Permanent dry mouth

I was treated for tonsil cancer 12 years ago. 6 weeks of radio and couple of sessions of chemo. Lost all my saliva glands which I had been previously made aware of. No problem until 7 years past then the trouble started. Without going into it too much, it turned out that the radiotherapy fried the top of my spine and has given me irreversible nerve damage. My eppiglotis and tongue are paralysed cus of nerve damage leaving me unable to ever eat or drink again. My mouth became very sore and a totally new level of uncomfortable life. Tried everything on the market. No good. Always asperating due to trying to moisten my mouth and fluids making it's way into lungs. I then came across a nasal douche bottle which aided me to squirt water into my mouth without losing it down my throat. Excellent. Problem is it's a tiny window of relief. So I purchased a small length of drinking water pipe, a hose to tap clamp, a reel of plumbers tape and made myself my own relief system. Using the lid and straw off the douche bottle inserted into the drinking water pipe and clamping it on the tap I now sit on the edge of the bath with my head over the sink and holding the douche top in my mouth I can happily enjoy the cold water flushing round my mouth for as long as I like. I havnt swallowed any water and not asperated once in the 3 months I've been using it. Unless you know how it feels to be burdened with these problems only you can imagine how much relief this can bring. I'm pretty sure this could be simplified but for now it's made a big difference in my life.

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    Hi Slimbob,

    A very warm welcome to our forum.

    I am so sorry to hear of all the trouble you've had as a result of your treatment, but I am glad to hear that you have managed to concoct a device that helps to moisten your mouth. It must be a tremendous relief to finally get something that helps your situation. Would you consider showing this to some of the companies who manufacture Medical devices? They might be able to refine this for general use, thereby giving relief to more people.

    Kind regards,

    Jolamine 

  • Hi Jolamine

    I'd be happy to. If you could send me a link or email address I can send you pictures of the device. It really has improved my quality of life. I've resently started to make my own tip tops with strong squash like lime, pineapple etc. Because my mouth is basically a hole in the front of my head now and only used for breathing I can rub the frozen tip top around my mouth and can taste again. Sounds daft to the average person but it's a huge thing for me. I then flush with my device without leaving a sticky mess in my mouth. So yes, let's try and do something for others in the same boat.

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    Hi Slimbob,

    I am not very up on which of these companies manufacture their own products, but I shall do a little digging and see what I can find out. It may take me a while to get back to you, but I will eventually. 

    I suffer from a dry mouth following 2 bouts of breast surgery. I am fortunate in that I can drink copiously and use ice, but I can only imagine how hard it has been for you and what a relief you must have got from this device. 

    It would be great to be able to help others who are in the same boat as you..

    Kind regards,

    Jolamine xx