Hi all,
So i'm almost 1 year since my mandiblectomy and still dealing with some pain. It is managed by pain meds (oxycodone). The way my mouth feels is that it's like a numbness or like needles prickling around my lip and chin area. Also the pain meds help me speak clearer because it manages the pain. I have some stiffness too but that doesn't really bother me.

I'm sure it's not just because of the surgery. I think it's from all the radiation i've had and well we know that doesn't heal that great after surgeries.

Am i alone in this? How do folks manage without the relief of pain meds? And I'm not even done with my reconstruction so more surgery for me. I think it's minor compared to my jaw removal/replacement.

I don't know, i guess when you hear mags/media about pain meds being a problem so it just make me feel worse that i even have to take them. .

is that what people really do? they are off pain meds just like that after major surguries on top of having radiation???

i also wonder if others are affected by altitude changes as well. In other words, i get swollen or more pain if i go to mountains or go on a plane. I will adjust and it will subside. but still, it happens so some days i feel better than others.

Hi Lola! Ive wondered how you were doing so Im glad to see you checked in.

My doc explained the need for pain meds to me several years ago. He said as long as you are taking them as prescribed for legitimate pain then a patient will never become addicted. Its being used as it was intended and not for a quick "high". A patient can become dependent on pain meds which is not the same as addicted. Heres some more info about this subject....

NIH addiction vs dependence of pain meds

About the altitude sickness, Ive been affected by it too. Maybe because after battling cancer and going thru brutal treatments, recovery is not an easy road. Maybe that makes survivors/patients more susceptible to the effects of altitude? One major factor is being hydrated. From what the ER doc told me, I was getting dehydrated which played a big part in why I was affected so much by the height. Planes dont bother me as long as I pay attention to my intake.

Hope this helps you.

Be well

Lola, read your post and just wanted to let you know you are not alone with the pain medication. I completed chemo and radiation over a year ago and still take oxycodone. I hate it every day and constantly worry about being hooked on it.

My Doctor and my husband keeps telling me not to worry about that right now, if it is needed it's needed and we can deal with that later. But with all the press out there talking about the overuse it makes me feel guilty or ashamed that I do take it. On top of that, the hassle of getting refills. Having to go to the doctor office to pick up the written script and taking it to the pharmacy. And, heaven forbid if it the weekend and you try to get it a day early the insurance company steps in and denys early filling. I

I have a history of 7 back fractures and multitudes of kidney stones for which oxycodone is prescribed so the doctor writes the script for more than I take on a regular basis to therefore have back up if needed. Which I have only had to use twice thank goodness. Some days I feel so sad about still having to take it as I always have had a very high pain tolerance and could deal with anything. But like you, the numbness and pain is just more than you can handle. Please hang in there and just concentrate on getting healed. Stay in touch with us !

Lola -

I actually have experience both ways. After my first set of surgeries and follow up radiation and chemo treatments, I was determined to move forward without the use of any pain medication. And I did for 17 years. The pain was there everyday, constant, and I found ways to deal with it. (Mostly ignoring it.)

When the SCC reoccurred, almost three years ago now, I started taking pain medication. I took the medication through the surgeries and radiation treatments.

I still take liquid oxy on a daily basis. I strictly follow the dosing recommendations and the medication only "takes the edge off" I remain in a fair amount of pain and suffer from cramping and nerve damage / regeneration of the face and neck areas. Its not ideal, but its the only option available.

I believe the only way I can function somewhat normally is to have and use the medication. Based on your statements, you feel the same.

If you need the pain medication use it. But use it responsibly. Don't worry about what the media says. You know how you feel, not them.

You've had cancer, gone through the surgeries and radiation and are now dealing with residual pain that unfortunately accompanies the "cure" You are not some person abusing pain meds due to wisdom tooth extraction.

Please think about this and understand the difference...

Good Luck

thank you so much all. it really helps.
I was really down about it the other day. I think it's because I'm hitting my 1 year from my last surgery. Plus i still have an infection that i'm dealing with and they can't really find the source in my mouth. they can't tell if its the gum or tooth. I had a fistula but it's getting better. very very slowly and it's not draining.
other than that, i'm trying to get used to my new normal and understand what is my "life" issue vs temporary issue.