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My daughter has TN

Posted , 3 users are following.

monica5119
monica5119

My daughter was diagnosed w/ TN shortly after a nasty ear/bone infection last January. She has lived the life of a shut-in since.

Has anyone had experience with using noise canceling ear buds or ear phones? We really want to help her get out of the house more. Headsets are too painful. Thank you.

0 likes, 5 replies

5 Replies

  • Nascar1
    Nascar1 monica5119

    Posted

    I know how it feels too have TN. Had it for 18yrs and didn't know what it was at first. Question: what test/s did she get done to determine she has TN?
  • colin69485
    colin69485 monica5119

    Posted

    Hi monica5119

    I have no experience of the particular circumstances that are affecting your daughter but only of 'straight forward' TN. Could you share a little more about her treatment, what professional support you are already getting. Best wishes and thank you for sharing your concerns. Colin

  • monica5119
    monica5119

    Posted

    She had acute mastoiditis which put her in the hospital. The hospital dropped the ball by allowing her to suffer horridly for over 7 hours. They would not wait for her

    48 hour culture to grow and released her with the wrong antibiotic. Ever since that experience she has had TN. Long MRI/MRA studies, CT scans, and all the like have been done. She has been to a neurologist at Children's Miami Hospital (one of the top 10 in the US) to no avail. He told her she would eventually grow out of it. She battles it primarly via Baclofen and migraine meds. It has taken away her entire outside world. She misses Church and has been this way for almost a year.

  • monica5119
    monica5119

    Posted

    Z has tried all of the standard medications. She is simply too young or intolerant. The hours of screaming have lessened but that might be because I have taught her to listen to her body. Even laughing too much will bring her to tears.
  • Nascar1
    Nascar1 monica5119

    Posted

    She's been through a lot in a short amount of time. Why don't you look for a doctor who does Neuro Prolotherapy (Dextrose injection), in my experience in dealing with TN. By far the best thing I've ever done and it almost eliminated it completely, dr said a few injections could do the job. So far I feel incredible, but because I had it for so long its going to take a little longer of course. yeah the thing to is that my insurance doesn't cover the procedure so I have to pay it out of pocket which is not too expensive. 
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