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Wheelchair users

Discussion in 'Your Living Room' started by Todd, Dec 15, 2020.

  1. Todd

    Todd New Member

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    How many of you are using a wheelchair regularly for mobility? I’ve experienced one or more episodes per day since June and have not been able to maintain balance when I’m asymptomatic. When I can walk, it’s with a cane. I’ve started looking into wheelchairs. Any thoughts or recommendations?
     
  2. Bulldogs

    Bulldogs Well-Known Member

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    Hey Todd
    Just wanted to offer my encouragement. I do not use a wheelchair but if i ever needed one I would get me an electric mobility chair and get on with my life. You can have a life using a chair. you can’t have a life falling all over the place dizzy, with vertigo barfing...afraid to go out and socialize.

    I had a laby and that was my cure all to mm...if I ever need another laby I will do it and do hat ever I had to do to give me quality of life.....I can watch my kids play sports, travel, go out to eat, ect.....in a chair.

    Hang in there my friend....I am a proponent of giving yourself the best quality of life you can.

    What is your situation in terms of interventions you have had? Are you bilateral or unilateral?

    be good my friend
    Joe/Bulldogs
     
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  3. Todd

    Todd New Member

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    Thanks for the encouragement. I’m unilateral and I’ve had shunt and laby surgery. My vestibular nerve began healing four years or so after the nerve section. I’m now twelve years post surgery and having nearly as much disruption as before.

    Thankfully I don’t get motion sickness so I don’t have to worry about throwing up. Mobility and being able to focus my eyes well enough to read are my major concerns when symtpomatic.
     
  4. Bulldogs

    Bulldogs Well-Known Member

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    Hey Toddy

    do you did not have a labyrinthectomy (the removal of the semi circular canals). Basically outpatient ear surgery.....you had a vestibular nerve section where they cut the vestibular nerve....

    I would recommend the Laby....Labyrinthectomy surgery. It’s basically they take out the inner ear. A very easy surgery especially if you have had the VNS. You will not be dizzy with a laby because the inner ear is gone.

    I have had the laby well as so many others in this forum leading normal lives. I water/snow ski, ride mountain bikes, surf, run ect.....I am as normal as any other 51 year old man except I am deaf in my rt/laby ear.

    if I was unilateral like you I would get the laby and get on with my life specially if I have already had the Vestibular nerve section surgery (VNS).

    call anytime
    404-408-3515
    Joe
     
  5. Todd

    Todd New Member

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    You’re right, I had the nerve section. I’ll have to look into the labrynthectomy. It sounds very promising. When Meniere’s isn’t active, I’ve been able to do just about anything. That’s been quite a while now.
     
  6. Weeba

    Weeba Member

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    Is it possible to have a laby in both ears? Would you be totally deaf? Would a person still have balance after laby in both ears? Would a Doctor even consider doing the surgery do you think? Can a person get VNS in both ears? Can a person still have hearing after VNS? Sorry for all the questions but I am at my wits end. Thanks...............Bill
     
  7. Todd

    Todd New Member

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    I think you’d be deaf and without balance with a laby in both ears. I haven’t had a laby and only have Menieres in one ear. The surgery sounds tempting to me.

    You can get VNS in both ears. The surgery attempts to carve out the balance portion of the vestibular nerve bundle while retaining hearing. You’d have hearing but balance would be dependent on Meniere’s activity.
     
  8. redwing1951

    redwing1951 Well-Known Member

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    You would be eligible for a cochlear implant. We have a few members who have done so. My OTO would recommend one for me if my good ear starts to act up. For me the vertigo is more debilitating than hard of hearing. I would not hesitate to have another laby if needed.
     
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  9. Autumninthefall

    Autumninthefall Active Member

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    Hi Todd,
    I had a surgical labyrinthectomy/bone anchored hearing implant in my left ear four years ago. I had the very uncommon complication of growing scar tissue within months of my surgery, so I’m no Joe, but I’d still do it again in a heartbeat. I had mine because I had recurring drop attacks. It stopped the drop attacks. If I had it to do over again I’d get a cochlear implant instead of the BAHA. Joe’s given the advice in other places on the forum, and I’ll reiterate here, you have to keep moving, and then move some more, starting immediately after you’re home from the hospital/have the all clear from your doctor. Sign up ahead of time for vestibular therapy. If you’re the kind of person who is disciplined enough to do therapy exercises outside of therapy, you’ll do great. Even though I’m not Joe, I can keep up with my German Shepherd on walks, (no, I’ll never be a runner) and they’re pretty active dogs. I think I’m doing pretty good. Good luck.
     
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  10. Todd

    Todd New Member

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    Thanks for the encouragement. Just had an MRI last week to determine whether I have any neurological issues. I’m guessing I have a couple more weeks of testing before we can determine what’s next.
     
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  11. June-

    June- Well-Known Member

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    I lost my hearing and balance nerve on the right side to acoustic neuroma surgery 23 years ago. That alone was not a big deal. I relearned balance pretty easily and the big loss on the hearing was inability to tell where sounds come from. I dont like it but it is not a big deal for me. When the cohclear hydrops hit the left ear, it was a different story. The prospect of losing balance in that ear as well either through the disease alone or surgery was daunting. I was very fortunate to find a solution with antivirals and allergy treatment that stopped the disease in its tracks and gradually restored the hearing that was lost due to the CH. Now, 13 years out from the onset of CH, I have nearly as good hearing and balance as i did before it hit me. Not everyone is so lucky but in that situation where you have no spare left, i think it is worth it to try all options before giving up. One might work. Good luck.
     
  12. Todd

    Todd New Member

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    Thanks June for sharing and for the encouragement. I’m glad you were able to maintain one ear. I’m also primarily relying on my left ear. The balance signals from my right ear disrupt as often as they help.

    My neurologist didn’t find anything concerning on the MRI so I’m headed for genetic testing for other possible neurological causes. Meanwhile my ENT thinks my symptoms are too frequent, severe and lacking in response to be only Ménière’s disease.

    I’m worried that he’ll say he can’t do anything for me while my neurologist says she can’t find anything in her testing. It’s a strange place to be.
     
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  13. Autumninthefall

    Autumninthefall Active Member

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    BEFORE you get genetic testing, are you prepared for the possibility of being diagnosed with a genetic condition? You should have a therapist lined up in advance. Regardless of your results, waiting will be stressful, and when you actually do get your results it will either be unhelpful(most likely) or give you information that could potentially shatter life as you know it(highly unlikely). You need to be prepared for either outcome.

    Then there are the ramifications of testing. Yes, the US has the GINA genetic legislation, but if you ever want life insurance, long term care insurance, etc. you need to get it now, just in case. Here’s a link on protection s:
    http://www.ginahelp.org/GINAhelp.pdf

    Just as an FYI, the genetics of all forms of hearing loss are not fully known, and even with those that are supposedly known, new additions are made all of the time. Whatever your decision, Todd, I support you, and I hope you find relief. Don’t give up.
     
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  14. Bulldogs

    Bulldogs Well-Known Member

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    Hey Todd
    I would not be wasting my time with an ENT dr.....you need to see a menieres specialist at University of Washington.

    menieres effects everyone differently
     
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  15. redwing1951

    redwing1951 Well-Known Member

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    I agree!

    Now totally off subject please forgive me but Joe is your puppy a Woodle? I have a new grand puppy and it looks a lot like yours and he is a Woodle so cute!
     
  16. Bulldogs

    Bulldogs Well-Known Member

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    Hey Red
    It is a cockapoo or cockadoodle
    Cross between a cocker spaniel and poodle

    love the no shedding aspect.
     
  17. Todd

    Todd New Member

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    Thanks for the guidance on long term care and life insurance. I’m in good shape on the second and I’m working on LTC. I have a labrynthectomy lined up now after receiving the genetic results (assuming they are negative). I’m now looking into cochlear implants to pair with the labrynthectomy.
     
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  18. Autumninthefall

    Autumninthefall Active Member

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    Good luck, Todd, and keep us posted on how things go. Recovery from the actual surgery isn't so bad. It's the vestibular exercises and making yourself move, even though you are exhausted, that's the hard part. You'll be exhausted after surgery until your brain gets used to compensating. For some people the exhaustion goes away quickly, for others it takes quite a while. Don't get discouraged! It'll happen. No two brains/ears are the same, so the recovery and compensation process is different for each person.
    The most important thing to remember is to KEEP MOVING as soon as the doctor gives the go ahead!
     
  19. redwing1951

    redwing1951 Well-Known Member

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    As stated by Autumn above keep moving. Walk as much as you can. Walk on different terrain. Look out over the horizon once in awhile as you might have a tendency to look down while you walk or at least I did. Use walking sticks if needed in the beginning. Keep walking and take a nap when you are able. Best of luck to you.
     
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  20. Bulldogs

    Bulldogs Well-Known Member

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    ^^^ what Red said
     
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