New to Tinnitus — Still in Shock

Discussion in 'Introduce Yourself' started by GregCA, Apr 15, 2016.

tinnitus forum
    1. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Hello fellow sufferers,

      At the end of January, after taking a shower, I noticed that my right ear was plugged or full. I didn’t think much of this and shook my head to remove the water from the ear, but that did not work.

      Then I used some ear drops, because I thought it was ear wax that I needed to remove. After a treatment of a few days without any results, I made an appointment with my Primary Care Physician.

      The Primary Care Physician sent me to an Ear Neck Throat doctor, and they performed a hearing test. The audiogram showed a significant loss in the low frequencies and I was diagnosed with Sudden Sensorineural Hearing Loss, which is a problem in the inner ear. I did not have any balance problems at all, and had no pain. No Air-Bone-Gap.

      The doctors started a treatment with Prednisone (corticosteroids), as well as asking me to follow a diet without salt, caffeine, chocolate, alcohol.

      After the 2 week treatment, a new hearing test was performed, and there was no improvement, then the doctor ordered an MRI to see if I had a tumor. The MRI came clean thankfully, so the doctor said that by process of elimination she thought I had “endolymphatic hydrops”, and told me to “wait and see with the new diet” to find out if it was getting better or worse with time.

      Because treatments of the inner ear lose effectiveness if they are done late, I did not want to “wait and see” and asked for a second opinion. I saw another doctor, and she didn’t have any other idea, so she gave me a diuretic (Dyazide) to help with “endolymphatic hydrops”.

      As I started taking the diuretic, a new symptom appeared and I now has strong ringing in my ear that never goes away. Welcome T!

      It could have been a coincidence, but I stopped taking the diuretic, and started panicking as it felt like it was there to stay.

      I asked to see my doctor again urgently, and she prescribed Valium to take when I feel anxiety or to sleep, and told me to learn to cope with it.

      Not happy with a set of doctors who were just treating symptoms rather than try to root cause, I went to a very well known ENT doctor/surgeon (people fly in from all over the world to do surgery with him). It wasn't covered by my medical insurance, but health has no price, so I went out of pocket on this.

      He gave me an intratympanic shot of steroids, and asked me to get a CT Scan.

      One week later, we checked my hearing. And now, surprise surprise, I have a massive Air Bone Gap, which was not present at all on the audiograms 4 weeks earlier. 40 dBs ABG in 4 weeks... kind of unheard of. None of the doctors can explain it.

      Looking at the CT scan, this famous surgeon thinks he can see potential hints of otosclerosis (that nobody else could - but again, he's a well known expert in the field), and says I can undergo a stapedotomy to correct the ABG, but that it may not be worth it to me if my main bother is Tinnitus, as the chances of success are much lower (~50% he says).

      From that point on, I did 3 more audiograms and all of them confirmed that I have a massive ABG in the low frequencies. And the 3 audiograms I did a month prior showed none of that.

      I still have a hole in my eardrum from the steroid shot - I wonder if that can account for such a large ABG. It's not healing well (still there after 2 weeks).

      So here I am, still in the "I'm freaking out" period, and wondering if I should undergo stapedotomy. There are risks associated with it that scare me a lot. I have no balance issues, and would hate to make my situation worse with surgery. The inner ear is very delicate.

      Now to add more "fun" to the mix, I am now feeling hyperacusis in both ears (even in my left - the "perfect" one) which makes it difficult to try to mask T as I can't really listen to anything except very low volume. Typing this post on my keyboard hurts my ears. My doctor says H is normal with otosclerosis and that surgery should get rid of it.

      Just like everyone else on this forum, my life has been turned upside down since this ear issues started. I feel the same hopelessness, helplessness and panic as everyone else. I am in my early 40s, married, and with the perfect 2 year old daughter.

      For some reason I have the impression that the T is getting worse by the day. Maybe it's because of otosclerosis, which never stops making progress. Maybe it's a hint that I should pull the trigger on the surgery and take my chances.

      My T is a mid-pitch tone with a lower pitch tone modulated by heart pulsations. The mid-pitch tone is so loud that it kind of masks the lower pitch tone. None of the hearing aids I've tried can mask my T (even when the technician cranked it up to the max).

      And then something really weird happened today. I was at a mall where my daughter goes to Gymboree, and waiting for her in the main aisle where they have seats/sofas. Out of nowhere comes this little asian lady who leans on me and says "do you believe in Jesus Christ?". I ask her "Why are you asking me this now?". Then she leaves, but before doing so, she tells me "Believe and you will be saved!". That freaked me out a little!

      Thanks for reading thus far. Good luck to all.

      -- Greg
       
      • Hug Hug x 2
    2. billie48
      Sunshine

      billie48 Member Benefactor Hall of Fame Ambassador Team Research

      Location:
      Vancouver, Canada
      Tinnitus Since:
      03/2009
      Welcome to the support forum, Greg. I am no doctor so I am not qualified to address the medical side of your T. But there is always the mental component of T suffering, which is sometimes more hurtful than T. How we react to T can decide how intrusive T can be.

      Being more positive and accepting is the best approach when T is new even though it may be easier said than done. Your ears/hearing may take some time to settle down, and your body needs time to adjust to the 'new normal' to learn to flow with it. Resisting something we can't control much will generate fierce emotional storm to the body, and the emotional pains are manifested in anxiety, panic, depression, sleeplessness & lack of energy or enthusiasm.

      If possible, newer sufferers should try to adjust, adapt and to accept the new normal, whatever the case is, especially if it is beyond your control. In the following post, you can see how a doctor with T will learn to accept the new normal and adjust. Hopefully, when we learn to accept the new normal, the stress and anxiety level will go down, and then T will be easier to handle. H is troublesome, but like me many members have found that H tends to fade over time. So Don't worry too much. Try some masking if T bothers you, even if just partial masking at low volume due to H, like what happened to me a few years back. My ultra high pitch T & H turned me into a mess back then. But today I live a normal and absolutely enjoyable life. Don't give up hope. Take good care & God bless.

      A doctor's post on accepting the new normal of T:
      http://www.tinnitustalk.com/threads/curing-tinnitus.4136/page-5#post-40854
       
    3. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi Greg,
      My son had his ear bones taken out at the age of 7 .
      He can still hear about 40db but he could not have new bones put in due to where is facial nerve was but his hearing did improve from the loss he had before the opp after bones and a mass was removed...lots of love glynis
       
    4. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Thanks for the welcome, guys.
      I have surgery scheduled for this coming Wednesday. Let's hope it can be a success!
       
    5. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Good luck with your operation.
      You will have packing in your ear for a few weeks.
      May be out the same day or one overnight stay.
      Stitches just round the top of your ear as they carnt stitch down the inside of your ear so pack it with antibiotic jerm stuff for a few weeks.
      Keep us posted how you go on...lots of love glynis
       
    6. Dominic1955
      Depressed

      Dominic1955 Member Benefactor

      Location:
      Waverly, Pennsylvania
      Tinnitus Since:
      4/2/2016
      Cause of Tinnitus:
      Idiopathic hearing loss
      @GregCA I was wondering if you have also experienced dizziness and fluctuations in your hearing? I Developed loss in all frequencies but especially in my low tones. It's now 7 months and I have noted a few days of improvement in my low tones and relief of my loud T, this is short lived I then revert to my diabolical symptoms. I was told that it could be cochlear hydrops. Have you noted any improvement?
      Dom
       
    7. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I have not experienced any dizziness, no (except right after my stapedotomy - which is expected - and just minor).
      I haven't seen any improvement in my T. In fact it's quite consistent. Consistently bad unfortunately, with no periods of relief.

      Your symptoms indeed seem to point to hydrops. There are ways to diagnose with an ECOG.
       
    8. Dominic1955
      Depressed

      Dominic1955 Member Benefactor

      Location:
      Waverly, Pennsylvania
      Tinnitus Since:
      4/2/2016
      Cause of Tinnitus:
      Idiopathic hearing loss
      Did your hearing improve?
       
    9. GregCA
      Crappy

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      No. It's fairly stable.
       
    10. handmaiden

      handmaiden Member

      Tinnitus Since:
      1998
      Cause of Tinnitus:
      Standing next to a speaker at a concert
      Greg
      I read your post! Im so sorry this has happened to you, when you spoke of your daughter it bought home how this gets in the way of the joy of normal life, i have two boys and a lot of the time I am with them in body only as my mind is consumed with tinnitus. Im here for support just like you, but I wanted to tell you that the Asian lady was a lifeline, that was a supernatural message of hope for you, I imagine she was prompted by the Spirit to speak with you because of your distress, its very common for Christians to get a strong prompting to approach a certain person and tell them about Jesus.
      Without Jesus, who is my rock, my refuge, my saviour I could not get by every day, i've had this for so long...so say a prayer to Him to Greg - give it all to Him...if you don't know Him and have never known him or made the prayer for Him to be with you.... do it now. He is the light of the world and He stands at the door and knocks, open the door of your heart and let Him in. Jesus said,
      "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest."
      Tinnitus is a heavy burden Greg, I don't have to tell you that, but in spite of it there can be rest in Jesus.
      Ill pray for you too
       

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