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Name of procedure to bypass breathing to a permanent tracheotomy?
I am 70. Weigh 143 lbs. Height 67 inches. I have been on a feeding tube for 3 years and will be on one for the rest of my life. I cannot even drink water without part of it going directly down my longs. Two bouts of tongue cancer in 2010 & 2020. Radiation in the first and surgery in the second. In December 2023 I was told I need to stop eating and drinking orally. OHSU Portland OR. I need to find out more information on the surgery that may restore my eating and drinking.
It is hard for me to talk and be understood especially over the phone. The constant hacking to clear my throat I usually need water to clear it out. The occasional leakage around my feeding tube port. To mitigate the smell on my shirts I keep a washcloth underneath. It is all becoming way too much.
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Hello Kris and welcome to Connect. This does sound like an overwhelming burden that you are living with. Does your medical team recommend a permanent tracheostomy? With your prior surgery, the discussion to have with them is what devices might be available to restore my voice with a tracheostomy. Could your speech be better or will it be worse?
It sounds like you might benefit from some professional advice on stoma care with your feeding tube. Perhaps the balloon could be adjusted or different materials used to contain the drainage. How frequently do you see the medical team for your feeding tube since you have been using it for so long?
I am surprised that there may be a surgical procedure to restore the ability to swallow. I hope you can get more information from the doctors about this potential surgery. When do you next see your medical team?
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2 ReactionsGood Morning Kris, I totally understand what you are feeling and going through. I have appointment in Portland my doctor name is Dr Joshua Schindler have you heard of him? My doctor's here in Southerner OR are very confused after 9+ yrs. im have problems. 🙁 Have a nice day 🙂
We're on our own journey, but yet we're on the same journey 👣
No, the cancer doctors at OHSU Portland are not recommending any surgery. The last swallowing examination in had at OHSU said there was nothing that could be done and I would have to live with it. The problem I have is mucus drainage (side effects from my first cancer treatment with radiation 2010) couple with saliva. It drains down my throat forcing me to hack it out. Movement of my jaw seems to perpetuate the condition. So, I usually keep my mouth shut and do not start conversations. Even if I just hacked out everything, I have a tenancy to spit when I talk, because I have to force my words to be understood.
My Gastroenterologist said the point of entry looks better than most. I shower about 3-4 a week. I have my PEG replaced about every 4 months. Balloon does last. After the second feeding of the day, I will usually push fluid out. The amount is dependent on the amount of activity. I use a snap in place cloth sleeve with a medical sponge backer. I do not have a medical team for my port. Of course I do have a doctor for my prescription of formula. But I have been designating what I want. I have been trying to get on Kate Farms 100% (much more natural), but it has proved to be too gassy for me. I blow up like a ballon, a lot of pressure. It is no wonder why I have leakage and bial coming up occasionally. I am going to have drop it to 50% and use 2Cal (have you read what is on the package of ingredients. Nothing that can recognize) for the other 50%. My next appointment is in November to have my formula change.
I have no surgical medical team at this time. My ENT thinks that the graft taken from my arm to replace the cancer that was on bottom of my tongue and soft platte is too tight and is pinning my tongue down.
I have asked these questions to gather data on what should before I look to another specialty hospital.
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2 Reactions@cskippy Thank you
What Hospital is he affiliated with?
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1 ReactionHello, I go on November 1, 2026 will go up a day before, He's with OHSU Portland this is my 1st. appointment with them. I have the same thing going on with mucus drainage and the coughing up the stuff. I had tonsil cancer back in May 2015/2016... My first treatment of radiation, when it was over and I came out of the tube my hold body went numb from my neck down to the bottom of my feet 🙁 I ask the nurse if that's normal and she told me, you'll be okay don't worry. 9 or so years later here I am, dealing with the aftermath. Here's where I have to go...see attach.
I believe I have been seen there at least two times.
Andrew Palmer Ph.D. CCC. SLP
I checked my business cards. It is the same address. He was very nice. Very confident.
I was not happy with the verdict in my case Dec 2023. I was treated for my second bout of cancer 2020 (surgery) at the top of the hill; the skybridge.
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2 Reactions@krisohlson Thank you for letting me know. I'm thinking about going out of state to see. My daughter lives in MN so maybe check into the Mayo Clinic. Just have to figure out things.
Have a happy day 🙂
We're on our own journey, but yet we're on the same journey 👣
@krisohlson It does sound like you are wise to be looking for referral for another opinion (s) at a specialty hospital. Travel for our health care is inconvenient, but often necessary. I don't think I would be alive today if not for the excellent care at Mayo Clinic, Rochester. My ENT surgeon just retired but the Head and Neck team is a wonderful group. I highly recommend this facility.
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