Oh Lola!!! How I understand every word you wrote. In fact, I could have written most of your post back when I hit my one year post mandibulectomy.
First, the pain needs to get under control. Being in pain does nothing productive at all for any patient. I think it actually makes everything seem so much worse when you hurt. Ask to try prescription liquid gabapentin AKA neurontin instead of the cymbalta. Neurontin doesnt need to build up in your system to work, you will know with the first dose if you feel relief. You may even benefit from being on the fentanyl patch for a while. I would guess 50mcg should help you to feel better. Just be sure to follow the directions to the "T" (meaning no long hot baths or showers, never cut bend, fold, rip, tear or in any way damage the patch and replace it every 72 hours in a new location. The fentanyl patch will provide a nice steady dose of constant pain control where you may only need the other neurontin once or twice a day or if you are lucky maybe only a few times a week. But its there if you need it. I was still hurting pretty bad when I hit my first post mandibulectomy anniversary. Until the infection was fixed I felt lousy for that first year.
The infection needs to be fixed!!! When I went thru it I had an infection in the wound that was like a tunnel about 6" long from the front of my face to behind my left ear. I needed IV antibiotics 3 times a day for 8 months and HBO as the final push to kick the infection. If you havent made significant progress you may need to see wound care specialists. They really did a great job with me and healed what I had considered impossible to fix.
One positive thing about hitting the one year post surgery date is you are now eligible for reconstruction surgery. If you think your doc can do some minor changes to make you look better then ask them about it. But remember, we are always our own worst critics. Im sure you dont look as different or bad as you think. Kids notice things quickly and will stare at anything that is even a little different.
Im 7+ years post my mandibulectomy and am not a candidate for further reconstructive surgeries. Ive adjusted to people staring at me, after all Im missing half my lower jaw so it is very noticeable. While I was in the hospital for the mandibulectomy, I didnt even recognize myself when I first looked in the mirror so I was quite shocked. What helped me adjust to my new face was something I repeated to myself over and over.... "In time, looks fade and even the most attractive people will not always look so nice as they age. I may not look the best anymore but Im still the same person inside and nobody can take that away from me." I still walk around going about my business just like I always have but I do tend to stay home much more than I did before I got sick in 2007. But thats partly due to living on less than half of my former income. It was a huge adjustment going from a very good job to not being able to concentrate long enough to remember all the details of my job. I blame my memory issues on being kept in a medically induced coma for 3 weeks. I still dislike going to the hospital and probably always will after the 2009 surgery that changed my life. Even my son who came to visit me daily still has issues when he goes to the hospital.
Someone just recently posted about a new product line from Oral Seven that helps them tremendously with their dry mouth. They said free samples are available. Per Uptown if you want to try it.... "Anyone needing a sample can email,
[email protected] (be sure to include full name, address and phone number) or make a request by phone, 908-420-6974" It sure cant hurt to give it a try. I hope it helps you.
Best wishes with your continued recovery!
