Pre & post Labyrinthectomy (and BAHA) journey

I’ve frequented this group quite a bit in the 7 years I’ve been dealing with Meniere’s and really appreciate the support and encouragement from the members. I wanted to post a message about the decision I’ve made to move forward with a laby. I’m very hopeful that this is the “beginning of the end” of the life disruptor that Meniere’s has been for me.

A “quick” history first… I woke up one morning in May 2011 with my right ear feeling very clogged. I was 37 at the time. Nothing out of the ordinary had brought this on; I’d had a nice weekend at a festival with my family (kids were about 8 and 5 at the time). My husband was getting toward the end of his ENT residency (the irony… I know). He had seen and treated and operated on plenty of Meniere’s patients during his time at the teaching hospital. In those very early days, he thought maybe it was labyrinthitis. My symptoms progressed rather quickly over the next couple weeks. The fullness became much more extreme. Intermittent tinnitus started. Brain fog. Sometime at the end of that month, I had my first major vertigo attack. At that point, I was seen by the head of his dept and with an MRI to eliminate the more serious possibilities, and hearing tests showing loss in the low frequencies, I got my Meniere’s diagnosis. At that point I don’t think I even perceived the hearing loss but was much more bothered by the pressure and fullness and most definitely the acute vertigo attacks. I ended up having 5 or so over those early months.

We tried all the usual stuff. Oral steroids, low sodium diet (I’m still on it to this day), diuretics (also still on, but have changed type and dosage numerous times) etc. I even had my IUD (Mirena) removed, which I’d had for a couple years, after reading some info about some possible sketchy side effects but it didn’t make a difference. The vertigo did slowly come under control but I was left with all the other not-fun symptoms.
Interestingly, at the end of that year I got pregnant (funny what can happen when you remove an IUD! We love our bonus baby very much ) and while I was a lot more pregnancy-sick with him than I was with the other two, my Meniere’s symptoms all but vanished. They later came back when I was still nursing but he was on solid foods and nursing less. Later, when he weaned, I went on BCP (even though I’d had a tubal when he was born by c-section) to see if I could mimic the effect of lessened MM symptoms as it was while pregnant. I take the kind where you only get a period every few months. Things seems to get under control again, but I was by no means in the clear. Around that time I tried antivirals and JOH but stopped antivirals and JOH after 6 months of no improvement.

Somewhere around then, my blood was finally tested and we found I now had mild to moderate kidney disease, which I had not had prior to Meniere’s. We still don’t know the cause of the damage. Levels have all remained stable since that diagnosis but the damage is done. It was almost certainly medication related. It may have been the potent diuretics I was on initially, before finding out I was pregnant. It was possibly the antivirals or the high-dose Lysine in JOH. No way of knowing. What I do know is, I should have had blood monitoring done as soon as I started those things (starting with diuretics) but that didn’t happen until years later and we found the elevated creatinine.

Over the next few years, my hearing very slowly and gradually kept getting bad. No major vertigo though for about 5 years. We moved around the time the baby was born and I saw Dr Rausch at Mass Eye & Ear but since things were stable-ish and I wasn’t still having vertigo, he just said to stay the course. Sometime in 2012, the once intermittent tinnitus became more and more frequent and finally that second year, it became permanent. Sometime after the next and final move, I added Betahistine to my regimen (still on it).

One interesting aside – in 2016 I had an emergency appendectomy. When I woke up from the surgery, everything was SILENT. I couldn’t believe it. NO TINNITUS. It was very short lived. Only an hour or two, and I was pretty out of it from surgery anyway, but I still remember how amazing that felt! Tinnitus is something I thought I’d habituated to, but it still changes volume and pitch and sound so often it can be super annoying. Not the worst Meniere’s symptom by far, but really irritating in my opinion.

Anyway, over those years the fullness/pressure became worse and worse and it was really having an impact on my day to day life. As was the hearing loss. I was still able to mostly function with my mom duties to 3 very busy kids, and I’m lucky in that I freelance from home so I set my own hours and can take breaks as needed. I know how fortunate I am in that. But after 5 years or so, I really started scaling back on any extras beyond mom and work duties. Social life took a huge hit and I just wasn’t motivated to go the extra step for anything. I needed naps most days just to get through. I was worn out ALL the time.

A quick trip to Mexico for my 40th unfortunately gave me a really bad GI issue that seemed to trigger an underlying problem I didn’t even know I had, a form of colitis. It took a few months for the doctors to get me on the right meds, but the problem was, those meds irritated my Meniere’s even worse. I mention this because ever since then, medications have been tricky and it’s a constant balancing act between keeping ears, kidneys, and GI happy. Some very good meds for GI are off the table for me due to Meniere’s. And the longer I am on diuretics, the worse the prognosis for kidneys. Kind of a pain. For someone who had never had any significant medical issue before age 37, this was all a new world for me.

Last summer, I finally gave in to my stubbornness and got a hearing aid and I still regret not doing it sooner. It made a HUGE difference, not just for my hearing but also it lessened the feeling of fullness substantially and knocked the tinnitus down many notches, most days. To anyone out there considering one, if you have the means and/or insurance coverage, just suck it up and get one. I should have done it at least a year or two before I finally did.

So things carried on the same, more or less, until December 2017. Once again without cause or warning, the vertigo was back. Only this time, it was way more frequent. That first year I had maybe 5 bad attacks, then nothing for years. Last winter I was having 2-3 hour attacks literally every 12 hours, you could set a watch to it. That went on for 3-4 weeks or so. I guess in reflection it wasn’t totally without warning because in the couple months leading up to December, my other symptoms got even more worse. I just didn’t expect the vertigo to that extreme. I had sac surgery and shunt placement in January. That seems to stem the attacks but things have not been the same since. Also new with that round of attacks, my hearing got even worse and I acquired severe distortion, which I hadn’t had prior. Now my awesome hearing aid, which I was (and still am) still in range – barely – of accommodating the hearing loss – now was pretty much ineffective because of the distortion. I guess there’s no fixing that.

The attacks subsided for a bit after surgery but then started up again in May. This time we tried injections of methylprednisolone (years earlier we had done dex. Injections which had no effect at all). This time I had two shots spaced 2 weeks apart, and honestly I got even worse. I refused a 3rd and he agreed it wouldn’t help. The vertigo continued. And as had been the case since December, even in-between attacks my balance has taken a huge hit and I am not very stable on my feet most of the time.

I did a new round of caloric testing, both the kind where they blow hot and cold air in your ears, and also the visual tests with big goggles and lights to look at. They couldn’t elicit any response in my bad ear with the cold air, and they used ice water instead and got just the tiniest of responses. I wouldn’t even call it vertigo.

So at this point I’m moving on. Enough of this BS. I haven’t driven in months due to the attacks and it’s made life with three kids and work and all that very difficult. I’m sacrificing what is left of my hearing and getting a laby, as well as a BAHA, tomorrow. I was offered the gent injections route, but it feels to me that may only draw out this whole affair even longer. And I’ll still be completely paranoid a new attack is just around the corner. My doc said there’s a strong likelihood even if we try gent, which he’s happy to do, I’ll end up with a laby later anyway. No thanks. Stick a fork in me, I’m done.

Still very nervous about tomorrow’s procedure, but hoping for the best. I know it will be a very rough few weeks right away but I have reinforcements (extended family) once again flying in to come to my rescue and help, especially with the kids. Barring any complications, my doc does it as outpatient so I should be even home tomorrow night, in whatever sorry state. He doesn’t feel a hospital stay is worth the increased risk of infection and I’ll be more comfortable at home. We’ll see how it goes… Oh and they put the post in for BAHA at the same time but that won’t be activated for 3 months until I am well healed, in terms of the incision for it.

Wow this got long. Thanks for reading to the end if you actually made it this far! And thanks again to all who have offered support and advice.

PS I forgot to mention one thing. It was kind of a rare occurrence but as a side effect of the sac surgery I was a lucky soul who acquired BPPV from the procedure. Apparently, a crystal or two got knocked loose. It happens a bit more frequently in other ear surgeries; my doc said he’d never had it happen for sac. Lucky me, right? Initially it was very disconcerting but I learned quickly to tell the difference between the BPPV episodes and real Meniere’s vertigo. BPPV only happens when lying down, and when I roll a certain direction in bed. And when it happens (I accidentally forget to not go to that position), it only lasts 30 seconds or so before subsiding. A silver lining (???) I guess, in having this condition, is even though this latest round of weeks of bad vertigo seems to have mostly subsided again just in advance of my laby, the fact that BPPV can still happen – and I can easily induce it if I want – tells me there’s still enough of my nerve left for vertigo in general. As much as I would love for this latest round of real attacks to have killed off the nerve “naturally”, there’s still plenty there.

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