some are more nightmares and seem very real. I have heard a few people say they dream a lot more following their strokes. Heightened emotions are also very common post stroke.
I really hope they can work out why he’s struggling to come off the trache and that he can then start making some real progress.
Best wishes

Shwmae @Sam2, brain stem stroke is very serious but can be recovered from as I know people who have. It effects the very basic apparatus of the body such as breathing. In one respect his cerebrum and cerebellum are intact which is fantastic. On the downside a tracheostomy may be necessary to make sure his vital functions are not affected in an irreversible way. Reach out to other brain stem survivors, if you use Twitter, many are vocal on that platform.

My friend who had a brain stem stroke took five years to get to starting point of functionality. Everyone is different. He had his stroke at 36. Don’t be disheartened but be proactive and research, research, research … it doesn’t hurt to do so.

Morning @Sam2. I am very sorry to hear of yours and your Dad’s struggles. I had a midbrain stroke (part of the brain stem) last July which initially affected my swallowing but it gradually recovered and I did not need a tracheostomy. I cannot remember that time but I do recall weird dreams that were almost hallucination like in hospital related to being confined in bed and unable to move. I continue to have issues with right eye movement, balance, left sided weakness, but swallowing and speech are “normal”. I hope you can get some answers and they manage to resolve the trachi issue. Wishing you and your Dad strength to get through this, Julia x