Jaw Pain

Azpaul50

Hi!  i had a laryngectomy last October and have experienced jaw pain ever since then.  It is much like First Bite Syndrome where severe jaw pain comes with each "first" bite of a meal and subsides through the next few bites until gone.  My situation is a bit different because I have a chronic underlying jaw pain most of the time at the 3-4 range.  The bursts of pain were more random over the first month but now conforming more to the "first bite" profile.   The "electric shots" are definitely 10s on the right side.  Commentators say that the syndrome comes after nerves are cut for various reasons.  My "accessory" nerve was cut for the laryngectomy.  I take gabapentin and hydrocodone 10/325 which manages it fairly well but certainly isn't curing it.  What I find written about the syndrome says it sometimes does disappear but most times doesn't.  I currently have a PEG tube and find that using it is usually preferable to actually eating (and the pain).  The PEG will go away sometime in the future and I am hoping that someone has seen a solution somewhere before that happens.  Any experiences?  - Paul

supagama

I feel your pain!

Yes, I too have severe jaw pain, after radiation and chemo for cancer on my soft palate, with tumor on right lymph node.  I did not have surgery.  Mine started out more as "first bite syndrome" but has now progressed and I don't seem to get much relief from it at all.  It's definitely worse when I eat, though, and am waiting to have a PEG tube inserted.  My pain is right under my right ear and radiates out from there..to the back of my jaw, up into my ear and into the right side of my head.  I am taking hydrocordone and toradol for it, but it''s not nearly as effective as it used to be.  I was kind of bummed to hear that most times it doesn't dissapear, as I don't know how much more of this I can realistically take and the Drs. are kind of dumbfounded by it too.  They think I should be happy that the biopsy of the area showed no cancer (which I am), but this pain is worse than any of the initial side effects of the radiation.  I hope we can find some help for each other out there Azpaul50!  Anyone else??

Take care,

Wendy

Barbaraek

Paul and Wendy

I wish I had solutions for you...but the best I can do is offer my sympathies. I'm sure with pain like that it's hard to want to eat. Have you investigated any non traditional solutions like biofeedback, acupuncture? Do your facilities have any pain management teams that might be of help? Prayers for both of you..

Barbara

Kent Cass

Barbaraek said:

Paul and Wendy

I wish I had solutions for you...but the best I can do is offer my sympathies. I'm sure with pain like that it's hard to want to eat. Have you investigated any non traditional solutions like biofeedback, acupuncture? Do your facilities have any pain management teams that might be of help? Prayers for both of you..

Barbara

 

 

Azpaul50

supagama said:

I feel your pain!

Yes, I too have severe jaw pain, after radiation and chemo for cancer on my soft palate, with tumor on right lymph node.  I did not have surgery.  Mine started out more as "first bite syndrome" but has now progressed and I don't seem to get much relief from it at all.  It's definitely worse when I eat, though, and am waiting to have a PEG tube inserted.  My pain is right under my right ear and radiates out from there..to the back of my jaw, up into my ear and into the right side of my head.  I am taking hydrocordone and toradol for it, but it''s not nearly as effective as it used to be.  I was kind of bummed to hear that most times it doesn't dissapear, as I don't know how much more of this I can realistically take and the Drs. are kind of dumbfounded by it too.  They think I should be happy that the biopsy of the area showed no cancer (which I am), but this pain is worse than any of the initial side effects of the radiation.  I hope we can find some help for each other out there Azpaul50!  Anyone else??

Take care,

Wendy

Update

Wendy - Six months have passed and the pain persists.  I definitely agree that it seems to be First Bite Syndrome. I had no ear pain but the affected area has slowly widened.  I can feel a massin the region but nothing lit up with a pet scan.  i did have a suspected mass on the opposite side that biopsied as benign.  The addition of pain in my ear is mild right now but the jaw pain is bad enough to bang the tab as a distraction.  Gabapentin seems to have little effect and hydrocodone lowers breakthrough but that's about.  So far nobody claims this situation now that the original surgeon moved to California. What a mess!  Wish I could help.