Does anyone out there have severe sore throat issues still lingering after radical neck dissection and radiation and feel like they are swallowing a lump all the time ---pain constant inside of throat and pain exterior from lower ear to mid jaw line to shoulder--inside and outside of throat? He is hoarse when he wakes up and throat hurts more and more throughout the day. Docs have done camera scans, swallowing tests, Xrays but it shows nothing. The severe pain is compromising his life but still he does do not wish to take any pain meds as they compromise life too.
Does anyone else experience this and have you found any relief? He has just undergone accupuncture for 4 weeks but no help. The more pain he feels, the more he gets scared.
Any and all suggestions are appreciated!
Anyone use lidocaine patches? Neurontin? Judy

I can tell you from personal experience that the fear can be crippling, even though he IS 4 years out! (congrats on that by the way).

Pain of any kind is miserable, but chronic, ongoing, invisible pain can be especially troublesome.

Does he followup with his surgeon who may shed some light on the muscular makeup of his throat, etc and offer some suggestions?

I've used both the patches and the Neurontin. Both make me feel "cotton head" and I don't like the sensation.

Plus, medication is rarely a long term pain management solution. The acupuncture idea is a great start. He may need to see a different acupuncture specialist, or change the routine, sequence, etc.

Guided meditation and/or some light hypnotherapy is well worth trying too (in my opinion).

I also think herbal remedies are worth considering, and an herbalist/naturopath may be able to make some good suggestions.

I too have "constant" pain in some areas, and I notice it's worse when I am stressed and fatigued.

Maybe reducing stress and exhaustion are good ideas anyway?

I think the fear component is likely compounding an already painful situation, so being vigilant with Dr followup and being pro-active with the Drs may help somewhat.

I can recommend a topical product called Topricin. It has been a miracle for me and many of my spa guests with pain that is not too far into the body. Seems like superficial muscle and joint pains can be significantly impacted by this product, especially arthritic type pains. Might be worth a shot. Most health food stores carry this, and a quick google search will produce lots of results.

One other anecdotal item, I noticed my pains decreased considerably after getting a wireless headset for my office phone.

I was having SEVERE pain and discomfort in my Scapula area the first several months to a year + after tx. I started using a cordless headset which seems to help.

:-)

PS: Also, I noticed that my throat hurts more (inside), the more dehydrated I let myself get, so constant rehydration might be a good idea too.

sorry if my comments down play the severity by suggesting such seemingly insignificant ideas...I just wanted to throw out some non-conventional ideas since you'll have plenty of the conventional kind.

Judy

Welcome to OCF and congrats on your husbands 4 year mark!!!!!

Many OC survivors have late effect side effects from rad/chemo/surgery. Its just part of the whole cancer experience, some have it others dont. While I do not have first hand experience with the procedures that your husband has encountered, I do know about the long lasting side effects which can carry on for years. When in doubt, check with the doctor. Sorry I wasnt more helpful.

I am 18 months post treatment and still suffer from throat pain which seems to worsen as the day goes on. The pain actually seems to radiate into my head/ears from my throat when I do a lot of talking. My MO says that the effects of Radiation and Chemo can take years before some people reach maximum improvement. I have just completed having a MRI of the brain and another Pet Scan of my body, both of which were totally normal. The brain scan was done due to my complaining about having dull headaches which were really beginning to stress me out as I had convinced myself that I was suffering from brain cancer. I think all of the stress associated with worrying about my symtoms further causes and contributes to my having headaches. So, its kinda like trying to figure out which came first...the chicken or the egg? My ENT Surgeon who I think is really very smart and knowledgeable had told me months ago when I complained to her about all my side effects and I asked if she had "any suggestions of what I could do?" said "yes, I have a suggestion for you, stop your whinning and suck it up!" So, maybe this is the price some of us have to pay to be cancer free. I think its just hard to accept that life ain't what it use to be after treatment.

Thank you all--please everyone keep your suggestions and thoughts coming. It helps him to read that others experience some of his same symptoms---not good for all of you but he doesn't feel he is so alone and psychosomatic with pain. Judy

Judy,

Nothing psychosomatic about all this, as you know! Who needs pretend when you've got the real thing. I know how he feels, though. Until I found this site last month I had the same thoughts.

You know, years ago my husband said that I had a low threshhold for pain. I actually believed him. After all, he knows everything. Then, while he was writhing in pain from something I considered fairly small, it occurred to me that he couldn't possibly have any way to judge my level of pain. He has never mentioned it again - especially since my battle with OC began 3 years ago.

Lani

I would suggest a second opinion if you haven't already done so. Everyone is so different but 4 yrs seems like along time to have severe pain. I am 1 yr out of surgery and have moderate jaw pain. My ENT tells me that everyone is different so time will tell what is instore for me. I hope that he will some comfort.

Steven, I can so relate to what your ENT said. My ENT also told me to suck it up and get on with your life. I guess people live with pain everyday from different situations. But it is nice to have this site to refer to and get support. We all somewhat understand what one another is going through.

One thing that helped me to heal and eliminated my jaw pain was hyperbaric oxygen treatments (HBO). After about 3 visists, my jaw pain which had been constant and severe started to get better. By the time I had done 10, the jaw pain was completely gone and has not come back. If you do a search about HBO then you will find some lengthy posts about it here and also articles about it on the main OCF site. I think the post is under After treatment issues.

Hey everyone-------- We went to an Orthopaedic Dr. about Lou's pain in shoulder from all the surgery of the neck dissection-he put Lou on Lyrica-------and he went from a 9 pain level 24/7 and is at a 2. Miracle! Please tell everyone how well this has worked for him. We discussed Neurontin and it has more side affects than this one. So far, we have no side affects other than PAIN RELIEF!
Judy