Nerve Pain

Good evening Ariel, how long ago did you have this operation done as i know it can take a while for nerves or nerve endings to settle down, sometimes its best to see if it recovers or the pain goes away rather than lose the nerve altogether. I dont know anything about Lyrica but if it is giving you bad side effects and not helping with the pain then maybe you need better stronger pain relief. A speech therapist might also be able to help with exercises that help nerves and muscles. Maybe arrange an appointment with your consultant to see how long the pain will continue. All the best.

                                                              Chris x 

The ENT who did my surgery said it is impossible to predict how long I will have the pain or whether it will ever get better. My lingual nerve was injured. The answer has been just take more medication or cut the nerve. I made an appointment with a nerve specialist in Chicago for next week if I can take the side effects of the medication that long.

Oh Ariel, so sorry you are in such a situation. Neuropathic pain is very difficult to deal with as you know. Have you explored supportive therapies like CBT and hypnosis. The consequences of sectioning the nerve are very drastic. Has your consultant explained what they are?

Sort of but I am interested in what you think the consequences will be?

Hi Ariel. I’m not a doctor but an ex veterinary surgeon. 
I know the areas of the face and mouth that the facial nerve supplies. All the muscles of expression, The eyelids and tear gland and taste sensation to the tongue.All if these would be compromised and permanently. 
I met a chap while waiting for an appointment at my clinic once who had his facial nerve damaged during surgery. His whole face dropped on that side and he lost the sight of his eye because he couldn’t close it and there were no tears. 
I hasten to add that this is something you have to discuss with your own clinicians. 

Mine would just be the lingunal nerve so it would mean no more taste or feeling on the left side of my tongue but would not affect my face in anyway 

Hi Ariel. Yes you’re right - the lingual nerve is sensation to the tongue on that side. Damage to any nerve of sensation can (rarely -I’m sorry it’s you)  result in ongoing and long term nerve pain. I know this because I am an Oral Surgeon and damage to the lingual nerve is something that can occur when I remove wisdom teeth. We would aim to get a patient with a damaged lingual nerve to see a Specialist asap so that a decision can be made about whether repair of the nerve is possible (usually as early as possible) or  whether it will need to be managed with drugs - lyrica or one of several other options - or other therapies - see Dani’s post.

Because yours is nerve damage from cancer surgery I expect they may not have thought about repair - I mean we’ve got/had cancer, why wouldn’t you just accept your outcome without being offered treatment for life-affecting nerve pain (sorry, sarcasm)!! IN the UK lingual nerve repair would be undertaken by a Maxillofacial Surgeon or Oral Surgeon with a specific interest in lingual nerve repair - maybe even a Plastic Surgeon. Do ask about repair, but I expect you won’t be suitable.....So push for other therapies, but it needs to be managed well as this is a significant thing for you to be living with.Good Luck with the specialist and fingers crossed this nasty occurrence  improves on its own. 

Hilary

What about a neurectomy if it is not repairable? I have an appointment with a top plastic surgeon on November 3? Hoping he can do something but I would rather have a numb tongue than constant pain or my whole body feel like crap from the lyrica 

It must be horrendous. I’m so sorry that you’ve had to face this in order to save your life. I would certainly be guided by the medics and you can always get a second opinion from another expert. It has to be your decision though not theirs; an informed decision. 
Let us know how it goes if you’re up to it. 
I'll have a look through previous posts to see if there’s anybody else here in a similar position. 

I found this but it’s from a long time ago. I Don’t know if any of this applies 

community.macmillan.org.uk/.../lingual-nerve