"Phantom" Pain (paraesthesia) in tongue flap - LOL - FRANKENFLAP!!

Anonymous7/6/2023
Anonymous7/6/2023 Member Posts: 176
edited September 2014 in Head and Neck Cancer #1

Am I the only one who experiences this phenomenon in the tongue flap?

I've had it ever since surgery.

It isn't usually 'terrible' pain. More tingles, and the sensation that the flap is moving, when it isn't.

My flap has no innervation, it's "insensible" - so this is strictly a 'brain' thing, the same phenomenon as phantom pain that amputees may experience.

It's just weird, and quite unexpected, what my brain has "done" with this lump of arm that's suddenly sewn inside my mouth.

Another point is, the flap feels absolutely huge. But in reality, it is one-third of my total tongue. (The whole thing IS a little wider, and taller, than a normal tongue, it still has some settling down and shrinking to do. Radiotherapy shrunk it a lot.) But sometimes I have to look in the mirror to remind my brain that this thing isn't the side of a tennis ball, because that is precisely the size my brain thinks it is! LOL! Tongue Out

Apart from my consultant, and my husband, I've not told a soul about this, as I'm aware it will sound very strange to the uninitiated. My consultant says it is very normal, expected.

My experience is the feeling that I have 3 separate tongues:

1. The left side, the non-operation side.

2. The flap, which feels like 2 tongues, one inside the other.

The it is this "inside" tongue that I can feel rippling and moving around. This is absolutely a neurological trick, as it can have no movement of its own, nor feeling.

As I've said, it's usually more tingling than pain. However, rarely, there will be a *very* sudden stabbing feeling, as though a needle has been stuck in. I usually try to distract myself with a drink, or wriggling the whole thing around, and it subsides quickly enough. It's very sudden indeed, a proper jolt, enough to make me flinch and people notice LOL I bet people think I'm a bit bonkers when it happens! ;)

In the grand scheme of everything else, this is a minor issue, and definitely not the sort of problem I'd need medication for, or input from my cancer team. It's just a weird accessory difference that I've taken in my stride :)


Not sharing this for any particular reason, other than *to* share. I wonder if other people have similar oddities, as my consultant suggests?

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Estelle

    Our nerves can do a lot of weird things. I know for me I have no feeling on the left side of my tongue and very little feeling in the middle then a little better on the right side. I can't stick my tongue out more than ½ inch but to me it feels more like 3 inches. I can feel my teeth on the right side but not on the left side. If I try to take a pill it can get lost if it goes on the left side of my mouth. Then there are times when my tongue just tingles with sharp needles sticking it all over, and get this, it feels good but hurts like hell; don’t ask me to explain that. I have a very good nerve doctor that I see who has helps me a lot to understand my condition. Wishing you the best always

    Tim Hondo   

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #3
    Tongue

    my tongue feels normal no different from before the BoT surgery. My flap didn't come from my arm they used the inside flesh in my cheek just a thin repair. I have all movement and no feeling of an alien in my mouth. The surgeon cut out the cancer and it had a small margin and spread to the lymph glands which were removed.your very unlucky with these twinges. I do have some problem with tight sinews inside my cheek and it pulls over two teeth, I keep biting my cheek. I'm grateful for the normal tongue. What did others feel after a skin graph from the arm to the tongue it must feel you have something in your mouth all the time.

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #4
    tingling zaps!

    My nerves play all kinds of tricks on me, too!  I know exactly what you mean.  I have tingling a LOT in my lower jaw area and the darn area ITCHES like crazy sometimes.  However, I can not feel anything so I can't scratch!  I'm numb (forever) in one area on my face (chin/cheek area) so how can it itch?  haha  The tingling goes from my ear to my collar bone and feels like little shocks sometimes.  My face FEELS like it's twice as big as it really is.  I have a flap inside my mouth to give me the illusion of gums on the left side and to wrap the titanium plate that is now my jaw.  I feel like a big ol' freak head but looking in the mirror, it's not so bad.  Cool

  • thennies61
    thennies61 Member Posts: 285
    #5
    TracyLynn72 said:

    tingling zaps!

    My nerves play all kinds of tricks on me, too!  I know exactly what you mean.  I have tingling a LOT in my lower jaw area and the darn area ITCHES like crazy sometimes.  However, I can not feel anything so I can't scratch!  I'm numb (forever) in one area on my face (chin/cheek area) so how can it itch?  haha  The tingling goes from my ear to my collar bone and feels like little shocks sometimes.  My face FEELS like it's twice as big as it really is.  I have a flap inside my mouth to give me the illusion of gums on the left side and to wrap the titanium plate that is now my jaw.  I feel like a big ol' freak head but looking in the mirror, it's not so bad.  Cool

    I will also get some tingling

    I will also get some tingling inside.They took thigh muscle and used it to rebulid my flap.I can move it around some as my doctor has me do it during my visits.And also he said to try to move it around once in awhile as it would help with swallowing and our speach.He said that when they make up my teeth in Dec any movoement will help greatly .He also said any tingling in the mout and gums and jaw are nerves slowly coming back.

  • KTeacher
    KTeacher Member Posts: 1,103
    #6
    Matching arms

    Sounds like we have matching scars on our arms!  Mine was used to cover the eye area.  I have interesting sensations also.  When I blink, I swear that both eyes blink!  Sometimes feel like I have an eyelash in my eye (I have no eye and no eyelash).  The best is when I go to bed at night and close my eye, I see a Kalidascope pattern, only black and white now but it was in color right after the surgery.  Phantom is interesting.

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    #7
    KTeacher said:

    Matching arms

    Sounds like we have matching scars on our arms!  Mine was used to cover the eye area.  I have interesting sensations also.  When I blink, I swear that both eyes blink!  Sometimes feel like I have an eyelash in my eye (I have no eye and no eyelash).  The best is when I go to bed at night and close my eye, I see a Kalidascope pattern, only black and white now but it was in color right after the surgery.  Phantom is interesting.

    The eye thing is very

    The eye thing is very interesting 

    My Dad and his sister were both blinded by childhood measles. Dad eventually had both eyes removed and wore artificial eyes (in 1982 and 1989). Yvonne has managed to keep her eyes but she has no light perception. 

    Everyone assumes blind people see nothing, or that it's just black. However Dad used to say it was cloudy white. Yvonne says it "looks" like snow on a TV screen. She says it used to make her feel tired, but she is 76 now and has been totally blind for 70 years. She says it doesn't bother her now. 

    My Dad used to say occasionally he would wake up and think, for a split second, all he had to do was open his eyes and he would see. It was the only time, he said, he felt sad. He was so brave.

    I am way off topic now... you can potter away if you like...

    Measles is a terrible illness. I will tell you dad and Yvonne were also profoundly DEAF too because of it. Dad was able to keep his speech, but Yvonne had measles encephalitis which robbed her of her speech. We all used to talk on hands using the deafblind manual alphabet and hand in hand sign. I taught myself Braille so I could transcribe stuff for them that wasn't easy to get in Braille. And birthday cards etc

    Dad, John Brehaut, was the first DEAFblind person in the UK to be trained with a guide dog. They told him it couldn't be done because of his deafness. He fought and fought. And he did it! This was in the Sixties. 

    He he had a guide dog for the rest of his life: Kana, Matthew, Ulla, Ernie, and Lenny who outlived him and spent the rest of his days keeping mum company. Lenny died last Christmas morning, 2 days before my cancer surgery. (What IS it about ruddy Christmas???!)

    We lost Dad December 2007. Sometimes I think if he could just give me a big HUG it would see off all this cancer business.  He was my hero; he was A hero!

    The one thing is that I never had to break his heart by telling him that his only child, his little 'Squeak', has cancer.

    We look to Hollywood for heroes, but they are all around us. They are in our arms. Sometimes they are in the mirror 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    Estelle_H said:

    The eye thing is very

    The eye thing is very interesting 

    My Dad and his sister were both blinded by childhood measles. Dad eventually had both eyes removed and wore artificial eyes (in 1982 and 1989). Yvonne has managed to keep her eyes but she has no light perception. 

    Everyone assumes blind people see nothing, or that it's just black. However Dad used to say it was cloudy white. Yvonne says it "looks" like snow on a TV screen. She says it used to make her feel tired, but she is 76 now and has been totally blind for 70 years. She says it doesn't bother her now. 

    My Dad used to say occasionally he would wake up and think, for a split second, all he had to do was open his eyes and he would see. It was the only time, he said, he felt sad. He was so brave.

    I am way off topic now... you can potter away if you like...

    Measles is a terrible illness. I will tell you dad and Yvonne were also profoundly DEAF too because of it. Dad was able to keep his speech, but Yvonne had measles encephalitis which robbed her of her speech. We all used to talk on hands using the deafblind manual alphabet and hand in hand sign. I taught myself Braille so I could transcribe stuff for them that wasn't easy to get in Braille. And birthday cards etc

    Dad, John Brehaut, was the first DEAFblind person in the UK to be trained with a guide dog. They told him it couldn't be done because of his deafness. He fought and fought. And he did it! This was in the Sixties. 

    He he had a guide dog for the rest of his life: Kana, Matthew, Ulla, Ernie, and Lenny who outlived him and spent the rest of his days keeping mum company. Lenny died last Christmas morning, 2 days before my cancer surgery. (What IS it about ruddy Christmas???!)

    We lost Dad December 2007. Sometimes I think if he could just give me a big HUG it would see off all this cancer business.  He was my hero; he was A hero!

    The one thing is that I never had to break his heart by telling him that his only child, his little 'Squeak', has cancer.

    We look to Hollywood for heroes, but they are all around us. They are in our arms. Sometimes they are in the mirror 

    Estelle, I'm so sorry for all

    Estelle, I'm so sorry for all that sickness and sadness.  Your dad definitely was a hero.  You are so right, the heros are around us, not in hollywood.  all we have to do is open our eyes.  i too, wish he could give you a big, strong, tight hug.  That would probably fix everything.  I'm sorry you lost your hero.  i lost my dad when I was 6, so I know your pain.  I'm so glad you have wonderful memories of your dad, Squeak, and I know you will cherrish them forever!

    sending hugs,

    dj

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