Don't know what to do anymore

Hi Tonita

I had a stage 1 SCC on the underside of my tongue removed in Nov 2017 with a wide resection done in Feb 2018.  With the wide resection they removed a large area and went pretty deep to be sure the margins around the cancer were large enough.  They stitched it all back together and I ended up with a piece of skin hanging from the side of my tongue that I bit all the time when eating and I also have a tightness and pulling sensation under that side of my tongue.  I don't experience any pain with this thankfully.  

I decided to go and see another ENT a couple of months after this surgery who specializes in reconstructive surgery about the skin on the side of the tongue and he told me that he would need to open the surgical area to remove this skin (rather than just cut it off) and take a flap of skin from another area of my body to attach to the underside of the tongue to close it up.  This would probably also have alleviated the tightness I was feeling based on how he was describing the procedure.  He did tell me that I would have numbness where this skin flap was going to go so I would be trading one thing for another.   I thought about it for a couple of months and in the end opted to not have it done because the skin at the side of my tongue actually decreased in size over the next couple of months and is no longer in the way of my teeth and I was not experiencing pain.  I do still have the tightness and pulling sensation but I have gotten used to it. 

Anyway,  I am with wbcgaruss on this in that maybe another ENT could give you another opinion and figure out why you are having pain and maybe correct it.  I know what I experienced isn't what you are experiencing but I really felt that this ENT who did reconstructive surgery was going to be able to help me if my situation hadn't corrected itself to the point where I could tolerate it.

You are in a tough place dealing with pain all the time. It can wear you down and it sure gets old. You've certainly done your due diligence in seeking out surgeons and it seems they all say the same thing "it is what it is and we can't really see a way to change it" (your condition). So it seems you have to decide do you still want to seek out other surgeons or not. And in the meantime get with someone who does pain management. There must be other meds you can take such as aspirin or in my case, I take the liquid aspirin you get OTC at the drug store. Or tablets but depending how big they are I crush them and take them with apple sauce. How about oxycodone I have some here at home I take occasionally but it is pretty strong and I am guessing you may be able to control your pain maybe with 1/2 tablet maybe. Hydrocone is another so I guess my point being get with a pain management specialist if this is to be your lot in life now. Control it if you can as it will make you feel so much better. and in the meantime maybe search for another surgeon. How about a speech therapist. I will be getting swallowing exercises when this Covid-19 thing subsides to help me swallow as good as possible out at the health campus maybe they could help you with some type of oral or neck exercises. Don't give up because the next person you talk to about this may have an answer or give you a lead for a solution. We feel for you and I wish I could help my thoughts are with you- best wishes-Take Care-God Bless

Check this lady's story---https://www.mdanderson.org/publications/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

Tonita said:

My pain is relentless and

My pain is relentless and constant.  Feels like a burnt tongue only all the time...

Have you tried Gabapentin? Used for neuropathy, and "burning mouth syndrome" among other things.

Understand why the DEA got rid of pain pill mills, but that is no reason that cancer surviors should be in pain.  There are legitimate pain clinics that can help.