Long time / No Post�. (But always keeping up on reading)

I am coming up on my 5 year mark. I am grateful for every day since I ended treatment. I have had many ups and downs, but looking back, I can see that life has been good (actually great).

Currently, I am at one of those times that I have a bunch of issues, which typically end up being the post issues, aka the �gift that keeps giving�.

I would like to share what I am experiencing, and see if there are any other similar experiences. Before I go too far, I have set up Dr. Appointments, so I am not asking what to do (we all know that).

In October, I had my ENT check up. The night before, while I was cleaning up my mouth really extra good, I noticed my tongue looked all deformed. One side was normal, the other side (the right side), looked all out of shape, and curved. When I want to the ENT, he gave me the �wow, that�s a good one�.� He wrote down a lot of notes, and then proceeded with his through exam on my mouth, tongue, throat, and neck. Everything checked out fine, and he said he sees no signs of cancer or even suspicious areas. Regarding the tongue, he said to keep an eye on it, and he�ll see me in a couple months. If anything changes, come back sooner. I�m good with everything at this point.

In parallel, over the last year, my neck spasms have become pretty prominent. I try the stretches every now and then, but they don�t seem to have an effect. The spasms occur mostly when I am in bed, or laying down watching TV. I have adjusted my sitting habits to not put my neck into a position that would cause painful spasms.

Which brings me up to this week? I had discovered that the tongue thing involves the hypoglossal nerve (xii). My thoughts had been that the post radiation side effects have evolved into a position to affect this nerve. Then, on Monday, I started to get sick, with what I would classify as a infection (like strep or something). My throat becomes sore (where the tonsils use to be) and under my chin and jaw bloats a little, and becomes a little hard (not a lump kind of hard, but a fluid hard, if that makes sense).

On Tuesday, the base of my skull started to ache, so I lay down in the afternoon (after voting). By nighttime, it felt like the right side of my neck was on fire, in great pain. To the touch, it was a 9 or 10.

On Wednesday, I went to my GP DR, with the intent of knocking out the infection possibility. Strep came back negative. He prescribed Augmenten and some pain relief medicine. He also sent me to get some x-rays of my neck (which I am waiting for the results of that).

I do see improvement in the neck pain when I take those, but the sore throat is still there (too early for that med to take effect). Last night, when I was sleeping, I wheezed while breathing. This is the first time since I can remember. When I woke up, and to this point this morning, the right side joint of my jaw hurts when I open it...

My plan is to get the XRAY results today, monitor the symptoms for changes (good and bad), and then go to my ENT.

I know this was kind of long, so to summarize, what I was asking for comment on was if anyone had similar circumstances with:
� Same side hypoglossal nerve issues (loss of shape on one side of the tongue)
� Sudden and sever back side of neck / neck pain (same side)
� Swollen lymph system (including tongue)
� Sudden pain on the jaw joint (same side)

I still think this will end up going down as an infection, and because my system has been fused and rerouted from radiation, this is just another wacky souvenir from the gift that keep giving.

Cheers
Mike

X-Ray results show no obvious bone / spine issue.

Hi Mike, I am new and don't know what I am doing so bear with me. I have been cancer free for 3 years and am not experiencing all your symptoms but I have severe jaw pain and neck stiffness. I also have severe hearing loss in both ears due to chemo. Depending on what, if anything, the xrays show - I would demand a pet scan. Don't mess around with it. Get a 2nd opinion if you have to.
Patty 100

I'm 3 years out and my biggest problem is chronic dry mouth. I could not speak because my mouth would painfully glue shut. I had to get up at all hours of the night to sip water. I couldn't mow the lawn or exercise because my mouth would shut down in seconds. Well, I started using the XEROS Dry Mouth Pump and wow did it ever turn things around. I can now talk as long as I want. I sleep like a baby and I can now cut the grass and do my exercises. So things are looking pretty good. I have leather neck too but that ain't nothing. It's starting to loosen up a bit (from neck surgery).

Hello,
Martin is at the 2 year mark and he still has terrible neck stiffness and pain. But the head aches and some of the pain apparently is due to a slipped disk. He is due to have an operation around January. Hopefully the pain will lessen.
He also have a sore throat particularly the side that doesnt have a tonsil, but that is due to an infection. He does wheeze sometimes after his bark/cough, but he steals my inhalor and it works.

Update:

� The severe pain went away after a few days of meds...I guess that the way my body deals with being sick. The whole lymph system is rerouted, and goes where is can.
� The muscle spasms in the next are the same, no worse or better. If they crank up a level or two, I�ll pull in my next appointment with my ENT.
� The �one sided tongue� is still the same. I think I see more tongue spasms more now (of course, I am looking at it more now, so it might be no change).

I do have a two new symptom / observations, if anyone is still with me��. Most every time I brush my teeth, I get a little bit of bleeding from my tongue. It doesn�t last very long, and it is only occurs when I use my toothbrush on my tongue. I�ve never have noticed it bleeding on its own, so I am not too concerned. I�ve been able to isolate it to the side that is deformed from the spasms, and but I can never actually see the spot. While tracking this, I noticed that my same side circumvallated papillas are way larger on this side, compared to the other side. They look clear/white, and at least 2x bigger than the other side. My thought is that the spasms on that side (or what ever the issue is) is causing this.

All and all, I think this is all related to post radiation fibrosis. I am not sure what can be done, or even if anything could be done. As we all do, I�ll monitor and report what I see and feel to my Dr�s., and not make any assumptions.

Thanks all,
Mike

Hi Mike

Sounds like some of the same stuff I have. I have been told by my ENT that they may want to treat the spasms/cramps w/ Botox. Interesting treatment IMHO, but if/when it gets bad enough I suppose I'll give it a run.

I too get a bit of bleeding every once in awhile from my gums and tongue after a good cleaning. Doc says no big deal unless it is a large amount (define large )

Keep on keepin !!

Kevin