| Joined: Jun 2025 Posts: 2 Likes: 1 Member | OP Member Joined: Jun 2025 Posts: 2 Likes: 1 | New here and realizing I should have put my previous message in this forum column, so please forgive the redundancy:
Reaching out to say hello and share a little optimism. In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous. Sending hugs to those who need them. Angilee | | | | Joined: May 2025 Posts: 2 Likes: 1 Member | Member Joined: May 2025 Posts: 2 Likes: 1 | My mouth feels like I have a marshmallow stuck in my right cheek. The tongue is so large that I can’t get my dentures in. I am 2 months out from surgery and will start radiation in 2 weeks. My surgeon told me at the one month post surgery appointment that my tongue swelling would gone down. And then last week he wasn’t as optimistic. I can only say a few words that people can understand and my eating is limited to applesauce, pudding, and mashed potatoes. When I try to drink liquids it comes back up through my nostrils. I’ve been on a PEG tube for 2 months. I would be interested in how you overcame your obstacles and developed exercises for chewing and swallowing. Also, I’d like to hear from others who have a tongue that is too large.
Nick Goodpaster
| | | | Joined: Aug 2020 Posts: 178 Likes: 55 Assistant Administrator Senior Member (100+ posts) | Assistant Administrator Senior Member (100+ posts) Joined: Aug 2020 Posts: 178 Likes: 55 | Hello Goodpn,
Welcome to OCF and I am sorry to hear of your challenges. My experience was the tongue took a long time, many months, to come down to a manageable size. It was weeks before I could even touch my teeth back together. Everyone is different but I was able to get off my nasal feeding tube before radiation. But, eating was hard. I ate soft foods, like you have listed, for months and it would take me a long time to just manipulate and chew a bite of anything with structure. Radiation added a whole new challenge - some swelling, sores and funky flavors. Flavors were the hardest. By the end of rads, most foods tasted horrible. I focused hard on the ones that I could still stomach. Some tasted fairly normal like scrambled eggs and green beans (say whaaat? I know, green beans!). Sounds like you have a vitamix (or similar). I would blend all kinds of simple stuff together in there. Found adding avocados to almost anything, like vanilla ice cream, worked in the blender to add some healthier calories. Flavors come back after rads over the months and years. I am five years out now and still notice some improvement in spice levels. Spicy food ended up being the hardest/longest to come back. Today I order the least spiciest on the menu and still sometimes cannot manage it. Liquids were a different challenge. I just kept practicing in small sips all the time. Eventually, I learned how to drink fairly well. But, I still can not do a milkshake through a straw. I can do water or liquid through a straw now. That took awhile.
Upshot, I had to learn to be much more patient with myself than ever before in my life from an injury/physical challenge. I suggest journaling - both written and video. I would get frustrated thinking why hadn't I come further with my speech? food?. Then, I would go to my journal, watch an old video of myself speaking, etc. and realize I had improved more than I thought.
Please keep us up to date on your progress.
Blessings and peace, Nels
OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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