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Labrinthectomy.

Posted , 8 users are following.

benjamin80326
benjamin80326

I have had vertigo since 2001 and numerous interventions, some working for a while.  I initially starting. with anti-nausea medications.  Saw my neurologist who suggested lamotregine (for migrtaine headaches, thought did not have them) and valium.  Both medications seem to have worked, until vertigo episodes began again.  Saw several ENTS who were not able to help.  Then was referred to an OTOLOGIST (avanced ENT) who started with steroid shots, then did a lymphatic sac decompression which worked for over two years.  Then the vertigo started all over again.  In the meantime loss my hearing entirely in left ear, subsequently fitted with a chochlear implant.  Vertigo continued; began with gentamicin regimine which seemed to work for a couple of months.  Had a series of three shots, still experiencing vertigo.  Doctor said perhaps next step might be a labrinthectomy.  Has any one gone through these many steps in attempting to get rid of Meniere's?  Has anyone had a labrinthectomy, and how has that held up?

1 like, 21 replies

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  • barry61472
    barry61472 benjamin80326

    Posted

    Hi Benjamin,

    I have deat with many of the same procedures. I have had Ménière's since the early '90's. In 12 2016 I had a Labyrinthectomy. Had my surgeon not told me that things would get very worse before things got better, I would have thought the procedure was a failure. However, after about 3 months my symptoms began to decrease. After about 5 mos. I was normal. I remained that way for about a year. Then I developed bilateral Ménière's and now I'm dealing with the symptoms all over again, but on the left side. I recently (2 weeks) started taking drops of CBD oil (without the THC that gets you high. It is helping amazingly. If I had it to do over again, I would still have the procedure. It gave me some freedom.

    • barry61472
      barry61472 judy2018

      Posted

      Judy,

      CBD oil stands for canabidiol. It is derived from hemp extract. It is most closely associated with marijuana, however IT IS NOT MARIJUANA! It can contain THC (the active ingredient in marijuana) or not. It can be smoked, eaten or taken as drops under the tongue. I use a brand with no THC, so I don't get the buzz. I take the oil (1 squirt under the tongue 2x a day.) It works with various receptors in the body such as controlling pain. Besides Ménière's, I live with constant pain from a number of prior neck surgeries. The day I got the oil was a particularly painful day. I took the oil and was pain free within 15 minutes. As to the other question, I am located in California, USA. I didn't need a prescription. I went into the local health food store, got all my questions answered and bought a bottle. I'm glad I did!

    • benjamin80326
      benjamin80326 barry61472

      Posted

      Thought perhaps the third shot of gentamicin would do the trick, but NO.  I tried to get CBD oil on Amazon but was only able to get Hemp Oil.  Bought a bottle and started using it last night.  About an hour ago I experience horrific aural fullness, on the edge of vertigo, but it abated.  Maybe the hemp works?  Time will tell.  BTW, thanks for sharing your experiences.

    • benjamin80326
      benjamin80326 barry61472

      Posted

      I hope the CBD oil keeps your bilateral menieres at bay.  I can't imagine what you're going through.  Hang in there, my friend.

  • Willow4
    Willow4 benjamin80326

    Posted

    I’m interested also, my doctor just told me the next step would be gentamicin and if no relief it would be the lab. 
    • benjamin80326
      benjamin80326 Willow4

      Posted

      I understand there can be some bad side effects with the labrinthectomy, mostly balance problems.  The gentamicin can cause eye focus problems, which is reason why I'm in vestibular therapy.  Meniere's disease is hell.

  • wendy45166
    wendy45166 benjamin80326

    Posted

    Hi Benjamin, I just had the Labyrinthectomy on June 8, 2018.  I am one week post op and so far feel as if though it was the best decision I have made.  I like you had done all other treatment with only short lived reprieve from symptoms.  My hearing was down to only 20% and ENT said I basically had no aidable hearing.  Not audible...but aidable..  I could hear sounds however was unable to distinguish words.  I was scared at first not gonna lie, but my attacks were becoming daily 2-3 times a day lasting anywhere from an hour to 6-8hrs of nothing but spinning.  I felt at this point the only thing I had to loose was my hearing.  My life was continuously of nothing but falling and spinning.  Had to take leave from work due to obviously can’t work like that. Surgery went extremely well, very little post op pain.  Day 1 post op good, day 2 post op was good, day 3 post op crashed and burned with SEVERE nausea.  Day 3 was absolutely horrible.  BUT day 4 was better and way more tolerable.  My biggest issue other than getting through nausea part was the vision disturbance.  Saw double, and was blurry.  Each day that has gotten better.  My balance is pretty good, I do teeter some here and there, but again I am only a week out.  EVERYTHING I have described I was told by my ENT would happen, and that it resolves within 2-3 weeks.  Just today I have already seen a difference with my vision.  No more double vision, just a little blurry. I do vestibular excersises 3 times a day at home.  The best saved for last.....  ABSOLUTELY NOT ONE SINGLE SPIN since surgery and just know I had a spin up as I was in the Pre-op holding area.  I am totally deaf in that ear now but being honest I really can’t tell any difference than before.  I did get the phonak hearing aids so it will transmit anything coming from left side to the right so I can hear everything around me.  Once again being honest they were very expensive to the tune of 4,445.00.  But for my job I needed this type of hearing aid. I will get those next week.  I hope this gives you some insight.   Best of luck
    • wendy45166
      wendy45166 judy2018

      Posted

      Hi Judy, yes to your question. No more vertigo, spinning, etc. Most common side effects after surgery is some dizziness, with blurry vision, and balance issues however all should subside within 2-3 weeks. Everything this doc has told me that I would experience starting with the gent injections back in January has been right on target. He says some people do great with no vestibular rehab and some may need a little help with rehab for balance. I do believe I will be the latter, but I am ok with that. Just to wake up each day and know I will not be spinning anymore is worth every single side effect I have had so far. I have no reason not to believe what he has said, as once again he he been right on target. Hope this helps. He was very thorough explaining from beginning to end... the good, the bad and the ugly. (severe nausea after surgery)
    • benjamin80326
      benjamin80326 wendy45166

      Posted

      Thanks for sharing, Wendy.  I'm still seeing if that 3rd shot of gentamicin kicks in.  Have already had several episodes of vertigo, and horrible aural fullness this evening.  At times I think it would be best to be totallydeaf than having to deal with vertigo.  Will keep you guys updated. Thank you for your responses.  Ben 

    • wendy45166
      wendy45166 benjamin80326

      Posted

      Hopeful and praying for u that it will. Doc told me sometimes takes 2-5 injections unless disease is progressing at a fast pace. Otherwise usually gets good response. It is person to person and where the disease process is. I am 2weeks post op and doing pretty darn good. No more nausea....Vision is much better. Balance is still an issue, but good of morning...as day goes by more teetering....usually by evening especially if I have been up moving around all day... walk like a drunk... start vestibular rehab on Monday, but it's only 1 day a week.. again doc said some people may need that little extra on rehab to help the brain. Haven't fallen, and ABSOLUTELY no spinning. My tinnitus has even gone down tremendously.....dont even notice it at times which is awesome. Fullness is pretty much gone. Unfortunately menieres is a come go and min by min disease.... so wish they would do more studies....surely to GOD with Medical technology today they could come up with better treatment/solutions....best of luck

    • judy2018
      judy2018 wendy45166

      Posted

      who was your doctor? Im sure that matters too how good of a surgeon they are. I live in IL
    • benjamin80326
      benjamin80326 wendy45166

      Posted

      Subsequent to my 3rd shot of gentamicin and my postings I continue to experience episodes of vertigo and/or extreme fullness, fullness to the point of just wanting to stay in bed.  At my next appointment with my otologist next month I'm requesting a labrinthectomy.  I don't think I want to deal with any of this anymore.  Your detailed experience will be helpful.  Thank you.

    • wendy45166
      wendy45166 judy2018

      Posted

      Hi Judy, I am so sorry just now replying...I am in the Dallas Ft Worth area. My doctor was Dr. Brian Rodgers with Dallas ear institute. Research your area for an ear doc who specializes in menieres. A lot of ENT docs don't "specialize" in it. They know how to treat obviously but not specialty. RESEARCH!! I did get a doc the 1st go around putting the shunt in and he was abosutely the worse doc and I am in the medical field and know how they operate....Some have poor bedside manners but may be the best doc around. I did read the reviews on him but figured this was probably the case. Nope all the reviews were right on target!! Best of luck. If I can help in any way email me!

    • wendy45166
      wendy45166 benjamin80326

      Posted

      Hi Benjamin,

      Sorry for late post been a little busy (yes I actually am busy again!!) I am very hopeful for you and glad to hear your decision. I think you will be relieved. A little update I am now 3 weeks post OP and doing really good. I started rehab and therapist says we have some work to do but all she is seeing is definitely things that will progress back to normal. I wish I could have recorded what all she said and how she explained all from beginning to end cause she put things into a crystal clear understanding of what normal ears are and what md ears are and how they work. (Better than the doc did and he was pretty good) Then explained after surgery what is going on with ear/brain on a level that I understood everything . I sat there saying on my gosh I didn't know that, and wow that's exactly what I am feeling/experinecing/doing. (Again I am in medical field and work in the Operating room) Rehab is once a week and she said at some points we may do every 2 weeks. Sometimes she will do a rehab exercise that may be a little much for brain to accept and it needs another week to figure out hence skipping a session. I am not sure what meds you are on as I am on Valium and Zofran/Compazine. I still get a little dizzy and balance can be off.. but down to 1 to 2 valium a day total of 4mg a day. I was on 12mg per day. My balance is pretty good (at home great) going out places, I have to touch a wall, or hold onto husbands arm but once I acclamate to the environment I do pretty good. (Therapist said that will be the case hence the reason at home I am much better) Went shopping yesterday for 6hrs riding on a scooter and I did not run over anybody or take out a display!! I did take my valium and zofran that morning and again before we left and by the end of the day my body and brain said ENOUGH put it down. Saved best for last once again...NOT ONE SINGLE SPIN in 3 weeks!!! Dizziness is getting much better... tinnitus is minimal, ear fullness minimal to none. I FEEL GREAT. (just want to be clear about dizziness....its a floating feeling...not things moving around) Hearing aids are great (need a little adjustment) and some time to get used to the sounds but I do here EVERYTHING

      ...some things a little too well!! ( peoples private conversations and I am like volume DOWN volume DOWN....LOL...Keep me updated...prayers for you

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