Scar tissue in throat caused by radiation and chemo treatment

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!!

THANK YOU SO MUCH for the tip on how to stop the spasms of the larynx!!! When they happen it's so terrifying as I cannot catch a breath except very very slowly thru my nose with my chin down on my chest.
Now plz. turn me on to what to do about the very very annoying tickle, itch in the throat that renders me to cough uncontrollably and no amount of liquids stops it. Comes and goes as it pleases.
Past: Esophageal cancer & removal of it: 2019
Present / current: Throat cancer (next to but not the larynx). Daily radiation, weekly chemo treatments just recently finished.

THANK YOU SO MUCH for the tip on how to stop the spasms of the larynx!!! When they happen it's so terrifying as I cannot catch a breath except very very slowly thru my nose with my chin down on my chest.
Now plz. turn me on to what to do about the very very annoying tickle, itch in the throat that renders me to cough uncontrollably and no amount of liquids stops it. Comes and goes as it pleases.
Past: Esophageal cancer & removal of it: 2019
Present / current: Throat cancer (next to but not the larynx). Daily radiation, weekly chemo treatments just recently finished.

I had some scar tissue after chem/radiation/major surgery for Stage 4 esophageal cancer. During my recovery, I had my esophagus stretched under sedation. During 1 of the stretchings, the doctor broke thru the scar tissue and my swallowing was much better.

So sorry to hear what you and your husband are going through! I wonder how he's doing by now. I've found that even though I ask questions, many times the answer is a glum stare, a shrug, or simply, this is one of the long-term effects of radiation treatment. It begins to feel like Drs. treat what they can and they they can be done--they don't have to deal with the aftermath, which is ongoing and terrible.

I had stage 4 esophageal cancer as well. I'm suffering from scar tissue issues and have been living with a trach for 6 months.My doctor has told me it's permanent...without even suggesting any alternatives. I also have a feeding tube and am currently only allowed thick liquidy substances.

I have been reading about oesophagus stretching. Is it on-going process? What has it been like for you?

I am not going to throw in the towel until I have explored other options. I don't believe any doctor has the ability to dictate an absolute.

That's what I have noticed. They have all these tools to fight cancer, but not much to deal with the aftermath of the treatment.

I am well aware of the shoulder shrug and blank stare when asked about side affects.

@lori57216, has the annoying tickle diminished since finishing treatment?

I had stage 4 esophageal cancer as well. I'm suffering from scar tissue issues and have been living with a trach for 6 months.My doctor has told me it's permanent...without even suggesting any alternatives. I also have a feeding tube and am currently only allowed thick liquidy substances.

I have been reading about oesophagus stretching. Is it on-going process? What has it been like for you?

I am not going to throw in the towel until I have explored other options. I don't believe any doctor has the ability to dictate an absolute.

THANK YOU SO MUCH for the tip on how to stop the spasms of the larynx!!! When they happen it's so terrifying as I cannot catch a breath except very very slowly thru my nose with my chin down on my chest.
Now plz. turn me on to what to do about the very very annoying tickle, itch in the throat that renders me to cough uncontrollably and no amount of liquids stops it. Comes and goes as it pleases.
Past: Esophageal cancer & removal of it: 2019
Present / current: Throat cancer (next to but not the larynx). Daily radiation, weekly chemo treatments just recently finished.