Cramps (?) on the right side of my neck 4 1/2 years post radiation for BOT Cancer

Larry449

I’ve been having cramps (not sure if cramps is the right word) on the right side of my neck. If I turn my head a little down or up, it feels like a muscle cramping or locking up. I can move my head back and forth to relieve it but it’ll often ache for awhile afterwards. Sometimes while I’m at a doctor’s office it isn’t bothering me so I either don’t mention it at all or don’t make a big deal about it. Last December, at a routine visit with my MO, (monitors PSA after prostate cancer) it was bothering me so I mentioned it. He was already going to order my annual CT scans so he said he’d throw in an MRI for my throat as well. (he was aware of the BOT Cancer but not involved with it). The MRI showed a nodule on the right side of my thyroid without evidence of recurrent disease and recommended an ultrasound. I took the MRI report to my ENT who ordered the ultrasound (although he said where I pointing at the area was not thyroid, the thyroid is lower). I got the MRI. The report stated that there was a 3.7 X 1.3 X 1.4 cm nodule on the right side of my thyroid and recommended a TNA so the ENT order a needle core biopsy. A few days later I called the hospital to get an appointment and was told they’d received the order but it’d been denied. Apparently the was a “dictation error” in the report and the lady I spoke to said to call the doctor, who then told me to call the hospital back and get an addendum to the report. I called them Thursday but the lady I spoke to was a little vague but said there’d been an addendum and someone would call me back later. This morning, Monday, I still hadn’t heard so I called and spoke to the imaging scheduling lead. What she said is that whoever wrote the report, or read the ultrasound, had written the wrong dimensions so when it was reviewed they said the actual size of the nodule was 1.1 X 1.0 X 1.0 cm so that would not warrant a biopsy. Thinking back to what my ENT had said about where the cramps or swelling is, is not my thyroid, so now I don’t know which way to go. While I’m somewhat relieved that I’d don’t, at least for now, have get needles stuck in my thyroid, I’m still having the problem with the “pain in my neck”. I do remember someone describing something similar on another forum , maybe Reddit, about cramps in his neck that where never explained except for him being prescribed muscle relaxers that really didn’t work. I’m kind of in limbo here. My next appointment with my ENT which should be my last because it’s been 5 years without recurrence, isn’t until July. I don’t know if I should call him back again, wait until my July appointment or just call my MO who ordered the MRI and works in a completely different medical association (which generally seems to have their sh*t together better than the immediate local system). If you’ve read this far, thanx for baring with me. I’m kinda in rant mode right now.

Larry

wbcgaruss

Hi, Larry, I hope you are doing well besides the concerns you have.

It looks like your thyroid situation is sort of resolved.

There is a nodule, but it is small enough that they will not biopsy it yet.

As far as your cramps, they may be due to radiation.

The 2 things I have had are somewhat similar, and they come and go, and I attribute them to surgery, radiation, and aging.

My inside cheek on the left side, my radiation and surgery side, gets a sore feeling like a mouth blister or something similar, and right where my molars come together when chewing, it can hurt pretty badly because it feels like an ulcer, and when chewing it feels like my tooth rubbing over it, though I manage to tolerate it at its worst. This started a couple or three years ago or a little more, I can't say exactly. So, not long after the first event of it happened, I had an ENT appointment and told him of the issue. Also I get regular scans every year of head & neck and chest.

He checked it out and felt around, looked inside my mouth, and said everything looks and feels perfectly normal. No problems. My lymph node neck operation was done on that side and was quite extensive because the cancer was not encapsulated in the node and had spread.

So he said it is probably nerves sending the wrong signal that there is a sore spot when there is not due to the surgery and radiation I had received.

I was at my dentist not long after that, and he agreed with the ENT and said the same thing: everything looks and feels normal, no problems are seen.

This comes and goes, and I have had it about 4 or 5 times now, and it may hang around a number of days or several weeks, and then it just sort of goes away again.

The other problem I have had which is similar to yours is when brushing my teeth my left side jaw will hurt and lock up like a cramp and I have to twist my neck a bit, open my mouth more, not exactly sure what all I do to get iit to stop and I can finish brushing my teeth, or not sometimes it does it several times.

This too comes and goes and is gone now than god.

And one more thing I had in the last year was very sore neck muscles, but I think I just slept wrong on it. But it felt eerily like when I had lymph cancer in my neck. I called the ENT's office, and I had an appointment coming up in 3 weeks, but they could get me in sooner if I wanted. So I decided just to go with what I had in 3 weeks.

Lo and behold, by the time my appointment rolled around, the stiff sore area in my neck was gone, and there was no issue, but once you have this or any other cancer, your mind goes immediately to oh no, cancer again. It did take most of those 3 weeks to go away, though, because, as you know, as we get older, it takes longer for things to heal or straighten out.

Keep in mind all these things happen on my left side wher the operation was, and my radiation was the most concentrated.

I have an idea that your situation may be similar.

BUT if you are ever uncomfortable with an area and it persists, push the issue till you get them to OK a CT scan with contrast, better to be safe than sorry.

I hope this helps.

Wishing You The Best

NEGU (Never Ever Give Up)

Take Care, God Bless

Russ

Larry449

https://csn.cancer.org/discussion/comment/1726727#Comment_1726727

You’re right about immediately thinking..it’s cancer again! Guilty as charged. One thing I do have a problem with though is that I’m allergic to IVP dye for CTs with contrast. About 30 years ago, I was laying on an ex ray machine with an IV in my arm - suspected, later confirmed kidney stone - a nurse steps up and says she’s pushing the dye (into the IV). I felt warmth go up my forearm from the IV, nothing odd there, until the warmth hit my armpit - my throat instantly closed and I couldn’t breathe! Anaphylaxis! I did a sign with my hand like a karate chop to my neck and someone yelled “Oxygen!”. An oxygen mask was put over my mouth and nose and a nurse pushed epinephrine into the IV. The doctors told me to always inform doctors I’m allergic, so I have ever since. I have had a couple CTs w/contrast but I’ve been heavily pre-medicated. Now my hospital has it on my record and won’t even do it with contrast, even if pre-medication. I don’t have a problem with contrasts used in MRIs or PET scans, just the iodinated contrast used for CTs.

wbcgaruss

Very good Larry, I hope your neck spasms, cramps soon go away and become a non-issue.

As far as the contrast for CT scans, I don't blame you for staying far away from it and thoroughly making sure all your medical providers are aware of it. You don't want to risk another allergic reaction like you had. Thankfully you could quickly signal the nurse and she was right on top of things and knew exactly what to do.

Wishing you the very best…

NEGU (Never Ever Give Up)

Take Care, God Bless

Russ