Member

Registered: 09/14/10
Posts: 8
Loc: Massachusetts My free flap is the whole top of my tongue - Had the surgery September 3 - Home on the 11th --came home with a trach, suction machine, peg tube in stomach, peg tube feeder, nebulizer ---
Tongue is still very swelled - feels so foriegn - Speach person brought cold lemon swabs ....I could not feel or taste anything on the top of my tongue ....some to the sides ....
Has anyone who had this surgery ...Do you get anything back?
Also want to wait for a bareum swallow before letting me try food - I can't get liquids over the big tongue, when I curl it a little I can get it back to swallow. Others with experience ---will I ever be able to eat liquids/solids ....how long did it take you? How long before you had trach & Peg tube removed......How long before the forearm heals and looks like skin and not raw meat? Really would love to hear from you
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53 Year Old Female Non Smoker - Non Drinker
Stage 2 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG

Laureanne, I can help with the arm question. The site where they harvested the graph from will take several weeks to heal. Im now 13 months post graph and my arm still is red and ugly. It is lighter than what it was last year but it still doesnt look much different than it did. My arm was very painful for the first 3-4 months post surgery. I had 40 staples there, some of them became twisted and had to be dug out to get removed.

Hope you get more responses from others who have had tongue surgery.

Hi Laureanne, i may be of some help with the taste and swelling. I had half of my tongue and part of the floor of my mouth removed and replaced with a flap from my left forearm, in march of this year. This was followed by 35 radiotherapy and 2 chemo in june/july. My tongue is still quite swollen but is gradually going down and hopefully will be back to normal soon. I had the same trouble as you with eating and drinking, but i am now able to drink normally and i am able to eat quite a variety of foods providing they are soft or mashed up. Things do vary from person to person so dont feel too bad if you think its taking time to happen. As for my forearm site, it has completely healed and is hardly noticable now. I only had my trach for 2 weeks, but never had a peg so i cant help with that one. Hope this has been of some help. Good luck for a speedy recovery. Clive.P.S. I can now taste most of what i eat, and it is improving week by week.

Hang in there, Laureanne!
I had a similar tongue graft, but the tissue is from my left thigh. I had a PEG tube in until a week after radiation, but never used it after I could swallow, which was about a month after my surgery. I also had a trach, which came out about 3 weeks post surgery. I am a fast healer and was helped by a lot of prayers, but like you, wanted to know, "how long?" It is obviously different for everyone, but I was diligent to get healthy as soon as possible. It has been 7 months since my surgery, and my speech continues to get better. Some days, it seems, my tongue is more swollen than others, and also depends on whether or not I tried to eat some food that is more textured, like nuts or granola. Someone said to recored your speech, so that over time, you can hear the improvement. I wish I had done that because I am often hard on myself for not speaking more articulately. I know I have come far, but would like to hear it for myself.

Hang in there, and before you know it, some things will start to seem "normal."

Just met with my surgeon and my ent doctor ..they are uncertain if I should have radiation treatment ...Feel it may do more harm than good. Path report showed dyspasia in lots of the tongue. My other option would be to watch it by going in for a appoinment every month for the first year for changes ..they thought it was assesible enough to monitor any changes.
Does anyone out there have or had dysplasia? what was your treatment?
I would still like to hear from others who have had simular surgeries as mine and how they are doing now ....
Thanks!!

Hey Laureanne, I had a similar surgery for SCC of the right side of my tongue back in April. I had half of my tongue removed and a portion of the floor of my mouth along with 60 lymph nodes from my right neck. I had an NG tube for feeding rather than the PEG and the donor site was my right thigh. I have to be honest with you the recovery time takes a while, but you need to keep in mind your tongue went through a lot of trauma. The good news is, you WILL heal. I know it seems very overwhelming but someone told me when I was in the early stages of recovery..."Rome wasn't built in a day." That strangely helped me cope...along with a positive attitude and love and support from family and friends. Since my surgery I have had 30 radiation treatments and to be honest the radiation was 10 times harder to deal with than the surgery itself. If you can stay away from radiation do so! BUT if doctors feel it is necessary that you do what you need to do like I did. My last radiation was Aug 17th and I am still having swelling problems and as of late I may have what is called Trismus which is sort of like lock jaw, I can only open my mouth about an inch. Only enough to fit one finger in. What I am trying to say is, your body will recover just fine, of course it varies from person to person but keep your head up and most importantly relax the best you can and stay POSITIVE. It really is a big factor in the healing process. I feel fortunate today to be here and in the end that is all that matters. My speech is coming back slowly without any speech therapist (even though most people disagree not having one) and I am on my way back to living my life again. I wish you the best and just want you to know that if I can do it you can too. Have faith in yourself. And best wishes to a speedy recovery.

Thanks for your input. It is nice to converse with someone who has gone thru this. You are a lot younger than me, I hope you have a good outcome. It looks like they may wait on the radiation and keep a eye on it. I am happy with that!! I am speaking pretty well considering --I have had some speach therapy but there is not much I can do - most has to be done on my own anyway ...I exercise my tongue and mouth --practice eating different things. I do well with milkshakes so I make them with Ensure and Ice cream, that is the most of my nutrition. I have trouble swallowing even when I chew really small bites - need to wash down with liquid. My tongue is still very bulky. I had 19 lymph nodes taken out and all were clear! How well can you eat and what do you eat? Any suggestions? and yes, couldn't do without support from family & Friends!!

Laureanne:
You WILL be fine. You are focusing on the right things. Kepp exercising, keep swallowing and experimenting with eating different things and trying to find a new normal. It takes a lot of liquid to eat (Naturally) so you're "getting it." Work with eggs (Still a favorite of mine), cereal, oatmeal, soups, etc. Keep the Faith!
Regards,
Steve

You have such a good outlook on all of this and you really sound like you are taking this whole experience by the horns and giving it the fight of it's life. That being said I am certain you will recover quickly! I am VERY surprised to hear that you are eating so well...and yes milkshakes are the greatest! As far as me at this point (6 months later) I am eating almost everything! Even after the radiation knocked out my taste I was fortunate enough to get almost 100% back! I was so afraid of not having it again. To answer your question, I eat almost anything, however the rads locked my jaw, but it is getting better as the swelling in my neck is going down. At this point for you I would suggest to continue with the milkshakes and boost plus (360 calories) my doctors suggest that for pure nutrition as well as Carnation 560 cans.I am sure you have heard this over and over again from your doctors but as long as you keep the nutrition up you will recover faster! With the bulk in your tongue, i would be careful with the solids as to not agitate it and allow it to heal. Exercising you tongue, jaw and neck is good advice. As my doctor had told me....If you don't use it you lose it. ...Mobility that is. I am doing the exercises all throughout the day...always a good idea. You seem to have this under control! Keep it up and you'll be out of the woods before you know it!

Thanks for your encouragment ...Yes, I think that I am doing good. I am trying food all the time. It is hard to swallow it after I chew it up but hard to get it past the tongue so after a few bites I give up ...but keep trying. I find cauliflower and summer squash and butternut when cooked soft are good. I was using a can of formula that I put thru the feeding tube but when the swaLLOWING GOT BETTER USED MORE ENSURE mixed with Ice cream which makes it very enjoyable --was afraid I was eating too much Ice cream but my daughter pointed out how It was the ONLY thing I was eating so it wasn't adding too much ...I use 3 cans ensure with about a cup of ice cream for each can (I Like it thick!)
I have not had much activity due to a spine problem so unfortunatly am not able to walk well - I start physical therapy soon so I hope that will help...other than that I feel ok. My face is healing but still swelled gum and front teeth hurt from when they cut my jaw. arm is healing well too. I like hearing other people were eating better after 6-9 months, I just have trouble moving the food to the back of my throat. I push the food with my finger. Finding ways to cope! Like hearing how everyone else copes ....THANKS!!