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IAmStrong
IAmStrong Member Posts: 58
in Head and Neck Cancer #1
Hello everyone. I am fairly new here. Have been reading a lot on the site. Truthfully, I did come here with my second diagnosis but was too freaked out at the time, I did better with the less I knew. There was actually question whether I was treatable at one point. So I am doing things differently than some I see here. I am coming Knowing I have beat this, even with my 65% survival rate (so they say:)looking for Experience, Strength and Hope in dealing with the aftereffects of treatments and your suggestions in dealing with them.

I have 31% kidney function due to damage of cisplatin. Hearing impairment and NOISE:)

My questions. Has the Noise in your ears decreased over time at all? Also, my ability to take any type of analgesic is very limited due to kidney function. I at times still have quite a bit of nerve pain in my mouth and throat and find I need a bit of analgesic to facilitate eating, swallowing etc. Does this happen with anyone else? I am 20 months out.

Thanks!

Comments

  • stevenl
    stevenl Member Posts: 587
    #2
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    Analgesics
    In my surgery, tonsillectomy and neck dissection, the y had to sacrifice a
    nerve that went to my right shoulder. I have major atrophy(muscle loss), in
    that shoulder and a lot of pain at times. My primary doc prescribed a drug
    called Gabapentin to help dull the nerve impulses and it has really helped me
    to kick a lot of the pain meds I was taking. Don't know if it will help in
    your case but you might inquire about it. And I am cured of cancer also
    in my humble opinion.
    All the best to you,
    Steve
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
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    Your pain can be managed
    www.Pain-Topics.org

    start here, type renal failure into search box, and find first chapter, which is exhaustive on the topic of opioid administration with decreased renal function. Just because you have this problem does not mean you have to suffer through this. It may take some special expertise to get around this for you, but that expertise does exist.

    Best regards
  • Hal61
    Hal61 Member Posts: 655
    #4
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    Lend me your ears
    Hi I am, I'm about twenty months out of treatment tnat included Cisplatin, and have hearing loss and tinnitus. I was told--by my ENT--that the tinnitus might improve up to a year. I don't know where he got the figure, but if you ask for a time, sometimes the docs will give you their best guess.

    The good news is I've had considerable improvement past that time. Mine is often a low hiss now, as opposed to the siren it used to be. Tinnitus is as old as cancer, and they still haven't nailed down a cure for it either. Hearing loss from Cisplatin--which I also have--is attributed to the damage done to what are called "ear hairs" in the inner ear. Damage or death of the ear hairs is also the most offered cause of hearing loss in the elderly.

    I've tried accupuncture, Arches Tinnitus Formula, Quietus, and other things, but nothing that will make it go away. But again, mine has improved considerably after the one-year period given by the doc.

    You will hear things about salts and potassium, and with you concurrent kidney problems, their may be reason to talk to your doc about that relation. But that has to do with hearing loss. Tinnitus is its own animal. Whether the brain is serenading us because it is not getting enough input, or because it can't filter what's coming in is still being debated.

    Take your folic acid, and your vitamin D (both needed for good hearing), and give it a bit more time. Hope it quietens down for you. People don't get how messed up it is when it's really humming.

    best, Hal
  • hawk711
    hawk711 Member Posts: 566
    #5
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    Hi Iam
    Just to let you know, I am 23 months out from BOT with mets. Had no surgery, but 7 rounds of cisplatin and 36 rads. My ears really bothered me for quite a while, but now it is only a low buzz that I hear when it is quiet. I don't notice it when the noise around me is a little loud. So for me, yes the humm got a little quieter.
    I wish I could offer other advice, but I can't. Just keep up the positive attitude and maybe you should visit the kidney cancer site to see what those folks have to offer you.
    all the best.,
    steve
  • Pam M
    Pam M Member Posts: 2,196
    #6
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    Mine was Mild
    Hi IAmStrong. Glad you are posting now. During treatment, I'd describe my tinnitus as mild. At 23 months out, it seems to be gone; I only have a "spell" on occasion, it isn't bad, and doesn't last long. I would say the bouts I have now are like a "normal" person, or nearly so.

    I have also been very lucky in that my kidney function is good. I asked my doc before rads if we should get my hearing tested, he said "no", so I have nothing to compare my hearing to. I do know, though, that I got my hearing checked (OK, free testing at a Sam's Club hearing aid department), and passed with flying colors.

    Wow - just realized that my wanting to say I have no useful info to offer looks an awful lot like bragging to me - not what I meant. I do know that we have many members here who do have ongoing issues like the ones you mentioned - I'm sure they'll see this and post soon.

    Steve - good thinking on "visit the kidney cancer site for info" - of course, they'd have suggestions on dealing with reduced function.

    Do well, IAmStrong.

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