Has anyone had a significant part of their tongue removed, and had plastic surgery to reconstruct the tongue? My sister and I are wondering if the tongue can function to move food around and for speech purposes after such a procedure. She has such difficulty with extreme sensitivity, no taste, and how long it takes to eat as it is (about a third of her tongue was removed in the last surgery) and now the doc says they need to remove more of the tongue. Would love to hear from anyone who has any similar experience....

DenverSis,

I've never heard anything about tongue reconstruction and would totally surprised if it actually existed. I had a total glossectomy so even if there were such a procedure, I don't think it would work on me. Even without a tongue I have started eating "real" food again even though the few taste buds I have left were pretty well zapped during radiation. I also have sensitivity to food temperature. I have been working with a speech therapist and although my speech will never be the same as before, it's pretty damn good! I haven't come across anybody who hasn't been able to understand me except for the occasional word or two. Tell your sister to hang in there - everything takes time and patience.

Nancy

Denversis - my sister had a partial glossectomy (50%) and her tongue was reconstucted with a flap taken from her forearm - long involved surgery involving microvascluar surgery - this was all done at the same time. I think this is a surgery many folks on this board have had.

Hi Denversis
I'm waiting to have the same surgery, I've been told that it will be a long haul, but that I will be able to eat and speak again, I expect a lot of hard work on my part, I go to the hospital tomorrow, hope to be given a date for the operation soon. so tell your sister to hang on in there.. we all can do this..
Sunshine... love and hugs
Helen

Hi Nancy, Carol & Helen,
Thanks for your replies. We went to the surgeon yesterday and got the details on the tongue reconstructive part of the surgery. In my sister's case it appears that it would be better to take part of chest muscle, move it up under the skin through her chest and neck to her mouth.

Since she is 70 and this would be her 5th surgery on her tongue, she is seriously wondering if this is something she wants to do. It sounds sooo complicated and tough on her, and she is down to 90 pounds now because of pain every time she eats. (Her diet consists of Ensure, oatmeal, poached eggs and watermelon juice since the last biopsy.) She is such a love and has such a great way of loving and taking care of everyone else, it so hard to think of her fading away.

Janis

I had squamous cell carcinoma treated with surgery and tongue reconstruction with a radial forearm flap 3/8/04. I'm 59 in otherwise good health. This procedure is rarely done and only in Southern Cal. at UCLA. My doc has done over 500 of these surgeries. I found him with a recommendation from a patient on another board. I am out 5 months, I was able to eat solid food a week after surgery. I feel the surgery worth the trouble (week in hospital with traceostomy and Jtube, tongue still swollen, flap donor site still recovering) as I have a full albeit two tone tongue which will always be a bit numb. My advice is to find out how many surgeries your doc has done and what his success rate is. They also took out some neck nodes at the same time.
Howard

Denversis - I had bout 1/6 of my tongue removed on partial glossectomy with tissue taken for the graft from upper chest, actually an extension of the incision for the neck dissection.

I was eating semi-solid food by the time I left the hospital, stuff like french onion soup, pudding, yoghurt etc. Graft caused problems the day after my release from hospital, blood clot formed between the graft and the tongue, created a heck of a mess for an hour or two as well as panic on my part. Went back in and doc removed it in his office. Immediate better results in my case, was eating soup a few hours later.

Speach ok but slightly slurred sometimes, was able to eath fairly normally about 10 days after release from the hospital, actualy was eating better than before the surgery because the cancer had made a mess of my tongue to begin with.

Thing is to get a good surgeon who has had experience at this. Mine was from a head and neck cancer clinic in Vancouver who happened to be in town to fill in for regular surgeon.

Depending on how radical the tonge reconstructon is it might be worth the trouble, as Howard said above. I know the surgeries get to be wearing on one's psyche, I freak if I even see a needle, even on TV. Sometimes the mental battle is harder then the physical one. I also found that for some reason biopsies were harder to recover from than the original surgery.

Hope your sister does ok, and we're all pulling for her.

Bob