My 23 yr old son had a bleed on the brain 6 weeks ago due to a ruptured AVM that we didn’t even know he had.
He had an operation 3 weeks ago to remove the AVM which went really well. The bleeding left him with right side weakness. Left us with such worry if he would walk again but his wonderful surgeon did say he has youth and fitness on his side. He started pyshio within a day of his op in hospital and has done remarkably well and three weeks on he is already walking with the aid of crutches but can
Guess I can finish my story this way by replying to my own post.
So my son had his op three weeks ago and recovered very well. He has been reffered for rehab so now awaiting a place.
We have not been told how the referral works as in does the referral get sent to several rehab centres? Who decides which one he goes to? Etc. I am going to have a chat with the ward matron today to see what I can find out.
As the very early days after a stroke are a crucial time for recovery it would be good to know how long the whole process takes. The consultant did mention that because he is so young he would be bumped up the waiting list as he can be worked on quite quickly and out of rehab in no time.
As a lot of you will know the waiting game is an emotional roller coaster for anyone but especially a young man who only started his career 6 months ago.
We did start doing exercises with him when he was bed bound at the beginning and still keeping that up now which has helped an awful lot. We are even looking at going down the private route for rehab if anyone has any experience or advice on this as we really are feeling desperate now.
Just to finish with his progress so far last Monday he couldn’t even lift his weak leg off the bed but had started to wriggle his toes that weekend. By Monday afternoon the pyshio had got him walking unaided on a zimmer frame and two days later walking on crutches. So it does look like his recovery in these early days will be quick, obviously has a very long way to go.
Anyway that’s our story, hope you guys can give us some valued advice.
Wow well done your son ! That’s a tough one to go through AVM at the age of 23. And strokes can happen at any age. I was going to add Qigong, Tai Chi or Yoga to your justified thirst for rehab exercises (but I’m 60 years old and while it’s ideal for me I don’t know for your son) Isometric exercises are also good. Just an idea I thought I’d put out there. Good luck
Answering your own questions is a damned good way to move forward and forward we must go.
Don’t let that stop you asking questions. If nothing else getting it out getting it said is one step towards making progress.
What you are going through has been done before. It begins as a wall of questions that don’t seem to have sure answers.
@Anna_Moderator will be able to give you some pointers that will give you direction.
In addition there are a lot of us who are regular visitors to this forum and are going through and have been through all this ourselves. We are willing and happy to listen, to share experiences, encourage and commiserate.
This can be a very useful asset which I heartily recommend.
Hi Lizzyg,
That sounds like amazing progress your son is making. Recovery does take a long time so his progress is truly remarkable. I can only speak for myself the rate of progress is variable sometimes it plateaus other times it’s exponential. There are good days and bad (isn’t life like that anyway?).
My own strokes were mild and isochemic and every persons post stroke journey individual but I think it fair to say your son has made an excellent start very encouraging.
Please keep posting I would like to hear how things are going and maybe he will post too when the time is right for that.
Welcome here btw. None of us wanted to ever be here but personally ive found everyone here incredible. And so much help. Thanks for posting and sharing with us.
Indeed, the brain and body has a bit more buoyancy in yoof, not invincible of course and relative to one’s constitution. He’ll probably still want to rest a lot, the brain is in spontaneous repair for about six months. There will be lots of good advice here about physio, I sort of mucked through physio as best I could manage under lockdown, but I will say that while you are concentrating on physio, also keep a check on the psychological. This is often overlooked and can impact a stroke survivor years ahead after rehabilitation has lessened. At his age his brain is still developing naturally and there is also plasticity to factor in, so these are cognitive benefits.
Hi @LizzyG & welcome to the community. Your son sounds like he is doing remarkably well already. What has happenedmust have been a massive shock to you all.
It is difficult to answer the rehab questions as this will vary depending on area and availability in your area. I suspect they contact the most appropriate facility for someone’s needs first and then work their way through places if first choice has no availability etc.
Keep doing what you are doing with your son and he will continue to progress. Physio exercises can & should be done ourside of formal sessions. It’s a long journey with many ups and downs but well worth all the effort. Watch out for fatigue and ensure your son rests as well as exercises. Both are very important.
Welcome to the community, I’m sorry to hear about your sons stroke.
It sounds like he is doing incredibly at such an early stage and I hope some of the responses here have been helpful for you.
I’m sorry you’ve had trouble editing your post, as a new member you won’t be able to edit posts yet, but it’s great to see you persevered with it and got your story on here.
I hope you’ll find this community helpful for navigating through this difficult time, there is a wealth of knowledge here for you to tap into, so please ask any questions that come up along the way. if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Thank you so much for your lovely warm welcome and for your positive replies.
I have an update today and things seem to be moving very quickly as they are now saying he is too far advanced in his progress to need rehab and can possibly come home and have the neuro rehabilitation team come out to the house or go to the centre for appointments.
Naturally my son is over the moon as they will be assessing him tomorrow to decide but have said they do feel he is ready to come home. He did the stairs assessment this morning which he passed quite easily.
Hi @LizzyG, so sorry to hear about your son 23 is no age at all for this, the doctors are correct he does have youth and fitness on his side a younger brain will recover more readily and quickly. I’m glad hes getting movement back this is a great sign. I’m older and it was my arm and hand which were affected. Luckily a life long martial arts practitioner it took a wee bit but some input from them and constantly repeating my exercises and had good results.
In terms of rehab I live in Scotland so it was local health board and the team there said since i was working so well on my own to simply keep going but I know how lucky I was as my stroke was milder.
In the greater scheme of things hope that your son is given the best support to aid his recovery, support from his employer and most importantly he has a mum to both love and support him and make enough noise to get hum all the right support when needed. Good luck to both of you and all the very best in your son’s recovery journey.
Wow he is really doing well. It will be great if he can come straight home rather than go to rehab. The only assessment I had to do before being discharged home was the stairs assessment and make a slice of toast and cup of tea. I did it very badly but was considered ok to go home especially as I had someone who could help. To be fair being at home is much better than hospital or rehab so I was very happy to be discharged. It sounds like your son will do well at home. Fingers crossed it all goes smoothly. Just make sure they do arrange the rehab team to visit.
My son was discharged yesterday and safely in his own bed last night, bet he has loved it having not been disturbed throughout the night with nurses coming in to check blood pressure and temp, they were all great though and gave him so much care.
The discharge went smoothly, just one supply of meds which is just 4 days worth of anti seizure tablets as he was being weaned of them so just 4 days left.
The hospital have referred him to the Birmingham neuro team that’s come out to the house to work on getting him fit for work and getting back into anything he was doing before the bleed om the brain. If anyone has any experience with a community neuro team be great to hear of what is involved.
The first thing we did was drive him to his nans house on the way back from the hospital to suprise her as she didn’t know he was coming home. Then he wanted to walk home from there, she lived at the bottom of our long road and we live half way up, fair play to him he did it on the one crutch. Then arrived home and walked straight upstairs to see his room, well probably wanted to check his PlayStation was still there lol!.
Still hard to believe that a week ago on Monday he couldn’t even lift his leg up when lying on the hospital bed and now walking fairly long distances and climbing stairs.
The best thing ever last night was hearing him laughing his head off on his PlayStation with his mates, I missed that laugh so much over the last 6 weeks and cried many times over it.
He is still very weak in his right size so it is up to him now to build thet strength up, for someone who doesn’t exercise it’s going to be tough but I know he has realised it is what has helped him come this far with the help of his dad foing the exercises with him in hospital.
I will keep you all updated as you all seem such a great bunch and understand what we have been through and have yet still to deal with. X
