Please note this is only what has happened in my individual case, which was quite extreme. All our cancers and surgeries are very different but if it gives anyone with this problem a way forward, either by keep pursuing an answer or just mentally accepting what it is, then I reckon it’s worth a read. It would’ve certainly helped me to have some information like this after my surgery.
Last week I went to see an Orthopaedic/Trauma consultant regarding damage to my Spinal Accessory Nerve now 2 years after my neck dissection surgery. (Unfortunately it’s permanently damaged.) But what a fantastic knowledgable consultant, I was in there 45 mins! I didn’t feel rushed and he really took the time to understand what I’d been through and explain clearly what had happened, without sugar coating it. Rare nowadays.
So I thought I’d also pick his brain re the neck strangling feeling. He was fascinated by my neck lol (and even called his registrar in who was about to take his exams!) as it’s clearly, visibly tight against my windpipe. For the first time instead of just being told “oh it’s just tight, or that it might get better with time...etc” (which gave me hope but then only continual disappointment and frustration as it didn’t) he explained it to me in a way I could understand and accept.
He showed me clearly, with diagrammatic comparison to the internal structures of a “normal” neck that strategic (cancerous) muscle tissue has obviously had to be removed from supporting muscles either side. This has caused the neck tissue in between to be less supported and shrink back against my windpipe. Nothing to be done about it unfortunately. (He’s also asked for my actual surgery notes to be forwarded to him, so we can look at them together.)
This made complete sense to me. I am a person that deals far better with facts, rather than woolly possibilities. For me, I needed to hear it from a professional rather than endlessly googling and guessing what had happened. And now I can get on with my continuing process of accepting what I’ve been left with as my “new normal” (not easy for any of us) but in the clear understanding of it being unavoidable to save my life.
Thanks for reading.
Amanda.
Amanda that is a really great post to explain what can and can’t be normal and what patients might have to accept. Being fobbed off with a might improve scenario is so much worse than a proper explanation explaining the likely outcome. I’m glad you found the right person
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I’m actually going to use yours and mine own experience to compose a letter
That’s a very good and ambitious move. If there is anything I can do to support you please ask. Please let us know what happens if you can.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
It’s gone out to them all
This is really important. Fixing us is one thing but if we are broken afterwards we get little help.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
