Laryngectomy and hearing loss from cistplatin chemo

Hi Benllech 

I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier to spot.

While you're waiting for replies, it would be great if you could pop something about your husband's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Benllech, 

I had a laryngectomy in April, followed by six weeks of radiotherapy five days a week, and two two day sessions of chemotherapy with cistplatin during those six weeks. I finished the six weeks nearly three weeks ago.

My hearing has deteriorated, but it had already deteriorated due to nerves being cut during the operation. Having said that, it's not too bad - it's more muffled hearing rather than deafness. The best way I can describe it is, it's like having a thick scarf round my ears, and if I could just get my ears above the level of the scarf, I would be able to hear normally. 

I don't know if this helps, but at least you've now heard another person's experience. Like your husband, I am seriously struggling with the laryngectomy, lack of voice, which I was supposed to have as I had the valve fitted during the operation, and I've still not had an explanation for, even although I've asked a number of times. It's like questioning politicians! I've also been left with a tiny stoma with the airway behind it tapering and getting narrower still. This leaves me struggling to breathe and choking when I cough up thick mucous. I'm told there's nothing can be done to enlarge the stoma. So if anyone has experience of either of these things, I'd love to hear from you. 

In the meantime Benllech, I hope your husband makes a good recovery, and in time can come to terms with his new life. 

Veron