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Hearing Loss: Come introduce yourself and connect with others
Hearing Loss | Last Active: 2 days ago | Replies (1517)Comment receiving replies
Hello! I'm not sure if this group is still active or not, but I thought I'd try it! Since 2017 I have slowly been experiencing hearing loss. I finally requested my records from my ENT and it says I have mild progressive bilateral sensorineural hearing loss and tinnitus. In the past 7 years it has declined each visit. This last visit has seemed the biggest jump so far (but not terribly significant right now) my ENT referred me to the hearing aid clinic for an evaluation. High and low frequencies seem to be the worst for me, but I'm not sure what the type of my loss is called. I have diagnosed EDS and suspected Mitochondrial issues (along with a list of other diagnosis) and my doctor assumed one or both of those is the culprit as I am 24 (so not from age).
My main question is, what is other people's experience with progressive sensorineural hearing loss? Does their hearing continue to deteriorate? How quickly?
I know everyone is different, but I'm just trying to get a little insight on others experiences because I feel a little clueless!
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@ameliabrinker
Hello
For reference I have had bilateral sensorineural hearing loss for 40+ years and wear two Phonak Behind the Ear hearing aids.....also have tinnitus.
First, yes, EDS can cause hearing loss . Most people have sensorineural hearing loss with a loss in the high frequency range which is where speech perception comes into play. Some have just conductive low frequency loss and others, like yourself have a mix of the two. I suspect at this point I probably have a mix but my loss is concentrated in the high range.
Tinnitus seems to come more often with hearing loss and that is a separate subject for you at this time.
Hearing loss tends to deteriorate....how quickly that occurs is different for all of us. However,
assuming your loss will continue to deteriorate, it is imperative that you do start to wear hearing aids in order to keep the inner hair cells that you have stimulated and active. The best type of hearing aids are BTEs....behind the ears....for high frequency loss. An Audiologist will advise on the different types.
A crucial point for you is connecting with a certified Audiologist...either an independent provider or one associated with a reputable ENT practice. I prefer an audiologist associated with an ENT practice. When you do chose an ENT practice, visit an Otolaryngologist first who should physically examine your ears for any wax buildup or other impediments and have those ears cleaned on a regular basis. Then see an audiologist within the practice. This is where the tricky part can come in. You need to like and have a good rapport with your Audi. If you don't, then see another one, within or outside of the practice. Find one who you like and feel will do the most for you.
When you get to the point of deciding which type and brand of hearing aid would work best for you there are certain things to be aware of. Not all types and brands will be the best for you and it involves trial and error. You may have to try several types and brands. There is normally a 30 day trial period so, if you are not happy with them you don't have to keep them after 30 days.
Some Audis have a biased preference for one brand... Also be aware, there will likely be many adjustments needed before you decide to commit to buying. Also, they are expensive. When you get to his point, write back and someone here will guide you through what to expect. You should read (there are an awful lot) of comments on this site for people new to hearing loss and as well as excellent advice from long time users.
The takeaway is.....Don't delay about wearing hearing aids....if you know someone who does, ask for their experience and maybe take them with you on your first appointment. You are in the driver's seat when you choose an Audiologist or hearing aid. Read all about hearing loss on this site and on Dr Goggle just to get a feel of what this is all about. This site offers personal experiences which you can't get elsewhere.
Don't be shy about wearing aids....who really cares? Don't delay. Please don't visit a place like Beltone that sells aids...their people are not audiologists. However, many people here on this site have had good experiences with Costco.
Cochlear implants may be in your future but for now, it sounds like some type of aid most likely will benefit you right now.
I hope I didn't throw too much at you but being new to hearing loss is not easy to navigate at first. I still meet people in my age group (I am 83) who are wearing aids for the first time an haven't a clue on how to take care of them or what the parts of the aids are. Also, I have friends who need them...have needed them for years...and still say they are fine. Its' usually a subtle loss
as opposed to those who have a sudden loss.
FL Mary.....hang in there on your journey