Good to hear of your progress! I'm almost 6 months out now, and hardly ever notice any imbalance. Haven't had dizziness for months. You'll get there soon; just keep as active as you can and do your best with the exercises. Meanwhile, enjoy eating a normal diet, ridding yourself of whatever rescue meds and diuretics you've been on, and enjoy your life without fear! What are you doing about your hearing? I just read this article from Cleveland Clinic about single-sided deafness (SSD) treatments and found it interesting: Single-Sided Deafness – What Are Your Options?. Cochlear implants aren't FDA approved for SSD in the US, but there are some clinical trials going on. I sure wish we could get insurance coverage for CI for Meniere's -- it's so much better to have two functional ears rather than one and be able to locate sound, hear in places with background noise, etc. Keep in touch!
Hey Clare- I saw my doctor this week and he brought up CI. He said, no they are not FDA approved yet (for SSD) and therefore not covered by insurance officially, but he has hopes that they will be approved "down the road". I think he was a little surprised by my disappointment with the BAHA. He alluded that he's had patients that were able to push a CI through insurance but it was definitely not a guarantee. Also, great article you just posted -- I thought I'd read a ton before but I learned a few things. And funny enough, I know one of the interviewees. She trained with my husband though she was a few years ahead of him in the program. Maybe I'll reach out to her and see if she has any suggestions on how to improve my relationship with my BAHA (which is quite rocky LOL!). The audiologists I've been working with seem to be top notch though, so I think these are just the limitations with the device I am dealing with and need to lower my expectations.
Glad you liked the article. Yeah, the BAHA is disappointing, though it has helped in the specific situation where someone is seated or standing on my bad side. I haven't found it helpful in background noise or multiple voice situations, which is most social gatherings. So I avoid being with friends except in quiet places and just one or two at a time. Meniere's patients should go right to CI with labyrinthectomy because of the high possibility of damage in the good ear through bilateral involvement or age. The Cleveland Clinic article pointed out that the sooner you get a CI, the better your quality of life will be. Who wants to wait for hearing to be useless prior to qualifying for a proper prosthetic? Not to mention going through another surgery, too.
Clare when I met with Dr. Rauch 2 weeks ago he indicated that I would be a candidate for a CI if my good ear continues on the path that it is on. He said too he would want to do the CI while I still have hearing in my "good"ear. We are monitoring my hearing at this point. Good news is my hearing has returned to normal for now. It is comforting knowing I have an alternative before/if I lose my hearing.
PND, that's good to hear (sorry for the pun). Do you have any quantitative information on how bad the "good" ear has to get? Mild/moderate/severe/etc. to fall into the FDA-approved range? Before my surgery, Dr. Neff said he would be happy to do a CI for me, but it would cost around $100K and not be covered by insurance. It would be interesting to find out more about the history and politics of why CI was not approved for single-sided deafness, as it is in other countries. Sure is great to be vertigo-free, though!
I've been evaluated for a CI. I was told after the evaluation that one has to have severe to profound hearing loss in both ears with no benefit from hearing aids. Sentence recognition has to be 50% or less in the ear to be implanted and 60% or less in the opposite ear. I didn't qualify at the time, as I had 51% word recognition in my better ear. That's been a couple of years ago. I'm retired now and it's not as urgent as I once felt it was. A CI is a big commitment and I'd have to travel about three hours each way for follow up appointments. It just seems overwhelming.
That's the gist of what my doc said as well. Cheryl, I can't believe you were at 51%. That's nuts! Another thing he said, which I had pretty much read but he reiterated... CIs take a good deal of work to get the real benefit. Unlike the BAHA, which is kind of plug-and-play, he said there is a ton of training one has to do to learn to reinterpret sounds you are hearing and make them useful. I haven't really gone down that road, and if I am ever in the position to be a CI candidate (if my good ear goes bad), I'd be looking into this quite a bit. I don't really understand at this point what a CI user hears. I'm sure if you google, you could find simulators. My doc said you have to be ready and willing to put in the work, over an extended period of time. Some people go through the trouble and expense of getting it, and then are put off by the effort required and end up shutting it off or not wearing the external piece all that often.
This is an interesting subject. When I met with Dr. Rauch he said "it used to be you had to be profoundly deaf but that has now changed". Mass Eye and Ear Infirmary is performing CI's on a regular basis. It is beneficial to have a CI sooner than later or while you still have some hearing left. The other interesting information is Medicare will pay for a CI but not for hearing aids!
I thought I'd swing back and update this thread. It's been just over a year since my laby surgery in July 2018. I have popped on and off the board in recent months and I know there are quite a few people new to the board and desperate for relief. I was in your shoes just a year ago. A laby is not the right choice for everyone, but things have worked out well for me. For the most part, I am much much much better. Definitely no vertigo. That's the most important part, right? I wouldn't say I am 100%, and maybe I never will be. But in terms of the drama and anxiety that all the vertigo brought, that is all gone. Which is a HUGE relief. My recovery from the surgery was (I think) a fairly normal progression. About 4-5 months ago, I started feeling kinda gross again. NOTHING like I had been pre-laby. But an uptick in general dizziness, much louder tinnitus, and general imbalance. We still don't know what's going on but the suspicion all along is that I have MAV too. I had to go back on an unrelated GI med for 3 months, and in the past when I'd been on it, it really irritated my ears, even though it wasn't supposed to. As I've just weaned off of it again, I am hoping these symptoms subside. I did make an appt with a neurologist but can't get in until mid-Fall. If things haven't improved, I might ask to go on a migraine med to see if I can get better from that angle. My neuro-oto had been hesitant to put me on migraine meds due to the side effects... plus I wasn't too keen at the time. But my husband (ENT) and I think it might be worth exploring at this point. I'm back to normal-ish life... definitely in mom mode and a constant Uber driver for the 3 kids. Ramped my freelance work back up which has been great. Traveling as much as our schedules and budget allow. I did not ski this season, as I'm still nervous about the crazies flying down the mountain behind me and me not knowing which way they are coming. I am not a great skiier. Each time we were in the mountains I opted for "me time" in a condo with a book and honestly? My mid-40s self really enjoyed that more than the stress of skiing. I have had several intense, bury your head, headaches and a few other migraine like symptoms but nothing that's gotten me down for more than a day at a time. More fuel for the vestibular migraine fire though. I still don't love the BAHA and really wear it once in a blue moon. Most days the SSD doesn't affect me much anymore. Echolocation ability is terrible but in everyday life, aside from some embarrassing moments out at the grocery store with people calling my name, it's not a huge deal. THere have been one or two scary moments driving when a siren is coming full force and I can't see it and I have no idea which way it is, and I am approaching an intersection. Most days though it's a side effect of the surgery I will gladly take in exchange for the lack of vertigo. I hope everyone else here is doing well as they can, and finding solutions that work for them. I still do come by! I don't have much to offer on so many of the threads though, as antivirals never did anything for me, never tried the B vitamins, etc. Be well everyone!
Thanks for the update. So sorry you are having to deal with headaches. I hope you will be able to get to see the neurologist sooner and find some answers. So happy for you that you have found relief from the burden of Wondering when the next vertigo attack is going to happen. For me it was a new beginning and I certainly relate to your post.
It's good to hear you found a path thru this wilderness. At 61 I try to remind myself I was fortunate to have a long life without physical issues. Now, it's our turn. It helps to be mindful that the struggle of sooo many others is far worse. Yet, there is always hope for a good day, a week, a month. It all starts with that 1st decision, priorities that place one physical function over another. I agree that vertigo is the pits. I also find I don't miss my left ear as much as I once did. I don't miss the vertigo at all. It's a beast.
