Fistula after total laryngectomy: What helped you?

Hi @kestamey Ken, Welcome to the head and neck group although this is not really a place most folks desire to be.
I really have no information or reference for you on a fistula in that location. I also am not a fan of HBOT except in specific cases such as bone healing. But perhaps someone on this feed has experience in this situation. We can give it some time and see what pops up. I didn’t want you to feel like you were calling out into an empty canyon.

@kestamey, here is another discussion about HBOT in the group that you may be interested in:
- Anyone had Hyperbaric Oxygen Treatment after radiation?https://connect.mayoclinic.org/discussion/hyperbaric-oxygen-treatment/

I'm also bringing in @ltecato who has experience with a fistula related to nasopharynx cancer and feeding tube.

Ken, did your wife's doctor explain why surgery is not an option? Did the first set of HBOT sessions help?

I had hyperbaric oxygen treatment c. 1979 in San Antonio at a military facility (Brooke Army) because I was an Air Force dependent and I had been heavily radiated and needed to have my wisdom teeth removed. It was not very remarkable. The main thing I remember is having to wear flame-retardant coveralls and bring a paperback book to read, and of course no smoking in the chamber. It was like a simulator for a submarine training exercise, kind of like one of those tourist subs that hold a half dozen passengers. Every session was called a “dive.” We would feel a bit warm as the pressure was increasing and then slightly chilly as we were “resurfacing” IIRC.

I suspect that the hyperbaric chamber was just a new toy for the Air Force oral surgeon to play with when they decided that they wanted to use it on me. Other dentists told me that they could pull my teeth safely as long as they prescribed antibiotics afterward. But the radiation I received was supposed to put me at risk of osteoradionecrosis, so that was why the oral surgeon wanted me to take the “dives.”

The only thing I can complain about is the “pressure equalization tubes” that were placed in my eardrums using only local anesthetic. I would advise against allowing any doctor to do that. (You DO need the tubes because of air pressure changes, but don’t consent to the local anesthetic unless you can get assurances that you won’t get vertigo.) First, it hurts when you are getting the shot in your ears. Second, and even worse, is that about half an hour after the tubes go into your ears, you will be hit with the worst vertigo you have ever experienced unless maybe you have been an astronaut trainee who has ridden the “Vomit Comet.” I suddenly could not walk or even move my head without being overwhelmed by dizziness and nausea. The doctor didn’t warn me or my dad about this and it hit me when we were waiting to eat lunch at a very nice Mexican restaurant in San Antonio. I had to spend about eight hours lying in bed, unable to even lift my head. If you have to get tubes inserted, don’t let them use a local unless they can deal with the effects on your inner ear. I am not exaggerating about the effects that will ensue once the local anesthetic disables your labyrinthine nerves. You do not want to find out how bad it is. It will probably not kill you but it is a miserable experience.

I should have read the original post. It sounds like the patient has already had some hyperbaric treatments. If they have tolerated them so far, I would say that is a good sign.

I had a problem with a fistula that developed after I had a feeding tube fall out and decided not to replace it. It was a constant issue until I was able to get it surgically repaired. I have been a lot better since then. I’m very much in favor of fistula surgery.

Long hard story, my wife AND I went through total Larengectomy back in May 2025 ,all at St.Vincents in Worcester MA side note. Awesome Hospital so first 3 weeks in was Biopsy and Tracheotomy Full Blown Voice Box Cancer was diagnosed, I should say something now or would be derelict, Baystate Medical Center found this Cancer way back in November 2024 Wife went to ER with very HOARSE VOICE AND VERY PAINFUL SORE THROAT basically sent home and told to contact Primary doctor ok I have to give more information Wife was raging alcoholic to be fair Baystate Center was like Not her again! Yah past 3 years nonstop around the clock, many, many Nipps 100 proof or better falls, outbursts, walking neighborhood naked yes. Very Depressed Woman so sitting in bed with ciggs and Nipps for 3 years produced throat cancer ,they saw it on xray ,but said nothing to us Just follow up with Primary ,so being to inebriated to go to any medical appointments o I made them but come time to go ,forget about it This went on for 4 months Hospital knew she wasn't gonna see her doctor and they would have to do something , Ya they did,made appointment with ENT oncologist for October 15th 2025 ,, only thing I can think is they figure she be dead by then, Problem Solved If I didn't get on phone start making calls no one else would. I finally got her appointment with Associates in Orentology in Worcester Mass I can't say enough great things about Dr.Du she 1 in Million si now back to 3rd week in May. 3 weeks in for Biopsy and Trach healed nice sent home for few days be back June 3rd for Total Larengectomy WOW like slice someone ear to ear 4 weeks to somewhat heal , ended up with good infection but me living in room with her gave them 24/7 wound healer I changed drains more often than they would lol I took most of care since that was my job past 2-3 years Yep it's for better or worse plus I figured she definitely was my care taker for most of our 47 years So now we home with STILL good open wound , but that didn't matter, it was back to booze very fast DOORDASH will accommodate anything While im napping or out shopping she does delivery ,, o ya ,forgot,, Fistula opens up like 2nd week after Larengectomy seems wife wasn't supposed to eat normal food while healing Oppps so after HOARSE runs they close barn door ,, put in stomach feeding tube but food , booze, too drunk to take care of self AT ALL ,I was going out of my mind trying to do it all Cancer care sure but Cancer and alcoholism NOPE. I cried out to every Organization I could find Her going ( no joke) 3-4 times a week to ER for mucas Plugs,, Pneumonia , falls, and just plain I Need a Break 4 months this goes on Its funny took a really caring nurse at Baystate to see me and say wow ARE YOU OK?? I was amazed, someone asking me WOW so that's how wife spent 3 weeks in hospital while waiting for Extended Care Facility with her medical conditions u be surprised how many don't have those kinds beds of course no wer around home. Has to be Hour and 25 minutes away , but this Lanessa Extended Care Facility will transport her to all appointments Since she missed window for radiation treatments and started Speech and Swallow to get voice BUT fistula prevented both NOW Back on some sort of track ,, no drinking 3 months might have shot. HERE'S THE KICKER she don't want to go on anymore says it's too much trouble

@donsasen, that's an awful lot for both of you. How are things working out with the extended care service? How are you doing?

@colleenyoung Actually, terrible situation, she was only supposed to be there while I did my shoulder surgery, but my surgeon said he wants to try different injections which is now gonna stretch her stay even longer and the traveling is becoming more than we both unexpected. My shoulder is way beyond pain now, just turning steering wheel is a difficult situation in itself. If we could just find place closer to Springfield I think our lives would be better. First ,because her Oncologist is in Worcester so Brewster MA wasn't bad idea but first appointment we could get was after holidays so January 22 is her appointment. Maybe Dr. Du after PET scan can find closer Extended Care Facility who knows, this just gets more and more drawn out the more it goes on but Thanku for concern.

@donsasen, I hope you got some answers at the appointment last week.

Well let me get back to you, im actually commenting on Mayo Clinic
Connect,,right now. Since my lobectomy to remove cancerous cells in top
right lobe, and cancer free these past 6 years,,and a few side effects that
came with the surgery , im trying give my reassurance and outlook on that
type of surgery.
I get back to you soon, o ya, your gonna have to hear it to understand
it.

@donsasen My wife passed away on January 26th because of very simple problem she has been successfully been dealing with since surgery,,a MUCAS PLUG in Trach, from the beginning we both were taught how to remove mucas plugs, a vacuum/ suction machine was supplied to use, with instructions on its use, at first she was doing job very well and wen plug was too hard and deep ,the clapping began (her way getting my attention, in i run with flashlight and long handled tweezers. Didn't come up against plug i couldn't remove. Have to digress,,after 3 months of nonstop trachea maintenance she was ready for a voice. Appointments wer made at Pioneer Speech and Swollow in Wilbraham MA Speech Therapist and owner Erica had Teryle in exam room and. O ya need to say Teryles insurance wouldn't pay for a 450 dollar voice prosthesis Was a critical part of whole program,, Erica went through back doors to get Teryle 4,000 dollars worth of voice devices. NOW BACK TO EXAM ROOM upon very close inspection Erica discovered a/THE FISTULA BAAMMM!!! end of everything thing to give my wife some Quality of Life ,,she was looking forward to voice therapy and not so much radiation treatments but she knew it was beginning of new life. But that one little hole in folds of neck skin STOPPED her from wanting to even go on anymore started drinking HEAVILY. With the look on her face said it all ,,she wanted OUT anyway she could do it. So ok sit in bed in lonely room with just me and a TV. 3 whole months 24 hour hammered and having a Blast. Laughing and crying I couldn't do it anymore I could handle taking care of cancer patient but cancer and disgusting alcohol abuse ,, I mean I had her in tube twice a day. PortaPotty spilled to many times to count NO More TRACH CARE by her all me I was auctioning nonstop so I started with Section 35 then ,,,since I was Proxy I had her put in Lanessa Extended Care Facility ,,she didn't like it at first, but even though hour and half drive i was ther every 3 days November, December,,January she was doing it i even got Sheilds Pet scan to try one more time to get that all important follow-up Scan She missed 6 scheduled appointments To hammered. Few times I took her tipsy NOPE PLEASE RESCHEDULE. February 4 and the THE HOLY GRAIL of appointments. FOLLOW-UP with Dr. Du oncologist. She was like if she continues to consume that much alcohol Fistula will never heal (i checked, they almost never heal at all) she said try to get her in detox. Hahahahaha THATS BIGGEst joke I've heard called all 7 in Mass o she has 2 medical issues on Oxygen for COPD. AND cancer patient with Larengectomy wer sorry just drop her off any Street Corner nothing we can do. So Baystate Medical Center took her in as medical patient and we waited for bed to open in Care Facility NOW U KNOW THE WHOLE STORY. THANKU FOR LISTENING