New guy here, with a question.

caffinated1

Hello fellow travelers, 

I am in remission from nasopharyngeal carcinoma (ssc), since 9/12. Have had neck and tongue muscle spasms ever since then which ive pretty much learned to deal with, they still suck but ive learned to deal with them. Recently i've had a sore throat. Not your basic "sore throat" this is like having an ice pick below my adams apple every time i swallow or clear my throat. Has anyone here or known of such? My ENT doc give my nyostatin which is "sorta" helping but not so much.

 

 

Thanks 

phrannie51

Hi and welcome, caffinated!!

I too had NPC...I also finished treatment in August of 2012.  I didn't get the neck cramps until just this last June, and like you I just deal with them.  Lots of people get them, so they didn't scare me (I'm a worry wort, type) when they started.  I get tongue cramps when I'm cold to bone, but never any other time.  So basically, I know as soon as I warm up, it'll be gone.

As for the stabbing pain in my throat....unless it is caused by thrush, then nystatin isn't going help it.  Chances are it's not cancer, but anything new is worrysome.  Are you scheduled for any scans in the near future?  Just thinking a scan would take the worry away, and maybe show a fibrotic tendon or something causing the pain.   Does it hurt every time you swallow?  Does it lessen as you contine to eat?

p

caffinated1

phrannie51 said:

Hi and welcome, caffinated!!

I too had NPC...I also finished treatment in August of 2012.  I didn't get the neck cramps until just this last June, and like you I just deal with them.  Lots of people get them, so they didn't scare me (I'm a worry wort, type) when they started.  I get tongue cramps when I'm cold to bone, but never any other time.  So basically, I know as soon as I warm up, it'll be gone.

As for the stabbing pain in my throat....unless it is caused by thrush, then nystatin isn't going help it.  Chances are it's not cancer, but anything new is worrysome.  Are you scheduled for any scans in the near future?  Just thinking a scan would take the worry away, and maybe show a fibrotic tendon or something causing the pain.   Does it hurt every time you swallow?  Does it lessen as you contine to eat?

p

I just had a CT in july and

I just had a CT in july and my ENT rhinoscoped me just after that. All clear. A couple weeks ago the pain started to get a little more severe. It had been there pretty much as a ugly reminder off and on since the "treatment" were done. Why it's being even more intense is a question i'd like to have answered. I already hate that i can't enjoy most of the foods that used to (anythings better than eating through a peg tube though, ANYTHING!) I just want to be able to swallow without it hurting.

Don't cha' just love those tongue cramps! Holy cow those suck! When I get them at work (i run heavy equipment) it's an automatic five minute time out. Funny thing is they all last about the same amount of time, are just as annoying as the last. Have you ever looked at your tongue in the mirror when it's happening? Freaky, one side all curled up....ewww ugly thoughts, well, more painful than ugly.

Heres to your remission!!

wmc

Welcome to the H&N Group

Have they done a throat swallow test on you. That is where you swallow barium and they film it like an xray. It will show it there is a blockage or ever a bone spur hitting your throat as you swallow as was my case.

debbiejeanne

hey, i just want to say,

hey, i just want to say, "welcome to our family"!  congrats on being in remission.  i hope you find relief for that pain.  i know since having cancer, i am a baby when it comes to pain.  let us know if you find something that helps.

God bless you,

dj

caffinated1

wmc said:

Welcome to the H&N Group

Have they done a throat swallow test on you. That is where you swallow barium and they film it like an xray. It will show it there is a blockage or ever a bone spur hitting your throat as you swallow as was my case.

That would make a lot of

That would make a lot of sense, i'll talk to my ENT next week about that., i've had trouble swallowing ever since they started radiation. Would love to eat a big fat juicy cheese burger again (well after i smash it so it'll fit in my mouth..did radiation affect your jaw muscles too?)

KB56

caffinated1 said:

That would make a lot of

That would make a lot of sense, i'll talk to my ENT next week about that., i've had trouble swallowing ever since they started radiation. Would love to eat a big fat juicy cheese burger again (well after i smash it so it'll fit in my mouth..did radiation affect your jaw muscles too?)

Jaw

yep!  i would have to smash it down a bit bit it is definitely not as wide as before.   I can still knock out a burger, just smaller bites!

wmc

caffinated1 said:

That would make a lot of

That would make a lot of sense, i'll talk to my ENT next week about that., i've had trouble swallowing ever since they started radiation. Would love to eat a big fat juicy cheese burger again (well after i smash it so it'll fit in my mouth..did radiation affect your jaw muscles too?)

NO I only had surgery

My tumor was just above my vocal cords and I have bad lungs, Stage 3 COPD so the only choice I was given was removing my larynx and breath thru my neck to survive the surgery. I never had chemo or radiation. When they took my larynx they got all the cancer and them some. Took 86 lymph glands in my neck so my neck is a little stiff at times. I have to take muscle relaxers daily and pain pills too. They cut my neck from ear to ear so one side is numb and the other is not. Next month will be my two years NED. 

Bill

 

caffinated1

KB56 said:

Jaw

yep!  i would have to smash it down a bit bit it is definitely not as wide as before.   I can still knock out a burger, just smaller bites!

Lots and lots of little bites

Lots and lots of little bites and about a gallon of water/tea/beer to flush it down. Either way, that plate is getting cleaned. Do you have a problem eating any kinds of meats (whole, like steak, not burger) and French fries? What the hells up with that? It's like I have a stopper in my throat now that decides how long I have to chew something before I can swallow...I'd end with lol but it's more pia.

caffinated1

wmc said:

NO I only had surgery

My tumor was just above my vocal cords and I have bad lungs, Stage 3 COPD so the only choice I was given was removing my larynx and breath thru my neck to survive the surgery. I never had chemo or radiation. When they took my larynx they got all the cancer and them some. Took 86 lymph glands in my neck so my neck is a little stiff at times. I have to take muscle relaxers daily and pain pills too. They cut my neck from ear to ear so one side is numb and the other is not. Next month will be my two years NED. 

Bill

 

Old school doctor Jekyll on

Old school doctor Jekyll on you, wow. hats off to you. Mine was stage 3 at the base of my nasal passages and so far I'm med free thank god, my kitchen looked like a junkies dream for the longest time, the only thing I take now is prevagen to help soak up my brain fog ( seems to be working). Whew, ear to ear. 

MrsBD

caffinated1 said:

Lots and lots of little bites

Lots and lots of little bites and about a gallon of water/tea/beer to flush it down. Either way, that plate is getting cleaned. Do you have a problem eating any kinds of meats (whole, like steak, not burger) and French fries? What the hells up with that? It's like I have a stopper in my throat now that decides how long I have to chew something before I can swallow...I'd end with lol but it's more pia.

Lots and lots of little bites

Isn't it the oddest thing? I can swallow just fine most of the time and I don't need water with every bite, but there is something that makes me chew and chew and chew before swallowing. My family knows they should just leave the table when they're done because Mom will be a while. It must be a protective function God built into us to keep us from choking. Welcome to the CSN group, by the way.

caffinated1

MrsBD said:

Lots and lots of little bites

Isn't it the oddest thing? I can swallow just fine most of the time and I don't need water with every bite, but there is something that makes me chew and chew and chew before swallowing. My family knows they should just leave the table when they're done because Mom will be a while. It must be a protective function God built into us to keep us from choking. Welcome to the CSN group, by the way.

Chewie

one little bite of roast beef can take days or so it seems to reach that "swallowable stage" I now know how it feels to be a cow chewing it's cud. Most of the time my meals center around gravy soup and ice cream. A lot of that is because it really does wear you out chew chew chew chew chew 

Kent Cass

debbiejeanne said:

hey, i just want to say,

hey, i just want to say, "welcome to our family"!  congrats on being in remission.  i hope you find relief for that pain.  i know since having cancer, i am a baby when it comes to pain.  let us know if you find something that helps.

God bless you,

dj

I wonder

In your first post to start this thread you referred to "Nyostatin," but I think you meant Nystatin, which is commonly used to combat Thrush, one of the side-effects we have to watch out for? I'm over 6-1/2 years out, so my memory might be a bit cloudy on the subject, but it seems if your ENT prescribed it he/she must think you have some sort of bacterialogical breakdown/infection in the spot in your throat where the pain is, and the nystatin is for that. I vaguely remember a liquid Nystatin swish and swallow, I think, to prevent the Thrush. Granted, this might not apply to you, but I'm not sure what Nyostatin is, but Nystatin is well known of.

I was on Hydrocodone for quite awhile, post-tx, but it did wonders for me and the pains that developed with the side-effects. Currently am on Baclofen and Clonazepam for neck spasms and under a Neurologist's care. Spasms continue, but the knee-buckling ones stay away, now.

kcass

caffinated1

Kent Cass said:

I wonder

In your first post to start this thread you referred to "Nyostatin," but I think you meant Nystatin, which is commonly used to combat Thrush, one of the side-effects we have to watch out for? I'm over 6-1/2 years out, so my memory might be a bit cloudy on the subject, but it seems if your ENT prescribed it he/she must think you have some sort of bacterialogical breakdown/infection in the spot in your throat where the pain is, and the nystatin is for that. I vaguely remember a liquid Nystatin swish and swallow, I think, to prevent the Thrush. Granted, this might not apply to you, but I'm not sure what Nyostatin is, but Nystatin is well known of.

I was on Hydrocodone for quite awhile, post-tx, but it did wonders for me and the pains that developed with the side-effects. Currently am on Baclofen and Clonazepam for neck spasms and under a Neurologist's care. Spasms continue, but the knee-buckling ones stay away, now.

kcass

Nystatin

yeah, you caught my mis spell for the day. I've been on meds for acid reflux and it didn't seem to be that when he scoped me last week so he tried the nystatin in case it was fungal. Neck cramps too huh, yeah they suck. They suck the suck out of suck and suck some more just because they suck. I was on clonazepam but stopped taking it, makes me too loopy for work. So we'll see how well I can do this winter when they rear their ugly heads. The pain in my throat has tapered off a good deal with the nystatin and Tylenol.