I have been having what feels like muscle spasms on the left side of the underside of my chin for a few months now. Usually happens when I exercise and my heart gets going, I yawn, or try to hum. But every now and then, it just does it because.

I wasn't able to see a doc because of an issue with medicare since december and I am 6 months overdue for a scan. I haven't had a scan for a year now, and am 2.5 years out of treatment for initial dx. But none of my scans have been clear, no cancer, just activity. They were going to watch, and scan every 6 months, but thanks to medicare, I wasn't able to get my last one.

Now I am scared out of my mind because when I feel the pain, the only thing that gets it to stop is if I put some sort of pressure on it, or stretch out my muscles, but if I do the same thing again, it comes right back.
When I was putting pressure on it, I felt a round form, and now my mind is running wild with it.

Things are finally getting back to going right in my life. I am supposed to be starting a new program in college in the fall, and be in a friends wedding in may, and I am afraid because things are finally starting to go good again, and that this pain has been going on for months now, and the round form I felt, that I may have to fight again.

I can't get my brain to shut off tonight, hence the post. I have an appointment with a new ENT and dietician on march 20th, which I know isn't that far away, but when you are in pain, and worried, and scared, it's seems like forever.

I just want an answer, but i fear my answer will be that I will have to fight again. One of the spots of activity on my scans has always been the anterior floor of my mouth, but they did a biopsy about 2.5 years ago and everything was fine, but no biopsies or anything since.

Hopefully it just comes back as a blood vessel that is pinched, or something, I don't know what else it could be. My dentist tried to tell me it was my jaw muscle because I was clenching too tight, but I told him it only happens when I open wide, heart rate elevates, or try to hum, and sometimes no reason at all, and he then asked, well you see your cancer docs regularly yes? that really put me at ease.

I feel your pain, and worries. Once you have cancer, and go through the what you did, who wouldn't be anxious. You can always get a 2nd opinion to help ease your worries, and sounds like you are with a new ENT.

As far as the pain, try to avoid triggers or episodic events that cause it. Maybe you can get "break through" pain meds for when you can't avoid these triggers.
Some even get Botox injections for spasms.

You said pressing on the area helps relieve the pain. Maybe see about acupuncture, acupressure, myofascial therapy, physical therapy or manual lymph drainage.

I feel I have reduced blood flow from the racial neck dissection, and could be similar from your surgeries. I also have a bump under my chin, submental area, which I call a turkey neck, from the accumulation of lymphatic fluids that is common with neck dissections.

As far as Medicare, you can appeal any denials, and hope your issues are resolved.

I hope this helps, and good luck with the doctor.

Hi Bethany!

Sorry to hear you are having some issues right now!

I suggest calling the new doc and asking the receptionist if they have any cancellations. Maybe they could squeeze you in sometime this week. The sooner you get in, the sooner you will be able to get scheduled for further tests like a CT or PET scan.

Please try to keep your mind busy to help keep you from being so worried. I know its not easy to avoid worrying. Some patients find it helpful to limit the amount of time you think about your situation to say 5 or 10 minutes then 'change the channel' and force yourself to think of more positive things. Sounds like you have some great things coming up in the near future so try to think about those things. School is a good one to focus on, there are so many little details that go into it.

Please use caution with botox. I have discussed botox with my ENT. He told me it paralyzes the muscle so in my situation it was not a good idea at all.

Please dont let insurance keep you from getting your check ups. I went without insurance for about 6 months. All of my doctors worked with me. My ENT normally charges $85 for a 10 minute consult, he waived his fees during my lapse of insurance. Many hospitals have discount programs that you have to ask about. They dont volunteer these things to everyone which to me isnt right. Never know, by asking you could end up finding someone who will think of the patient first instead of their own pocket. I always say if you dont ask, you dont get.

Please check back in and give an update. Hoping all is ok and its just scar tissue bothering you.

Hi Bethany - radiated muscles as you know are a whole differen ball of wax from the regular ones - I find my muscles in my neck tighten when I exercise as well and they cramp. And cramped muscles swell (lactic acid build up etc) it's very possible the muscle is having trouble due of all of this including lymphedema when you over exert them. This lump might just be a part of the muscle that's spasmng (cramping) and then there's car tissue too. Try not to freak... Muscle do knot - radiated ones probably do it worse... But do try to move your appointment up to eas your mind. Also remeber radiation thins tissue out - this lump may have been there all along but only noticeable now - hugs!

Dear Bethany,

I had jaw surgery about 25 years ago to fix an alignment issue. Ever since I will get exactly the same pain and bump you are talking about. It comes on when I yawn or try and keep my mouth open wide for a while. I get this painful knot of muscle bunch up on the bottom of my jaw just behind my chin. I then have to massage the muscle for a few minutes to get it to calm down but it usually only lasts about 5 to 10 minutes. It�s about the diameter of a nickel and forms a noticeable bump

My doctors have all told me that the change to my anatomy due to the surgery is just causing the muscle to knot up under certain circumstances and I should not worry about it. Just massage it out and try and avoid those situations that cause it (yawning?).

If your pain is being caused by the same type of thing (change to anatomy due to surgery) you have nothing to be worried about. It�s just an annoyance you'll have to get used to while you deal with the bigger issues in your life.

I know the terror you are going through. That gut clenching cold sweat fear that sends your mind into overdrive. For me, I then start to have symptoms that were not there before! I hear that level of fear and it is great that you posted. I hope that writing it all down helped relieve some of the anxiety.

I hate that your medical system would stop you from getting checked. That, to me, is just SO WRONG. Regardless, we can't change history and we are looking forward to great clean results from your appointments later this month.

Be careful of that mind of yours! Once the anxiety gets ramped up your mind can and will play all kinds of tricks on you!! Try to stay busy, enjoy each day, and use relaxation exercises.

Hugs, and feel free to post.

Donna

I used to get knots the size of golf balls first in the neck,then the traps and then the back. It was bad enough to bring me to my knees at times but then again I am only a man. It is caused during contraction of the muscles. If it is somewhat small then you need it stretched. Monthly massage helps the best. Work with a physical therapist, kinesiologist, accumpuncturist, etc., to get it worked out while still small and remember to do any stretches or excercises suggested often and forever or it could get bigger. It is possibly effects of radiation and there is blockage of either blood and/or current. A Chirpractor that uses ART releases the knot. It is similar to myofascial release, accupressure, trigger point release. If left alone calcium can build up with scar tissue and cause more complicated issues. It can be caused by scar tissue in the nerve casing that restricts electrical impulses.

Ed

Bethers, I also get similar shooting pains, predominantly when I yawn or stretch. I realize it's very easy to say "don't worry", but based on my own experience and what I'm reading from fellow travelers here, I'm thinking you're going through some residual stuff from all you've been through. Still, always a good idea to discuss with the medicos as others have suggested. So I hope you'll be able to do that. But meanwhile, try and be calm (easy for me to say, right?). Come here and vent anytime you need to!

Keeping good thoughts flowing your way.

bethers, so sorry to hear ur having this extra trouble. it sounds like its a remnant of ur trmnts. we can hope for that anyway. I will keep u in my prayers. try not to let ur mind run away w/u. I know, I know, much easier said than done. please keep us posted and let us know what the doc says.
God bless,
debbiejeanne

Hi Beth,

When I worked for the Federal Government (NOAA), I learned that when you run into an intractable problem that involves the Federal Government, a hand-written letter to your Congress critter, the guy who represents your district in Congress, and each of your Senators is very often the key to unlock your problem.

Don't be afraid to play the sympathy card, survival is no place to get noble, so lay it on as thick as you can. Ask nicely (hell, plead) for assistance with the system, and the chances are very, very good that suddenly, the medicare folks will be falling all over themselves to help you both get the care you need and to make the problem go away.

Hand written, hand addressed envelop. Very effective (unlike email)

When you write, imagine how your story would read in a newspaper article. Make it tug on the heartstrings for all you are worth. No politician wants to read such an article, UNLESS it shows how the politician rode in on his white horse and saved the day.

Do you copy?

If you'd like, you can pm me a draft, and I'll massage it for you.

Bart