Hello out there

[beachcomber13]

Is this community dead? If you read this forum regularly, please introduce yourself. I'll go first.

I'm beachcomber! I am hearing, but I work with children and adults who are deaf and hard of hearing. My best friend is deaf and hears with cochlear implants but mostly signs. I am fluent in ASL. I am not a cert-AVT, but I use AVT methodology with some people, and I have a decent understanding of mapping strategies, the use of FM systems, etc. I enjoy talking about things related to hearing loss, so I joined this community. But I feel like I am the only one here! It seems like people stop by to ask a question and then are gone. So please, if you are here, say hi! :)

[beachcomber13]

Thanks, I guess I do need to temper my expectations.

My hope is that I will have a meaningful discussion about DMDs and leave with a prescription/plan to get on one. I also hope to get appropriate referrals for related professionals (PT, etc.).

My hope is that he will take me seriously. I think I have an advantage in that I have had increased lesion load in my brain in just three months (MRIs in June and September). And the ophthalmologist saw optic neuritis when she looked into my eye... and the VEP was delayed in that eye.

But you are right: doctors are unpredictable. Ugh. I am seriously considering going to medical school!

[Nancy T]

Hi BC. I think mainly doctors are just too rushed, so they (most of them) simply assume the most common cause for someone's symptom(s), or the one that's easiest for them to deal with, least expensive etc., and filter out any facts that don't fit with their easy assumption. I suppose the docs get burned out, cynical, etc.

I've found that the best doctors are really the youngest ones. They are still actually interested in patient histories, they listen better, they don't make fast and often unwarranted assumptions. The two GPs I saw while suffering (unbeknownst to me) a severe-to-profound sensorineural hearing loss (I thought my ear must just be "plugged" somehow--had never heard of SHL) did not so much as do the tuning-fork test but just ASSUMED it was a conductive, temporary loss and simply prescribed their usual--Antivert, Afrin nasal spray... That's fine for the (say) 99 percent of their patients who come in complaining of "plugged" ears and they really only do have wax or a Eustachian tube thing--but what about the other 1 percent of us? Doctors need to at least TRY to take 100 percent of their patients seriously. A way has to be found for doctors to spend enough time with their patients to stop rushing through appointments and making quick, wrong assumptions that can have serious consequences for the patient.

If your dad has enough hearing in his good ear, he could certainly be a Baha candidate. But you know, not everyone wants surgery. I know two other SSD women (my co-worker and a neighbor) who are both great Baha candidates but recoil at the thought of surgery. They simply don't want surgery and a bolt stuck in their head! It's true that the thought is a little weird, and not everyone can deal with it, but I'm very glad I did it myself. The Baha's not perfect--there are feedback issues, background noise, you have to protect it from rain, it can get knocked off, etc., but I think the newer models have less feedback trouble, and for me the minor inconveniences are worth the big help with hearing!

Good luck tomorrow! I hope you get a good, serious listener. But I should say (having read this forum a long time and seen MANY terrible disappointments), please be prepared for anything. Doctors can drop the most astounding surprises on you, say things that make your jaw drop to the floor, take no interest in helping you figure things out or come to a proper understanding of your diagnostic situation, and leave you hanging, unsettled, with no sense of what to do, where to turn for help or resolution. So many times I've been told "it's not this, it's not that, I don't know what's wrong," but then I'm left with not only no explanation, but also no follow-up, no interest, no suggestions, no help in understanding, simply an assumption that I should now go home happy and not give another thought to it--often with the implicit or hinted-at conclusion that I'm making a big deal out of nothing. (Aw, it's only my brainstem and spinal cord...) I really hope that doesn't happen to you. I'll keep my fingers crossed! :)

Nancy

[beachcomber13]

Tomorrow--my big appointment is tomorrow. It can't come soon enough!

You know, I have been trying to get my dad to consider a baha, because he has been deaf in one ear since he was 10 years old (mumps). And he has a big of hearing loss in the other ear. He is lost in noisy environments. But he is stubborn and wants to pretend he hears fine. Whatever.

Sadly, it does not surprise me a bit that GPs did not take you seriously. They do not take us seriously when we lose feeling in a limb or have trouble walking. For your ears, it must be wax. For your nerves, it must be anxiety. From what I have seen, most doctors are seriously pathetic and have hearts made of stone.

[Nancy T]

Hi BC. I was so surprised when I found out that sudden hearing loss should be considered a medical emergency but that virtually no doctors except ENTs know this. I had two GPs blow me off with "wax" or "Eustachian tube dysfunction" before I was finally diagnosed a month after it occurred. Too late.

I LOVE the Baha! It's really helpful at work and in some social situations so that I don't have to keep constantly turning my head and having people repeat, or miss things that I don't even know people said to me on my left side. Today is the third anniversary of when I got "plugged in"!

While taking ASL, I did attend a couple of get-togethers that ASL users (mostly Deaf people, I think) had regularly at a Starbucks in town. Indeed, there were several people who took the time to sit and interact with us beginners, teach us some new things, etc. It was a bit scary but very worthwhile! I hope to someday have time to go back to learning ASL.

It's really nice to have professional types like you answer what questions you can on the ENT and hearing forums. Definitely hang around. I look forward to hearing how things went for you today (?).

Best,
Nancy

[beachcomber13]

Hi Nancy! I guess it's just you and me. Sad!

Good for you, encouraging people to see an audiologist IMMEDIATELY if they have sudden hearing loss. Seems like a no brainer, but...

How do you like the Baha?

You would be surprised how accepting the Deaf community can be of those who lose their hearing as adults. They'll even accept hearing people if they sign and are open minded.

I'll have to troll the ENT forum...

[Nancy T]

Hi there, BC! :) I take a look here occasionally, but there aren't many questions, and even fewer that I can help with. (Usually I post when someone mentions a sudden hearing loss--I practically hyperventilate about the need to see an audiologist and ENT immediately, which might have helped me, but I was clueless about SHL and so was my GP). It's not really a community like some others on Medhelp are. I participate at times in a couple of Baha communities elsewhere, since I have a Baha (due to single-sided deafness).

I took a few ASL classes many years ago; I wasn't really worried about losing the rest of my hearing (and ASL probably wouldn't have been much, if any, help to me if I had, since I was never part of that culture), but I am interested in linguistics and languages and was fascinated to learn how ASL works. Now I've forgotten almost all of what (little) I learned, unfortunately! But it was a great experience.

And now, thanks to you and Google, I know what AVT stands for! It sounds like an interesting field.

The ENT forum gets a lot more questions. But again, it's not much like a community where many people post regularly. It's pretty much just question-and-answer (although some threads there, such as the orange tongue and itchy, wet ears, get perennially bumped up!).

Nancy T.