Brian,
This is a great idea and I would like to add a thought. It is nearly impossible to find ANYTHING for after-care issues for total glossectomy and near total glossectomy patients. The issues surrounding loss of tongue mobility are not appreciated, even by many folks who have had some form of H&N cancer. This is not to detratct from their issues, just that you have to have had a total or near total glossectomy to understand the problems involved. We are probably a very small subgroup of H&N cancer survivors that have special needs and find very few answers.
The loss of one's tongue mobility is a MAJOR quality of life debilitator. Speech is severely restricted, even with a free flap reconstruction by fine surgeons and a palatal drop mouth prosthesis that I have. Swallow therapists are generally unprepared to fully understand the special needs. Mine was helpful in having me use a syringe to "dump" fluids and pastes to the back of my mouth for swallowing. After a year of therapy, I find I can swallow this way. I have read some posts where total glossectomy patients eat more solid foods but I haven't a clue how the food gets to the back of the mouth with NO tongue mobility. There are NO books that I can find to help in this vital area. I still require a PEG tube for the majority of my nutrition after 2 years! I also had two esophagus stretching that helped swallowing.
As I understand it and the way my ENT explained it is when this type of glossectomy is done, the flap is attached to the floor of the mouth in front. At least that is the way I understand it and that the flap must always stay in this position which doesn't permit motion. Yet I read some articles that suggest that some mobility may be possible even where a total or near total glossectomy is done. CANNOT GET ANY ANSWERS.
Other areas: Cleaning of tongue, dental issues.
I am more fortunate than most in that I am still cancer free and I was old enough when I contracted this cancer to where I could retire even though I would still be working if I could because I liked it.
I can't imagine having condition this at a younger age where one still has responsibilities to work and care for a family. So I feel I must bring this subject up for their sake more than my own. Thanks for the great work you do and all the folks on this forum. If any of my experiences can help, I'll be glad to do what I can.
Jim Haucke
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SCC rt lat tongue dx 9/03,surg 11/03 (T2N0M0);recur BOT &floor of mouth dx 1/04,surg 2/04 subtotal glossectomy, pharngectomy, forearm free flap,neck dissection, trach & PEG 12 hrs surg (T4N0M0), 36 rads 3-5/04; cellulitis infection 6/04 and 10/04, start therapy Nov 04 complete 12/05
