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Clare

Had labyrinthectomy with BAHA on Thursday; home on Sunday

  1. nicmger

    nicmger Member

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    June basically it looks like the headband they use during hearing tests. It wraps around the back of your head. You could do a search for the videos/pics. It looks easy to use. Might be pricey.
     
  2. June-

    June- Active Member

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    Thanks. I have adjusted to one sided hearing. I turn my head a lot, lol.
     
  3. Clare

    Clare Member

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    When I met with the audiologists about BAHA, they gave me two headband-style trial versions. One was fitted with the Oticon Pronto processor, and the other with the BAHA 5 by Cochlear. I walked around with them for several hours. Anyone who is interested in a BAHA device should be able to do this type of trial to get an idea of its benefits.

    Like June, I had gotten used to one-sided hearing. It wasn't until I did the BAHA trial that I realized the usefulness of being able to pick up sound (even without geo-locating) from my deaf side. Meniere's has insidiously caused me to isolate more over the years, and anything I can do to reduce the social barriers imposed by this disease is a step to reclaiming my life.

    With the BAHA 5 there is a choice of one accessory. On the advice of the audiologist, I chose the remote microphone in order to assist hearing in noisy situations such as a restaurant. The mic can be placed on a table or even clipped to a lecturer in a class. This is another positive step toward socializing in a way I've been unable to do for many years.
     
  4. Clare

    Clare Member

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    Day 21. Recovery has continued to go well, and walking is getting straighter every day. I still get nervous crossing streets, though, as looking both ways affects balance. In the last week I've moved from showering while seated to standing with caution. I need to steady myself with the wall if closing my eyes for even a second.

    I recall PleaseNoDizzy describing some vision disturbance during her recovery, and I've been having that too. There is oscillopsia that makes the world look like it's bobbing up and down as I walk (like the old movies before camera stabilization became a thing). There's also spontaneous nystagmus which makes fixating on an object difficult or impossible if I'm moving. Both of these have improved over the past week but have a way to go yet.

    Stitches for both laby and implant incisions have mostly dissolved, and I've been wearing my glasses with both side pieces for about a week. I barely notice discomfort from the laby, but there is still some pain radiating from the implant wound. Sometimes I take Tylenol, and sometimes just don't bother because it's not a big deal.

    Yesterday I was finally able to see my vestibular therapist, who was impressed with progress so far. She's prescribed gaze fixation exercises (staring at an "x" while moving head as if nodding yes or shaking no) as well as some balancing on one leg. I'll see her weekly as she makes the exercises more challenging. In the past she has helped me recover from bad vertigo phases, and I have high expectations for regaining full functional balance under her guidance. She thinks I may be able to drive, at first on surface streets, after being checked out with another driver. Head turning affects my balance when standing, but isn't making me dizzy.

    I originally found this vestibular therapist through the provider listing on the VeDA website, https://vestibular.org/finding-help-support/provider-directory. Luckily, she is just a 15-minute bus ride from my house.

    Stairs still feel dangerous, particularly going down. I wouldn't use them without a handrail, and carrying things from one floor to another is limited. I walk normally inside the house, though touch walls/furniture along the way when lights are turned off.

    My mood is confident and optimistic -- I had almost forgotten what that feels like. Sometimes I forget that my balance is impaired, then get annoyed when reminded by a sway. I'm hosting a birthday party for my brother on Saturday; something I wouldn't have been comfortable doing a month ago. Socializing will be even better once the BAHA is activated and I can hear conversation all around me.

    Thanks to all of you for the encouragement and for sharing your experiences. Be well!
     
  5. nicmger

    nicmger Member

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    Clare - you seem to be doing very well! I am so happy and excited for you as you go back to really LIVING.
     
  6. PleaseNoDizzy

    PleaseNoDizzy Member

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    Ditto^^!!! We seem to be having a very similar recovery experience.
     
  7. Clare

    Clare Member

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    7+ weeks post-laby, and all is going well. It feels like my skull is still healing from the BAHA implant -- not painful but occasionally a little radiated tenderness up to the top of my head. The top of my ear is slightly numb if I notice it at all.

    There's still a little visual bouncing when I walk, but lessens every week. I'm balancing well enough to do most things, but it seems risky to carry an armful of laundry downstairs, for example. Going upstairs is no problem, and I think going down is more unsettling partly because of wearing progressive lenses in my glasses. The two other activities that feel a bit unsafe are showering in a tub-shower when closing my eyes, and crossing intersections where I look both ways and sometimes stumble from the head movement. I just have to slow down a bit. That's hard, because I'm feeling so close to normal 95% of the time that I forget to pause.

    I started driving again at week 6 with no problems. About the same time I increased gardening activities to include spreading mulch, pruning, and other things that involve big head movements. At first they made me a little nauseous, but it's better now as more and more brain synapses connect. Some days my balance seems more 'off' than other days; not sure what causes that.

    Mostly I am delighted to be able to reliably make plans with friends and family, to have a sense of confidence that was hidden for more than a decade, and to be thinking more clearly unencumbered by the fog of anxiety and stress.

    I've been seeing a vestibular therapist, and up until this last crazy week doing the exercises regularly. She has me standing on a foam pad while focusing on an X on the wall and shaking or nodding my head. There's also single-leg standing and practicing to consciously stop at intersections when walking before looking both ways. I'm also seeing a physical therapist to regain muscle function that eroded during the past year of disabling vertigo. I feel like Humpty Dumpty being reassembled, though with greater success than in the nursery rhyme.

    No regrets at all about having the labyrinthectomy. In retrospect I wish I'd done it sooner, but I had to reach my level of desperation to think that drilling a hole in the head is a good idea. Recovery is a long process, but life has been better throughout.
     
  8. Pupper

    Pupper Active Member

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    It's good to hear you have no regrets and you wish you'd had a Laby sooner. In a way that says it all.
     
  9. Clare

    Clare Member

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    Pupper, are you considering another surgery? As I recall, you had an incomplete VNS, gent injections didn't work for you, and you were still dealing with miserable symptoms. I hope you're finding a light at the end of the tunnel.
     
  10. Marta

    Marta Member

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    Clare I am so happy you are doing so well!
     
  11. Pupper

    Pupper Active Member

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    Hi Clare. Yes. I'm having my 2nd VNS surgery next month. Thanks for asking. Look forward to your next update.
     
  12. Clare

    Clare Member

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    It's now been 3 1/2 months since surgery, and no vertigo at all. At the 3-month follow-up with Dr. Neff I described my balance as being 90 - 95%, and he thought I could be 100% in a year. This morning I saw the vestibular therapist. At 1 month, 2 months, and 3.5 months post-laby my DHI (dizziness handicap inventory) tested at 64, 50, and 16 respectively (lower is better). The biggest problem remaining is being able to keep balance in the dark or with eyes closed. I'm able to feel steady on a small ladder to reach the ceiling, so long as I can touch something solid for more sensory input. I had stayed off ladders for a decade because of fear of vertigo. Guess it's time to get out paint brushes and spruce up a few rooms! I traveled by train over Thanksgiving and was completely unbothered by dizziness from the extra stimulation or from looking out the window. I don't dread grocery shopping as I had before the surgery. There is still a tiny bit of radiating ache in my scalp from the surgery (could be either laby or implant incision), which can be attributed to the nerves reconnecting, and should go away over time.

    I've had my BAHA-5 processor for 12 days now. The first few days were mentally exhausting as my brain was getting used to the new sound quality, but it's easier now. The BAHA definitely helps me to pick up sounds from the left side of my head, but it does not help to geo-locate the sound since everything goes to the right ear regardless of where it's coming from. If I am in a store and someone calls my name, I have to look around and try to identify who may have spoken. It often feels confusing and looks a bit silly.

    With no useable hearing on the left side for several years, the social difficulties of single-sided deafness were well known to me. I had hoped the BAHA could help more than it does. It did allow me to converse with my brother-in-law seated to my left at the table -- something that would previously have required me to crane my neck looking backwards to hear him. But over the holiday weekend there were several times with multiple people having conversations, and I couldn't follow them. The sound was loud enough, but because it all came through my right ear, it merged into a mush with the background noise and other conversations. I couldn't separate out the sounds without looking directly at the speaker in order to understand what is being said. It was frustrating and stressful and made me want to avoid similar situations with many people.

    The BAHA-5 comes with a free accessory, and I chose the wireless mini-microphone on the advice of the audiologists. It can be connected into the audio jack on my TV or other device so that sound is sent directly to my processor via bluetooth. It also has a telecoil setting which can be used in any facility equipped with a teleloop (many theaters, classrooms, churches, etc.). Whatever goes through the sound board in the facility will get transmitted directly to my processor. I'm looking forward to trying that out. I paired the mini-mic to my iPhone so everything is controlled from there.

    I live in Minnesota, where hats are an important part of a winter wardrobe. The thing is, nothing can touch the processor, or it will give feedback, and the standard hat doesn't work well. The implant sits slightly above and a little behind the outer edges of my ear. When I asked the audiologist how people accommodate hats, she said mostly they cut holes in them to keep the processor free from feedback, or they wear earmuffs (which don't keep the head warm). I'm not wild about either solution, and may need to figure out some other BAHA-friendly head warmer. Or just hibernate for 4 months.

    Would I choose to get the BAHA implant again, knowing what I do now? I would, but with somewhat dampened expectations. If given the choice, I would jump at the chance to have a cochlear implant instead because it would actually restore function to the laby ear, allow for geo-location of sound, and make social situations more comfortable. Currently the FDA does not approve CI for adult single-sided deafness, so insurance won't cover it until the hearing in my "good" ear deteriorates with age or bilateralism.
     
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  13. PleaseNoDizzy

    PleaseNoDizzy Member

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    Hi Clare,
    I’m so glad to hear that overall you are doing so well. What a renewed life, right?

    I’m with you on the BAHA vs winter hat problem. I’m in Colorado so same deal. I’ve resorted to taking the BAHA off when outside. Clearly not ideal but I can’t deal with the feedback. I also find it very troublesome when lounging on the couch in the evening. Maybe I’m just slouchy but all that feedback when I’m trying to relax and talk to family members or watch tv... I end up shutting the BAHA off.

    Question - what are your thoughts on the quality of sound it provides? I’m debating a third trip back to the audiologist to see if anything can be done about the tinny quality. It’s especially obvious if I plug my good ear and only hear what’s coming through the BAHA. Music sounds sub par and voices aren’t great either. My husband is baffled by this. He fits kids all the time with the magnetic equivalent (can’t remember the name) and no one has yet to complain to him about sound quality. And ours is supposed to be better due to the bone anchor attachment! Mine came with a little transparent plastic piece that you can screw the aid into and a non-impaired person can hold it to their forehead while plugging both ears to “sample” it. He agrees to sound quality is tinny. I compare it to AM radio. I don’t know if it’s because my good side is still so good I know the difference or what.

    At this point I’m not wearing the BAHA full time. Only when out and about and in particular when in noisy environments. I’m a bit disappointed in the device.
     
  14. Clare

    Clare Member

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    The sound quality of the BAHA is undeniably tinny. The audiologists at Mayo told me to wear the processor as much as possible initially so my brain would adapt and make the artificial sound less noticeable. On day 12, I'm not so much bothered by the poor quality, and the BAHA does help with sound capture from my left side.

    I can understand disappointment in the device when you were so recently able to hear somewhat with both ears and could tolerate a hearing aid. The bar was set pretty low for me from the outset. I had not had useable hearing on the left for several years. I had also not been listening to music because hyperacusis and messed up frequencies made it unpleasant and sometimes intolerable. I haven't yet experimented with listening to music through the BAHA processor, but will in another week or so. My expectations are not high -- perhaps like what you get through the headphones in an MRI machine -- but maybe there will be a pleasant surprise.

    I had wondered whether the Oticon Ponto would be better because of the company's experience with hearing aids. Mayo offers both the Ponto and the BAHA 5, and they gave me sample processors of each on headbands that I wore for an afternoon before selecting. The BAHA 5 actually sounded better *for me* than the Ponto. Both were tinny.

    Next appointment with the audiologist is on December 11, and I'll post afterward.
     
  15. solari

    solari MM.org Janitor Staff Member

    Admin Post
    Clare, love your updates. They really go into detail on the process of undergoing a laby and BAHA. It's eye opening you don't even get dizzy on trains and riding around, that's pretty significant. Props!

    Thank you,
    Ray
     
  16. Pupper

    Pupper Active Member

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    Clarebear, great update. I know the other stuff must be frustrating, but your balance being 90-95% is really great! You are happy in that way, yes? I'm so used to nothing working for me, and these mostly positive laby outcomes give others like me hope. Your updates really round out the situation. Your honesty about your hearing situation and those disappointing gadgets is appreciated. In the MD community at large, there's a tendency to minimize the complete loss of hearing in one ear after a laby. So it was beneficial to read the real-deal about it, e.g. social situations, etc. I wonder how much a cochlear implant would cost out of pocket. Your updates are clear, detailed, and well written. Are you a schoolteacher?
     
  17. Clare

    Clare Member

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    Yes, Pupper, I'm super pleased to be regaining balance so well. Fear of ongoing imbalance was one of the things that concerned me most about having the laby. Because my hearing was so useless on the bad side before the surgery, I didn't have that awful adjustment to make afterward. Single-sided deafness is so socially isolating -- but not so much as unpredictable, unstoppable vertigo, right?

    My doctor suggested that paying for a CI out of pocket would be some $100K. Also, CI involves quite a long training period to interpret electrical impulses as language before it is useful. It's more difficult than interpreting bone vibrations, which are close to how we normally process language.

    No, I'm not a schoolteacher. Most recently I've been doing apparel design and custom dressmaking. I might apply some of those skills to work out a BAHA-friendly, not-too-ugly winter hat solution!
     
  18. Clare

    Clare Member

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    Had my BAHA 1-month follow-up appointment yesterday. Everything is functioning as it should be. I asked about whether listening to music could be improved, and was told, not really. The audiologist tweaked some frequencies which made a slight improvement, but the music sounded best when the processor was turned off.

    The BAHA comes with an included accessory of your choice, and I chose the mini-mic. Now that I've used it, I'm very happy with that choice. I plug it into the audio jack on my TV, and it transmits sound directly to my processor via bluetooth. It helps to clarify sound. I tried turning off subtitles, but found it's not quite good enough for that. My car has an auxiliary audio jack, which will be nice to pair with the BAHA via the mini mic.

    Cochlear (manufacturer of the BAHA 5) lets you register and get access to their online store and their "Cochlear Family" user group, etc. Unfortunately, the user group is accessed only through Facebook, Twitter, or YouTube -- applications I don't use because the data privacy policies creep me out. So I used the feedback link on the website to let Cochlear know that I wished there was a better forum for connecting with users. The next morning I had a response from the company giving me two websites where BAHA folk hang out. I tip my hat to their responsiveness.

    Overall, my take on the BAHA is that it helps in limited situations -- conversing with someone seated on your deaf side, and streaming audio via bluetooth. But in the big functions of being able to locate sound and being able to separate conversations from background noise, it is not an improvement. It's still so stressful to be in groups of people talking at once that I generally limit my socializing to 4 or fewer people at a time and stick to quiet places. Museums are good; breweries are not. At the grocery store today the checkout person was feeling talkative, and I had no idea what she was saying. I can't understand much beyond the expected "paper or plastic?". I haven't used the telecoil function yet, but hope to get out to a theater to test it. Or maybe take a class. I also haven't given the mic to a specific person to hear them speak. Those are two situations where the BAHA and mic could be useful if they perform as advertised.

    As for winter hat design, I have an idea to do a furry sort of Russian thing that will have an opening for the processor but it will be hidden and kept warm by the long fur. For a more casual design, I might make a simple fleece beanie. I'm busy with other projects now, but will get onto the hats after the holidays.

    One additional note -- for those of you who are single-sided deaf and have an iPhone, the latest software upgrade includes a Live Listen feature. It's accessed by tapping the home key 3 times. It allows the phone to be used as a microphone and can stream to Bluetooth-enabled earphones, such as Apple air-buds, or iPhone compatible hearing aids. Because the iPhone mic is designed to pick up sound from a close range, it can help to reduce background noise and perhaps make conversation easier in certain locations like restaurants. It can be placed in the middle of the table or passed from one speaker to the next.
     
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