rehab is worrying and exhausting

[Ruri2712]

My partner, Stuart, had an oesophagectomy on 14 November 24. Since then he has not been able to swallow due to how high up the surgery took place. He had a video last week to check if he could swallow safely but sadly not. The response from the therapist that there was “an absence of swallowing exercises.” She asked what exercises he had been given but she said these were of no use. (The video happened at a hospital which was not the one where he had his operation) So different speech and language therapy dept. He asked which ones he should be doing which she described saying she would email these to him, not received. Though he did have the names of them which I looked up and we followed the videos. These have now been confirmed by another speech and language department who he’ll see in a couple of weeks. Needless to say he’s becoming more and more stressed and frustrated. And me too. I’m just hoping he’ll be able to swallow as I don’t think he could cope being gastric fed for the rest of his life. The therapist said these exercises were the only route to recovery of his swallowing.

[liz_crisp]

Hi Ruri, I have not got any idea on exercises or swallowing, but you seem to be with different hospitals. Do you have a dedicated CNS who could help you? Recovery is slow after this op so don't give up hope. Good luck lizzy

[Ruri2712 in reply to liz_crisp]

Thank you Lizzy for replying and your encouragement. Anne

[purplekey]

Hi I too had a high up join ie in my neck. On my first camera assessment on my vial cords ( 3 months after the op) it was not safe for me to swallow as my vocal cords weren’t closing, but on my 2nd camera (a week later) it was. I still was an in patient then so the therapists visited me. I wasn’t given any exercises it just improved on its own. After that it was a slow process to get back to eating starting with yogurts and custard etc. but 4 years on I can eat most things. I had the gastric tube out after 9 months. Hope this helps you feel more optimistic about the situation. Good luck to you both.

[Ruri2712 in reply to purplekey]

Hi, thank you for your reply. He’s now been referred to ENT for Botox to his vocal cord as it’s now 3 months since the operation. The surgeon had hoped that this area would have healed enough for this not to be an issue. I wonder if he was doing the first set of exercises correctly as he only had one session with speech and language in hospital. I think he should have had another session before he left hospital just to reinforce. I remember his ward consultant said SALT had to be strong on his rehabilitation but I don’t think they were. Anyway we are where we are and just have to get on with it. He has a session with SALT on Wednesday which I’ll attend with him. Hope you’re well.