using cpap after neck surgery

jim108

greetings all. i'm glad to have found this site and am just starting out.

Dx'd with Squamous Cell - HPV +. Lymph node just below my right jaw joint is swollen. Scans and visual can not find a primary.

On 8/24/21 i have surgery, TORS for base of tounge where they think their maybe a microscopic primary and regualr sugery for the lymph node(s). After path reports then the discussion about radiation and possibly chemo. We'll see.

My quesion (the first of many I'm sure) is using a cpap mask after surgery. My full face mask type has a strap that goes right over where the lymph node is. I can't imgaing putting pressure on that with the strap. I have another type - nasal pillows & straps which is not as efficent - but the straps do not cross the area.

I imagine that I'll have similar issues if I get radiaiton. (I'm assuming that will likely be recommended).

Has anyone had to manage this and if so any suggestions?

 

Thanks!

 

Jim

wbcgaruss

Hello Jim

I do not have first-hand experience with a CPAP and especially not in the way your situation has turned out.
But I would like to just welcome you to the group and as we always say we are here but didn't really want to be.
I can't recall anyone in your situation on here either.
But we will see maybe someone will add in here that had the same experience you are going through.
Most of the cancer cases though head and neck are still separate cases as per each individual and I believe such is yours so I would recommend if no one on here has advice please run it by your care team for a definitive answer.
I hope they do find your primary.
Are you getting TORS surgery at a major hospital or cancer center or just a local hospital?
I had my tongue surgery at my local hospital done by my ENT.
I had my more major surgery of an unencapsulated lymph node done at Milton S. Hershey Medical Center in Hershey, PA. The site for them says they are an academic medical center and a teaching hospital.
Jim, please check out the SuperThread at the top of the H&N page it is loaded with info.
Other than that for now just saying hello and keep us updated and stick with us as there are many knowledgeable people on here to help.
Wishing You The Best-Take Care-God Bless-Russ

 

 

 

 

Duggie88

Jim

Jim

I was using a CPAP before my cancer surgery. I also had cancer at the base of my tongue and my surgeon told me after the surgery I will no longer need it. I did try and use it afterwards but it dried my mouth so bad I packed it away and haven't used it in 11 years. Besides, I no longer had sleep apnea. I would talk to the surgeon and let him know your concerns.

Good luck with your surgery

Jeff

jim108

thanks Russ & Jeff.

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.

 

 

big G

jim108 said:

thanks Russ & Jeff.

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.

 

 

CPAP

Jim, Duggie88 is right more than likely you will not use your c-pap anymore especially if you have radiation tx. I had a radical tonsillectomy at the same time as they removed the BOT tumor therefore I did not need it anymore which was a good thing because with the mouth dryness there is no way I could have stood it. With that being said every case and everyone is different. Good Luck JIm.

jim108

here's my update re the cpap;

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

Jim, this is great information for me. Just diagnosed with Squamous Cell Carcinoma (Tongue Cancer). I also have a CPAP, but I have a Nasal pad (not the pillows, had that before), no full mask. At this time, they don't know just how much of my tongue they will have to to take, most of the growth on my tongue is external on the left side, but will find out after surgery.

Did you need reconstructive surgery as well? They have the plastic surgeon ready to step in if necessary, but won't know until they have me opened up...

Sounds like you also did Radiation, how did that go? Did you go back to work and do Radiation at the same time? With the Neck Dissection, what was the recovery like? Limitations? how long?

just trying to have realistic expectations for my recovery.

jim108

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

https://csn.cancer.org/discussion/comment/1693442#Comment_1693442

I did not need my c-pap after my Tors surgery as I also had a right side radical tonsillectomy. All my prior obstructions were removed. It was a good thing because there is no way I could have used the c-pap because of dry mouth.

jim108

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.