I am currently experiencing what I call Burning Tongue Syndrome, which is aggravated by talking and by eating anything acidic. I am 8 months post surgery. I would like to hear from anyone who has not had radiation who has had a similar experience, and any suggestions of a remedy.
Thanks.
Marni

Marni;
Does it burn all the time or just when you eat acidic foods? Not to scare you but it's probably worth mentioning to your ENT if it burns constantly. Could be some of the nerves coming back from the surgery but better to be safe.

Best of luck,

Steve

Mami
I had both surgery and radiation, and experience the same burning sensation of and on. For me it's not just acidic foods, although they account for the problem most of the time.

Certain spices also set it off, and the only thing that seems to help for me, although not all the time is flat club soda. I try and keep an opened bottle of it in the refrigerator (for me, ice cold is the best) and just gargle and swish it around in my mouth.

As Steve suggests, I think it's primarily the nerves regenerating after surgery, and becoming a bit hyper-sensitive. I had a free flap taken from my forearm and have a hpersensitivity problem on my wrist that the occupational therapist is working on.

With my wrist, the strategy is to desensitize the area gradually by exposing it to a variety of textures, from very soft to coarse.

My mouth seems to respond in a similar way. Initially, it seemed like almost anything would set off the "fire", but now it's a little less likely to occur with a lot of things.

Do you/did you have a gastro tube for nurishment? I didn't and I wonder if the complete lack of taking food in through your mouth for extended periods may contribute to the problem.

I tried to eat at least a little bit throughout treatment, so I think that may have helped a bit.

Let us know how you make out, O.K.?
Wayne

Stage IV SCC left mandible. Removed 40% of jaw and reconstructed with titanium and fibula, free flap from forearm June 06. 30 treatments IMRT August, September 06

Marni, I have that too. I had tongue surgery then radaition and have had problems swallowing since so still get most of my nutrition through the tube. The swallowing issues are not helped by the tnogue being so sensitive to anything acidic, although I think it hasn't been desensitized either because I donm't swallow enough. I think it is a nerve that is just kid of permanently firing off differently after the surgery. It has actually showed up on both my PET scans but because there has been no change, the person reading the san does not think it is a sign of any kind of recurrent cancer and since I've had it since surgery (but it was aggravated by radaition), it no longer worries me.

Nelie

I forgot to say that I gargle a lot with Biotene mouthwash and even though that can feel at the time like it also "burns", it seems over time to reduce the other tongue pain.

My oncologist attributes it to nerve regeneration. I live in Canada and recently discovered that my tongue is sensitive to cold weather as well. My main issue is trying to get relief from the burning, which can last for quite a while. I recently returned to work part time, and am experiencing the burn after talking more than usual. I will try the flat soda water.
Thanks for your responses.
Marni

Mami,

Hi! One of the things that was a big burning problem for me was Fungi infection. (Thrush) Due to Dry Mouth I get it real easy.

It took me over a month to find out that was what was going on. I thought I had more cancer sores.

So you might want to see about that.
Take care.
Diane

Mami
I had both surgery and radiation, and experience the same burning sensation of and on. For me it's not just acidic foods, although they account for the problem most of the time.

Certain spices also set it off, and the only thing that seems to help for me, although not all the time is flat club soda. I try and keep an opened bottle of it in the refrigerator (for me, ice cold is the best) and just gargle and swish it around in my mouth.

As Steve suggests, I think it's primarily the nerves regenerating after surgery, and becoming a bit hyper-sensitive. I had a free flap taken from my forearm and have a hpersensitivity problem on my wrist that the occupational therapist is working on.

With my wrist, the strategy is to desensitize the area gradually by exposing it to a variety of textures, from very soft to coarse.

My mouth seems to respond in a similar way. Initially, it seemed like almost anything would set off the "fire", but now it's a little less likely to occur with a lot of things.

Do you/did you have a gastro tube for nurishment? I didn't and I wonder if the complete lack of taking food in through your mouth for extended periods may contribute to the problem.

I tried to eat at least a little bit throughout treatment, so I think that may have helped a bit.

Let us know how you make out, O.K.?
Wayne

Stage IV SCC left mandible. Removed 40% of jaw and reconstructed with titanium and fibula, free flap from forearm June 06. 30 treatments IMRT August, September 06

Marni, I have that too. I had tongue surgery then radaition and have had problems swallowing since so still get most of my nutrition through the tube. The swallowing issues are not helped by the tnogue being so sensitive to anything acidic, although I think it hasn't been desensitized either because I donm't swallow enough. I think it is a nerve that is just kid of permanently firing off differently after the surgery. It has actually showed up on both my PET scans but because there has been no change, the person reading the san does not think it is a sign of any kind of recurrent cancer and since I've had it since surgery (but it was aggravated by radaition), it no longer worries me.

Nelie

I forgot to say that I gargle a lot with Biotene mouthwash and even though that can feel at the time like it also "burns", it seems over time to reduce the other tongue pain.