My son suffered 3 bleeds after an AVM erupted he then had a stroke. He has made a massive recovery but has been left with no swallow, this is a great distress to him as he is only young and wants to know when he will get his swallow back, has anybody got any information or experience with this. The speech and language team have discharged us saying there isn't anymore they can do



11 Replies

  • Jenny, can I ask how long ago was your son's stroke ? Cat x

  • It happened in May 2014

  • HI Jenny. I'm so sorry to hear about your son's condition. I have an AVM as well but mine is so far unruptured although it is monitored on a regular basis. I'm afraid I don't know the answer to your question though. Everyone is so different.

    Best wishes


  • Am very sorry to hear that your young son has had a ruptured AVM and also a stroke. It would be the the Drs and speech and language therapist involved with your son who would be able to evaluate the extent of damage to his brain and the likelihood of him regaining his speech. It does seem that if the speech and language therapists have discharged, him saying that there is no more they can do, that it is felt unlikely that his swallow reflex will improve. However, the remarkable does still sometimes happen. I am guessing that your son had exercises that he needed to do to try and improve his swallow. I would suggest he diligently carries on doing them every day as somewhere in the future he may experience some recovery. Not for sure but surely worth the effort to see. Has he had any counselling to help him adjust to his loss/change of ability?

  • Which SALT team was this at hospital? Or a community team, and how long since he was discharged?

    Hospital SALT can be somewhat pessimistic, in my experience. May well be worth contacting the local SALT team/GP and having another look.

    should add, that also I don't want to give false hope. it's unlikely to be good odds.

  • Thanks for all the comments, Daniel suffered the stroke when he was 6 he is now nearly 9. I'm just trying to find any help or experience (as a mum does) I'm hoping that over time he may get his swallow back as his brain is still young and it is still growing. He has had music therapy to help and lots of help from Alder Hey children's hospital.

    Thank you for your comments fingers crossed for the future


  • Young brains are certainly resilient, and brains do surprise in how they can come back.

  • Just to say that after a bleed 5 years ago I had a swallowing problem, but to a much lesser degree as I was able to eat with care. Now, apart from occasional hiccupping attacks, it has resolved itself.

    I suspect you're right in believing that your boy's youth should be a big bonus towards his progress, and I really believe that with continued exercises to keep the muscle-to-brain connections prompted he has every chance of recovery.

    Sincere best wishes for a breakthrough in your son's condition ; I really feel for you both Jenny. Cat x

  • Thanks Cat that's the first time I've heard someone regaining the ability to swallow, its given me that little bit of hope

    Jen x

  • Hi Jenny,

    My partner had a stroke years ago - took his speech ( v. slurry ) and swallowing ( choked often ). He was told that the part of his brain controlling this area had died. However, with speech therapy both were rapidly improved. I used to remind him to 'think' about swallowing, when eating and practice his 'speech' homework with him. Now I know all brain injuries are individual but since your son is still developing, I would not rule out some improvement in the future. Is he on NG or peg ?

    Angela x

  • He's Peg fed and even though we do exercise he says he cannot physically remember how to swallow

    Jen x

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