Post-Op Partial Glossectomy - Please Help
Hello All -
I had a partial glossectomy yesterday for the left side of my tongue. It resembles a “cookie bite” out of my tongue but goes down to the floor of my mouth.
My throat and tongue are so swollen I can’t speak, it’s incredibly painful. The outside of my throat is huge from the breathing tube.
Has anyone else had this? I’m also terrified about being able to speak clearly again. I have 3 small kids at home. If you can offer any advice at all I would deeply appreciate it. I keep waking up panicking ):
Comments
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Carlie welcome to the H&N discussion board. There are some folks on here that have had tongue cancer and hopefully they can help. I may be able to help a little I had a cancerous spot on my tongue and had it operated on in 2018 and they removed the spot with clear margins. Not as large a piece of my tongue as compared with yours but the effects probably are similar. Hopefully, they have gotten clear margins. Are they recommending any follow-up radiation and chemo? I will say they had me rinsing my mouth with the usual salt and baking soda mix to keep it cleaned out and any excess blood etc removed. I don't know if you are or can do that. Also at the time when rinsing at the sink, you tend to look at it and that is sort of upsetting because I saw stitches and it just didn't look good at the time so I recommend don't check it too often but be aware of how you feel while you are recovering in the days ahead is it getting less sore, does it look like it is healing well and if you are alarmed about something call your doc they are there for you.
Right now being just operated on things are going to be swelled up and out of normal so don't be upset for now just know you are in recovery time and this is just going to require you to be patient in the days ahead. The doctors did their work and now you recover. You don't say that you are in the hospital so I am assuming you are home. I don't know how you are getting pain meds in or if you have any prescribed but you need to stay ahead of the pain for now even if it requires you to take meds every 4 or 6 hours on a schedule. Keeping the pain down will help you feel better and there is no reason to suffer. If you don't have pain meds contact your doc now and get some. If you can't get pills down right now they make liquid pain meds like liquid hydrocodone with acetaminophen and i can vouch is a good pain reliever when you can't get pills down but you can liquid. You may also benefit from ice chips putting them in your mouth to help against the swelling and maybe on your neck use ice packs. Did they put in a feeding tube before you got this operation?
Don't worry about speaking well again it will come back but right now you had some tissue removed and everything is swelled and things are out of kilter a bit so things are not going to work right till you recover from your surgery more and this swelling goes down. You may not speak exactly as you used to, your docs should have already assigned a speech therapist to watch over your condition and recovery, if not request one. If there are any speech issues, swallowing issues, eating issues, or any H&N issues going forward they will help you with that.
Don't panic but be strong for yourself and your children, you can do this and you will get through this difficult period it is just a matter of time, and following your doctor's instructions and if you have any issues call them. I also always recommend prayer, it is powerful and comforting.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”
Also here is an inspirational story of and by Jeannie Hopper who has had tongue cancer and an extensive operation and tough recovery but prevailed and is recovered today. It is an inspiring story and I hope it inspires you and lets you know recovery is just ahead-Take care-God Bless-Russ
Another link for her story--
Also here is another story of a young woman named Kate Brown, I keep these links in my archive for just such an occasion as this and I hope these gals inspire you, I know they inspire me--
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Thank you so much for this. Right now everything is just so scary and I wake up with panic attacks because I can’t speak and my entire tongue feels so numb. As of now I won’t need further treatment, thank the Lord. I really wanted reconstructive surgery to help my tongue motility but my surgeon kept saying she didn’t think I needed it.
I’m now trying to find someone for a second opnion to see if it’s something I can do. The top of my tongue is stitched to the bottom of my tongue and it’s so hard to move. Thank you for replying, I really need encouragement right now.
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Carlie, I’m scheduled for a partial glossectomy in ten days! this is the third surgery in one year. The first two were done by an ENT, to remove dysplasia. These procedures did not heal very well and a second biopsy confirmed squamous cell carcinoma. I decided to seek out a specialist this time. We are optimistic that the “third times a charm!” Hopefully your recovery went well, and your speech, and swallowing have returned to normal. Most importantly you are still cancer free!!
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Dear 703592899 - we're wishing you all good luck with the upcoming procedure. There aren't many postings on this board specific to the removal of tongue dysplasia, buy my husband has gone through it all. He had partial glossectomy, and knows all about issues with healing. Please keep in touch after the surgery, and if there are questions - just ask. For now, keep calm and carry on!
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thanks !! I just may take you up on your invitation. Waiting for surgery day is a bit challenging, wondering if every little pain is a new symptom!! Am I catching a cold, or is my throat sore due to a new symptom? Same with a slight earache.
thanks for reaching out
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Wow. Time goes by so quickly! It’s been nearly 2 months since my surgery. All of the pathology came back free of any carcinoma !! So grateful for that!! Everyone’s recovery is different, it was 2 weeks for me before I felt better. The first week I stayed on my pain medication schedule. I took a total of 3 weeks off of work as well. My tongue has healed beautifully! I still have some numbness. Yes it’s a little crooked and pulls slightly to the right. Speaking is pretty good. Some sounds are tricky to pronounce, if I slow down and really enunciate people can understand me. What I find the most challenging is that I can’t run my tongue over all of my teeth on the cheek side of my teeth. I can’t reach my molars with my tongue to clean them when I’m eating. A travel toothbrush brush is always in my pocket now! lol! My family is thankful this holiday season that this procedure is behind us!
Merry Christmas !
Becky
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Becky, we celebrate with you, so glad it is behind you. I hope they are going to do follow-up CT Scans and PET Scan later on and you will continue to have follow-up visits with your doctor to keep an eye on things.
Congratulations and Merry Christmas to you.
We Celebrate...
Wishing You the Best
Take care, God Bless
Russ
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I know how you feel!!! I went through somewhat the same thing. I had about half of my tongue removed to have clear margins. My tongue had to be reconstructed by a graft from my forearm and about 20 lymph nodes removed (from the left side of my neck) in a surgery that took almost 12 hours. I had a tracheotomy, a feeding tube, and some wound bags for a little less than a week while I was still in the hospital. I left the hospital on Christmas Eve in 2021 after healing to the point where I didn't need any of this extra equipment. After I healed for a few weeks I had to go through 6 weeks of radiation treatments (about 30 of them). I lived on a lot of protein drinks, weight gain, and other soft foods until I was able to start to eat solid food. Over that 3-4 month period, I lost about 25lbs but had the extra weight to spare so now I am down to my ideal weight. You will get through it and we are here for encouragement!
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