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.

Investigating Labyrinthectomy

Discussion in 'Your Living Room' started by Marta, Nov 10, 2019.

  1. Marta

    Marta Member

    436
    24
    18
    Jan 26, 2016
    I have been reading about laby recently and I found the old posts very informative.
    I have a question to everyone who underwent the mentioned above surgery: did you have drop attacks alongside vertigo? Also what happens if the disease spreads to the other ear?
    What are the options?
     
    • Friendly Friendly x 1
  2. Philip valenti

    Philip valenti New Member

    4
    0
    3
    Nov 10, 2019
    New York
    I suggest exhausting all options first. I was 5 days away from doing that surgery thank god I canceled it. I got on a steroid for a short period got on a diaretic which I still take I started the John from Ohio supplements regimne and I went on a 1500mg per day diet and I’m doing great for about 2 years now. I know you feel like crap now but Don’t rush into that surgery. It took me a while but I’ve found tons of low sodium options out there. And a way to condense the regimne. you may have to continue to buy the supplements but if that’s the cost of no vertigo, who cares!
    Good luck Marta stay strong!
     
    • Agree Agree x 1
    • Fistbump/thanks Fistbump/thanks x 1
  3. Cheryl

    Cheryl Active Member

    791
    26
    28
    May 23, 2014
    Marta, I hope your doctor will agree to a labyrinthectomy or VNS, whatever you choose. You are strong, but you have suffered too much and too long with the horrific vertigo attacks. It's time to do something to put an end to the vertigo, once and for all. I know you have tried everything under the sun. Sometimes nothing works and you have to take more desperate measures. Good luck at your upcoming appointment.
     
    • Agree Agree x 1
    • Winner Winner x 1
    • Friendly Friendly x 1
  4. redwing1951

    redwing1951 Well-Known Member

    1,232
    91
    48
    May 13, 2014
    New Hampshire/Florida
    Yes I had drop attacks along with all the other horrible symptoms of menieres. When all else fails we are very fortunate to be able to once and for all be rid of the beast by choosing surgery. I have no regrets for choosing the laby. My OTO told me I would never have to live a life of silence if I do become bilateral. By leaving the cochlear in place I would be a candidate for a cochlear implant. So if you do decide on a laby make sure your cochlear is left intact. Once I started having drop attacks my decision to go forward with the laby was a no brainier. I hope this information is helpful to you. Good luck.
     
    • Agree Agree x 1
    • Fistbump/thanks Fistbump/thanks x 1
    • Friendly Friendly x 1
  5. Clare

    Clare Active Member

    366
    63
    28
    Mar 31, 2018
    My attacks were getting more frequent, sudden, and without any warning at all, but not quite to the degree of a drop attack. Had my laby over a year ago and don't regret it for a second. Ending the vertigo was the expected thing, but the laby also ended the anxiety that had taken a parasitic position in my life. So great to be free!
     
    • Like Like x 1
    • Friendly Friendly x 1
  6. Marta

    Marta Member

    436
    24
    18
    Jan 26, 2016
    Thank you all for your time to respond to me. I shall see what the doctor has to offer on 27th November.
     
    • Agree Agree x 1
  7. Mustang1

    Mustang1 New Member

    15
    7
    3
    Jun 21, 2019
    Upstate NY
    I had only one drop attack along with lots of sudden vertigo, that was enough to push me into getting the laby. I had my surgery less than 3 months ago, I am back doing everything I was doing several years ago.
    Best of luck to you.
     
    • Like Like x 1
    • Winner Winner x 1
    • Optimistic Optimistic x 1
  8. Bulldogs

    Bulldogs Well-Known Member

    3,049
    67
    48
    May 12, 2014
    A lot of people contact me about the laby, my experience, advice ect.....and I always tell them what Sid and so many others on this forum would tell me.... you’ll know when it’s time!!!

    For me it was when mm became more than a nuisance in my life. It was when I went to dark places about life, not knowing if I would be able to enjoy my kids, watch them grow up, be a part of their life, missing things like birthdays, Christmas shopping, school plays ect....

    I had the same questions you have... what if this, what if that, other ear ect.... and I finally said it’s out of my control, it’s in Gods hands and if I get 1, 5 , 10 or even more good years out of it, it was more than I was getting and so it became worth it.

    I then met a man in our support group who because of 2 acoustic neuromas he had to destroy both his balance nerves via surgery and he would always tell me how fortunate he was and that life was still good. He had no issues except in the dark but he was still involved in his 5 kids and 12 grandkids lives, his church friends and looked forward to the day ahead of him.

    “you will know when it’s time”
    and as Sid (who has no balance in both ears with a cochlear implant always used to tell me, “we got a life to live, it’s a good life, don’t be afraid it will all be ok”.
     
    • Agree Agree x 1
    • Fistbump/thanks Fistbump/thanks x 1
    • Winner Winner x 1
  9. Marta

    Marta Member

    436
    24
    18
    Jan 26, 2016
    Mustang and Bulldog, thank you for your replies.
    Bulldog I totally agree with what you wrote. If only my doctor says YES, I am not going to hesitate. However I read somewhere that this type of surgery is not performed on patients with good hearing. And mine is good to the extent I don’t need a hearing aid. I have even been thinking of faking my hearing test. Perhaps that’s a silly thought but it did cross my mind.
     
  10. Gardengal

    Gardengal Member

    283
    11
    18
    May 12, 2015
    Marta, when did your vertigo start again? I thought the EBD was doing very well. So sorry to hear you are not doing well.
     
  11. Marta

    Marta Member

    436
    24
    18
    Jan 26, 2016
    Gardengal I was doing great until 6th November which was just 3 years after the surgery. I am back on Monolaurin as it was the only thing that brought me some relief. My ENT appointment is on 27th November. Thank you for asking. How have you been?
     
  12. Gardengal

    Gardengal Member

    283
    11
    18
    May 12, 2015
    I have had a rough patch. Attack in August and an attack in October. Felt bad for most of October and coming out of this “flare” now. Every October for the last 5 years I have had some sort of notable incident. I wonder if it’s an allergy or change of season trigger...
    Let us know what the appt brings!
     
  13. Marta

    Marta Member

    436
    24
    18
    Jan 26, 2016
    Gardengal
    I am so sorry to hear you have not been well. You are right your October flares might be allergy related. Has your doctor looked into it? Have you considered any surgery? Get better!
     
  14. Gardengal

    Gardengal Member

    283
    11
    18
    May 12, 2015
    I have thought about surgery some. I get scared about going bilateral and about it being MAV instead of mm and having the surgery not making me better. My hearing is okay in my bad ear. I am in my 30s and worry I have plenty of time for it to go bilateral. After taking avs my flares haven’t been TOO bad and have usually passed within 1-6 weeks. I don’t know. Sometimes I want the surgery now, I just want to be DONE with this! My life (I’m sure all of ours) is weird bc of this crap. I often fantasize about being “normal.” I also know things could be worse! Such a crazy thing we deal with.
    I hope that your decisions are clear and easy and your relief is 100%. Please keep us updated.
     
    • Friendly Friendly x 1
  15. Clare

    Clare Active Member

    366
    63
    28
    Mar 31, 2018
    Gardengal, if you still have pretty good hearing in your bad ear and you are not having nearly daily vertigo attacks, surgery may not be the best course of action right now. I had a labyrinthectomy last year, which allowed me to reclaim my life -- great, but not without a cost.

    I have no regrets on the laby and would do it again in a heartbeat given the same situation, but my situation was that I already had profound hearing loss in the affected ear and was having severe vertigo attacks multiple times a week; sometimes multiple in a day. For months I was virtually housebound and dragged a bucket with me from room to room in case of an attack. Twice when I ventured out for a walk I had to call a neighbor to bring me home from just a few blocks away because I could not walk myself.

    The non-financial cost of my labyrinthectomy has been mostly social. Even though I had profound/useless hearing loss in the bad ear, I could still get a sense that some kind of sound had occurred, though it was unintelligible. After the laby, there was no sound at all from that ear, so I lost all ability to figure out where a sound was coming from. Without any ability to locate sound, I couldn't pick apart conversation threads from background noises. It was stressful to be in group situations where I could understand nothing and mostly smiled pleasantly, nodded my head as seemed appropriate, not knowing whether I'd agreed to something inadvertently. (I come from a large family with mischievous siblings who found great fun in taking advantage of my hearing situation and getting me on record responding favorably to political questions I strongly disagreed with.)

    There are other side effects of labyrinthectomy that are worth noting. I've had some ongoing imbalance that can make me lurch or stumble sometimes. Today my doc told me this might be overcome with vestibular therapy (which has been helpful in the past) but I'd have to keep up with it pretty much forever. I was told prior to surgery this could be a side effect. I worry a little that the imbalance could be a problem as I get older. Also, I can't balance at all in the dark. When you lose your vestibular function on one side, your brain tries to make sense from vision and foot/ankle (propriocepter) signals for balance. When you lose both vestibular and vision fuctions, it is nearly impossible to orient yourself -- sometimes it's like being on the space station.

    If you find yourself fantasizing about cutting your head off to get relief, and feeling this is no life to live, then you are ready to consider destructive treatments. I considered gentamicin, but because my left side hearing was already shot, I opted for the definitive treatment of labyrinthectomy surgery. With gent, I felt I would never know whether vertigo might someday return, whereas surgery would make vertigo in that ear completely impossible. Choosing laby surgery relieved me of not just the vertigo, but also the anxiety; and that was the right choice for me.

    If I were in your position at 30 years of age and still having good hearing in the bad ear, I might consider gentamicin if the vertigo attacks were life altering, but would not do labyrinthectomy. I would research carefully the types of gentamicin treatment, as some methods will destroy hearing while others have a better chance of preserving it. Only you can weigh the pros and cons of these treatments; just be sure you're informed.
     
    • Informative Informative x 2
    • Like Like x 1
    • Agree Agree x 1
  16. redwing1951

    redwing1951 Well-Known Member

    1,232
    91
    48
    May 13, 2014
    New Hampshire/Florida
    Excellent response Clare to Gardengal's post!
     
  17. Marta

    Marta Member

    436
    24
    18
    Jan 26, 2016
    Clare, it was very informative and to the point. I am glad you got your life back.
    You mentioned you can’t balance in the dark. Did you mean pitch black?
    Sometimes when I turn off the light in the evening and everything goes black I find it hard to balance until my eyesight adjusts to the new condition. After a while I seem to be OK. Is it similar in your case? If you were to walk outside in the dark with street lights on, would you be able to balance? I hope you don’t mind me asking all these questions.
     
  18. Marta

    Marta Member

    436
    24
    18
    Jan 26, 2016
    Bulldog how is your balance? Do you encounter similar problems as Clare does? From what I have gathered you lead a normal life and you are professionally active.
     
  19. Bulldogs

    Bulldogs Well-Known Member

    3,049
    67
    48
    May 12, 2014
    Hello Marta,

    My balance is excellent. I am as normal as any other 49 year old (soon to be 50 in February) man I know except I am deaf in my rt ear. But I actually hear better because I don’t have the awful fluctuating pressure, hypercusis, ect.... as I did before the laby.
    In terms of balance I am fine but I am very active and stay busy with 3 boys ages 14-10.
    I run, bike, swim, ski ect... which helps a lot I believe.
    The laby more than just physically but also mentally was a gift. The laby ensures you will never spin which is a huge benefit in terms of anxiety ect... physically the laby will give you your energy back and you will feel normal.
    I do have low level tinnitus still that can fluctuate when it’s loud or busy environments or when my stress increases.

    In terms of the bilateral question I will cross that bridge if it happens but I have had 10 years of normal life and before the laby I was in a bad and dark place. If I go bilateral I will probably do a second laby and Cochlear Implant.

    I would rather have bad balance and use a cane or something rather than live my remaining life stuck in a house with a barf bucket.

    many members on this board have gone bilateral and have no balance and live quite normal lives....many don’t come around anymore because they are busy living their lives.

    I just feel life with vertigo and drop attacks is no life...I am of the strong opinion that the vertigo must be stopped as it is the one symptom that is life changing for the worse.

    If you or anybody ants to reach out with any questions my number is (404) 408-3515

    If I don’t answer leave a message and I will get back to you ASAP.

    Joe/Bulldogs
     
    • Like Like x 1
    • Fistbump/thanks Fistbump/thanks x 1
  20. Clare

    Clare Active Member

    366
    63
    28
    Mar 31, 2018
    Marta, I find the more difficult it is to see, the more difficult it is to balance. I don't want to make too big a deal about it, because it doesn't have a big life impact on me in reasonably lit areas. I usually feel comfortable changing a ceiling light bulb today, whereas it felt too threatening to do before the laby. As I get older (I'm 64), it could become a greater concern for falls.

    To Joe's point, I agree that the difference in our activity levels accounts for a good bit of the difference in our balance abilities. I think my balance was recovering pretty well after the August surgery, but then we had a cold and icy Minnesota winter, and I became more fearful of walking outside for several months. I thought my balance would improve to 100% in the spring and summer, but I seem to have settled in just short of that. I certainly could get more diligent about doing vestibular exercises and getting indoor walking during the hibernating months.

    Joe is absolutely right that life with vertigo is no life at all. For years, the attacks were occasional and came in flare-up phases. I could tell myself that the attack would pass and I'd be fine in a couple of days. But when the attacks increased frequency, suddenness and constancy, and the anxiety over the inevitable next one was stifling to quality of life, I truly didn't see the purpose in slogging through the rest of my days locked inside with bucket in hand. The laby gave me back a life worth living.
     

Share This Page