I'm approaching my 5 year anniversary of being cancer free at the end of october, but some symptoms sent me to my ent sooner. Long story short, I had a ct scan on 8/23 that was returned negative. Needless to say, i was very relieved, however am still experiencing the same symptoms on an even more consistent basis. I have posted with these symptoms before over the last couple of years, however they are persisting this time and I am at my wits end. I have left sided ear pain(seems to be referred), jaw pain, sore throat pain, neck pain and now shoulder pain, all on left side. I also have left sided sinus pressure and fullness with a little PND. My cancer originated in my left tonsil and spread to right lymph nodes. I had a right side neck disection and was radiated on both sides, but the opposite side of my disection is causing the most discomfort. I was diagnosed in May with GERD and finally started taking prilosec. Thank God it worked as I was having pains in my chest. At that point I ws having intermittent ear and throat pain which too went away so I thought it may have been related to Gerd. I recently doubled up on my prilosec however to no avail. i also had a chest xray in May, all clear. My neck and shoulder hurt very bad in the last few days, I have had to rely on vicodin and heating pad for relief. My question in all this is, what the hell is this???? My ent says it is muscular, and sent me on my way. I researched that a little and found the muscles surrounding the eustacian tube could be damaged due to radiation. Is this a stretch? I am also having aching in my left arm that radiates from my shoulder to the back of my upper arm with tingling in my thumb and forefinger. I also had ekg in may, clear. Any advice would be appreciated. i want to make an appointment, but with whom? Is it muscular, neural, slipped discs, tmj, or is it something that i have to get used to being it is now my "new normal"? My mind always goes to the worst, but with a clear ct scan, could something have been missed? Any advice would be appreciated. thanks in advance.

Kelley

I am a couple of months behind you and I have a lifetime prescription for Valium. My neck muscles on the right side were fried by the radiation. I tried physical therapy and it didn't really help. I have other minor issues too which sound similar to yours, probably also radiation related. Last month I got thrush and I have had a good salivary gland recovery because of the IMRT. I have also taken Prilosec as needed, for hiccups more than anything, but don't really don't have problems with GERD. I do get occasional unexplainable pressures in my right ear and I seem to be more "phlegmy" in the morning than I was post Tx but all in all everything is quite tolerable. I still have a little jaw pain when yawning but no trismus.

Kelly, I am a 10 year survivour and in the past 3 years this all started. I have identical arm, shoulder and muscle pain on my left side. Most days my arms are numb with shooting pain radiating from shoulder fingers which are also numb. I drop many things lately too. I have been to radioligist, nuroligist, gp and massage specialists. No one has given me any answers either except that GOD you are alive. Last week I went to Chicago Rehabilitation Pain Clinic. They at least make sense and told me it is muscle and nerve damage from radiation therapy. I am starting phisical therapy program in a few weeks for streching muscles with them. No idea what results I will get but pain is unbelievable I am desperate.

Thank you both for your responses. Am I just to assume though that radiation caused damage to my muscles or should I get a different test than the ct scan. It seems though that I may have a couple issues going on, the neck shoulder arm issue as well as the ear throat jaw issue. Jim, I hope you get relief from pt. I'm thinking of making appointment myself. Gary, I think I need to start lobbying for a lifetime prescription. I feel it's like pulling teeth in order to get a 30 day supply of xanax, 25 mg to boot. Some days I need a little help, because with all this pain, my mind goes to recurrence, even with a clear ct. Is it possible that the ct missed something that would cause this sort of discomfort?? The ear pain and sinus pressure is really weighing heavy. My ent looked in my ears and down my throat so far, I thought the mirror would come out the other side. I think I'll start with my medical oncologist for answers and referrals unless anyone suggests otherwise. Thanks again guys.

Kelley

The answersis there are no clear cut answers, unfortunatly. I have found as time passes things change. I am currently on a peg tube after 10 years of eating my flap stop working and 3 months ago I got asperation pneumonia. I am very bumbed out at my life situation currently. Apparently this is also a long term side effect of radiaton and Chemo therapy. I have been doing every exercise I have heard and read about to get back to the old days. So far not much success with any of them.

Kelley,

I will attempt to give you some possible answers to your symptoms.
As I understand your post you have and/or are experiencing; chest pains...relieved by prilosec; left side ear, neck, jaw, shoulder and throat pain as well as tingling in your left thumb and forefinger; PND; clear CT scan and some similar but not as serious right side problems.

Neck dissections can lead to multiple post operative problems. One of the reasons is that the nervous supply for the neck shoulder and arm arise starting from the fifth cervical vertebrae and is often disrupted and/or involved in the surgery. Radiation causes stenosus of the tissues reducing their regenerative capacities and function. Nerve and vascular bundles become less pliable and can be impinged upon by the surgery and scar tissue formation.

Here is a link that describes this nerve bundle.
http://en.wikipedia.org/wiki/Brachial_plexus

This bundle of nerves as well as the neck and shoulder muscles undergo a lot of trauma from the surgery and the radiation leads to siffness and lack of mobility. Add to this scar formation within the muscle and other tissues, reduced lymphatic drainage to remove waste products and toxins, nerve impingement and diminished muscle function/impairment pain is bound to arise.

There may not be an all encompassing solution to eliminate all of the problems. Some things I would suggest to you are;
1. Talk to your doctors about seeing a physiotherapist and massage therapist who knows her lymph drainage pathways..
2. Try and stretch gently, without causing further pain, your neck, shoulder and arm muscles as much as you can. (the physiotherapist can give you some simple basic routines).
3. Keep hydrated, drink lots of water. This helps keep all tissues functioning at their best.
4. Have an ENT evaluate your PND.
5. Have a dentist who is competant in Temporal Mandibular Joint Disfunction (TMD) and Myofacial Pain Disorder Syndrome (MPDS) evaluate your jaws.
6. Possibly a referral to an Orthopeadic surgeon to evaluate your arm and shoulder function and pain. They may be able to offer suggestions to relieve your pain and will definatly be able to determine whether nerve impingement is causing your shoulder pain and finger numbness.

I hope some or this is usefull to you.

Cheers,

Mike

Hi Jim,
I'm sorry you are having such a tough go, especially 10 years out. I thought it would be a happy day for me reaching my 5 year anniversary. I cried when I got the "negative" result, saying out loud that this was the first day of the rest of my life. That feeling unfortunately lasted about 2 weeks. Now I'm back to having negative thoughts about recurrence, even in my dreams (or nightmares). I always thought I was a strong person. I have had difficulty adjusting. I wonder if you or anybody has had difficulty with tmj after treatment? Would a ct scan show cancer in the jaw and/or sinuses or are xrays better for that. I have an apptmt with a periodontist for some dental issues and will consult with him re tmj. What about necrosis? I know I'm all over the map but the discomfort is wreaking havoc on my mental state. Please help. And good luck with physical therapy Jim.

Kelley

Dear Mike,

Thank you so much for your reply. I obvioulsy didn't see it before I posted again, or I wouldnt be sitting here looking like a sniveling idiot! My ENT referred me for jaw physiotherapy over 6 months ago and never went. my symptoms went away. this time though, they are persisting and progressing. I have an appointment with my med onc on tuesday and will ask for another referral. Also as stated in my last post, will consult with a perio re tmj, although im sure he'll refer me to a specialist. Mike, are my fears regarding my jaw worthy, or would a ct show cancer or necrosis? Thanks so much for your help and for the record, I'm glad you stayed as well. I'm on the boards frequently as a lurker and I just want to say that you are one the kinder and more compassionate people i've "met". Thank you for that.

Kelley

Kelley,

Thanks for your kind words.

My personal opinion on your jaw is, if it bothers you and you worry about it ask questions and be persistant until you are happy with what you are told.

I'm sure some will disagree with this but, in my humble opinion: and MRI or Pet scan gives more information than a CT scan. I, however, am no expert in these areas. Dileep is an MO from India and a new member he may be able to shed some light on this.

I would be interested in knowing if your surgery involved your jaws Upper or Lower, The status of your dental health, and howm many back teeth you have. The jaw condition could be unrelated to your past history and just causing anxiety. I need more info to substantiate my thoughts.

Cheers,

Mike

My set of doctors have never sent me for an mri and my insurance company wont pay for a pet unless a letter of medical necessity is submitted. I asked my medical oncologist, and he said he did not feel that there was a medical necessity. Case closed. That was earlier in the year when my gerd was acting up. I was also given a script for xanax, but as i implied before, it was only short term, a 30 day supply. In answer to your other questions, my overall dental health is pretty good. I have all but one of my teeth, the 2nd premolar on the bottom right. No second tooth, only a baby. The same goes on the left lower, however the baby tooth is still there. I have no wisdom teeth, the only one that came in was removed in my 20's. My left upper first molar has a crown, which my dentist said may need a root canal. It is sensitive to heat and cold. He told me to inquire about it with an endodontist, but didnt disagree with me when I wanted to go the tmj route first. My upcoming dental work is gum related on my upper right, the other side of my jaw problem. I'm also going to consult regarding implants for my 2 baby teeth, however having had radiation, i,m curious as to the possiblity. Lastly, my neck disection was on the right. My cancer originated in my left tonsil and showed up in 3 lymph nodes on my right side. It was a modified neck disection and I had 62 gy external radiation on both sides with 3 cycles of cisplatin. No tube, always kept my throat working. My problems are on the opposite side of my disection, but same side as primary. That's about it. I will inquire again with my med onc re mri on tues. Thanks again. I appreciate your time.

Kelley