A follow-up to my work on trying to regain swallowing ability. Last week I had both another swallowing test with my ENT and the speech pathologist that works with him here AND got an additional evlauation by an ENT in Boston that Cathy G. (thank you again Cathy) helped get me connected to, who only treats oral cancer patients, just to be sure that everything that could be done was being considered in terms of trying to get back to eating semi-normally.
The good news (which I don't take for granted, believe me) is everyone agrees there is no signs of recurrence.
Also good news is everyone agrees I sense it when things go down the trachea and cough hard to keep them from getting into my lungs, which gives me good protection against the worst effects of problems with aspiration.
The ENT and speech pathologist here, surprisingly to me, said my throat looked somehwat better (I don't know why this should surprise me so much, it has been 3 mos. since the last test, but I just feel like swallowing is just as hard as ever) but that there was still lots of swelling and there is an area in my throat (they said the name of the muscles/structures there but I forget it) that is more constricted than it should be where liquid that I swallow pools up then I have to cough it back out or it goes down the wrong way. They tried a swallow with pudding and that actually went down a little easier than the thin or thick liquids--less pooling in this spot in the throat, so I am now allowed to add pudding-textured stuff (had to be smooth, like plain yogurt) to the list of stuff I can try to swallow.
The speech pathologist referred me back to the speech pathologist at the hospital to work with him on a number of exercises that she thinks will help my muscle control and swallowing strength(not sure why this didn't happen before). My ENT suggested a surgery that would involve using an endoscope and stretching this area that is constrictd and causing the pooling as well as giving an injection of botox to a muscle there that would cause it to relax more.
The ENT in Boston didn't think that last idea (the surgery) would work all that well (unfortunately since I would gladly undergo more surgery if it would help me get back my swallowing ability) and he also referred me to a speech path. there I will make a trip back to see who works entirely with swallowing issues related to head and neck cancer treatment, to be sure I'm doing everything I can that might help.
Beyond that, though, this ENT in Boston pretty much agreed with what my ENT here has been telling me but he helped me understand a little better why I'm having so much trouble swallowing. It isn't one thing--it's a series of things.
1. I have restricted mobility of the front of my tongue. Some of this is because I'm just missing about 1/3 of my tongue but it means that I have difficulty forming food and liquid into a bolus, which is work that is normally done by the front of the tongue. (This can be improved through speech path swallowing exercises)
2. Even when I do manage to do that, and the liquid/food goes to the back of my tongue and gets sent down the throat, I have swelling in my throat that catches stuff where it shouldn't. (This may heal up more through time or may not--may always be there from the rad and chemo)
3. Even when stuff gets past the swelling, I have lymphedema at the base of my tongue so it is very swollen compared to a normal BOT and can't move the way it should to help stuff go past the epiglottis. This *might* be helped by lymphatic drainage massage or may be something that never goes away.
4. Aside from that, the muscles that move up in your throat which move the epiglottis down to cover the airway aren't working strongly. This can be helped by speech pathology exercises.
5. Aside from that, even if my epiglottis could move normally to cover my trachea, it appears that it is shortened--some of it was just worn away--from the radiation (although since no one did a test on me prior to treatment it is possible it was just congenitally short-- but unlikely) and this can't be fixed but will always pose some danger for aspiration.
So there you have it. The Boston ENT did say that as more people are getting concurrent chemo/rad treatment for oral cancer (which only became the norm a couple of years ago), they are seeing more swallowing problems following treatment. He didn't mention any signs that I was treated with an especially funky radiation plan or anything (which helps me feel better about choosing to go to the rad. facility here), it's just that radiation, especially combined with chemo, can cause some nasty permanent problems for some people.
He seemed to think that with lymphatic drainage massage to try to help the BOT swelling go down and work with speech pathology, I could improve my swallowing well enough that I can get off teh PEG tube eventually. But he said even with doing all the work I can do "you won't be happy with where you end up". I'm hoping that doesn't mean everything ahs to be the consistency of a shake for the rest of my life and that mayeb I can still hope to eat pasta with sauces, soft eggs, really well cooked veggies eventually. Even if I gett here though, I will still really miss the rest at times.
I miss salad. I miss garlic bread. I miss ham and cheese sandwiches. I miss blueberry pie. I miss plums. Oh I could go on and on....but I have to go grind up my morning pills and pour Jevity down my tube