For the last week or so, I started getting these spasms, like a charlie horse, that are in my chin area, that feel like it is the bottom of my tongue, or maybe a muscle near the incision that they removed my lymph nodes from. I am thinking it is more the bottom of my tongue, but I am not sure. It has usually been doing this once a day, but today, I did an walking exercise dvd, and it did it for about 30 minutes after that, and now still hurts, but at least isn't spasming.
Has anyone else experienced this, or know of anyone else who has? I don't have insurance right now, but I finally got paperwork to do disability again, and may have medicare when that goes through, but so up in the air about everything I am not sure. I have been out of treatment since July 2010, and I don't know what is going on with this, but I don't like it.

Bethers,

My husband gets spasms or cramps as he calls them in the side of his neck often since his laryngectomy. He spoke to his Dr. regarding this and she suggested physical therapy which he declined. She felt it was from the surgery and the fact that they excised through the neck muscle.

Hope this helps

Bette

Hi Bethany!

Nice to see you. Hope it turns out to be nothing! Scar tissue can cause pain.

I get stabbing type pains from time to time.

If you would get SS disability, medicare isnt available until you are on it for 2 years. they usually will backdate it for 6 months so that still would make you wait for 1 1/2 years for medicare insurance. How about asking at your treatment facility or asking your doctor directly if they have any programs to help people without insurance. Many places will have programs to help uninsured patients but too often they wont offer them, you have to ask.

If this pain is bothering you please dont wait too long to get yourself checked out.

Good luck!!

I had jaw surgery 25 years ago (unrelated to my cencer) I get a muscle spasm just under my chin every once in a while. they are fairly painful and can last for 15 or 20 minutes. After it goes I still feel some pain for up to an hour afterwords. My doctor said it happens some times and they have no way to stop it. I just massage it myself which helps alot.

Yup happens to me ocassionally - not often but every once in a while.

Oh yeah I get wicked neck cramps, locks my jaw up and makes it look like I'm having a seizure.

Has gotten better with time and the more P/T I do and making sure I'm hydrated.

John gets them in the side of his neck when he yawns. They stop him in his tracks they are so painful.

Hmmm..I get something that I have referred to as my tongue swelling, but after reading this thread, maybe a spasm is a better word for it. It happens every so often and only lasts a couple of minutes, but it really effects my speech when it happens. There doesn't seem to be any rhyme or reason for it, but it is annoying and often embarrassing when it happens.

My experience is like that of Wanda's husband Slim. A shooting pain when I yawn, but it goes away. I hope you get some relief, Beth!

I get the spasms in my tongue especially when I yawn.

Yep. I had a neck dissection three years ago and I still get a cramp under my chin when I yawn. Like stated above, I learned some self-messages in PT that help but like my right ear being numb, chalk it up to the side effect of them taking a mellon baller to the right side of my neck.

Bethers...FYI it takes 29 months to get Medicare from the date of your approved disability date for SSDI, when under age 65. Good luck with the exercises.

[quote=bethers0808]For the last week or so, I started getting these spasms, like a charlie horse, that are in my chin area, that feel like it is the bottom of my tongue, or maybe a muscle near the incision that they removed my lymph nodes from. I am thinking it is more the bottom of my tongue, but I am not sure. It has usually been doing this once a day, but today, I did an walking exercise dvd, and it did it for about 30 minutes after that, and now still hurts, but at least isn't spasming.
Has anyone else experienced this, or know of anyone else who has? I don't have insurance right now, but I finally got paperwork to do disability again, and may have medicare when that goes through, but so up in the air about everything I am not sure. I have been out of treatment since July 2010, and I don't know what is going on with this, but I don't like it. [/quote]

First, everyone should have regular massage for any muscles cramping like this for just comfort. Not deep tissue but Swedish massage works best. Find a massage school. I used one in KC and had weekly massages for $10. You can ask about advanced certifications and find someone certified in neuromuscular massage techniques or a chiropractor that utilizes ART and is certified. A good PT can do fascia massage using fascia cream a get it all loosened up for better blood flow but as soon as you get into a/c it usually seizes up. This is an issue that is lifelong but easily managed.

Second, technically you qualify for Medicare 24 months after your award date for disability. You should use your diagnosis date for the disability date. If you were on before it is a totally different process and even if you have passed your 48 month trial work period, there is a special process called EXR ( Expedited Reinstatement Process) that most local offices don't seem to know and if your refilling is because it is related to your original award, you will receive payment immediately while being processed. The process is designed to burn you out, deny you and make you go away. There are "specialists" to represent you and the govt pays for them for appeals, hearings, etc. and they are usually well connected with Administrative Hearing Officers/Judges, etc. I can give additional info on this if anyone wants to MSG me.

Managing symptoms is a lifelong process but without treatment that won't be long so understand there were no other options and work towards resolving issues. The Livestrong Foundation has a program in many places called Livestrong at the Y in partnership with the YMCA and you get a six week rebuilding regimen designed by Stanford that is a modified Pilates free for any cancer survivors and the trainers are certified in this. During this time your entire family gets a free membership as well. The classes are usually two times per week and you come prior to, work out and then do a group stretching/modified Pilates routine afterwards.

Not managing the fibrosis will cause you years of suffering as the muscles just glide. Find someone who understands scale ex in the neck. Those muscle groups can cause referred pain even in your feet. They need to be massaged out or disentangled if you will or you will have numbness and tingling somewhere.

I am a resource for all of the above unfortunately.

Be well but be diligent!

Ed

[quote=Uptown]Not managing the fibrosis will cause you years of suffering as the muscles just glide. Find someone who understands scale ex in the neck. Those muscle groups can cause referred pain even in your feet. They need to be massaged out or disentangled if you will or you will have numbness and tingling somewhere. [/quote]

I apologize because I was using an iPad to access the Forum and it outsmarted me. What the above should say:

...muscles must glide. Find someone who understands scalenes in the neck.

I hope this makes more sense. The scalenes are a group of muscles in the neck that involve lots of nerves and can cause referred pain throughout the body and are usually the cause of your pain in the neck but can create pain or numbness or tingling in just about any limbs. Someone that understands them will understand how to minimize issues with them. The neck where we all get radiated is the nerve highway and you would be amazed at what other issues you can chase for no reason. I traveled the path ahead of you so you don't have to!

-Ed