Hearing loss and frustration

HLaValle
HLaValle Member Posts: 2
in Head and Neck Cancer #1
I'm nearly 8 years out of radiation to my left neck and ear. I was treated for a slow growing cancer that wasn't so bad, except for the fact that it was infiltrating my facial nerves and causing a lot of pain and would've eventually caused paralysis. I have been noticing tinnitus in the left ear for the past couple of months, and am noticing a large amount of hearing loss. I assume this is from radiation injury. My recent head and neck MRI's looked clean and the ENT told me my ears looked fine. After my mother and husband got all worked up over those last tests, I can't handle the stress of talking to them about this problem. My ENT refused to talk to me directly on the phone, but his nurse pointed me towards the audiologist after telling me what a common problem tinnitus is. I'm not going to go to the audiologist. It is too difficult with my three kids ages 5 and under, plus the expense, and the $... That's a lot of stress to go through for someone to tell me what is already pretty apparent. I am so tired of all of the extra tests one must have every time things are a bit funky, tests that people who have not had cancer wouldn't have to deal with, only to have everything come up "normal". I just wish I could forget I was a cancer patient for a bit, but something is always coming back to haunt me. I'm only 30, I'm not ready to lose my hearing. I can't hear the toddler crying from his room when he wakes up, anymore, but my ex-drummer husband with bad hearing can. Has anyone else come across this problem? Did you go to the doctor, and was that useful?

Comments

  • katenorwood
    katenorwood Member Posts: 1,912
    #2
    Hello !
    Hello,
    Was wondering what type of cancer you initially were diagnoised with ? I have ACC which is also a slow growing type. But mine can spread along the nerves and cause alot of havoc. If you were diagnoised with this type go to ACCRF or ACCOI on the net, tons of good info there for you. It sounds like you're exhausted and frustrated...hope things get better soon ! Warmest regards, Katie
  • HLaValle
    HLaValle Member Posts: 2
    #3
    katenorwood said:

    Hello !
    Hello,
    Was wondering what type of cancer you initially were diagnoised with ? I have ACC which is also a slow growing type. But mine can spread along the nerves and cause alot of havoc. If you were diagnoised with this type go to ACCRF or ACCOI on the net, tons of good info there for you. It sounds like you're exhausted and frustrated...hope things get better soon ! Warmest regards, Katie

    Thanks, not ACC
    I had Acinic cell carcinoma of the parotid. I haven't found a whole lot of info on it, especially for my age and gender, but there is less concern of spreading since it has been so long since it was removed. My scans were all clean last month, although the auditory nerve wasn't scanned. I'm sure I could go in and say the "c" word and they would figure out a ton more scans they could give me, but I am not up for that. The doc doesn't seem ly concerned and I finally got a hold of my uncle, who is a doctor, and he seems to suggest it is just one of those things people have to deal with. Oh well..... It could be worse, right? I just hate having to be reminded that I'm still a cancer parient.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #4
    HLaValle said:

    Thanks, not ACC
    I had Acinic cell carcinoma of the parotid. I haven't found a whole lot of info on it, especially for my age and gender, but there is less concern of spreading since it has been so long since it was removed. My scans were all clean last month, although the auditory nerve wasn't scanned. I'm sure I could go in and say the "c" word and they would figure out a ton more scans they could give me, but I am not up for that. The doc doesn't seem ly concerned and I finally got a hold of my uncle, who is a doctor, and he seems to suggest it is just one of those things people have to deal with. Oh well..... It could be worse, right? I just hate having to be reminded that I'm still a cancer parient.

    Wish I could help...
    ..but I had SCC base of tongue and I'm only 6 months out from tx. I know someone will come along soon and give you some feedback.

    Did whisper a prayer you get some relief.

    If it helps, I do have ringing in my ears ...had before tx but it is worse now ...but I play some soft music at night to drown it out, but I don't have hearing issues.

    Best,

    Tim

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