Hi everyone
I'm now 10 months after surgery and have developed a small,hard, quite painful lump on my flap, near the tip. The join between the flap and old tongue (nearby) is also sore. I don't think it is worth seeing my GP so have rung the hospital to see if I can be seen before my next 3 monthly check up. The nurse was quite helpful so I'm looking forward to an appointment in the next week or two.
Meanwhile I'm very puzzled. The flap has no nerves in it. How can it be painful? I'm also slightly worried. I read somewhere that on rare occasions people have developed SCC in their flaps!
It's very difficult to find information on flaps on the internet. I found one abstract which mentioned the growth of nerves in an insensate flap ... Hmmm
Hey Alpaca. My sister developed a lump on her real tongue right next to the flap. They took her right in and did a biopsy which came back as inflammation. I think if u would call your surgeon they will take you in and do the same. I also read about granulomas developing too if u want to look that up. I would call and get a biopsy done ASAP. The quicker you get in the faster you are to knowing what it is and can solve the worrying you are dealing with right now. Please keep us posted.
Thank you Susan - that is very good advice. In fact at my last check up a month or so ago I heard the surgeon mutter something to his surgeons about "granuloma" or "granulation". Because he wasn't MY surgeon who had been called into an urgent operation, I didn't follow this up, I was sort of put off guard by seeing a different doctor. If I did hear right, it could have grown bigger and painful since then. I'm still waiting to hear when I will get an appointment - I'm sure it will be sometime soon.
Hi- I am out 6 years after a successful SCC T1N0MO free flap. I developed a granuloma on the joint of the flap to the bottom. It was diagnosed, lasered oblated 6 weeks ago and soon reappeared ON the flap... Will probably have it lasered again. It is raw looking but does not really hurt. No words of advice to you other than these sometimes come from residual sutures, but good luck.
Hi M,
At the clinic early on with my flap/tongue problems they tried silver nitrate sticks for granulation with only minor results in my case. (search nitrate..it may work for you).
Some of my past problem was caused by rubbing on a bottom tooth.
Here are a few links with recent postings that may be of interest.
I had my 6 month check at the clinic last Friday and one with my oral surgeon the previous Monday.
Next visit with OS is in November I will discuss lasering as it is still an option he mentioned and I am keen to try it.
http://oralcancersupport.org/forums...;Main=10513&Number=118192#Post118192http://oralcancersupport.org/forums...;Main=10572&Number=118981#Post118981http://oralcancersupport.org/forums...;Main=10575&Number=118861#Post118861
Thanks - funnily enough I didn't come up with anything when I searched for "flap". Does anyone know about feeling, nerves, sensation in flaps?
My free flap has no pain sensation and as a result I had burned it on pizza. That looks like a skin burn.
Hi everyone
Had an appointment with the local ENT guy today. He took a biospy. The inflammation had died right down in the last week or so leaving the lump smaller and more manageable - he actually took it right off. He doesn't think it is malignant - nor do I. I'm quite glad to be rid of it though because the tongue looks pretty awful anyway without another irregularity developing! (I have been relieving teaching in a rough school and the younger kids have given me a hard time about my lisp and scars. So here's hoping that it was just a granuloma or some such and I can continue the progress I have made with my speech.:)
Woohoo. Great news. Very glad you had it checked out.
Ugh kids could be very mean. I know I could have been when I was younger also and regret it immensely. Maybe just telling them before class. Hello my name is....... And I am an oral cancer survivor!!!! How about that for some inpowerment. I know that if my teacher told me that when I was younger I would talk to my friends about it. Which would spread the word.
I know it's hard but don't be embarrassed by what you have gone through be proud!!!!
What a great suggestion, Susan. Kids can be unthinking and uninformed. When I was teaching Spanish and French at college level, one of the native speaker teachers happened to be from Spain, where everyone speaks Castillian Spanish which includes a lisp for many of the words. So - when teacher evaluations came around, several of her students complained that her "speech defect" made it difficult to understand her! And we all had to chuckle about that one. The students were then informed about Castillian Spanish and that it was the intention of the language department that all students be exposed to various types of Spanish accents. So - Alpaca may have a temporary "Castillian accent" and the students should just "get over it"! Throughout life they will be meeting a lot of people who may not talk exactly the way they do. No one undersood me either when I first came South from "Up North"! It took the Manager and three clerks at Grocery store a good 20 minutes before they could understand that I wanted to know where the rice was. (you know,those tiny little white things that are hard and they swell up when you boil them in water and no, it's not grits!).
My flap is still painful and no one can tell me why. When I put my tongue to the roof of my mouth or to the floor or side of my mouth for that matter, the suture line is painful. Although I can't feel when food or water go on it, it's still painful.
I am 4 months out of surgery and the docs said it could be some deep sutures still trying to work their way out, but it could be that way the rest of my life.
Same with my "free-flap" transplant site and the blood vessel incision. Docs say it shouldn't hurt, but it does.
As for the speech, i have the lisp and I can't say my L's or R's very well but otherwise I am ok. Docs say it should get better when my lymphedema is taken care of, but eh, you work with what you have to to get through.
Hey, it's good to hear about flap and speech issues. I love the idea of the Spanish lisp. Funnily enough I've been thinking of learning Spanish just for fun:) And I have just heard from my GP. My biopsy showed no cancer but I have thrush. That might be why I had a flare up of pain a few weeks ago.
I'm determined to achieve optimal speech and have bought a little Sony voice recorder. It's so easy to read something into it and listen and try to improve.
I had thrush twice in my 1st 2 years of recovery and it wasn't fun. The first time my tongue literally split down the middle but fortunately it came back together.
Great news about your biopsy!!!! Best of luck with your speech improvements.
Fantastic news that the biopsy is clear of cancer. It is very worrying until you get the result.
I presume you have medication for the thrush?
Good luck with the DIY speech therapy
What a great idea! You could even take it on your walks and describe the scenery that you are photographing.
Gabriele
Hey Alpaca,
I'm happy to hear that your lump doesn't seem to be problematic any more. I also am a teacher and I am also currently teaching myself how to speak more clearly and effectively. My speech therapist sent me a gazzilion tongue twisters and told me to call her if I needed anything else, so I have been talking to a school speech therapist in my building. She mentioned putting a long wet frozen q-tip on the middle of the tongue to create a hollow there. She said that would improve the s sound and it does, to some degree. It takes a few weeks of once a day for about 10 minutes to see results. Good luck. Let me know if that helps.
I also love the Spanish lisp idea. I teach in an international school and will have to use that one. I also will use my tape recorder. So far, only one student has asked me what is wrong with my speech. It's a new teaching job for me, so they never heard me before the surgery. And only one student has noticed and commented on my neck scar. Funny how you think these things are more noticeable than others do.
Since my granuloma laser oblation and subsequent 3 granuloma regrowth we figured out it is Crohn's Disease related which can manifest anywhere in the digestive system. The normal part of my tongue always has little white sores. Anyway the lump was treated twice with cortisone injection and has shrunk significantly. just an FYI
7 year survivor SCC stage 1 N0M0 forearm flap reconstruction no chem or rad. "Get someone/ someplace to treat you who does this everyday" you can only have one succesful first surgery....
Since my granuloma laser oblation and subsequent 3 granuloma regrowth we figured out it is Crohn's Disease related which can manifest anywhere in the digestive system. The normal part of my tongue always has little white sores. Anyway the lump was treated twice with cortisone injection and has shrunk significantly. just an FYI
7 year survivor SCC stage 1 N0M0 forearm flap reconstruction no chem or rad. "Get someone/ someplace to treat you who does this everyday" you can only have one successful first surgery....