Chemo Radiation? Nerve? Injury Burning Tongue

Hi Bunnymom,

I can relate to what you're experiencing - although through my husband. He still has intense pain in his throat - his treatments ended 2/5/15. His pain is not improving. The ENT can see what he's experiencing through the scope and thinks it's infection - so he's on antibiotcs for possible bacterial and fungal causes. The pain is as intense now (7 out of 10) as he said he had at anytime. He doesn't really get any relief with pain meds - esp not from ibuprofen, but even with a norco 7.5 - it just takes the edge off. It's frustrating. His voice is very deep and husky. He is not himself and just wishes he could feel somewhat like he did pre-treatment again. This new normal is not acceptable. I am looking for new possible ENT's in the area.

I am sorry to hear of your continued pain and burning. I really hope you get some relief soon. Just know that you are not alone. Sorry I couldn't be of any help with concrete advice. 

Bunnymom said:

Thank you for trying to help

Thank you for trying to help me Nancy. Your husband is only a couple of months post treatment. It will take time. Hopefully, the RX will help him too.

I'm 7.5 months out and have this burning and sometimes painful mouth and tongue. I'm looking for others out there who can offer some help or encouragement.

my doctors just told me it's going to take at least a year, maybe longer to recover. I never expected to hear this but hopefully this information will help you too.

Thank you for your encouragement. I do appreciate it. A year (or longer) is a very long time to be in this type of pain. I wonder if something like viscous lidocaine would numb it for you? Or a magic/miracle mouthwash with lidocaine/benadryl/maalox? I'm not sure what you've tried so far but hope you find something that helps!

Nancy

Bunnymom said:

I know...it's a long time

Nancy,

I have the lidocaine. I do use it sometimes. It's all so daunting. I know a year does seem like a long time and it is. I never thought it would take so long to feel better. It seems it comes gradually but it's not linear. Some days seem better than others. It's just a long process. I'm 7.5 months post treatment. When I look back even a few months ago, I can see that I'm better. I just have to get this burning tongue issues addressed. I hope there are other who can help too.

thank you so much for your post.

Could be thrush which is treatablle in a few days with the right drugs. I had it several times.

Bunnymom I'm glad tests show NED. I'll pray u'll find a solution soon for this pain.

Bunnymom said:

Mark: Tongue Pain

thank you so much for your message. This pain and burning has worried me and has made me feel depressed.

I don't think I have thrush. I just saw the docs last week and they said nothing about Thrush.

I'm sorry you've had to deal with this too but I'm also happy to find someone else who can relate to what I'm going through. What did your doctors tell you was the cause of your burning and pain?

The docs say it's a rad chemo injury. Or, it could be a nerve issue. I also have one spot that hurts and my tongue burns. There's nothing there, a little red but just hurts. 

How do you know the nerve in your tongue is dying? Was this diagnosed somehow? I can't stand it. I just need some relief. 

Please let me know..

The pain in your tongue was likely caused by radiation and not chemo. And like I said it was on and off for about 4 of the last five years for me. During radiation I wore a custom made mouth guard because I had 4 gold crowns (Since removed and replaced with zirconium crowns). I suppose it is possible that some of the rads reflected and bounced around to cause a couple super sensitive spots on the tongue but I just do not know. (I read somewhere that it could happen) I also had just one spot bugging me for years. It finally quit for now about 6 months ago. Use the magic mouthwash and orabase if needed. It works.

I really would not be alarmed by this as it is a very very common side effect. For the first 3 years after treatment I saw the same team of doctors every 2 months and informed them of the tongue issues and they assured me it was pretty normal. They scoped me every single time.

The dying nerve thing is a little different. Supposedly only 20% experience the nerve to start dying off. It is called the Hypoglossal nerve. It controls movement of the tongue. Not the same nerves that control pain, taste, and feelings. Just muscle control. After getting a bad fungal infection I noticed I was having trouble with coordination of my tongue while chewing food. At the same time i noticed i was slurring my speech ever so slightly but certainly definitively. Naturally I was pretty panicked and so initially they did an MRI which was clear. A month later they knew what it was but had to rule out a brain tumor pushing on the nerve so they did a pet scan. It came back all clear. Also did a swallow study that revealed that the muscles on the primary side pretty much are shutting down because the signal from the brain is not reaching them. That’s the nerve dying. So I am hoping that it stabilizes here and does not get worse. Sorry to carry on but i hope this helps. You are very early on and things should work out but there will be some pain at times.

MGC said:

Nerve Damage

The pain in your tongue was likely caused by radiation and not chemo. And like I said it was on and off for about 4 of the last five years for me. During radiation I wore a custom made mouth guard because I had 4 gold crowns (Since removed and replaced with zirconium crowns). I suppose it is possible that some of the rads reflected and bounced around to cause a couple super sensitive spots on the tongue but I just do not know. (I read somewhere that it could happen) I also had just one spot bugging me for years. It finally quit for now about 6 months ago. Use the magic mouthwash and orabase if needed. It works.

I really would not be alarmed by this as it is a very very common side effect. For the first 3 years after treatment I saw the same team of doctors every 2 months and informed them of the tongue issues and they assured me it was pretty normal. They scoped me every single time.

The dying nerve thing is a little different. Supposedly only 20% experience the nerve to start dying off. It is called the Hypoglossal nerve. It controls movement of the tongue. Not the same nerves that control pain, taste, and feelings. Just muscle control. After getting a bad fungal infection I noticed I was having trouble with coordination of my tongue while chewing food. At the same time i noticed i was slurring my speech ever so slightly but certainly definitively. Naturally I was pretty panicked and so initially they did an MRI which was clear. A month later they knew what it was but had to rule out a brain tumor pushing on the nerve so they did a pet scan. It came back all clear. Also did a swallow study that revealed that the muscles on the primary side pretty much are shutting down because the signal from the brain is not reaching them. That’s the nerve dying. So I am hoping that it stabilizes here and does not get worse. Sorry to carry on but i hope this helps. You are very early on and things should work out but there will be some pain at times.

 

That is very interesting about the Hypoglossal nerve; I too suffer from pain and spasms in the tongue just under the jawbone. I had radiation twice to my head and neck; everything was going great till a few years ago when it all stopped working and nothing the doctors do can help it. So I just live with it the way it is but every now and then I get a sock or something through the tongue from the dead nerve. I am hoping and praying that it will grow back and start working again, but who knows it might be worse. Will need to leave it all in Gods hand

Tim Hondo

You could use palmitoylethanolamide (PEA), I've seen this work wonders for this sort of pain. 

Its general prescription only through a naturopath or integrative doctor.