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Hypoglossal Nerve Damage----Help!

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Hello Ladies,

When I had my tissue expanders implanted in November I came out of the anesthesia with a problem with my tongue. I did not have full movement and it draws to the left. I thought it was swollen, but turns out that the intubation for anesthesia caused damage to my hypoglossal nerve that 'innervates' the tongue.

Everything I have read says it is self resolving, usually within a few days. Well, it's about 7 weeks and my improvement has plateau'ed. I have a lisp, eating is difficult, speech is difficult, saliva kind of 'pools', and if food gets into a certain area of my mouth I cannot move my tongue to dislodge it. I have lost 10 pounds (silver lining, I guess) because eating has become such a chore.

Has anyone else experienced this or heard of anyone who has?? I decided to give it 8 weeks and then see if my PCP will refer me to a neurologist or maybe a speech therapist. I make my living over the phone, so I need to be able to speak clearly. My anesthesiologist says its rare and self-resolving, my PS says he has never had a patient suffer this type of problem, my general surgeon had to look it up and says the literature offers no treatment, just says it will self-resolve. Some of the websites I visited said that the damage could lead to atrophy of the tongue----yuck!! All my docs will check with colleagues and give me any guidance they can come up with, but it is really getting me down.

Your thoughts/insights would be appreciated.

Chickadee

newlife2011
Posts: 40
Joined: Dec 2010

I am so sorry Chickadee to hear about this. I used to work in surgery and I wonder if who you shouldn't contact is the anesthesiologist who was on your case. At least the anesthesiologist dept to answer those questions. They would be the ones to deal with that on a regular basis.
The last time I had surgery I received a direct bill right from my anesthesiologist so that made it a bit easier for contact purposes.
Sorry I cannot be of much more help than that...good luck , I send my best wishes for a quick recovery!

Wendy

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Never heard of this Chickadee and I am so sorry. I hope your doctors can figure out how to help you. Hoping that it will clear up on its own as they said.

Be sure and let us know anything,

Megan

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Thanks Ladies.

I spoke to two anesthesiologists and today I went to my PCP for a referal to a neurologist. Hopefully he will have some suggestion for how I can regain full use of my tongue.

[Do you think my husband maybe prayed for me to use full use of my tongue since it can be a little sharp once in awhile??] :+)

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

LOL! Hoping that the neurologist will be able to help you with this. Keep us posted.

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Thanks Ladies.

I spoke to two anesthesiologists and today I went to my PCP for a referal to a neurologist. Hopefully he will have some suggestion for how I can regain full use of my tongue.

[Do you think my husband maybe prayed for me to use full use of my tongue since it can be a little sharp once in awhile??] :+)

creampuff91344's picture
creampuff91344
Posts: 989
Joined: Nov 2008

Please check to see if you were given Reglan during your surgury (sometimes given in IV to help with nausea), or if you were prescribed the pill form to help with nausea during chemo. This has similar side effects (uncontrolled tongue movement, neuropathy of the tongue, etc). Just wanted to pass this along, just in case. Hugs, Judy

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Thanks Judy. No, I didn't get Reglan with my chemo, but I don't know about during surgery. When I talked to the anesthesiologists they didn't mention that.

I appreciate the info. I'll ask the neuro to check that.

Chickadee

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Update us on your appointment with your neuro Chickadee. Praying he finds an answer.

Hugs, Debby

rhs33
Posts: 1
Joined: Oct 2012

Chickadee1955 I've been searching all over online for someone else that has gone through this. I had a hip surgery and woke up with this hypoglossal nerve injury. Sounds like we've had very similar situations. How are you doing now? I see this is over 1.5 yrs ago now, I'd love to hear an update. I'm about 4 months out from my injury and think it would be great to hear more about your situation. I hope all is well. Please feel free to contact me at anytime. Thank you!

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?   

Cricket64
Posts: 63
Joined: Sep 2013

After about the third chemo injection, I developed, for what of a better word, nuropathy of the tongue.  My moves find, hasn't affected speech pattern, but any thing from wine, to a slightly spicy food, wooooo

Good luck to all of you, for me, its two years since chemo ended, and tongue hasn't gotten better.  If you heard of a treatment that might be helpful, please post

 

 

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