Hi. I'm a 3-year survivor of Stage 2 Squamous Cell Carcinoma of the tongue, N0M0. On 2/4/05 I had a hemiglossectomy and free flap resection of the left side of my tongue, made from a piece of my right forearm. "Flappy" and I are doing really well, but I have an odd question. Even now, three years later, I still have a strange sensation when I touch the left half of my lower lip. I can only describe it as a York Peppermint Patty sensation (cool and tingly). Is this typical of my kind of procedure? Will the feeling ever go away? Flappy was "born" at the University of Michigan hospital, and works amazingly well. I didn't need radiation, chemo, or even speech therapy.

Thanks for your time and attention,
Julia

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi Julia, welcome to the forum. Good to hear you're doing well. I'm a SCC survivor aswell, I get the same sort of sensation around one of my scars if I drink anything too cold. Dont know if it will go but I'm 10 years in so maybe it wont.

Hello Julia

Welcome to the club.

The tingling weird sensations are called paresthesia. It is caused by regeneration of nerves in the flap and also by reinnervation from adjacent nerves from under the chin area into the lower lip. This is similar to what is experienced when the nerve supply to the lower lip is damaged in a jaw fracture (the nerve runs through the lower jaw bone to supply the lower lip). The numbness, caused by cutting nerves during the surgery, is replaced by the paraesthesia, caused by the reinnervation. Eventually the sensations goes away (a slow process) or you get used to it and you don't notice it anymore.

Hope that explains it.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi Julia - and welcome to the family.
My Dad has recently (Nov 07) had the same surgery as you - also T2N0M0, and also left side. His 'flappy' also seems to be doing well - love the name! His lower lip (left-side) is currently completely numb and when he asked his consultant about it, he was told that this would be permanent. However, your question and Vinod's reply seem to suggest that maybe some sensation, albeit a bit weird, may return. May I ask was your lip originally numb or have you always had some sensation? Thanks and all the best,
Sara

Reinnervation of Flaps and Grafts of the Face

Michael E. Lutz, MD; Clark C. Otley, MD; Randall K. Roenigk, MD; David G. Brodland, MD; Hongzhe Li, PhD
Arch Dermatol. 1998;134:1271-1274

quote:

In summary, predictable factors are associated with sensory recovery in patients undergoing reconstruction with flaps and grafts on the face. Sensory recovery tends to improve with time and is better in patients with flaps than in those with grafts. Patients with flaps can be reassured that after 2 years, sensation is regained in 75% of patients. Patients with grafts should be informed that touch sensation is regained after 2 years in only 29% of patients. The degree to which sensory dysfunction in flaps and grafts of the face affects quality of life and patient satisfaction needs to be explored for a full understanding of sensory dysfunction after facial reconstructive surgery.

In the meantime, we believe that clinicians should routinely consider the potential sensory changes that may result from reconstructive closure.

Hi Sara
Until my surgery I had normal sensation in my lip, and I asked my doctor about it. He attributed it to the nerves being cut. It's diminished a bit, but it's still there.

I've been referring to my flap as Flappy for so long that other people are using that name. Last July, during a visit to my otolaryngologist, his nurse asked one of the new doctors "oh, have you met Flappy?"

Julia

Julia,

I'm a three time tongue cancer guy being offered a "flappy" of my own. Can you talk a little about your speech and swallowing. I'm wrestling with this concept as my other surgeries weren't so radical as what I'm facing now.

thanks,

bob

Hey Bob

Before Flappy, I was told that I'd probably have a lisp afterward--I was anticipating anything from Cindy Brady to "throw momma from the train." When I first started talking again (no one told me not to talk, it just didn't seem like a good idea) I did have a bit of a lisp. Now, three and a half years later, I speak as
clearly as I did for the first 40 years of my life. The only problem I have is what I call tongue cramps. From time to time, my flap seems to get kind of stiff and I feel like I'm about to be sick. I can feel them coming on, so stop talking until it goes away. I've discussed it with my doctor, and he says it's basically muscle fatigue because Flappy doesn't have the same support as my native tongue. He equated it to a marathon runner's leg muscles (or maybe he was just implying that I'm a chatterbox). He's even offered to pierce my tongue so I could have something to hold during stretching exercises. He is understandably pleased with how well I've done with my flap.

I didn't need speech therapy, but they even use me as a bit of a show and tell. At my last clinic visit, one therapist brought in a new student because she wanted the student to hear how well I speak "considering the size of the resection." People I've known all my life say they can't tell any difference, and folks I meet now are surprised when I tell them.

One thing that kind of surprised me was how temperature sensitive Flappy was for the first few months. The first time I had ice cream after surgery, my flap got stiff, the way your fingers do when your hands are cold. I sounded like I'd had a stroke until my tongue warmed back up.
Swallowing is not a problem (apart from the fact that I do too much of it). The day I was discharged I had to do a "swallow study" to see if I had any problems and--no kidding--to see if my neck leaked (had a trach for a month). To make sure I swallowed ok once the "npo" (nothing by mouth) restriction was lifted, I had to tilt my head to the right whenever I ate or drank.

Do you know yet which kind of flap you're going to have?

I hope it all goes well for you.

Julia

Great insight Julia!!! thanks. I have no date yet but should here this week. You bring some points to bear that I've not thought about... but I'm certainly encouraged by your story!!

I hope I write so encouragingly after my deal is done.

I'm in the place where about every 6-12 hours I have a severe pain episode that radiates throughout my head and originates in my tongue... these episodes make it easier for me to say "cut it out now"... as I'm understanding what life would be without this surgery.

thanks so much for your positive story... I appreciate it very much.

bob (pembo)