using cpap after neck surgery

thanks Russ & Jeff.

Russ - my surgery will be in Seattle at Swedish, one of two locations in the State that does TORES. The rest of my treatments will be in Bellinhgam.

Jeff - that would be great if I didn't need CPAP anymore. How did your surgeon know you wouldn't need it? I'll ask mine. Did your surgeon do something extra to great rid of your apnea or was it a 2nd benefit of the cancer surgery? Did you have a sleep study to follow up? I've been using CPAP for as long as I can remember (the humider was seperate from the machine and the nurse told to wrap a heating pad around it to warm it up! I did and it worked. Todays are so much more advanced....). In the meantime I'm trying a new headgear & nasal cushion that does not cross the neck.

here's my update re the cpap; i had sugery on 8/24/21, they found the primary - right BOT, margins were positive. Took out 21 lymph nodes in right neck, one was postive, clean margins. some of the muscle had to be removed as well. (They forgot to tell me HOW PAINFUL it would be to even sip some water after about 6 days...over that part now).

i found a cpap mask & chin strap that did not cross my neck that worked and practiced it before surgery. i still need the cpap. i took the cpap to the hospital and they were unable to find a respitory therapist to put some distilled water in it for me - all the RT's were busy dealing with Delta patients..... Had I known i would have brought my own water. oh well.

i'm still using the nasal setup and plan to go back to full mask which cross my neck soon. i'm prepared to return to the nasal mask after radiation starts in early October.

more questions / comments coming....

thanks everyone.

jim

amineart,

I had TORS surgery on the tongue (https://my.clevelandclinic.org/health/treatments/21612-transoral-robotic-surgery-tors ). It's offered in only two places in Washington State, both in Seattle. My ENT surgeon had to press the insurance company to get it approved. Surgeon also took out 21 lymph nodes on my right neck (one was positive the rest ok).

I did not need reconstructive surgery. They never brought it up as a possiblilty. Recovery from the surgery was very rough. I spent one night in the hospital and was given IV opiates in addition to oral liquid oxycodone every 4 hours - 10mg. Upon release they dropped my Rx to 5 every 4 hours. Well that didn't work and I was able to get them to increase it back to 10mg every 4 hrs in addition to tylenol. That barely covered the pain. The mouth pain was like someone take razor blades across my tongue. I could hardly even swallow the pills. apparently as the tongue heals the "scab" comes off and the area of surgery hurts again and again. Recovery from the surgery was 6-8 weeks. The first few weeks were the hardest.

After recovery from surgery I had radiation & chemo. First couple of weeks were ok, as they predicted, then it started to get rough. There is a delayed reaction to the effects. I ended up on fentanyl patches in addition to 10 mg of oxycodone every 4 hrs. And lidocaine for the tongue. Eating was very difficult, I lost 40 lbs. I'm retired but there was no way I could have gone to work. Rad finished first week of December and the cumulative effect of the rad & chemo didn't hit until mid to late December - as predicted. I did not have a feeding tube, my doc was not one to put one in preemptively and I didn't want one. It was touch and go for a time. The pain in my mouth was worse than the surgery as it went on for weeks and weeks. I learned to eat at the time that the pain meds peaked - about 1 1/2 hrs after taking the quick release oxycodone combined with lidocaine and some kind of stomach antacid liquid. one of the many variations of magic mouthwash. also not covered by insurance - so i made my own.

In addition to the pain, the exhaustion was and continues to be difficult - again predicted. This past week I've only just started walking outside for 20 minutes at a brisk pace. And that takes a lot.

I'm focusing on eating enough protein & calories. It would be good, I think, to put on some weight in advance.

I had a picc line for the chemo. I asked for and got an infusion pump to take home and give myself (with my wife's help & training from the infusion place) saline. I'm positive this kept me out of the ER on more than one occasion. You can go for a while without eating but not w/out drinking.

My CPAP is full face and worked just fine. I spent one night in the hospital after rad & chemo started due to a fever and other stuff. The hospital had CPAP's with specially designed N95 filters built in. I didn't use it as I wanted to research it first and was only there one night.

I am currently limited to lifting my right arm beyond horizontal. This didn't happen until after I was done with radiation. So while some of it was likely due to surgery in the neck I think most of it was due to the radiation. I got the majority of it on the right side. Radiation will make the muscles very stiff - very important to do all the stretching and muscles exercise for your tongue and neck now and going forward. I'm still doing them.

I also needed a ride to and from the chemo / radiation, due to the pain meds and to the exhaustion.

I hope this helps, feel free to ask more questions as well. There are many here on the forum that have gone through what you are facing and have been a big help to me.

My only criticism of the process was that the docs (surgeon & chemo & rad) didn't really prepare me for how bad it would be. When I said that something was really bad pain wise, they would say yea, that's normal....

Once I got the pain meds w/ the surgeon's office worked out I was better. My rad doc has been really good re pain meds as well. The nurses said "stay ahead of the pain". I made the mistake of trying to cut back too soon on more than one ocassion and paid the price.

Best,

Jim

big G, nice a benefit of not needing CPAP anymore. I still do. I have not had an issue with it and my dry mouth, it comes with an adjustable humidifier as most units these days do.