I am so sorry. So very very sorry for what your husband and you are going through. There seems to be a shortage of knowledgeable doctors out there, especially those who deal with head, neck, thyroid etc. I spoke to a "regular" oncologist once and told him he needed to brush up on thyroid cancer because it was the up and coming cancer. I never saw him again. Oncologists seem to be able to handle all cancers but those concerning the neck. I had a total thyroidectomy and neck dissection in 2012 with RAI treatment two months later. My life has never been the same. I suffered from laryngeal spasms which lock your throat. It took years before I found ONE ent who knew how to stop them. You breathe through your nose and swallow and it breaks the "lock" on your throat !! I have been spreading the word since. I now have a permanently paralyzed vocal cord nerve which for three months made me sound like Minnie Mouse until I accidentally found out that oxycodone relaxed the muscles in my throat and gave me my voice back. That was 11 years ago. I fight every month to get my 5mg 3x/day to take with meals so I can swallow. Doctors nowadays are know-it-all's who know nothing. I also have CLL leukemia. When I finally started meds for that it decreased my nodes everywhere but my throat, which enlarged !!! I have a hole in my heart. They wanted me to have it closed with a device. I, like it sounds like your husband does, scar badly inside my body. I said to the heart surgeon "what happens when my scar tissue starts covering the device and it gets heavier and heavier on my heart ? I've read what has to be done to get the device out. You end up taking part of the heart. Do I want the procedure? No. I'll live with the hole like I have for 68 years " Yet each doctor keeps pushing and pushing me. Unfortunately people don't listen to their bodies. We know them the best. When we are scared we turn to the "experts" expecting them to know what to do. My experience has been that they actually have no clue.
My advice, for what it's worth, is to take your husband to the Mayo Clinic or Johns Hopkins for evaluation. For some reason, and I've never been to either of them, I feel they are the best!
Once again I'm sorry for what they put your husband through. I am furious!!! I advocate so much for myself that I tell people just give me a prescription pad and I will take care of myself, ordering the right tests, labs etc.
Doctors have to stop "practicing" medicine and actually DO it!!