@jfspainter Oh wow, I’m sorry that it took so long for you to find out about the tumor! Thank you for sharing your story. I have an MRI scheduled in the near future.
@butchwhitehouse Thank you for all of the good information! I’m sorry to hear about you losing hearing in what was your good ear! I have been trying to eat a low sodium diet and have been avoiding alcohol and sugar since this started. I never thought about glutton, though. I’ll check out the book that you mentioned. Thanks!
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@jonat That’s wonderful that you were able to get most of your hearing back, and that hearing aids have helped you. I’ve recently spoken to another audiologist who was much more helpful than the first one I saw, and I plan on visiting her in about a month and a half after I have my next hearing test to determine where my hearing has settled. I hope to at least get some relief from aids, too!
I will note that a specialist I saw in Boston commended me for seeking (and getting) appropriate medical attention so promptly. He told me that he saw many patients who were told by their doctors to take some decongestants and come back in a month, by which time the damage was irreversible. I attribute the recovery I made to my doctor “choosing wisely” in the treatment he advised.
I went 6+ years without hearing aids and I could function well, though I had to give up playing trombone in a town band because I found it painful. I also had issues understanding speech in noisy environments. The aids helped with the latter a lot.
You are very fortunate to have seen a doctor who treated you so quickly! I didn’t even realize that my tinnitus and muffled hearing was an emergency for a couple days. When I googled ringing in ears and muffled hearing the top result said to see a doctor if it doesn’t resolve in two weeks. Thanks a lot, google! So I tried to tough it out, but I ended up making an appointment with a doctor a few days after it started because the tinnitus was really bothering me. I have Kaiser, sigh, and I had to specifically ask for a hearing test which they couldn’t schedule for another two days. It wasn’t until the audiologist saw my hearing test results that I was escalated to an ENT who gave me the high dose of prednisone and a steroid shot that same day. So, I didn’t get treatment until about 8 days after the onset. If I knew then what I know now I would have gone to the ER the day it started, but who knows if that would have changed anything.
I’m sorry that you had to give up playing in your band. I now have sound sensitivity, too, and am a big music fan myself. I hope that it will get better with time, but I’ve resigned myself to the fact that my concert days are over.
That’s great that the aids have helped with understanding speech in noisy environments. I struggle with that, too.
Thank you for sharing your story!
I suspect that their are as many causes as people dealing with this. My ongoing frustration is that is appears a “definitive” diagnosis may be beyond what is possible currently, medically. The more you dive in to SSNHL the more conflicting (at least to me) the research becomes. I have seen several ENT’s incluing one( Dr. Roach) who was at the forefront of re-searching Prednisone as a treatment. If you look hard enough (sorry for not having a link) you can find where he postulated that ENT’s were doing steroid injections not because they were any more effective than oral steroids but because the procedure results in much higher billing for the practice. What I took away from the ENT’s I saw is that our cochlear nerves can be sensitive to many forces and the prednisone and other treatments (redcucing salt, sugar, gluten) can lessen any inflammation that may be upsetting your hearing. I believe the conventional wisdom is that “nerve” loss is permanent but I know from personal experience that my loss can and does fluctuate. I know I’m super fortunate to have my hearing return and that is not going to be the case for everyone. This leaves me struggling with finding out the root cause of the loss and constantly looking for “cause and effect” so that to the greatest extent possible I can avoid foods or activities that negatively effect my hearing. It took me awhile to connect all the dots. My son was diagnosed as a Celiac (affected by gluten) many years ago and at the time you were either Celiac or okay to eat gluten. After hearing a number of ENT’s talk to me about “inflamation” I learned more about non-Celiac gluten sensitivity which lead me to Dr. Fasano’s book. He practices in Boston so I was able to meet him. The point I’m making is that you will need to be your own best advocate for your hearing. When it comes to finding an audiologist I am a huge fan of Dr. Cliff Olson. His sharing of information via his you tube channel and enthusiasm for his profession convinced me to travel to Phoenix to meet him. Good luck.
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