Hi All:
I was hoping for some guidance on how I navigate the next few weeks/months. I did not know if I should post in the general chat forum or here. I tried navigating some other posts and my head started to spin with all the information; so, I thought I would start a new post. Sorry if this creating too much of a “been there done that” for you all.
To start, I have had unipolar hearing for about 5 years. (Removal of a vestibular schwanoma). On Monday of this week, I got Sudden Sensorineural Hearing Loss (SSHL) in the “good” ear. At the ER, they prescribed steroids and I had a follow up with an ERT on Wednesday. Steroids seemed to help at first. The ENT wanted $7,000 grand for a steroid injection, but because of my improvement, I held off. Hearing was much worse by Thursday. I found an ENT that works on this condition in my insurance plan. At that time, I could recognize some speech. I received steroid injection and was put on stronger oral steroids. By Friday, verbal communication was impossible. ENT sent me for MRI which appears negative. I have had 3 audiology tests during the week with each coming back worse. I can hear clanking plates a little, but even someone speaking right into my ear is hopeless. An email this morning from the ENT said prospects were about 10% of resuming hearing, but he said I was an excellent candidate for a Cochlear Implant. I am now on a cocktail of meds. He doesn’t think it is Meniere’s but I am on a diuretic. He even spoke to a colleague that said to go on N-Acetyl-Cysteine (Vitamin B type supplement) because of an autoimmune study. Family is now communicating with me by notes and getting frustrated.
Communication is now very difficult; so, I was hoping some more experienced subscribers than I am could help me to ask the right questions in the near future when I meet with health care providers.
1. It sounds like there have been some instances of unscrupulous surgeons. What should I look out for?
2. I have read that the CI “processes” sound. What does that mean? Will all sound be like R2D2? Or will my daughter sound different from my son? Will I learn different people’s voices?
3. Will it really take one year for the therapy? Or is that just tweaking the device?
4. Will I be able to work?
5. Will I be able to enjoy a movie?
Thank you for your help.
