Well I was back in Boston today to see the speech pathologist at MGH I was referred to by the ENT at Mass Eye and Ear who did a modified barium swallow on me (I had had another one of these locally in Ithaca about 6 mos ago). It was a VERY worthwhile visit (thank you again, Cathy G, for putting me in touch with the ENT who referred me to her), although somehwat surprising.

I had been under the impression that I would find out my epiglottis was shortened (and it is--almost definitely due to radiation she said) and maybe I was having problems swallowing because of that, as well as lymphedema on the base of tongue, restricted range of motion in my upper tongue, etc. and that she would then talk to me about what I needed to do in terms of exercises that could help and would probably tell me what I had heard from the ENT which was that even with exercise I wouldn't get most of my swallowing function back.

Instead, during the barium swallow, she saw areas of my esophagus that had strictures--actually three areas and said that basically I am NOT doing anything wrong in terms of not having tried to swallow enough, or not doing the right exercises, but, basically, I can only swallow small sips of liquid because that's all there's an opening for! Everything else backs up like stuff you try to rinse down a clogged drain and then I have problmes with possibly inhaling it. She said that exercises won't really do me much good as long as this is the case--I need surgery to widen the espohagus where these strictures are.

Apparently this surgery has some risk associated with it--of actually puncturing the esophagus. They actually won't do it at MEEI because of that, but she referred me to a head and neck surgeon at Dana Farber who does do it. I just looked her up on the web and realized that she is the ENT that consulted on my second opinion at Dana Farber over a year ago. So I will call her office tommorrow and try to set up an appointment for a consult. It looks like the surgery probably wouldn'thappen until my Spring semester is over anyway, which is good, and I may have to have it more than once, which is not good but I'll do what I have to. This speech pathologist said that although there's some risk, it is effective.

I am actually relieved in an odd way to know there's surgery that might fix a lot of the swallowing problem. I may still need swallowing work with a speech pathologist after the widening, but the picture seems a little more hopeful to me (even though the risk part is scary).

There's one more thing I wanted to bring up here too which is she said that she has seen MORE of this type of problem with people who have had IMRT. Apparently if the IMRT is not programmed carefully to avoid the esophagus, it is more likely to cause this sort of damage. She said she'd be willing to write a note about this to my RO--and I may take her up on tnhat offer, or I may see if my local ENT can have a word with rad medicine at the hospital once he gets her report.

I know there are probably some folks thinking "I told you so" because I got my IMRT locally but, even though it was local, the radiation oncologist was from Roswell Park--a CCC--and the rad medicine facility I was treated at is a satellite of Roswell Park--so it really wasn't all that clear I wasn't getting top notch care and, given that I'm clearly not the first patient this speech pathologist has seen with exactly this problem from IMRT, I get the sense this may be a problem for a lot of radiation plans. It is certianly an argument for, if you can, going to one of the real top top places for treatment with an RO that has real expertise in IMRT for head and neck patients.

Anyway, it looks like there's more surgery for me down the road and that it might have some scary risks associated but I'm hopeful (I think that's just my nature though).

Nelie