Hello friends,
I did not have any tongue reconstruction following a partial hemiglossectomy. I'm beginning to wonder if my surgeon did me a disservice by not offering me the option. I had 1/3 of the right lateral side of my tongue removed 14 months ago. It sill feels wrong, bad, and very limited. There are constant abrasions on the right side because of the friction with my teeth, the sugical side is always irritated. The surgeon removed the tumor and made up for the tissue loss by pulling it over from the left side and then folding the tongue on itself for closure leaving a deep incision where the two sides are connected, a shortened tongue with a hump on it and decreased motility. Often bits of food will get stuck under my tongue. I am unhappy with this outcome. I do talk fine with little effort, do not chew on the right side at all because of the malformations and inability to manipulate that side. I struggle if I have made the right decision and if I had had a little reconstruction would I be feeling better at this point, because all I feel is discomfort. Is it harder to manuever a reconstucted tongue? I guess my brain cannot accept this new tongue. Has anyone not had the reconstruction? I am so happy this site offers a place to find answers.
Thanks for reading and I appreciate any input.

Hi Pamela, I think if you aren't happy with the outcome of your surgery then you should look into possible reconstruction.
I haven't had anything done to my tongue surgery wise but I had a lot of reconstruction done to my face, I didn't want it at first but gave in eventually and it really helped psychologically. You're bound to get good advice here and then you can decide what the best course of action is. Good luck. Hagg.

Hi Pamela

I had a hemiglossectomy with resection three and a half years ago and just can't imagine not having my flap. I have hair and no tastebuds on the left side of my tongue, but otherwise Flappy works just as well as the right side.

I didn't have a choice in the matter; my doctor announced what he had planned before he even did my biopsy. "We're going to remove the left side of her tongue and replace it with a piece of her arm." My surgery took the better part of a day. When I woke up, I had an NG tube, a trach, a happy new tongue flap and NO EAR PAIN for the first time in months.

Did your doctor explain the differences in resection/reconstruction before you made your decision? There are basically 2 ways: to the floor, which is just like is sounds, sewn to the floor of your mouth with little if any movement possible, and--presumably--difficulty speaking and eating. Flappy is built "to the roof". I have no problems eating (unfortunately) and my speech is almost exactly the same as before. The only problem I have is "tongue cramps" which are basically muscle strain if I've been talking too fast or too loudly. My doctor told me it's similar to the muscles in a marathon runner's legs (maybe he was just telling me I talk too much)--they get tired.

My flap still tingles from time to time--especially if I'm eating something deliciously spicy--and I never forget that it's there, but getting my flap was, as Martha Stewart would say, a good thing.

The best suggestion I can give is to contact an Otolaryngologist or Head & Neck Cancer specialist at a teaching hospital to discuss your options. I had all of my work done through the Oto department at the University of Michigan, and it's truly turned out better than my family or I ever expected.

Talk to you later.

Julia

P.S. My doctor has offered to pierce my tongue so I can have something to hold onto while I stretch my tongue. I turned him down.

This message has been edited. Last edited by: Julia,

Hi Pamela, I recently had surgery (April 2008) where I have a 75% new tongue made from my left thigh. Am I pleased with it? Well I am getting used to this new organ slowly. I am told by many that my speech is getting better and better, but of course compared to before there is a lot more training to do to make a clearer pitch. Things are progressing thank-fully. I aren't half self concious of me speaking though.

Reading Julia's earler posting, I too suffered a lot with pain in the ear, as well as being very sore on the side of the tumour, to eat, pre surgery. Today I find my new tongue bedding in still, with the comfort fit between my tongue and my lower right teeth. Having some molars removed took me by suprise, leaving some gaps in my row of teeth where of course the tongue seems to be adjusting for. Save wittering on the operation was a god send, what a relief being out of pain.

So if I were you I would go for reconstruction, purely to nullify your discomfort/pain. On the downside of a new flap, well mine seems awfully hard, almost too big compared to before. I have an appointment, to get signed off if you like, next month with the surgeon, see what he mentions. Because I recall before, its not unheard of to go for a second surgery, for size reduction. I would be most grateful for any comments here.

So well see next month. Now I off for a walk, its a lovely autumnal day today, sun shining the leaves turning orangey gold.

Keep us posted.

Best wishes.

Hi Nigel

That's quite a bit of tongue to have rebuilt--and I thought Flappy was big. Did you have a feeding tube and/or a trach post-op?

Over the course of time, my flap has shrunk to fit, and nerves from my native tongue have grown in. Do you have hair on your flap?

It's a beautiful autumn Saturday here in Ypsilanti, too.

Talk to you later.

Julia

Hi All,
Thanks for your advice guys! I was not given the option of reconstruction by my surgeon, I asked him about it and he said, no way. I thought I didn't need it since it was less than 50% being removed, so I didn't question it. I believe his reasoning was that if there is a recurrence it is harder to find if you have a flap(?). At the time, I suppose I thought less surgery was better. I don't know if my quality of life would be better now, but this is not cutting it for me.
I have become very depressed about it because I feel trapped, hate eating, and I can't get away from the discomfort for a second. I'm very scared to have another sugery then there is the whole insurance thing, maybe it wouldn't even be covered. I'm finally going to get some decent insurance 11-1, so I can go for an opinion. I'm happy it has worked out for you Julia, with Flappy (cute)!!!
I have heard that sometimes the tongue does need a second surgery for debulking, good luck let me know how that goes, Nigel.

Keep kickin it Hagg!

Thanks again & Warmest Regards,
Pamela

Hello Pamela

from Recent advances and controversies in head and neck reconstructive surgery, Indian Journal of Plastic Surgery, 2007
Moni Abraham Kuriakose, Mohit Sharma, Subramania Iyer
Head and Neck Institute / Division of Reconstructive Surgery, Amrita Institute of Medical Sciences, Kochi - 682026, India

quote:

The algorithm in tongue reconstruction is shown in [Figure - 1] . A partial glossectomy defect involving less than one-third of the tongue, especially when not involving the tip of the tongue can be repaired by direct closure or left to heal by secondary intention, especially when the ablation is carried out using laser. Hemi or subtotal glossectomy defect needs reconstruction, which is best carried out using free tissue transfer. The choice of flap depends on the reconstructive need. If the defect is restricted to the tongue, without involvement of the floor of the mouth a lateral arm flap suits best. However, if the floor of the mouth is involved, a pliable radial forearm free flap is the better choice of flap. In larger defects differentially thinned antero-lateral thigh flap can also be considered. There is no general consensus on the choice of flap in total glossectomy defect.

There has been past dicussion about tongue reconstruction which you might find informative. There is more detail in this free article on Tongue Reconstruction Procedures for Treatment of Cancer. (The full article with illustrations costs $10 to access from the AORN journal itself.)

You might also find this video of Dr. Dale Browne and his patient, Shelly Brown after her successful cancer removal and tongue reconstruction inspiring. Ms. Brown is a young woman who lost half of her tongue to cancer, but has recovered and now sings in her church choir.

Hope all this helps to inform your decision.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi Pamela,
Just to say I had surgery just over two years ago to remove part of my tongue. My surgeon tried to reconstruct it using muscle from my thigh, but 3 weeks later the blood supply to the flap failed and I had to have it removed. There was no way I could go through more surgery to create another flap at the time so we agreed to wait and see how I would cope without it. Two years on, I am doing really well and am quite happy I don't have a bit of my thigh in my mouth! It took a long time to get used to it but I have adapted and can move it enough to speak and eat fairly well. Of course everyone is different, but I am going to be one of those annoying people to say that it is all about time and letting your body get used to it. Nevertheless, it is probably worth discussing the possibility of a flap with your surgeon so you can get some reassurance. Hope that helps a bit.