Feb 04 - Had subtotal glossectomy with reconstruction of tongue (radial forearm free flap) and floor of mouth defect, left neck dissection, pharyngoplasty, and mandibular osteotomy. Neotongue was sutured to floor of mouth. PEG Tube inserted - still have. 36 rads finished May 04. Therapy for speech and swallowing started Dec 04. Therapist noted that I would most likely be limited to foods that I could use my syringe with since my tongue cannot propel the food back for swallowing due to its immobility which means protracted dependence on PEG tube and poor speech.Therapist just showed me an excerpt from a swallowing therapy book that seemed to suggest that the tongue could be surgically "freed" from floor of mouth to provide movement. Does anyone know if this is possible?

Don't misinterpret the lack of replys to your post to mean that people are not interested in communicating with you. I think that you have asked a question that in 3 years, I have not seen discussed here before, and I suspect that few people have the final solution that you have with an immobilized tongue. Hence, not many knowlegeable comments to make from the group of posters. I am curious what your doctors have said about this, and if it is something that they routinely do after some fixed period of healing time. I'd be interested in what they have told you.

Dear James,

I also had a PEG tube in for seven months. I have speech problems with certin letters. My speech has improved over the last year. I have to remember to talk slowly and look at the person I'm talking to. If you have to rely on the peg tube it's not such a big deal. It allows you to make sure you are receiving proper nutrition to heal & maintain.
I have no experience with the tongue problem you describe. Hoping for the best for you,

Danny Boy

Brian and Dan-Thanks for your replies. I am to see my ENT (otolaryngologist) for my three month checkup this Wednesday and I will pose the question to him about the possibility of releasing a reconstructed tongue from the fixed position its in now. If I don't get any encouragement, my next step will be to attempt to contact the author of the book that suggests the possibility of this type surgery. One thing I've learned in this process is don't ever give up and be proactive. I'll post what I find out Wednesday.

Thanks and good health to all!

Jim

James I dont know if your situation is the same as my husband's. His ENT says his tongue is tethered to the floor of his mouth. He has said he can free it up with a small out patient surgery. He said that would help with his speech and swallowing. My husband has had some other things going on so we havent had it done yet. I think when we go to 3month appointment in July we are going to tell him he is ready for the surgery. I think what you are asking is possible.
Hope all is well,
Cheryl

Jim,

I'll be interested to see what you find out. I only recently gathered up the nerve to really look inside my mouth and I'm pretty sure my reconstructed tongue is tethered down as well. That's not something any of the doctors ever mentioned. My plastic surgeon told me last Friday the sutures would dissolve over the next month, but I don't know if those are included or not.

Thanks for the post. Sorry I can't give you any information.

Jennifer

Cheryl and Jennifer,

I saw my ENT today. His opinion was that (1) I'm still healing and he doesn't want to do anything orally with me for the time being -- I had floor of mouth and pharynx involvement as well as Stage 4 tongue SCC so that accounts for his reluctance I'm sure; (2) most (80-90%) of my tongue was removed and replaced with skin, vessels, and tendons from my forearm to form what he called a "neotongue". He said it looks like a tongue but isn't a tongue in the functional sense since the original muscles that control movement of the tongue are gone. Meaning that even if it were freed up from floor of mouth, it would not funtion like a normal tongue where a person has control over its movements. What little wiggle I have at the back of my tongue is due to the small stump that was left after subtotal glossectomy.
He encouraged me to keep trying to swallow as much as possible to build up those muscles plus keep doing the therapy exercises which I will certainly do.
Cheryl, I'd sure be interested to know how your husband gets along after he has his tongue freed up. I assume that he did not have nearly as much tongue removed as I did and no floor of mouth cancer. I certainly hope he didn't. By the way, would you mind sharing the name of your ENT in case I choose to pursue options in the future. Sure would appreciate it. I'm still going to try to contact the author of the swallowing book that discusses this procedure.
Jennifer - Just because I didn't get the response I was hoping for, you might want to check with your ENT as each case is totally different and you could well be a candidate for this "tongue release" procedure if the sutures don't dissolve on their own.
My best to all.

Jim

Jim,

I do not know if my hubands situation is the same as yours. He did have 2/3 of his tongue removed, some floor of mouth & neck dissection with a peck free flap.
Last year he also saw a plastic doc to fix his jaw from the original surgery (nonunion from original jaw split) he was going to free up his tongue at the time of that surgery, but the surgery took 14 hours and they said they didnt have time to free the tongue. They were worried about him being under so long. My husband did have a stroke during that surgery (didnt know till next day) so he has not really been in a hurry to have anymore surgery. I really dont know if he will ever get it freed up. He can eat, not well but he can get down mashed potatoes ect. so for now he is happy being able to do that. He had his peg tube in for a little over 2 years.

Hope all is well,
Cheryl

Cheryl,

Thanks for your reply. I'm very sorry to hear that your husband had a stroke last year. That's another burden on top of the cancer. I certainly understand how he feels about more surgery as I was under for about 12 hours. Sounds like his original surgery was much like mine.
My ENT is a top notch surgeon but has a reputation for being very conservative when it comes to starting therapy or any follow-on surgery until the last ship has docked. That's a good thing since I also had to have my jaw split but so far no complications.
His main point about freeing up a simulated tongue like mine is that mobility without control doesn't buy you anything. I think another part of his reticence to do it is that he feels I'm still healing (16 months post surgery and 13 post rad). If I don't find any alternatives, I may approach him next year to see if he changed his mind. Best new is that I'm still free of cancer!

Take care,
Jim

James,

How are you doing? I'm following up quite a long time since these posts. Can you give me the name of the bok that discusses the tongue release procedure?

My situation is a little strange: they only had to take about 25% of my anterior tongue but the surgeon chose to do a "mucosal advancement flap" to close the defect. This was ok until I recieved radiation to the oral cavity about six months later "for good measure" since my nodes got involved and I needed radiation for that. The radiation caused the scar to draw up and now my tongue is tethered to where I'm still on G-tube and/or liquid diet because I can't manipulated food enough to get the calories any other way.

Thanks,

Mike

age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09.

Thanks, Mike, for making this follow-up post. I am interested not only in the book that James mentioned, but in James' status now.

James,
I have a very similar situation with you in that I had nearly all of tongue removed (total glossectommy) with flap from left thigh, attached to mouth floor, and would like to know more about freeing up the simulated tongue. Thanks.

Jojo