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Tongue Nerve Damage After Neck Dissection

pogsfog's picture
pogsfog
Posts: 10
Joined: Sep 2013

I had robotic tonsil surgery (cancerous T3 N0 M0)  and total neck dissection - removal of 131 lymph nodes (no cancer)  ...since then I have Hypoglossal nerve damage - half my tongue is completely numb - when I stick out my tongue it points towards the dead - damaged side. The pain and discomfort are constant .  When just starting the day or when tired at end of the day I slur my words.  

This occurred in January 2012 my EX surgeon told me for months that my numb, dead tongue was from the "retractor"  he used during the surgery and THAT IT WOULD GO AWAY EVENTUALLY.  It hasnt gone away and  research tells me it is a known complication from the surgery done for lymph node removal during neck disection.

I left the surgeon because he was more concerned with being sued - which WAS the last thing on my mind.  His constant refusal to even discuss why I have such discomfort with my tongue became disappointing if not annoying.  I could handle the truth and chalk it up to collateral damage from the cancer surgery but I ended up getting a con job explanation - Any Doctor / Patient trust relationship is gone. 

Does anyone else have Nerve Damage after Neck Dissection?   

longtermsurvivor's picture
longtermsurvivor
Posts: 1762
Joined: Mar 2010

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's picture
pogsfog
Posts: 10
Joined: Sep 2013

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

longtermsurvivor's picture
longtermsurvivor
Posts: 1762
Joined: Mar 2010

Others will be along to talk in a bit.  Have faith.  Things take a long time to recover, but recover they do.  If you read my bio, I've bee through a whole bunch of treatment, for three different cancers of the orophaynx.  Lots of surgery, lots of rads.  Yet eventually most of my problems have resolved pretty well.   The lymphedema is par for the course.  It will improve.  The PEG tube, though an inconvenience, for most of us is temporary, or medium term.  There is life after all this.  Keep coming back, and there is no such thing as whining.

 

Pat

pogsfog's picture
pogsfog
Posts: 10
Joined: Sep 2013

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

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

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's picture
pogsfog
Posts: 10
Joined: Sep 2013

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

phrannie51's picture
phrannie51
Posts: 3627
Joined: Mar 2012

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

debbiejeanne's picture
debbiejeanne
Posts: 2280
Joined: Jan 2010

JC, what is Trismus?

dj

pogsfog's picture
pogsfog
Posts: 10
Joined: Sep 2013

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 

debbiejeanne's picture
debbiejeanne
Posts: 2280
Joined: Jan 2010

thank you.

dj

longtermsurvivor's picture
longtermsurvivor
Posts: 1762
Joined: Mar 2010

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

MarineE5
Posts: 746
Joined: Dec 2005

Pogsfog,

Here is a link to a post that I wrote some time ago for the gentle massage for Lymphedema and stretching exercises to help your neck. I too had to sleep in an inclined position for months but it has gotten better. I was taught this by a Cancer  Lymphedema Therapist, took about 4-5 visits to get it down. Give it a try on your own, if it doesn't help, then contact a Therapist to instruct you.

http://csn.cancer.org/node/196680

My Best to You and Everyone Here

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

JC,

Welcome to the H&N forum, you are over qualified (just kidding)

You have traveled a bumpy road, I am sorry for your bad experience with your doctor (as if all this wasn’t hard enough).

I completely used and drank 6 bottles of Magic Mouth Wash (5 to 10 mils a swish).  I hope it is not harmful, but at the time “I needed it bad”.

I hope your condition improves; maybe your next doctor will fill the bill.

Best always,

Matt

pogsfog's picture
pogsfog
Posts: 10
Joined: Sep 2013

 

Thank You Matt .... 

 

You are correct ...the Magic Mouthwash helps alot ..... I too hope its not harmful.

 

JC

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