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What’s left…

Discussion in 'Your Living Room' started by JenLKN, Apr 23, 2019.

  1. JenLKN

    JenLKN New Member

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    I’m almost 50 years old, who had encephalitis at 18 months. Drs think that’s where the destruction of my inner ear/Ménière came into my life. I struggled as a child with learning. I had to work twice as hard for the occasional A, many B’s and C’s. No matter how many note taking classes I took in college, I couldn’t get information to stick well enough to pass my nursing classes. I gave up and although I knew I was not dumb, was very realistic as to my super powers which were the ability to communicate/sales.

    Vertigo began at age 21, as it increased and I had a baby at 25, we decided to try the shunt. It was an unmitigated disaster. I lost all sense of balance and took PT and 8 weeks to get me upright. Second worse thing in my life to ever happen to me. My dr literally walked away from me and tossed me aside. I knew there was a chance it wouldn’t work, but young and hopeful.

    Over the past 25 years, I can count well over 75 times generously where I have gone all out vertigo, give me Clonopin and sleep it off type. I carry it with me for emergencies and not counting those off balance dizzy feelings.

    I’ve had every test, MRI, PT plan, Epley Maneuver, hearing test etc… It all points to Ménières but I swore I’d never do surgery again. Well since Feb, my vertigo attacks are weekly and this last one I’m not coming out of. I’m upping my Clonopin which knocks me out of my misery, but is not living.

    Went to a new ENT, we recently moved in the last 2 years, he has me on steroids that have increased my anxiety and dizziness. I want to throw them away, but am making myself finish the last 3 days come hell or high water. Lol We then are doing the only other thing that’s never been done and that’s allergy testing.

    I’m not hopeful...I feel like this is the end. If vertigo is this bad, then I can only surmise I will have to do a drastic surgery and lose the rest of my hearing without a 100% chance of my vertigo going away forever. I’m very lost, but I’m only 50. My last child is leaving for college in the fall, I have future dreams, but cannot rely upon myself bc of this Ménière’s disease which has held me back a lot of my life.

    Does anyone have any input? Am I missing something? No I have not discussed surgery with my new ENT, but I know my body. I’m otherwise physically fit. But when is enough...enough?
     
  2. AmyLeigh

    AmyLeigh Member

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    JenLKN - I'm so sorry about your struggles. This disease is a beast. And unfortunately nothing works for everyone across the board so it's mostly up to you to figure out what treatment/therapy/medicine/surgery to try next. I started keeping a journal and it's really helping me. I track my food (calories, carbs, sodium and sugar - those are my triggers), sleep, stress levels, supplements, exercise, allergies, etc. That way every time I get an attack it's a data point and I can use it to figure out what my trigger (and eventually underlying cause) is. I also track the following "cures" to see if they help - things I've tried are:
    - JOH (John of Ohio) supplement regimen (search this board for details - it's helped a lot of people)
    - B5/B6 vitamin regimen (again search this board)
    - Allergy shots
    - Upper cervical chiropractor
    - Antivirals (I take Valtrex)
    - Low Sodium Diet
    - Low Carbohydrate Diet
    - Sac Decompression Surgery (didn't work for me)

    Things I have not yet tried, but are open to trying if the above doesn't work:
    - Acupuncture
    - Dental evaluation
    - Water Therapy
    - High Antioxidant Supplements
    - Elimination Diet
    - VAS Surgery (last resort)
    - Other things I don't even know about yet

    Nothing is a quick fix for this disease - it takes a lot of figuring out what works (and doesn't work) for you. Give it time and enjoy the days where you feel good in-between. Good luck!
     
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  3. Cheryl

    Cheryl Active Member

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    Jen, do you have Meniere's in both ears?
     
  4. Clare

    Clare Active Member

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    Jen, when I got to having multiple vertigo episodes per week and it felt like there was no life in my life, I finally considered destructive treatments -- gentamicin or labyrinthectomy. I had single-sided menieres, my hearing was useless in the bad ear, and in desperation drilling a hole in my head seemed like a good idea if only it would stop the vertigo attacks that were so utterly disabling. And for me having the laby did turn out to be a good idea. Eight months out from surgery, I continue to feel grateful for the freedom from constant anxiety, the ability to make plans and show up, and in general being able to participate in life again.

    Not to sugarcoat things, if I were facing the choice of destructive treatment and still had useable hearing in my bad ear, it would be tougher to choose treatment that would eliminate hearing. If you have only one-sided hearing, you cannot geo-locate sound, which makes it terribly difficult -- and stressful -- to follow conversation when there is background noise or multiple people talking. Your brain wants to make sense of the sounds but doesn't have the inputs necessary to distinguish good sound from noise, and it ends up feeling like a brain-cramp. I remember asking my book group friends to talk one at a time, but that was like herding cats, and eventually I left the group because it felt so bad to not understand so many of the conversations.

    Balance loss is another side effect of both gent and laby. The balance loss occurs because the vestibular system is destroyed in order to stop the vertigo. However, the brain is able to re-wire itself to restore most balance despite the damaged ear. The balance recovery from surgery is a tough slog for some 4-6 months, but each week brings encouraging improvement if you're active, walking every day, doing some vestibular exercises, etc. At this point I have some very slight imbalance which may not go away, but doesn't affect me in anything I want to do. It's just that certain movements remind me of how lucky I am not to still be crippled with vertigo.
     
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  5. JenLKN

    JenLKN New Member

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    I just have it thankfully in my right ear.
     
  6. JenLKN

    JenLKN New Member

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  7. JenLKN

    JenLKN New Member

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    Clare thank you for your insight. This will not be a decision that will be taken lightly and is several months off, as I’m just beginning my research on this.
    I’m thankful to read your progression after surgery and am wondering in your prior research, were you able to find others that had the same surgery as you?

    I tried FaceBook, but think I will leave those groups, as I’m much more advanced in my Menieres Disease and find it more depressing to read the start of their new journeys. I was amazed though at how many groups are on FaceBook for this.

    If you don’t mind me asking, how old were you when you had the surgery? Are there other groups your a part off, that are as advanced as this one?
     
  8. Clare

    Clare Active Member

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    Jen, I'm not on Facebook and don't participate in any other groups. This forum has been a great help to me. I was fortunate to be going through my decision (gent vs laby, since hearing wasn't trying to be preserved) and the surgery shortly after another member, PleaseNoDizzy. She did a great job cataloging her journey through surgery and recovery, for which I am so grateful. You will learn a lot by reading her posts. I've tried to post my experience too. Go to "Search Database" and type in "labyrinthectomy" to learn what others have said. Also, I started a thread at the time called "Deciding between labyrinthectomy and gentamicin" which tells more about my thought process in evaluating the options.

    I was 63 at the time of surgery and wish I'd done it sooner.
     
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  9. JenLKN

    JenLKN New Member

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  10. JenLKN

    JenLKN New Member

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    The laby surgery, as you and PleaseNoDizzy, have described, is exactly as have I pictured in my mind. There’s no doubt, I do not want the injections, my Menieres was diagnosed so many years ago, that the damage is done. I am at the end, the vertigo is not going away even with meds. My latest hearing test, showed extreme damage to nothing in lower levels of my right ear. No more diet changes, I doubt my allergy tests will come back with much of anything. Having Encephalitis as a toddler, did my inner ear in unfortunately. Recovering from the shunt, I had placed back behind my ear in 1995, was a nightmare. I had no heads up from the dr that it could backfire and actually set me back months like it did. I of course was too naive to get more opinions and believed every word he said. I had a 5 month old baby at the time, my mother in law flew in to take care of her. I shudder to think of going through it again, however if there is a road at the end that will leave me vertigo free, I must take it! I lost 15lbs with that surgery! Lol Do they give you meds for the vertigo right after surgery? I’ve just done it for so long, that if I had my choice, I would say, knock me out and wake me up in 2 months! I have PTSD from shunt surgery due to it going so badly!

    I’m tired of the anxiety of vertigo, taking Clonopin and sleeping to make it go away. Missing out on things unexpectedly, afraid to drive long distances. Carrying Clonopin at all times, just in case. The depression that comes with it, at times can be overwhelming. I just know, most family members live into their 90’s in my family and I cannot do another 45 years like this.
     
  11. Clare

    Clare Active Member

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    The hardest part of the laby recovery is retraining the brain to balance without the missing portion of the vestibular system, and that takes a few months. Choose a reputable doctor who has done a bunch of labyrinthectomy surgeries without complication and who will keep you in hospital for 3-4 nights until you are stabilized. The dizziness is miserable at first, but zofran is effective for nausea. Have someone available to stay with you for two weeks or until you are able to make your own peanut butter sandwiches. Have a shower seat available because standing is precarious for a while. Relief from anxiety is immediate -- you will be dizzy but not feeling like a vertigo attack is coming. Each day, week and month gets better with just the usual zig-zaging. Being as active as possible -- walking daily, etc. -- is super important to regaining balance function. Get rid of your rescue medicines and diuretics along with their dry mouth and other side effects. Eat whatever you want! Make plans with confidence that you will be able to show up.

    It's so worth it to be able to live your life again.
     
  12. June-

    June- Well-Known Member

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    I have had no hearing or balance nerve on the right side since 1997. I would rather i did but it is no big deal for me. I was 49 when i lost the 8th nerve due to an acoustic neuroma and resulting surgery. I cannot echolocate. I wish i could but i do not have a job that requires it. I ride a bicycle bery well but stick to paths not streets. It took a while. Right after surgery, do not plan on climbing ladders etc but if you walk a whole lot you are likely to get pretty decent balance back. Yes, restaurants and other noisy places are difficult and sitting in a meeting room requires me to oick my seat judiciously. Everyone’s outcome is different but for me it was not a big deal after the first 6-12 months.

    When i got cochlear hydrops in the good ear, it was scare but fortunatly antivirals and allergy shots got rid of it and saved the left nerve. Good luck!
     
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  13. Pupper

    Pupper Active Member

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    JennLKN,

    Your first paragraph cracked me up. I didn't get why you were talking about intelligence. Then I went back and read it again and Googled encephalitis. It says it causes the brain to swell. I had a similar experience. A few weeks after birth I got meningitis and almost died. It makes a part of your brain swell too. It seems it's caused by a virus or bacteria. Thing is, I've always forgotten to mention it to all the dizzy doctors and on all the forms I've filled out. So it's good I read your post. Thanks. Plus Johns Hopkins University says it can screw with you in weird ways later in life. I can attest to that.

    I didn't have time to read the entire thread, so not sure if VNS surgery was mentioned. Besides removing the inner ear, it's considered the "gold standard" of the Meniere's surgeries. I had two of them and I can unhappily tell you it didn't work. But it works for most patients. If you've still got socially useful hearing in your bad ear, try it, you might like it.

    As for your situation, lots of info on DizzinessAndBalance.com

    Meniere's Disease
     
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  14. Cheryl

    Cheryl Active Member

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    Hi Jen,

    I had a nightmare shunt surgery in 1993. I was only supposed to be in the hospital overnight and ended up being there four days. I woke up from the surgery with severe vertigo and still had it when I went home. The vertigo eventually stopped after I got home, but less than two weeks later I got a vertigo attack while in the shower. It only got worse from there. Even though I had only a moderate hearing loss before shunt, it was a profound loss after, and I never recovered any hearing in that ear. Vertigo became almost constant. I'd just get over one attack and another one would start. I had young children and I couldn't go anywhere alone.

    Eleven months after the shunt I went back to the surgeon and was prepared to tell him to either do a VNS or shoot me, but after I told him about the way I had been living for almost a year, he offered the VNS surgery right away.

    I didn't have any vertigo following the VNS. The surgeon was surprised the day after the surgery when he came to my room and I was sitting up in bed reading a magazine. I did have one eye covered because I had double vision for a few days after the VNS. I was able to walk to the bathroom unassisted, but with a nurse by my side, right after I was moved from ICU to a regular room the day after surgery.

    Your recovery would depend on how much damage has already been done to your vestibular nerve. In my case, the surgeon found that my nerve had nearly severed itself and my right side had been gradually compensating for my left (VNS) side. So, when the left nerve was severed, I was already relying on my right side for balance.

    I was wobbly for awhile after. What tiny bit of hearing I have in my left ear was preserved. I didn't have any physical therapy. For several years after the VNS, all was well. I lived a perfectly normal life. Several years ago I developed MM in my other ear and lost a lot of hearing in it almost right away. I haven't had a vertigo attack in quite some time.

    I hope you soon find an answer that is best for you. Living the way you are now is no way to have to live.
     
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  15. redwing1951

    redwing1951 Well-Known Member

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    Jen I had a laby 5 years ago after dealing with menieres for 12 years. The last 3 years before I selected surgery were the worst years. I was light headed every day. I developed drop attacks and my hearing was gone. I was in the hospital one overnight. I went home the next morning. I experienced double vision for about 5 days which was a surprise to me because that was one side affect no one mentioned to me. I had no dizzy spells and was able to walk unattended. I was driving after 2 weeks. By far the best reward for my decision to have surgery was the "monkey off my back". No worries about my next vertigo or drop attacks. Finally my fears were gone. Yes, social situations can be difficult in terms of conversation but you will learn to sit in places that will help you with that. I use a hearing aid in my good ear which helps. You will have a hard time with knowing where sounds are coming from and might find yourself asking "where are you, where is that noise?. But again a small price to pay for having your life return to normal.

    I hope that the posts above will bring you hope and comfort. There is a way out of your misery. I wish you the very best no matter what you decide to do.
     
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  16. JenLKN

    JenLKN New Member

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  17. JenLKN

    JenLKN New Member

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    RedWing—— May I ask how old you were when you had your surgery?
     
  18. JenLKN

    JenLKN New Member

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    Ok why didn’t it work for you? What is your quality of life now? And how old were you when you had the surgery?
     
  19. redwing1951

    redwing1951 Well-Known Member

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    Certainly I was 63. I did try a gent shot at 62 after suffering off and on for 12 years. The gent made me very dizzy for the year before I chose the laby. If I had to do it over again I would skip the gent based on how horrible I felt. It did stop vertigo for about 8 months. I also want you to know that I am a very active senior. Before my laby I ran marathons did triathlons climbed mountains. Now 5 years after laby I am back living my full active life.

    There are a few members closer to your age who have selected the laby. Reach out to Bulldogs.. he will tell you his journey and his life after laby. Also Hurricaneone another member living life to the fullest after laby.
     
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  20. Pupper

    Pupper Active Member

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    Got Meniere's at around 45. Around that time had many gent injections, then shunt. Didn't work. First VNS at 48 in '17. Now 49, had second VNS Dec '18. They think the first didn't work because they didn't cut the whole nerve. 2nd VNS was type of VNS that let's them see entire nerve. Quality of life...relatively speaking as a Meniere's sufferer who's seen much worse time...is C-. I haven't had spinning attacks since a few months after my first VNS. About a year and some months ago I guess. Still lightheaded. And head movement causes unsteadiness/dizzyish feeling. But I don't lose my balance. Head movement problem may be from last surgery, which is common during 6 to 12 month VNS recovery period, which I'm still in. Maybe it will all turn out well. At the very least, if it solves spinning attack issues, it's worth it.

    If you have ok hearing in bad ear, the standard progression after trying everything else, is that VNS should precede a Laby, for obvious reasons. Talk to a serious vestibular specialist.
     

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