My mom had surgery on Tuesday for resection of tumor in her gums, jaw and tongue. After the surgery the doctor told me the tumor was much larger than they expected and that they had to remove 40% of the base of the tongue. She came out of surgery with a humongous flap in her mouth. I looked at it and the skin flap is stitched to the tongue. There is very little actual tongue left and the flap is so gigantic that it sticks out of my mom's mouth. Is this normal? I'm worried she will never be able to eat or speak again. The doctors was to send her home with a g-tube and whenever I ask questions about her ability to speak, I get a vague response. Usually they say that eventually, when she heals, she can start speech therapy. The doctors never give a timeline. Is this typical?
Jessica, thanks for the update! Wishing your mother a speedy and pain-free recovery.
Im not a medical professional so my view is from what Ive personally experienced with my own major surgery and seen happen with others over the years on this forum. Unfortunately the larger new section of tongue being too big is fairly common in patients with this type of surgery. Right now its swollen and will remain swollen for at least a few more weeks. Very gradually this will subside. I know this probably sounds like an exaggeration but after a major surgery like this, it can take an entire year to completely settle down and become part of her tongue. The healing process can be a long one especially with patients who have had intricate graphs or a free flap. Reconstruction can be done down the road if the new tongue section is still oversized after one year.
I dont think physicians like to give bad news to their patients so they avoid the touchy subjects. Just remember every single patient is different and will adjust and respond to procedures, medicines, etc in their own unique way. Even 2 patients who on paper appear practically identical will have very different stories about their recovery, pain levels, etc.
You may want to ask the doc about PT with a speech pathologist. This is something that can help her to bounce back quicker and gain better functioning of her new tongue. This takes lots of practice! Ive seen many patients describe how they would bite the new tongue and since its transplanted tissue they didnt feel it but it would bleed. The speech pathologist will also help her with her enunciation and eating. I would try to get the ball rolling on this as soon as you can. It really will make a big difference in helping your mother to adapt.
Hang in there, hopefully the worst is behind you both.
PS... Please look for the tiny flashing envelope next to the "My Stuff" tab (top of the page in the center). Click on it and read your private messages Ive sent you about how to add a signature. It really is a huge help if we know the basic history. Please help us to better help you.
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Jessica,
I agree with what Christine has said.
My mom has had two hemiglossectomies-one in January, and then again in July. We weren't sure what to expect after the first surgery. Her flap and face were very strikingly swollen, and she could not close her mouth for at least a week and half to two weeks. All we could see was the flap, a huge incision, and very little of the "native tongue." The reconstruction surgeon explained that sometimes with thigh flaps, the flaps can be a little too big. He said better too big than too small in terms of function (the bigger the flap, the easier it is to make contact with the palate to initiate a swallow or make some speech sounds), and eventually shaving the flap down would be a comparatively easy procedure. After a month, it looked much better. She was able to close her mouth around her tongue, and was much more intelligible, but her speech was definitely affected-she sounded as if she'd had a stroke. It was getting better, though. This was without speech therapy. She had to have radiation very soon after her surgery, and the radiation also shrunk up the flap some too. I don't think it made sense for her to have speech therapy at that time since they were about to wage war on her poor oral tissues.
For the second hemiglossectomy, they had to take more tissue. The flap (from her other thigh) was smaller-I think because they had to use a portion of the graft to reconstruct tissue in her throat and on her neck. This time, they took more toward the base of tongue and throat, and she required a PEG tube. She's in speech now, but mainly for swallowing therapy. They waited to initiate therapy until she healed a bit more (about 8 weeks). It seems that it takes time, and once she heals a bit more, I'm sure your mom will benefit from some speech therapy.
I'm wishing all the best for your mom, and some peace of mind for you.
