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'm sorry to say I have no clue as sometimes I suffer from the same issue. Maybe an allergic reaction to something in the bed? Sometimes also a cough medicine might help tame it. I do hope you find some relief ❤️❤️
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.
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.
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.
I've got throat cancer and multiple myeloma since 2019. I had radiation, chemp, neck dissection, more chemo, more radiation and immunotherapy. I had a feeding tube for 15 months and esophagus stretching after my frst round of radiation/chemo-about 8 gtimes-it helped, but I still had the feeding tube. The second round of radiation/chemo/Keytruda in
2021 didn't work as needed . My breathing was labored and I needed a trache. I had and have the same question about its permanence. I've accepted it-I can't swim, but don't need a CPAP any more either. It is a distinguishing cosmetic feature-good and bad. Trache maintenance isn't as burdensome as it may seem, but neither is my breathing. I can run up steps, walk long distances, golf and do anything on land. let me know if yu want to know more of my experiencce. The thought of a trache revolted me at first, but that's what it took-end of story.
I’ve become so frustrated with my medical care. Suffering long term side effects after head and neck surgeries and radiation. Experiencing continued shoulder shrugs on how to treat or manage this
except for PT which I am doing. What I am finding through internet research that there are other treatments to at least safely try. More shoulder shrugs when I bring the topics up. Medical centers need to think about a patient long term and what happens to them down the road.. I’m more then a dollar sign for initial surgery and radiation treatment. Angry
No Colleen they haven't. I'm sorry for the delay in my response to your question as for some reason I'm just seeing this now.
I have my first scans after tx the end of Sept. I'm rather scared we didn't get all the cancer as the reason for the nasal cavity scope to check in the first place was because of the nagging throat itching.......... and it persists................
I did notice that one of our esteemed members of this board mentioned perhaps an allergic reaction to my bed.............. don't matter where I am. I mentioned it kept me up at night because it's annoying in the first place and then to have it wake me up and keep me awake is enough to make me say bad words.
Lori,
Still trying to live the dream.......... as we all should 😉
the dreams have just changed.
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.
So far I've had 5 stretchings since my Stage 4 esophageal surgery. They are very helpful. At first the benefit of being able to swallow easier wasn't too great but got much better with each stretching. I actually went 9 months between stretchings recently. It's a godsend. Done under light sedation (Propofol usually) so recovery is good. I hope you can find alternatives to the trach - living with a trach is not good. I had one for the 2 mo. I was in a coma after my surgery. I've dealt with many health issues in my life and I am always open to new ideas and new doctors if need be. I need docs who think outside the box & really listen to your needs. It could mean seeing other doctors till you get resolutions. I wish you good luck with that. It is doable!
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.
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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.
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1 ReactionI'm sorry to say I have no clue as sometimes I suffer from the same issue. Maybe an allergic reaction to something in the bed? Sometimes also a cough medicine might help tame it. I do hope you find some relief ❤️❤️
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1 Reaction@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.
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2 ReactionsThat'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.
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2 ReactionsI've got throat cancer and multiple myeloma since 2019. I had radiation, chemp, neck dissection, more chemo, more radiation and immunotherapy. I had a feeding tube for 15 months and esophagus stretching after my frst round of radiation/chemo-about 8 gtimes-it helped, but I still had the feeding tube. The second round of radiation/chemo/Keytruda in
2021 didn't work as needed . My breathing was labored and I needed a trache. I had and have the same question about its permanence. I've accepted it-I can't swim, but don't need a CPAP any more either. It is a distinguishing cosmetic feature-good and bad. Trache maintenance isn't as burdensome as it may seem, but neither is my breathing. I can run up steps, walk long distances, golf and do anything on land. let me know if yu want to know more of my experiencce. The thought of a trache revolted me at first, but that's what it took-end of story.
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Like -
Helpful -
Hug
4 ReactionsI’ve become so frustrated with my medical care. Suffering long term side effects after head and neck surgeries and radiation. Experiencing continued shoulder shrugs on how to treat or manage this
except for PT which I am doing. What I am finding through internet research that there are other treatments to at least safely try. More shoulder shrugs when I bring the topics up. Medical centers need to think about a patient long term and what happens to them down the road.. I’m more then a dollar sign for initial surgery and radiation treatment. Angry
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Helpful -
Hug
1 ReactionNo Colleen they haven't. I'm sorry for the delay in my response to your question as for some reason I'm just seeing this now.
I have my first scans after tx the end of Sept. I'm rather scared we didn't get all the cancer as the reason for the nasal cavity scope to check in the first place was because of the nagging throat itching.......... and it persists................
I did notice that one of our esteemed members of this board mentioned perhaps an allergic reaction to my bed.............. don't matter where I am. I mentioned it kept me up at night because it's annoying in the first place and then to have it wake me up and keep me awake is enough to make me say bad words.
Lori,
Still trying to live the dream.......... as we all should 😉
the dreams have just changed.
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Helpful -
Hug
2 ReactionsSo far I've had 5 stretchings since my Stage 4 esophageal surgery. They are very helpful. At first the benefit of being able to swallow easier wasn't too great but got much better with each stretching. I actually went 9 months between stretchings recently. It's a godsend. Done under light sedation (Propofol usually) so recovery is good. I hope you can find alternatives to the trach - living with a trach is not good. I had one for the 2 mo. I was in a coma after my surgery. I've dealt with many health issues in my life and I am always open to new ideas and new doctors if need be. I need docs who think outside the box & really listen to your needs. It could mean seeing other doctors till you get resolutions. I wish you good luck with that. It is doable!
Betty
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5 Reactions@lori57216 i found this recipe for a cough syrup. Maybe it would help!
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3 Reactions