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Laby (and BAHA) tomorrow

Discussion in 'Your Living Room' started by PleaseNoDizzy, Jul 16, 2018.

  1. PleaseNoDizzy

    PleaseNoDizzy Member

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    I’ll do another quick update; though things seem to have slowed down a bit in the past couple weeks. I’m currently a few days shy of 2 months post op...

    I’ve been seeing a vestibular therapist almost every week. I was really diligent doing the exercises at home for the first few weeks but I have to Admit I’ve been slacking of late. Which might explain why my recovery has stalled/slowed a bit. At this point, when people ask, I feel I’m operating at about 70-80%. I get the feeling the last 20 or 30 could take a long while to regain. Or maybe after drilling out your labyrinth, this is as good as it gets. Time will tell.

    I’m doing almost everything I’d be doing under normal circumstances. Hiking, driving, etc. Not sure I’ll be confident to ski this upcoming season... but I’m not a super confident skier anyway. After 7 years of strict low sodium I’ve slowly gotten back to all the yummy stuff I’d been missing... pizza, Chinese, bbq, etc. I’ve also gone back to a cup of coffee or two per day. Life is grand.

    I will say, in the past couple weeks my tinnitus in my dead ear has gotten a lot worse. Not worse than before surgery, but as bad as it had been on it’s worst days. Not sure what to make of it. I still tolerate it — what choice do I have? Not sure what to attribute it to. My ENT husband says it’s normal post labyrinthectomy. Is it my brain missing the input now that it’s really gone? Maybe the salt or caffeine I’m indulging in. We had an interesting debate — do I still have Ménière’s at this point? Not sure how you define it. Anyway, it also could be hormone related as I’ve ditched my BCPs when I stopped diuretics — my main reason to have been taking them was my ear would go nuts otherwise. I’m hoping the tinnitus quiets eventually.

    I’ll get my BAHA in a few weeks! I’ve been in several social situations recently where it was really hard to hear conversations — loud dance competitions, restaurants, etc and I hope it helps.

    Im still a little tender around the BAHA area but not terrible. There was a section of stitches under the skin where it was knotted ends and the doc had to fix a bit but it’s feeling much better now. I think the knots were keeping it from dissOlving.
     
  2. Clare

    Clare Member

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    My tinnitus was barely noticeable after the surgery, but it has returned over the past week. I think it's now back to where it was -- constant though not debilitating. I don't think it's diet-related for me, because I haven't strayed much from the low-sodium diet yet.

    Yesterday I asked my primary care about the radiating (mild) pain from the implant. She mentioned that bones can hurt when healing, as in "growing pains".

    PleaseNoDizzy, I bet you can't wait for a good game of Telephone after BAHA activation!
     
  3. PleaseNoDizzy

    PleaseNoDizzy Member

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    I got the receiver for my BAHA unit today, as well as the accessory microphone that can be used in busy restaurants etc. I'm still getting used to it and there will definitely be an adjustment period. Once they got all the settings set up, I immediately could hear a difference. The audiologist's voice, and my own, sounded very very tinny. A bit of an echo too, but mostly tinny. They made a few more adjustments and now voices still sound "different" but not as noticeably so. I really need to test this out in varied and loud settings. Right now, sitting in my quiet house working in my office I can't say there's a huge difference. And my dr said just that. Unlike a "regular" hearing aid, I shouldn't feel I need to wear it all the time. It makes no difference (other than convenience) if I put it on and off.

    One annoying thing is that I am constantly hearing my hair move. All that rustling. I have long, thick curly hair and it's down today, so over the receiver. Any slight head move and I hear rustle - rustle - rustle. They said it's something I'll acclimate to and not notice after a while. Maybe it'll also be better when I have my hair tied back in a pony tail. We'll see!

    I ran some errands afterward and feel I could hear things better and people talking to me at the post office and grocery. Good sign!

    My phone rang and when I answered it, the output sound defaulted to my hearing aid. THAT was weird! My friend's voice on the phone was quieter (though still able to hear it just fine) but also had a bit of the tinniness. It was funny because i could hold the phone at arm's length and she just kept on talking, like a crazy voice in my head. Those settings are all optional. I just need to figure out how to work it. The aid also has 4 settings for various surroundings, like music, outdoors, etc. I can change it using my phone, OR with the button on the receiver itself. That's kinda cool.

    Putting the unit on and off feels awkward so far, but I'm sure it'll become second nature in time. I feel like I'm going to break it when I put it on, but they reassure me that they are pretty hardy.

    The real test will be when we go to a really loud restaurant. Will keep you posted! I'll also see here shortly, when I take the dog for a walk, how good the outdoor setting is at cutting down the wind noise. That was one of my few complaints with my old aid, which was a fancy Widex. It is SNOWING here and blowing around so we'll see how it does.
     
  4. Clare

    Clare Member

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    Congratulations!

    Your post lets me know what to ask about when my BAHA gets activated in a month. I've had several extended family gatherings over the past few days and was noticing how difficult it is to not be able to follow the various conversations. I'm hopeful the BAHA will be a boost in those situations.

    It's weird how the phone defaulted to the hearing aid. I gather there must be a bluetooth link direct from phone to BAHA.

    Snowing? Ugh.
     
  5. PleaseNoDizzy

    PleaseNoDizzy Member

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    In the interest of full disclosure... I'm only a few days into wearing it, so it's early days, but so far I am not loving the BAHA. Hopeful when I go back to the audiologist in a week or so that some adjustments can be made. I'm a little disappointed but still hopeful.

    After I resisted it for so long, when I finally went ahead and got the regular hearing aid (Widex) about a year before my laby, it was like a difference of night and day. I had a period of adjustment with it, but in the end it made SUCH a huge difference. I guess I expected a similar change this time around, especially since the installation required a surgery (which I had at the same time as the laby). So far, it's kinda driving me nuts. I don't like that when anything slightly touches it, whether it's a chunk of hair, or if I try to wear a winter hat outside (we are already cold here!), or most often, if I lie back against the back of the couch or a pillow, it makes a terribly bad feedback sound in my head. Really loud and screechy. And it doesn't stop until whatever is touching the unit stops contact. Super annoying. I can probably get used to the minor rustling noise my hair makes when it grazes it, but the loud feedback noise isn't very tolerable.

    I was out running errands and stopped in a loud food court to get a drink, and even using the BAHA I still had a lot of trouble hearing the girl at the counter. She repeated herself several times. I had the settings on the "loud" mode too. It may still be helpful when in a loud restaurant to hear the person seated to my right, but for someone straight ahead it didn't seem to help all that much :( I haven't tried the accessory microphone yet.

    On a much more minor note -- when answering a phone call or watching video on my phone, it defaults to my aid, which means the sound quality isn't as good. I need to change the default. This should be an easy fix.

    I'm sticking with it for now... I mean, they drilled a hole in my head for this thing, so hopefully we can change some things to improve matters.
     
  6. rwj6001

    rwj6001 Member

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    Hey PleaseNoDizzy!

    Glad to hear your doing OK after the Laby! I appreciate your updates on the BAHA, I skipped getting one when my doctor talked to me about it prior to my surgery, I thought to myself, "I'll see how it goes before I get a titanium rod planted in my skull permanently, thank you." :) Sometimes I wonder if I'm missing something special,.... based on your experience so far, I don't think I am.
    Like you, I feel like I'm operating somewhere in the range of 80-90%, I am off balance quite a lot, and have to really slow down sometimes, especially in the shower when I close my eyes to wash my face, or when I'm turning while walking, etc. I've almost fallen down a few times. Other than that I feel great, no more worries about vertigo slamming me down when I least expect it. Even if I have to live like this for the rest of my life, its far better than the alternative. I did have to sell my motorcycle though, that really bummed me out, but I'm just too off balance to ride one safely at this time in my life. If things change in the future maybe I''l buy another one, time will tell.
    Well, take it easy and keep us informed on the BAHA, who knows maybe I'll get that rod implanted in my head after all!
     
    • Like Like x 1
  7. PleaseNoDizzy

    PleaseNoDizzy Member

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    Hey RWJ,
    Sorry to hear you had to sell the motorcycle. That's a big bummer. Hopefully things will get better enough that you can get a new one later on (or borrow a friend's ;) )

    As for the BAHA - I did finally find the settings so my phone calls and music no longer default to the BAHA. I can switch them to the BAHA, but it doesn't happen there by default so that's good. Still having issues with answering calls in my car, as the BAHA bluetooth seems to override the car bluetooth so that's super annoying. I can't always get the call to go to the car.

    I've gotten more used to the sounds of the BAHA, but I wouldn't say you are missing out on anything huge just yet. It's no where near the dramatic difference the Widex had been. However, I was volunteering yesterday at my son's 1st grade Halloween party -- which was pretty much the level of mayhem and noise you'd expect -- and sitting at a table with a group of 6 kids rotating through, I know I could hear a kid sitting to my right waaaaaaay better than I would have without the BAHA. In most other circumstances, like a person standing opposite me, I don't feel I have the help from it.

    Take care and keep on keeping on. I agree with you -- not having to worry about vertigo striking at any moment is HUGE. Maybe even bigger than not experiencing the vertigo itself!
     
  8. Pupper

    Pupper Member

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    I've had some personal issues in the last few months, so haven't been around. PND, Clare, thanks for the continued updates. In the months after my VNS last year, when people would ask how I was now, it was difficult to separate my recovery from surgery vs. my recovery from Meniere's dizziness as a whole. In that sense, "recovering" can be a vague word. So PND, Clare and RWJ, do you feel your Laby has improved your years-long "every-day" MD dizziness/instability? Or too early to tell. It sounds like a "yes", from your updates. Just wanting to get things clear in my mind. Thank you.
     
  9. PleaseNoDizzy

    PleaseNoDizzy Member

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    Pupper I hope all is well in your world. To answer your question, I'd say it's a resounding YES that the laby has improved my previous dizziness issues. First and foremost, no more severe vertigo attacks. I think I said it earlier, but I was in a really bad place for the last 8 months or so before the laby. The attacks were relentless. Although they were showing subtle signs of sloooooowly burning out -- their duration was shorter, from 3-4 hours to an hour or less -- they were coming one on top of another with barely any time inbetween to recover. It's really hard to say right now which is feeling better -- the fact I have no attacks, or the fact I don't have to worry and have anxiety about where and when the next one is coming.

    As for the day to day dizziness and instability... between attacks my condition had really deteriorated too. I do NOT feel 100% at this point -- at least, what I remember of what 100% feels like. BUT it is still a vast improvement over where I was pre-laby. I've become familiar with certain situations that cause me to feel unstable. Walking in the dark -- taking the kids trick or treating... or last night, my 15yr old drove us to his music lesson, then I dropped him off and simply had to walk around the car to drive home in the pitch dark -- driving isn't an issue, but that walking was. I didn't fall or anything but it's a concerted effort. Our weather for the past few months has been mostly stable, but on the rare occasion some rain or snow has blown through, I do still feel increased instability, though not to the extreme I did pre surgery. Are things perfect? No, but it's worlds better than where I was.
     
  10. Clare

    Clare Member

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    I've been following a similar path to PleaseNoDizzy. For me the absence of pervasive anxiety has been the biggest win. When an attack came, I always knew the worst would pass in a matter of hours, and could focus on that to get through. But the fear of an attack never let up, and was, I think, the primary cause behind the brain fog that made me unable to be analytical, decisive, problem-solving, and confident as I had been previously. Post-laby, my confidence has been restored, and I can make plans and follow through with friends, where previously I had become withdrawn and isolated because of the endless what-ifs. My brain function is considerably better than it was 6 months ago, and my mood has improved, too.

    My balance is about 80-90% of where it was pre-laby, by my subjective measurement. It got up to the 90% range and plateaued, then I got hammered by a head and chest cold for 3 weeks. I'm not sure whether it was being inactive for a while or the weather or something else, but my balance got a little worse (80%) after that. I'm confident that it'll get back to 90%, but not sure whether it will ever be fully restored. And that's okay. As PND said, it's worlds better than where I was.

    The first week after surgery is as incapacitating as your worst vertigo attack, except there is hope instead of dread. And I could tell that each day was a little better. The first month wasn't a picnic, being unable to drive and needing help at times, but each week showed improvement. The second month was a little better than the first, and so on. To me, the recovery seems like one of those geometric curves that gets closer and closer but never reaches zero.

    Knowing what I do now, I would choose in a heartbeat to have the laby again. That said, I would be sure to have it done by someone who is well experienced and trustworthy. I would also opt for 3 or so nights in hospital if possible -- unlike PND, who went home the day after. I don't know how she managed that.
     
  11. clykec

    clykec New Member

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    Hi Claire - I'm having my laby Nov. 20th, any words of wisdom for post-surgery?
     
  12. PleaseNoDizzy

    PleaseNoDizzy Member

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    Yeah, looking back, leaving the hospital about 4 hours after surgery was kind of crazy. Those first couple days at home were brutal. My doc's rationale was, since there were no complications, it was better to tough it out in the comfort of home and reduce the risk of an infection from extra time in hospital. Apparently that's his attitude for any of his laby patients with no complications. That being said, he was also sending me home with the ENT (different subspecialty) that I am married to, and we had extended family in town to help with everything the kids needed. All I had to do was lie there and deal with the unpleasantness. If I was short any of that support at home, I would have insisted on a longer stay for sure.
     
  13. PleaseNoDizzy

    PleaseNoDizzy Member

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    Hey, I'll chime in here :) For the first 3-5 days post surgery, don't try to do ANYTHING. Believe me, you won't want to move anyway. Get to the bathroom and any other absolute necessities, but otherwise rest and have help who will do anything else for you. Bring you food, take care of kids, whatever. After that, slowly start moving as much as you possibly can. The faster you are up and around, the sooner your brain will start to re-train itself using just one balance nerve. The condition of your bad side pre-surgery will largely determine how quickly you bounce back, but movement is important too. If it was pretty much shot before the laby, it'll be a quicker recovery.
     
  14. clykec

    clykec New Member

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    Thank you Claire. I'll keep everyone posted!
     
  15. Clare

    Clare Member

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    You may not feel like having a big Thanksgiving dinner this year, but soon after, you will be giving thanks for being freed of the vertigo anxiety. :rolleyes:
     

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