Tongue Nerve Damage After Neck Dissection

Although in my case the cause wasn't the neck disection, it was the rest of my surgery that did it.  I have had multiple treatments, and what got my tongue was the resection  of the floor of my mouth.  My tongue is as dead as can be on one side, atrophic and unhelpful for eating and talking.  My speech is ok, I can be understood over the phone if i speak slowly and enunciate as clearly as I can.  However, unlike you, I have no pain.  The pain you experience with this may have a treatment, that should be thought out carefully with the "experts."  You posted here mainly, I suspect, because you now figue your problem is permanent.  In that you are probably right.  I am now almost three years out from my surgery.   There's no fooling myselff this is going to magically go away.

Hypoglossal nerve damage is a rare, but known complication of radical neck disection.  It is infuriating when the surgeons response is defensive afterwards.  This indicates he is more concerned for himselff than he is for you, so you are right in finding someone else to do your care.  The good news is you are almost certainly cured  of disease.  Congratulations on that.  The bad news is both you and I have to carry on with a somewhat less than perfect result.

Best to you.

Pat

pogsfog said:

One thing after another

Thanks Pat for your response.  

The consequenses and side effects of treatment never seem to end.  

Right now because of the horrrific burn in my throat from Proton therapy I am using a PEG tube to get my nutrition. Even swallowing water is painful.   Nothing tastes the same and I use the tube exclusively.  I dont know how long (if ever) the radiation burn will take to heal .... Only good thing about this is I lost the weight I always wanted to lose .... and I got all new clothes. 

I also have problems with lymphedema of the face due to the radiation and lymph node removal -  I must sleep on an incline or else wake up looking like a Chipmonk.... LOL  -

Oh well at least I am here to complain about it .  

JC

I also had lymphedema early on and my insurance paid for neck massgae therapy. It did help and I was given exercises to do on my own. I was fitted for a padded neck garment to wear at night. It was helpful at first and still comes in handy on rare occasions (ex. after flying). Certainly worth looking into. There is help to be had so don't just settle for having lymphedema. My cancer was not of the tongue but my tongue did not avoid the rads.  I have found that 2 teaspoons of magic mouthwash is much better than 1t.  I noticed in another post that you mentioned trismus too. I thought I had it bad from my first rads but Mayo, where I am being treated for recurrance, noted it as a mild case. They did say I could possibly still regain some of the ability to open my mouth wide that I lost. Wish I had originally known about the exercise with tongue depressors. Just tape as many together as you can comfortably put in your mouth to stretch it without causing pain.  I just finished SBRT (rads) at Mayo and am now doing the exercises because I don't want to lose anymore ability. It was encouraging to hear that it is possible to regain some of what was lost.

Candi

pogsfog said:

Surgical Options for Trismus ?

Thanks Candi .....

I live on the Magic Mouthwash - though I DO NOT SWALLOW IT ... I use it quite often throughout the day ... and when pain is really bad I gargle with straight Lidocaine.  I am somewhat worried about how good this can be for my longterm health but it does help with the discomfort for the time being.  

Regarding the Trismus I purchased the TheraBite Device to help me ... though I find it difficult to even fit in my mouth and truthfully havent used it that much.  I removed all my teeth before the radiation and cannot even open wide enough to fit the dentures in.   

Is anyone familar with surgical options for Trismus ? 

 

JC

I can't remember of anyone on here having surgery for trismus, at least as long as I've been here....but it appears that there is surgery to help.

http://www.ncbi.nlm.nih.gov/pubmed/17767087

p

pogsfog said:

One thing after another

Thanks Pat for your response.  

The consequenses and side effects of treatment never seem to end.  

Right now because of the horrrific burn in my throat from Proton therapy I am using a PEG tube to get my nutrition. Even swallowing water is painful.   Nothing tastes the same and I use the tube exclusively.  I dont know how long (if ever) the radiation burn will take to heal .... Only good thing about this is I lost the weight I always wanted to lose .... and I got all new clothes. 

I also have problems with lymphedema of the face due to the radiation and lymph node removal -  I must sleep on an incline or else wake up looking like a Chipmonk.... LOL  -

Oh well at least I am here to complain about it .  

JC

If lymphedema gets too bad they can fit you with a mask.  Georgebaltimore has a picture of him wearing one.  you can find him by doing a membersearch.

Pat

pogsfog said:

Trismus = Inability to open

Trismus = Inability to open mouth fully due to atrophy cause by the radiation I received.   Cant open my mouth that wide ....had teeth removed before radiation and now cannot even fit my dentures in my mouth 

 

Condition is also know as LOCKJAW.

 

JC 

thank you.

dj