1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

When To Consider Surgery

Discussion in 'Your Living Room' started by Marko, Jul 27, 2022.

  1. Marko

    Marko New Member

    17
    2
    3
    Jul 7, 2022
    Hey Guys,

    The subject pretty much says it all. At what point would you consider getting surgery done to get rid of MD symptoms.

    Thanks!
     
  2. Donamo

    Donamo Active Member

    440
    88
    28
    May 12, 2014
    Yes, that would be a tough decision. This disease fluctuates so much and can go into remission for years, makes the decision harder.

    For me, I think it would be when I reach the point of considering knocking myself off, which I'm sure many of us have thought about when things are bad.
     
    • Agree Agree x 1
  3. Gardener

    Gardener New Member

    3
    3
    3
    Aug 7, 2019
    I had a laby in 2018 (diagnosed 2001), after getting virtually housebound by multiple vertigo attacks a week, sometimes multiple a day. Walking just a few blocks from my home, twice I had to call a neighbor to bring me home because of disabling attacks leaving me sitting on the sidewalk or in a shop, unable to get home. Concluding this was no life worth living, I opted for laby surgery. I decided not to go with gentamicin or some of the other surgery options because I realized that the anxiety of the next attack was controlling my life even more than the 4-6 hours of the actual vertigo attack. I needed to know there was no possibility of another vertigo attack in order to feel free and reclaim my life.

    Prior to the surgery I had almost no useful hearing on the Meniere’s side but could still know that some non-useful sound had been made. That allowed me to locate the source of the sound and to know who was talking to me and face that person for lip-reading or other cues, which helped with social interaction. After the laby there was no ability to locate sound, and when multiple people were speaking it all blended into a single set of frequencies. It was disorienting and unpleasant and remains so.

    Now I meet with friends/family one or a few at a time in places where there isn’t background noise or multiple conversations — usually at my home or theirs. Restaurants and other social gathering places are stressful and avoided.

    As you know, the laby destroys the vestibular system, and retraining the brain to balance by visual cues instead takes many months and a good vestibular therapist. Do the visual exercises. The laby has left me with some permanent imbalance (not uncommon) which is usually not a bother except when slipping on winter ice makes it too risky to go out. Also, I don’t drive after dark because my balance is impaired in low light, and an eye condition makes it more difficult to see.

    I had a BAHA implant at the same time as my laby, which meant one surgery instead of two. The BAHA works similar to a CROS hearing aid in that sound is captured on the deaf side and sent to the better side, but by bone vibrations rather than Bluetooth. I have psoriasis, and the CROS hearing aids were somewhat irritating, so the BAHA was a good solution for me. However, there are several reports online of difficulties with skin growth or infection around the BAHA implant site, so do your research and make sure you have an experienced surgeon with a good success record. Socially, the main benefit of my BAHA (similar to CROS hearing aids) is that I can hear someone sitting next to me on my deaf side, and that’s a worthwhile advantage. Walking with a friend, I don’t have to dance around them to get sound on my hearing side.

    Another helpful benefit of the BAHA is that I can stream sound from my cell phone or TV directly into the device without going through air and picking up sounds in the room. This makes a huge difference in clarity of the sound. It also means the TV doesn’t have to be loud for others who are watching. As the hearing on my “good” side has declined, the BAHA has become more important to me to get through the day. Unfortunately but perhaps predictably, my last checkup indicated my “good” side has declined enough to need a hearing aid. There aren’t good software options to coordinate both a BAHA and a hearing aid, so I’m trying to figure that out.

    I’m grateful for the laby and for the release from unrelenting anxiety it gave me. My life has been reclaimed, though diminished as indicated above. The laby doesn’t make Meniere’s go away. It was definitely the right choice for me, but it may not be for someone who has useable hearing or fewer debilitating vertigo attacks.
     
    • Like Like x 1
  4. Donamo

    Donamo Active Member

    440
    88
    28
    May 12, 2014
    Wow, what a wonderful, informative post. Thank you for doing that and good luck to you.
     
  5. PleaseNoDizzy

    PleaseNoDizzy Active Member

    243
    29
    28
    May 12, 2014
    I also had a laby in 2018, after onset and diagnosis in 2011. I could have written most of Gardener's post. With three young kids at home and my own business, I was at the point where I just couldn't function, for my kids, myself, my husband, my business. My attacks ramped up at the end and I was in constant fear, leaving myself tied to home and not comfortable going anywhere, in particular by myself and ESPECIALLY with the kids/baby. My life was a shadow of what it had been. The surgery brought immediate relief from the anxiety and worry, and eventual independence.

    I don't love the BAHA as much as I had appreciated the traditional aid I had before the surgery. It is only in very particular situations (like having someone sitting to my right in a busy restaurant) that is seems helpful. I still miss some things, and occasionally those around me get frustrated, "why aren't you wearing your hearing aid??" when I mishear or miss something altogether. They don't get that it doesn't always help. The sound quality on it isn't great either, particularly for music. I just found out I am eligible via insurance to upgrade to the latest model and it's being shipped soon.. hoping for improvement in that department.

    I still do struggle with vestibular challenges sometimes, as it turns out my doc was right all along and I have a dual diagnosis with vestibular migraine. But all in all, that surgery gave me, ME back. I'd do it again in a heartbeat.
     
  6. PleaseNoDizzy

    PleaseNoDizzy Active Member

    243
    29
    28
    May 12, 2014
    PS The knowledge of sound direction will always be an issue, it's not something you can re-learn without at least some hearing on the dead side. We've had an issue with the main remote control for our living room tv going missing, usually buried in a couch cushion. I got tired of digging around for it and bought a Tile to stick on it. Now I can page the remote from the phone app; it plays a tune so you can find where it's hiding. I still have to make my kids come follow the sound though - I have zero ability to do it. Humorous in this situation but kind of embarrassing at times (like when a friend sees me and calls my name in a grocery store... I'm looking up, down, all around, no idea where you are!).
     
    • Winner Winner x 1
  7. Hickspanic

    Hickspanic Member

    39
    6
    8
    Jan 31, 2022
    I have it Bilateral, I don't think I can bring my self to auger out both of my vestibular balance systems. Is there a shunt of some kind that can be surgically placed to drain away excess hydrop fluids?
     

Share This Page