Dear Suzy,

I am so sorry to hear of your ongoing problems with the side effects. I can empathize with how little the Docs can seem to care about getting to the bottom of some of these life altering problems and how hard it can be to find the right help.

I will divide my comments into 2 parts: first my theory on the direction that your surgical oncologist should be going in to figure out what is going on with your swallowing and second, my scenario which may help with the process of elimination.

My Theory: Since your swallowing problems appeared after the neck dissection, the possibility that a nerve was nicked or severed should be considered. For example the vagus nerve controls the action of the cricopharngeus muscle, (also known as the Upper Esophageal Sphincter, or UES) which is normally flexed and must be relaxed to facilitate swallowing. Of course there are lots of other nerves involved. Your surgeon should be forthcoming in helping with the testing necessary to determine if nerve damage during the neck dissection is indicated; after all, if medical practice in the UK is like it is in the US, you signed a complete release of liability before they proceeded with the neck dissection.

My Scenerio: I had tongue cancer which had metastasized to neck nodes on the right. Treatment was a partial glossectomy and right neck dissection followed 3 weeks later by 6 weeks of chemo radiation including Cisplatin and about 60 GY to oral cavity and both sides of neck. After surgery I was OK. During chemoradiation I lost the ability to swallow anything, taste anything or generate any saliva. I was on a feeding tube for 10 months. After 2 months of not being able to swallow they did a swallowing study where I attempted to swallow liquids and they observed with x-rays. The liquid seemed to be getting stuck at the UES. They concluded that the neck muscles that act to help pull the UES open through a connection involving the Adams Apple had been atrophied in the radiation treatment and had me doing neck and swallowing exercises. This went on for 2 months with no results. Finally I saw an ENT who specializes in esophagoscopy with a tube equipped with a video chip. The problem was immediately identified as a stricture, ( scare tissue) located just below the UES. Hence the reason for the misdiagnosis from the swallowing study.

A bogie dilation procedure was done to open the stricture. I have been able to swallow fine ever since. Unfortunately I have severe xerostomia and have not gained back much ability to taste. I get my nourishment from chocolate Ensures.

I saw on one of the other posts a reference to botox treatments but no explanation. My understanding is that botox reduces hypertonicity of the UES muscle. This may help if nerve damage is suspected. The downside is loss of protection from reflux.

I hope you find relief soon. If you want more info from me write directly to [email protected]

Sincerely,

Mike
age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09, biopsy got it all, praise God!