Forearm flap question

ozymandible
ozymandible Member Posts: 324 Member
in Head and Neck Cancer #1

I went on tube feed for a bit because I was having extreme pain in my jaw joint when chewing.  I believe it is related to the occipital neuralgia which may or may not be cancer related.

I am trying to eat something every little bit so I can get off the tube.  I still drink coffee, water, oatmeal and soup but slowly trying to add solid food back in.

Anyway, I'm having a lot of pain where the flap is adjoining my mouth mostly around my tongue which is too bad to chew. I had to bust out the lidocaine again.  I'm having a lot of pain in my jaw and chin.  There is a big swollen spot on my jaw.

When I had FU with chemo doc, she said my flap was swollen due to my lymphedema.  I am doing exercises and massage.  I called the lymphedema specialist the radiation people referred me to and they couldn't get me in until December.

I wandered off into the weeds like I always do.  Pardon me.

I am twelve weeks out from radiation.  My flap was put in early March of this year.

Is this much pain in my flap normal?  I did read that people were having tingling for years.  I had tingling but didn't worry until I had this awful pain.  It almost feels like it did when I had cancer in there. 

I am going in for my PET scan soon.  The chemo doc thinks I'm in remission.  I was just wondering if this much pain in flap areas where it meets original flesh was normal.

Thank you for reading.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited October 2021 #2
    ozy I Think

    Your pain should have abated by now.
    You are roughly 7-8 months since your surgery.
    I checked the net a little and found this from Stanford Health Care--

    Tongue Surgery Post-Operative Instructions

    Taste abnormalities, swallowing difficulty, and numbness in the tongue are not uncommon after tongue surgery, usually temporary, and rarely permanent.

    Pain

    While there is a significant amount of individual variability on pain perception, tongue base surgeries have as the main issue a significant amount of post-operative pain. You will be prescribed narcotic pain medication after surgery, try to avoid allowing the pain to become intolerable before you use the medication. Pain will be present for at least 7-14 days following surgery, but it should improve around two weeks following surgery. If you are running out of medication, and you still have significant pain, please contact us before it finishes.

    https://stanfordhealthcare.org/medical-treatments/t/tongue-surgery/what-to-expect.html

    You can see they say you will have pain but it should start to improve after 2 weeks.
    I really can't find a lot beyond that as far as the length of time pain lasts.
    But that makes sense roughly 2 weeks is the worst and it should be improving from that point and you can even stretch it to 3 or 4 weeks but you are way beyond that time period.
    But if you consider any injury or operation to a part of your body it goes through a period of pain and then normal healing and you can tell if it healed well and the pain slowly diminishes over time.
    Think of any other part of your body like getting a shoulder repaired, if you still had pain 7-8 months out you would be going back to the doc because you should not have this severe pain this far out.
    I had tongue cancer and a small part removed not near the operation you endured but I think the pain should be gone by now.
    Better safe than sorry get in to see your doctor and have this checked right away don't fool around with this anymore.
    If they try to put you off or can't get you in for an extended period don't tolerate it tell them you need an appointment as soon as possible.
    I don't think you will have any problems because anytime I had cancer treatment and recovery { 3 Times|} My doctors told me during or after treatment if I feel something is not right or have any concerns call and ask questions or set up an appointment and come in.
    If you don't call, they don't know.

     

     

     

  • ozymandible
    ozymandible Member Posts: 324 Member
    #3
    Thank you.  The pain went

    Thank you.  The pain went away for a long time after surgery.  I don't know what made it come back.  It was tingly and some people said that was normal but in the last month the tingly sensation has turned into pain.  Maybe it's just more fun with lymphedema.  My scan is soon and  I have FU with my chemo doc, radiation doc and the doctor who did my surgery.  At this point they probably won't be able to get me in any sooner but I will try after I get a report and a disc from the PET scan.

     

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #4
    Infection?

    I would suspect it's an infection.  Lots of ways for that to occur with this.  It is red, and tender to the touch?

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited October 2021 #5
    If it were nearer my original

    If it were nearer my original surgery date of March 9 then maybe.

    I stumbled on something the other day that said I cohld have post surgical pain for up to a year.  Hasn't been a year yet.

    You know how there are many areas that kind of go numb?

    Maybe the numbness is wearing off.

     

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