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Investigating Labyrinthectomy

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

  1. Marta

    Marta Active Member

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    Joe and Clare, thank you so much for taking your time and replying to my questions. I have made up my mind.... but what is my doctor going to say? Time will show I believe.
    Have a great weekend!
     
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  2. Mac

    Mac Active Member

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    This has been a really interesting thread.

    Good luck with your decision Marta!!

    If it helps you...I have not had a labby but I have real trouble walking in the dark as well. I have profound hearing loss in one ear and have had dozens of vertigo attacks over the past 12 years. I use a nightlight and avoid walking outside in the dark. I'm 40 years old.

    The more I hear people talk about the labby... the more I think age/activity level may play a role in complete recovery. Meaning, if you had a labby at 25 years old you may bounce back better than at 70. Just because the other "good" ear is in better shape. So my guess is... the better your "good ear" is the more likely you are to have very good/perfect balance after the labby. But I'm no doctor...this is just a guess.

    That being said...getting rid of vertigo is priceless : )

    And if your having drop attacks its a no brainer... I wish you the best of luck!!! Keep us in the loop.
     
  3. Marta

    Marta Active Member

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    Mac I do agree with you that the age factor and overall fitness may play an important role in regaining/ improving your balance after laby or just in general.

    I am 45 years old and I will do anything to live a normal life. In March this year I re-joined our local gym (a 5 year break due to MD) and I exercise a lot. Since the attack 2 weeks ago I am not as confident as I was. Anxiety is my soul mate again. I am lucky I have not had anything close to a drop attack. My balance is great, however when it’s pitch black I bump onto objects. This only happens when I go to the bathroom at night and I don’t want to wake up my husband so I don’t turn the lights on.
    I used to do PT exercises and they made a huge difference!
    By nature, I am a risk taker and if only I get a go ahead from my ENT I am not going to think twice. However I have a feeling it’s not going to be that easy.
    Mac what treatments have you undergone if I may ask? Wish you all the best!
     
  4. Mac

    Mac Active Member

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    Hey Marta,

    I have had 12 steroid shots, endolymphatic shunt/mastoidectomy, 2 clinical trials, 50k on regennokine (fake Dana White cure), anti-virals, betahistine, acupuncture, upper cervical chiro's, traveled across the country to several "top docs", mediation, yoga, diet & praying to God.

    Trust me I've tried everything : )

    I am 40 with two kids under 5...Its a grind. Because my hearing is so bad...I have had doctors tell me they would take it out.

    The past three years I have dealt with chronic disequilibrium and it sucks. I am so close to pulling the trigger on the labby but my only reservation is that some people still deal with that symptom...to me Chronic disequilibrium is maddening. Also 3 months off work and living life as a salesman with 1 ear is intimidating.

    These decisions are tough!!! Good luck and let me know what you hear from your doctor.
     
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  5. AnneT

    AnneT Well-Known Member

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    Hi Marta,
    I'm thinking of you this week, sending positive vibes for your appointment, hoping/praying for wisdom for you and your doctor.

    About the balance... I haven't had a laby (though I was also in that willing state), but am nearly 6 months after my first gentamicin shot. My balance is challenging, but I'm not sure it's that much worse than before the procedure. I don't think I had the bouncy vision before the gentamicin, but I was using a cane beforehand (and for weeks afterwards, of course) and I mostly don't need the cane now. So in some ways, my balance is functionally better?

    My hearing on my affected side is in the Moderately Severe hearing loss range, nearly to the non-aidable level. But my doctor still didn't want to go to laby yet. I was desperate, and wanted the laby, but now, so far, am glad that we did the gent. I know that not everyone has had great outcomes with it, and that things may get stirred up again for me, but it was easy (relatively) and if anything I feel like my hearing is a little better.

    All this just to say... if your doctor insists on the gent first, it might be ok. If so, find out if they do low dose (what I had) or Scorched Earth approach (what Saera had - basically trying to do a chemical laby, in hopes of avoiding surgery.)

    Either way, it sounds like you are on your way to a solution, hurrah!
     
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  6. Gardengal

    Gardengal Member

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    Mac- I feel like I am in the same boat as you, sorta. I have 4 and I am 36. I am scared of the laby but some days I really really want it.
     
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  7. Marta

    Marta Active Member

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    Mac you did try everything. The list is so long.
    It’s not easy to look after your little ones if you’re not 100%.
    I can understand why you don’t want to ‘give up’ your hearing. As a salesman you sometimes need more than a couple of ears :)
    I am a teacher and I work with 4-5 years old. I have 30 of them! There is a child in my class who is deaf in her right ear. She copes with it really well and she gives me the courage to go ahead with whatever brings relief to my MM problems. I am sure I would be able to adapt. Or perhaps I just think I am sure of it.
    Keeping my fingers crossed for you Mac!
     
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  8. Marta

    Marta Active Member

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    Anne I am glad you are vertigo free after your gent injection. At the end of the day it doesn’t matter what brings you relief, it matters it DOES bring it.
    Thank you for your positive vibes! Always welcome ;)
     
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  9. Marta

    Marta Active Member

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    :mad::mad::mad:I saw my ENT yesterday and I was soooo disappointed. In fact I saw a registar ( he did leave the room for a couple of minutes to speak to THE doctor) and he told me that I have to wait and see how things go. He gave me an open appointment which means if anything happens I can ring the hospital and make an appointment quite quickly. It also means that if I do not contact them within the next 6 month I will be discharged. I asked him what if.... I do have more attacks . He replied ‘steroid injections’ I told him I had had two and they hadn’t worked. He replied that sometimes you need a series of such injections. I didn’t want to continue the conversation as I got really angry . He is a junior doctor after all and I believe I know about Menieres more than he does.
    Despite everything I am going to contact them within the next 6 month for sure and if need be I am going to exaggerate to be heard and listened to. That’s my story for the week.:mad::mad::mad:
     
  10. AnneT

    AnneT Well-Known Member

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    Oh Marta I’m so sorry. Is there someone else you can see?

    I got a little better action and attention after contacting the Head of ENT Department locally. I put in my email, very briefly, my diagnosis, the negative impacts on my life, and my understanding of what treatments I required. My issue was different from yours - the prolonged and indefinite nature of the wait list. But still, I wonder if something like that might help get you someone who is familiar with ALL the Menieres treatment options?

    And/or return to this doctor, with a friend or family member along, and articles in hand, and ask him specifically about gentamicin, laby etc. Although you may not trust this guy to do procedures on you... but if he’s not trained in these procedures he should be ethically bound to refer you to someone who is.

    on your behalf!
     
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  11. AnneT

    AnneT Well-Known Member

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    *Mad on your behalf
     
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  12. Marta

    Marta Active Member

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    :)Anne, the consultant is an expert at Meniere’s. I hope next time I will see him not a doctor from his team. Don’t think I will find anyone better. I will have to play the game and I am not going to give up. If things go fine( no vertigo) the next appointment is going to be within the next 6 months for sure.
    Hope all is good on your side.:)
     
  13. Gardengal

    Gardengal Member

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    Marta, sorry to hear this. Very frustrating. In the mean time, had the lauricidin helped any?
     
  14. AnneT

    AnneT Well-Known Member

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    Hi Marta
    I guess in England “registrar” is the same as a “resident” in North America? A doctor in training?

    Yup play the game,do what you gotta do. Ugh. I feel for you.

    Yes, all mostly good here, thanks. I’m taking the plunge and heading back to art school in January- just one course. Even that is slightly terrifying, as I had soooo many attacks in that building which led to me quitting, not driving and going for gentamicin.
     
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  15. melissa

    melissa New Member

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    This is such a helpful thread. My Dr., who I really like, is getting tired of giving me gentamycin injections and has strongly suggested surgery. I'm not there yet, but was close last time before the gent shot. Thanks to all who have shared some positive experiences.
     
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  16. Marta

    Marta Active Member

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    I have been taking Lauricidin for nearly 3 weeks now . I feel good, no problems at all. I remember before surgery it reduced my attacks from 3-4 per week to 1 per four to six weeks.
    Whether it’s the same this time I don’t know.
     
  17. Marta

    Marta Active Member

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    Anne that’s correct, it’s a doctor in training. I keep my fingers crossed for you and the course. You will be fine! Fear not. Big hugs !
     
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  18. Erin

    Erin New Member

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    Hi Joe,

    I read this post and noticed your 404 number - are you an atlanta resident?! If so, do you mind me asking who your doctor is? The one who preformed the laby?
    I am currently in the care of Dr. Jennifer Tirino in and she recently gave me the Meniere's diagnosis. We're going to try and fit in my first gent injections before the new year (as I've already met my deductible and out of pocket - woo hoo!) and I'm hopeful that these will help. However, after spending some time on the boards and doing research on my own, I'm also thinking about what my future possibilities are if they don't work. I have very little hearing left in my right ear, and very frequent attacks that have already cost me a job and several clients and I don't want to miss out any more of my life.
    Thanks for your time - any help is greatly appreciated!

    - Erin
     
  19. Bulldogs

    Bulldogs Well-Known Member

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    Hi Erin

    Dr Douglass Mattox at Emory did my laby 10 years ago. I have seen Dr Tirino in Roswell and know several of her patients. I think you are in good hands. She is one of the up and coming stars from what I understand and is a top notch surgeon from what I hear.

    If and when Dr Mattox retires I will probably see Dr Tirino.


    Joe/BD
     

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