So I'm about 9 months out from my 60% glossectomy, and am still looking at the flap the doc put in as being about twice as big as what from my perspective it needs to be. I know recovery is at least a year for this surgery, but the flap really hasn't shrunk much at all in the last few months and I don't see it shrinking by 50% in the next few months either. Right now it just looks like an elephant that my remaining tongue is dragging around on it's back - I don't see why the combined old tongue/flap can't have a cross-section that is a little closer to a single healthy tongue.
If the flap were smaller, I'm certain I'd have at least a fighting chance of learning how to eat semi-solid food again, but with the size of it being what it is, eating is just not possible, I can't get the food around/over the flap. It also affects my speech of course; I don't expect to sound how I did before surgery, but at least I wouldn't sound so much like I have 8 cotton balls in my mouth.
So, has anyone had flap material removed? Was it difficult? Are there risks, like could it (removal) make things worse? Did things improve once healed? Is it too early to ask my doc?
Thanks.
Joe, its fairly common for the flap to be larger than is needed. Its much easier to take a little bit off than to try to add some on. Dont be surprised if the doc waits a full year until he agrees to do any resectioning. It can take the body a full year to adjust from this type of surgery. Swelling can continue to subside gradually thru out the first year.
Surgery to remove some of the flap is much easier than what you originally had done. Not to diminish they risks of surgery (just like any other surgery, it has risks) but it really is a piece of cake. Its a short surgery and you should heal quickly.
Thanks Christine, I like the sound of 'piece of cake' on many levels
My flap seems too big too. It gets bitten all the time. It's too wide.
Hi.. sorry I didn't comment earlier - it's been a crazy few weeks for me. IT WILL SHRINK. Mine too was WAY TOO BIG. My surgeon ( a terrific dr. BTW) said don't worry we can debulk it. WELL - not unusual but I was less than enthusiastic at the thought of allowing him in my mouth with a scalpel (unnecessarily) When I went to visit my plastic surgeon for my last visit way back (2 years ago) I repeated what my Surgeon/ENT said. He said NO!!! radiation shrinks tissue - leave it. He was quite right. three years out it is fine. I do film work and have always been quite concerned about a lisp.. over the last few years it has shrunk. I was recording a bunch of lines for a voice over audition a few days ago and listening back I had NO slurring and no lisp. It just takes a while. Mind you this is very much dependent on how good your surgeons are. I had a third to half of my tongue removed. So it takes time. Things like temperature, and lymphedema can affect it. Once you get a clear scan, you can start with lymphatic massage. This will help with your shoulder and neck and tongue. Hugs. It will improve.
First, from the little I've seen of your commitment to this site I don't think you owe anyone any apologies or explanations for anything...
Second, thanks for the perspective of a few years out - I have an appt with my ENT surgeon in July and have been pumping myself up to demand some of the bulk be removed, but your info will help me have more patience. I haven't experienced really any shrinking over the past several months and had gotten to the point where I was convinced there's no more coming, but maybe I really do have to wait years. My speech is definitely affected by the bulk; I still have the tip of my tongue, and when I try to say any word with an 'L' in it the bulk keeps my tip from touching the roof of my mouth - it (the bulk) hits the roof first (it actually presses against the roof when it's in 'rest' position). So it bothers me, but it sounds like I need to just be patient. And to have a little perspective....