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  • HELP! Daughter losing hearing but doctors cannot find a cause

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    Old 03-11-2016, 05:28 PM   #1
    LAL123
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    HELP! Daughter losing hearing but doctors cannot find a cause

    Hello!
    I am new to this message board, but I signed up because I am hoping someone out there will know what to do! Just under a year ago, my daughter started having ringing in her right ear. Long story short (it's a very long, drawn out story), she saw an ENT in July and they said she had senseroneural hearing loss in that ear. Five months later, her left ear began ringing. Audiogram showed a further loss in right ear and now loss in left ear. Otoacoustic Emissions were normal. MRI and CT scan normal. All vestibular/balance testing normal. By the way, she began having short bouts of dizziness that began to get worse around the time that the second ear began ringing. It begins with her ear feeling very full and like there is pressure, then the ringing becomes louder and the dizziness begins. At the same time as all of this, she began feeling very achey in the joints and muscles. She went from a very active teen to a very sluggish, tired, achey girl. Tons of bloodwork done to rule out different things....ANA was positive - 1:160 in late December and jumped to 1:1250 at the end of January. I have lupus, so my guess was that she is dealing with an autoimmune disorder - possibly autoimmune inner ear disease and/or something related to that. Rheumatologist doesn't think so because she is not having positive results for inflammation in her body (SED rate negative, etc). As far as the ENT, the first one we saw was stumped. The second one said there is no way she has any kind of inner ear problem because her OAE's are completely normal and her audiograms do not make sense (the speech recognition does not match the tone test, he says). He dismissed us with a "good luck - I am sure she isn't making it up, but she may need some anti-anxiety medicine to help and the hearing will come back". I know it is a long shot but does anyone know anything that could help at this point? I really think there is something more to this. I have an appointment for her at the Massachusetts Eye and Ear Hospital in Boston. I have a feeling we are going to be out of luck there too.

     
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    Old 03-15-2016, 06:06 PM   #2
    doggydruel
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    Re: HELP! Daughter losing hearing but doctors cannot find a cause

    I am really sorry to hear about your daughter, and I hope there will be a diagnosis in the near future!

    Are you scheduling an appt. with a neuro-otologist by chance? They have a great deal more training when it comes to the inner ear and the auditory pathways behind the inner ear; a general ENT is seldom of help when there is an inner ear problem, because they lack detailed knowledge and are often not trained sufficiently to recognize bizarre inner ear conditions.

    Moving on to my opinion. I just happen to research a great deal into inner ear diseases owing to also constantly losing hearing along with other neuro symptoms for an unknown reason, but I an no doctor! What you describe as your daughter's symptoms does indeed send off warning bells for an autoimmune inner ear disease, however, which may simply be localized in the inner ear, but may on occasion present systemically (the joint pain stumps me, to be honest). I have not researched too much into Lupus, but I have heard it can affect the ears, along with rheumatoid arthritis and a few others.

    What also stumps me is that that there is an inconsistency between your daughter's audiogram and the OAE's? Did your daughter additionally take an auditory brainstem response test (ABR)? An abnormality there could indicate auditory neuropathy, which means there could be things going on behind the inner ear in structures like the auditory nerve, or on rare occasions in the central nervous system. There are a handful of uncommon conditions like MS or a Chiari malformation that may contribute to these kinds of ear problems. Granted that the CT scan and MRI came back normal (were they examined carefully?), I still think even this kind of hearing loss could have an autoimmune component in some cases.

    Not much I can suggest in the meantime until your daughter gets in for her appt. If there is an autoimmune connection, or any suggestion of such, what I can say is that you may want to get your daughter tested for food and environmental allergies. Either can definitely affect the inner ears (and contribute to autoimmune disorders)! I personally have a mild dairy allergy that I believe, in some circumstances, has set off screeching tinnitus, ear fullness, vertigo, and hearing loss in one of my ears; cutting out dairy got rid of these symptoms for a time, until stress made them flare up again. Though the allergy-inner ear connection is not well documented in the literature, I have heard other stories of people in a similar situation as your daughter who have also had symptoms resolved when they identified and managed their allergies.

    Anyway, I really hope that your daughter gets on the mend soon! It's a really tough thing to go through at a young age. I am in a similar boat; only 21 but I have lost a quarter of my hearing in a single year and it's still going, so I can definitely empathize.

    Last edited by doggydruel; 03-15-2016 at 06:37 PM.

     
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    Old 03-15-2016, 06:34 PM   #3
    Amohaf
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    Re: HELP! Daughter losing hearing but doctors cannot find a cause

    Just something to think about...... I suffer from menieres disease. My attack will start out with fullness in my ear followed by muffled noise,pain in the ear, if I do not get my hands on Dramamine, I will quickly start having vertigo, heavy vomiting, and a very sluggish body. The attack usually lasts 8 or so hours but the effects on my body last 2 to 3 days after. I sleep a lot and physical activity is hard. My attacks are mostly brought on by stress or eating too much salt. On a side note my daughter had severe jaw problems and her ears did give her a hard time until she had surgery to correct the placement of her jaw. She did go on anti anxiety meds to relax so the joint could as well. Something worth looking into! Good luck!

     
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    Old 03-15-2016, 08:35 PM   #4
    LAL123
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    Re: HELP! Daughter losing hearing but doctors cannot find a cause

    Thank you so much to both of you for your comments - both have helped me think a little more (and feel more confident about my feelings that this should not be dismissed). She did see an ENT who specializes in Neurotology. He is the one who said it is psychological. As for the ABR, yes, she did have that and several other balance/vestibular tests - all negative. The Meniere's sounds so close, but she does not get the violent vomiting (or any vomiting) - sometimes nausea though. It is interesting because the Dr. said because she has no damage to her cochlea and no balance issues (according to the tests) she doesn't Meniere's but I will tell you these symptoms are very similar. I put her on a low sodium diet and since then her spells have decreased considerably, but not sure if it is coincidence. When you first started having symptoms of Meniere's, did you have positive test results? I really wonder if this is the start of it and maybe the damage is not done yet. I am also very interested in the fact that your daughter had ear problems when her jaw was not aligned. How interesting. She saw the dentist today for a cleaning and he wonders too if it could be her jaw. I have her seeing a chiropractor Thursday to see if she can find anything. I will also look into the allergy theory. I had already been thinking about that. We did take gluten out of her diet but did not see a change. The dairy is an interesting thought. Also I thought about getting our home tested for mold. Thanks again for your help!

     
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    Old 03-15-2016, 08:36 PM   #5
    LAL123
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    Re: HELP! Daughter losing hearing but doctors cannot find a cause

    Thank you so much! I originally didn't see how to reply personally, so I replied to you and someone else together...you can probably see it. Sorry about the confusion, and again, thank you so much!!

     
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    Old 03-15-2016, 09:18 PM   #6
    Amohaf
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    Re: HELP! Daughter losing hearing but doctors cannot find a cause

    Hello again. My diagnosis for menieres took a looooooonnng time. I went to ent after each attack(several from mild to the er) and also kept a log. That really helped me and the doctor. I can manage myself now with meds( blood pressure meds which make me pee a lot but doc says it gets rid of some of the sodium and the Dramamine I have every where so when I feel an attack coming on I take it immediately!) my daughters dentist noticed her jaw was off around the age of 13 and sent her to oral surgeon. He said that with girls their jaws develop slow up until the age of 18 before the stop growing. He recommended surgery after it stopped. In the years we had to wait, there were multiple er visits, her primary, dentist , oral surgeon etc. she would cry in pain about her ears which made it worse. Finally we came up with a good plan. She went on an anti depressant , given Valium for her most violent attacks(which I controlled for her so I knew how often she was taking it) and physical therapy. This all helped to keep the muscles loose. Since the surgery when she was 18(now 22) she has perfect alignment and has not had any issue with her ears. I feel your pain for you and your daughter. I hope I can at least give you another angle .sometimes doctors can only go by the symptoms they are presented with when they are acute and want to get them under control before they move to the next theory. I do recommend keeping a journal. It can be a helpful tool. Good luck.

     
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    Old 03-15-2016, 09:33 PM   #7
    noevr
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    Re: HELP! Daughter losing hearing but doctors cannot find a cause

    Just wondered at anytime have they tried her on steroids and did it help Cathy

     
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    Old 03-16-2016, 08:05 PM   #8
    LAL123
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    Re: HELP! Daughter losing hearing but doctors cannot find a cause

    Yes, when I took her in to see the doctor when her second ear started to ring, they did an audiogram and it showed that the hearing loss was worse in right ear and had started in the left ear, the nurse practitioner put her on Prednisone for 12 days. She felt an improvement within the first two days - she couldn't tell if it improved the hearing, but it did make the ringing almost disappear. As she tapered down the ringing came back and she began to feel worse. She finished the Prednisone on January 8th. She had another audiogram and exam on January 12th. It showed minor improvement in the left ear (the newly affected ear) in the high tones. The doctor was unimpressed by the results. He said there would have been a greater change.

     
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