In 2009 I discovered a lump in my throat. I was diagnosed as having squamous cell carcinoma of my left tonsil. I choose the University of Chicago for my treatment. I agreed to partake in a clinical trial that called for 50 radiation treatments (7500 rads per exposure) and chemo. I left the hospital in November of 2009. Cancer free. I remain cancer free today.
However, 50×7500 rads of exposure burned me up inside and outside. I discharged from the hospital looking like I just survived Hiroshima. This was a huge ordeal. My epiglottis stopped functioning as a side effect of the radiation. I was further diagnosed as suffering from dysphagia due radiation treatment. High potential for aspiration kept me on a feeding tube for almost 3 years.
Somehow I was able to teach myself to swallow again and had been enjoying a limited diet until January of last year.
Seems I developed ORN in my left lower jaw. Needless to say the jaw finally fractured.
In April of 2018 I underwent a surgery to remove a dead and diseased portion of my lower left jaw. It was then replaced with a section of my left fibula. This was a huge operation that took about 10 hours. This miracle was accomplished at Loyola Hospital.
The area around my mouth is now numb because nerves were severed during the surgery. I am once again on a food tube and this time I believe it's permanent.
Food for thought concerning your treatment.
Hi Robert, I am so sorry to hear about your jaw surgery that made you go back to the feeding tube. I also was diagnosed with cancer of my right tonsil and had to undergo both radiation and chemo. The treatment has now caused me to suffer from dysphagia as well and has placed me in a feeding tube. I have been done with treatment for almost a year now and still am on the feeding tube, unable to eat any solids or anything other than watery liquids. I have been trying so hard to eat again but I don't know what else to do. If I may ask, how did you teach yourself how to swallow again the first time around?
Hi Robert, I am so sorry to hear about your jaw surgery that made you go back to the feeding tube. I also was diagnosed with cancer of my right tonsil and had to undergo both radiation and chemo. The treatment has now caused me to suffer from dysphagia as well and has placed me in a feeding tube. I have been done with treatment for almost a year now and still am on the feeding tube, unable to eat any solids or anything other than watery liquids. I have been trying so hard to eat again but I don't know what else to do. If I may ask, how did you teach yourself how to swallow again the first time around?
Has anybody had throat cancer with radiation damaged can neck and head with them tightness and pain in neck.? Especially neck spasms and nerve pain in head.
Has anybody had throat cancer with radiation damaged can neck and head with them tightness and pain in neck.? Especially neck spasms and nerve pain in head.
The American Head & Neck Society has a very informative article about radiation damage of the head and neck, including damage to skin, connective tissue, muscles, nerves and blood vessels.
Radiation Fibrosis https://www.ahns.info/survivorship_intro/radiation-fibrosis/
Don, you mention that you also have spasms and nerve pain. Is the pain constant? What triggers the spasms?
It has been a while since you last posted. I hope you are better able to eat now. Were you able to see your oncologist and PCP as planned?
Have you considered any other treatments?
The American Head & Neck Society has a very informative article about radiation damage of the head and neck, including damage to skin, connective tissue, muscles, nerves and blood vessels.
Radiation Fibrosis https://www.ahns.info/survivorship_intro/radiation-fibrosis/
Don, you mention that you also have spasms and nerve pain. Is the pain constant? What triggers the spasms?
It happens like 5 or 6 times a day and it when I suddenly caught my neck a certain way the pad is spasm starts and it lasts for like 15 seconds to look as I look like a epileptic fit person. My right side of my neck where the muscle attaches to the I guess shoulders they save that that muscle has shrunk and it's it's stretched out too far which makes my neck and shoulders push forward. If I support my head by my chin area and alleviate some of the pain. I'm seeing a pain doctor that says he can help in the facet joints are course some of my cervical spine I have bone on bone which they told me today. Taking it day-by-day is what I life is about and it will not go on opioids again. I will not, not,not!
It happens like 5 or 6 times a day and it when I suddenly caught my neck a certain way the pad is spasm starts and it lasts for like 15 seconds to look as I look like a epileptic fit person. My right side of my neck where the muscle attaches to the I guess shoulders they save that that muscle has shrunk and it's it's stretched out too far which makes my neck and shoulders push forward. If I support my head by my chin area and alleviate some of the pain. I'm seeing a pain doctor that says he can help in the facet joints are course some of my cervical spine I have bone on bone which they told me today. Taking it day-by-day is what I life is about and it will not go on opioids again. I will not, not,not!
To all of you who have suffered with esophageal cancer my heart goes out to you. My husband was diagnosed Aug 2016 with it. He had 4 strong rounds of chemo then he had his stomach stretched to recreate his esophagus.(1/2017) Within 3 months afterwards he was having a problem swallowing. Fortunately he still had the jtube. He had 6 dilations from March to July. The doctor couldn’t understand why he couldn’t swallow. Finally a stint was placed in his throat. Then he couldn’t breathe they removed the stint because it was being covered by scar tissue then when it was removed both of his vocal folds were paralyzed and then a tracheostomy. At this time we were told there was no cancer. I kept asking this. But thinking back no one really checked. Then we find out after being sent to Stanford the end of July within the scar tissue There was cancer!!! He has not had anything to eat or drink by mouth since. It has been mentioned that if he can be cancer free they will place a stint so that he could eat and swallow his spit. The doctor at Stanford even mentioned another type of surgery but His PETs keep showing up with a little cancer here and there. Then chemo or radiation. The last doctor we saw told us that his cancer was high in his throat where usually it is lower. Then she explains that the longer you stretch a rubber band it is smaller and tighter so my question is, why did he have this surgery since it was so high up? Deep down I feel there were mistakes made along the way. If I had to do this again I would get a 2nd and 3rd opinion. It is just that when you hear cancer you freak out! My husband was very healthy so we never saw hospitals for anything! This was and is all new to us. It is so sad to see him just sit my heart breaks. He can’t swallow, he can hardly talk. He is constantly battling with this trach. I wished I could have said way back then WAIT we need another opinion or two. Good luck to you all and my prayers are with you and your healing. My thought is that esophageal cancer comes on slowly you may have it for quite awhile before you are actually diagnosed so take the time and get that 2nd or 3rd opinion. Ask a lot of questions.
Hi , my tumor too was very high in my throat , I am now cancer free after radiation , chemo , and keytruda treatments.
I have been on a PEG tube since August 2019 . I recently tried to have a dilation , but the GI doctor said no way , too risky because of all the scar tissue . I have a referral at a big research hospital , but I don’t have much hope . I will most likely have a PEG tube the rest of my life .
But , on the positive side , I am , so they say , cancer free , and I am doing well with the PEG tube . I have no medical credentials, but I would not consume commercial formulae like Jevity exclusively . You get 54% of your calories from corn syrup .
I bought a Vitamix blender , and I eat healthier than I ever have . Research tube feeding recipes , and you will feel 100% better than eating Jevity . I have gained weight , a bit too much , gonnna have to cut back , but I have probably 85% of the energy I had pre cancer .
Sorry I just realized this thread was about neck tightness and pain , I have that also, I see an occupational therapist for exercises , but my improved diets has allowed me to exercise more , and given me the energy to do household chores and yard work , which involves subtle neck muscle use that helps.
Hey man. I’m in the same boat as you. Lotta scar tissue. Especially when I eat. You just have to take small bites and eat slower than you normally do. Make sure the food is moist of course. 2 or 3 times a month my food gets lodged takes several minutes to go down. If you want to chat about it feel free to let me know thanks man
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Hi Robert, I am so sorry to hear about your jaw surgery that made you go back to the feeding tube. I also was diagnosed with cancer of my right tonsil and had to undergo both radiation and chemo. The treatment has now caused me to suffer from dysphagia as well and has placed me in a feeding tube. I have been done with treatment for almost a year now and still am on the feeding tube, unable to eat any solids or anything other than watery liquids. I have been trying so hard to eat again but I don't know what else to do. If I may ask, how did you teach yourself how to swallow again the first time around?
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1 ReactionHi @yesmei123, how are you doing? I thought you might also be interested in these discussions:
- Feeding tube removal https://connect.mayoclinic.org/discussion/feeding-tube-removal/
- Esophageal cancer....transitioning to food https://connect.mayoclinic.org/discussion/esophageal-cancer-transitioning-to-food/
- Emotional implications of having a feeding tube https://connect.mayoclinic.org/discussion/emotional-implications-of-having-a-feeding-tube/
Have you started eating without the feeding tube?
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1 ReactionHas anybody had throat cancer with radiation damaged can neck and head with them tightness and pain in neck.? Especially neck spasms and nerve pain in head.
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1 Reaction@donfeld, I moved your message to this existing discussion in the Head & Neck Cancer group (https://connect.mayoclinic.org/group/head-neck-cancer/). I think you'll appreciate following the H&N Cancer group and connecting with others like @alpaca @karly @jimchardy @roberthenry @yesmei123 @skoshi and more.
The American Head & Neck Society has a very informative article about radiation damage of the head and neck, including damage to skin, connective tissue, muscles, nerves and blood vessels.
Radiation Fibrosis https://www.ahns.info/survivorship_intro/radiation-fibrosis/
Don, you mention that you also have spasms and nerve pain. Is the pain constant? What triggers the spasms?
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1 ReactionHello @skoshi,
It has been a while since you last posted. I hope you are better able to eat now. Were you able to see your oncologist and PCP as planned?
Have you considered any other treatments?
It happens like 5 or 6 times a day and it when I suddenly caught my neck a certain way the pad is spasm starts and it lasts for like 15 seconds to look as I look like a epileptic fit person. My right side of my neck where the muscle attaches to the I guess shoulders they save that that muscle has shrunk and it's it's stretched out too far which makes my neck and shoulders push forward. If I support my head by my chin area and alleviate some of the pain. I'm seeing a pain doctor that says he can help in the facet joints are course some of my cervical spine I have bone on bone which they told me today. Taking it day-by-day is what I life is about and it will not go on opioids again. I will not, not,not!
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1 ReactionHello @donfeld,
While I'm not familiar with your entire story, I'm wondering if any physical therapy has been tried? If so, did it help?
Hi , my tumor too was very high in my throat , I am now cancer free after radiation , chemo , and keytruda treatments.
I have been on a PEG tube since August 2019 . I recently tried to have a dilation , but the GI doctor said no way , too risky because of all the scar tissue . I have a referral at a big research hospital , but I don’t have much hope . I will most likely have a PEG tube the rest of my life .
But , on the positive side , I am , so they say , cancer free , and I am doing well with the PEG tube . I have no medical credentials, but I would not consume commercial formulae like Jevity exclusively . You get 54% of your calories from corn syrup .
I bought a Vitamix blender , and I eat healthier than I ever have . Research tube feeding recipes , and you will feel 100% better than eating Jevity . I have gained weight , a bit too much , gonnna have to cut back , but I have probably 85% of the energy I had pre cancer .
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1 ReactionSorry I just realized this thread was about neck tightness and pain , I have that also, I see an occupational therapist for exercises , but my improved diets has allowed me to exercise more , and given me the energy to do household chores and yard work , which involves subtle neck muscle use that helps.
Hey man. I’m in the same boat as you. Lotta scar tissue. Especially when I eat. You just have to take small bites and eat slower than you normally do. Make sure the food is moist of course. 2 or 3 times a month my food gets lodged takes several minutes to go down. If you want to chat about it feel free to let me know thanks man
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