Sunday, June 20, 2010

Surgery, hearing aids and Meniere’s disease

It has been over a week since my last gentamicin injection and things are pretty good. I still feel like I could have an attack every day but I usually take medication before that happens. I am still on disability and I don’t know how long that will be because I have 3 more gent injections to go through. I hope that my meniere’s disease is controlled by these shots because I am not sure what my options are after that, maybe the Labyrinthectomy surgery.


My doctor mentioned that he had another patient who went through 2 sets of gent injections to no avail. Finally this patient decided on the Labyrinthectomy surgery. I had received an email from someone who had the surgery done and it seemed to go all right for them.

Here is the comment.



Anonymous said...


I had a Labyrinthectomy in 2001 due to a 10 year ordeal with Meniere's in my left ear. My right ear is doing great. I have had a Bone Anchored Hearing Aid (BAHA) since then for the left ear. The only symptom that has remained in my left ear from the Meniere's is the tinnitus. I may be deaf in the left ear, but I have been contending with this tinnitus since 2001(really since 1992 when the Meniere's began) & I am finding as I get older, it is getting worse. The good thing is that my Meniere's did not go to the other ear. My otolaryngologist (at the University of Wisconsin Clinics & Hospital-Madison) told me years ago that if you don't get Meniere's in the other ear within two years of the onset of the first ear, you will not get Meniere's in the other ear. Good luck all you Meniere's sufferers. I know your ordeal & empathize with you.




This is interesting because I didn’t think that you could use a hearing aid after this type of surgery. I will definitely look in to that. Also my doctor told me the same thing about bilateral meniere’s, if it doesn’t go into the other ear within a few years then it probably won’t. That is good news but with Meniere’s disease nothing is written in stone.

The thought of surgery scares me quite a bit, because I also received a comment from someone who had a terrible time with their surgery. Here is Marsha’s story from my squidoo page.

Hello,


I to suffer from Meniere's. I have had it since 1997. I have had the ear sac surgery was ok for awhile but it came back with a vengeance. I would have attacks that lasted 5days. I was very sick and some mornings wish I just wouldn't wake up. I did the diet no salt no caffeine. Watched what I ate sit had attacks. I took different drugs Antivert or valium did not work for me. About 2 years ago I had my inner ear removed hoping this would work. I still have balance issues can't climb stairs ground has to be level or I will fall can't drive a car because I fill drink and can't focus on the road. I still have ringing which is even worse now then before. I am also on SSD because I can't work. This disease makes me fill so worthless I used to be very independent now I have to count on my family to take me places. They told me that this surgery will make it better well you can't prove that to me. I still have attacks not as bad but bad enough to the point I don't want to even leave my house. People don't understand how scary it is. I worked for 20 years taking care of people and now I can't take care of my self sometimes. Well thanks to those who read this makes me fill better knowing I am not alone.


Marsha






I feel terrible for Marsha and anyone else who have had such a very bad experience with surgery because this type of surgery can’t be reversed.

Hopefully the gent injections will work and I wouldn’t have to even consider surgery. That’s what I hope for.



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27 comments:

  1. I've had meniere's for about 12 years now and it's only just spread into my right ear. But then again I got it very young, and get drop attacks too which are only supposed to happen to some people, so maybe I'm odd.
    I'm starting teacher training this September which worries me a lot; will I hear them, will I get dizzy and have to crawl around throwing up in front of them, what if something really stressful happens and instead of sorting it I have a drop attack instead... I'm sure it'll be fine, just can't help worrying! Are there any teachers around who can give me any tips?

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  2. Hi Amy,
    You should check out the website http://nickioftheperipheralview.blogspot.com/2010/05/me-vs-count-vertigo.html

    Nicki also has meniere's and I believe she is a teacher. Her blog is really good.
    Good luck with your teacher training, I'm sure that you will do just fine! Let us know how it is going.
    David

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  3. After several weeks with no severe vertigo I had a run with the roundabout this night. Not one of the worst, but enough to give me a slight hang-over today. I can stand a hangover if it´s cauesed by having fun...
    My body is aching - I feel like I have run a Marathon.I´m just hoping this was it and more weeks of peace are waiting. But one thing is sure - this is not for you to decide...

    Here in Sweden they usually don´t do surgery when you have Menières. I have heard of one person who, maybe, will get what I believe is Labyrinthectomy surgery, this fall. I have to ask her more about this. When I´ve asked my doctor about sacotomy-surgery he says that the results are not very good, the effect just stays for a short while.

    I´ve tried ti find pages in english about the SPC-flakes. There are some if you look for antisecretory factor. Most of the pages are about problems with your stomach. But maybe you can find more. There is one page, in swedish unfortunately, from the company who produces the flakes http://www.lantmannen.com/sv/Lantmannen-COM/Press--Media/Nyheter/Pressmeddelande/2287/
    Some of their pages are in english, so maybe you can find some facts.
    Susanna

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  4. hey david,
    just wanted to wish you the best with you gent injections. i had my first one almost a month ago. still trying to decide whether it has worked or not. i've had some good days but was hit pretty hard yesterday with dizziness and balance problems. i don't think my doctor will do another one so i'm hoping this one will do it.

    good luck with your injections. i really hope they work for you!
    ~nicki

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  5. David
    good luck with the gent shots. Don't worry about going bilateral, live for today,
    besides I now believe some highly specialized clinics now are able to profuse both ears without permanent disability. David I was wondering if you have heard anything about the Silverstein microwick treatment. It allows you to
    do your own gentimicin without any shots. I hear it is painless. I know some doctors on Atlanta that use the microwick treatment technique.
    Also David I often wonder why more famous people with meniers don't come
    forward and lobby congress for more research. We need a high profile
    spokesperson ( ex. Christin chenoweth the actress/singer)
    talk with you soon
    Joe from Atlanta

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  6. @thanks Susanna for the information about the oat-flakes. I hope you are feeling better soon.

    @Nicki,
    Thanks Nicki for the kind words, I'm not sure if tomorrow's shot will be the last or not,I'll just be glad when its over.

    @Joe
    thanks Joe, I'll have to look into the microwick procedure and you are right there definitely needs to someone with a high profile to lobby congress for research.


    thanks everybody
    David

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  7. Hi, i also have menieres. I am trying to find my best option. I had the shunt done about 5 years ago. I was great till now. I started having small dizziness episodes a couple months ago and now they are horrible. I was in the hospital for 3 days, come home try to do a little around the house and woke up spinning in the middle of night. It has been almost 2 weeks. The doctor gave me several surgery options, not sure what to do? thanks arlene

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  8. Hi Arlene,
    Before deciding I think I would get a second opinion from another doctor. Try to find out all your options before having surgery again
    good luck and stay in touch
    David

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  9. I want to congratulate you for getting better. I am sure that it will continue until you are healed totally. I want to thank you for sharing your great experience.

    hearing device Royal Oak MI

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  10. Hi everyone I am waiting for an appointment to see an ENT Specialist. I suffered all the dizziness and sickness about 15 years ago but never got medical help. although the episodes have ceased for a few years, i have been left with profound deafness in my left ear. I hope that a hearing aid will be availiable on the NHS which would improve my life greatly as people are getting frustrated with my inability to hear them. it has already cost me one job!! if anyone knows whether the prognosis will be good or bad, please let me know. Thanks everyone and good luck

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  11. Here's my threepennorth, I hope it helps
    I'm 58 and a Surgeon in the UK
    I've had bilateral Menieres for 16 years
    I started with severe vertigo and have gradually developed progressive bilateral hearing loss as the disease has followed it's course.
    I still get some vertigo but milder and possibly because I'm used to it I seem to work round it with the help of buccastem (under the tongue stemetil tablets)
    I have bilateral NHS hearing aids.
    I have tried;
    Betahistine
    Grommet and Meniett device
    Low salt diet and diuretics
    John of Ohio regime
    I cannot say that any of the above had any effect on the natural history of my disease
    I have avoided recourse to Surgery because it seems to me akin to smashing a watch because it is malfunctioning and we don't understand why or how it works.
    Menieres has been s*** but it hasn't stopped me from working as a Surgeon, I have of course had to make adjustments and put checks and balances in place but I still enjoy my life.
    I know that every sufferer has a different experience, but my advice is to keep positive and work through it as a life challenge, it doesn't kill you and it can make you stronger.

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  12. I appreciate you commenting it is always good to get insight from someone who is in the medical field and also has meniere's.
    stay in touch and let us know how things are going
    David

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  13. Hi All,
    First off, I appreciate what you ALL are going through. I just want to share a bit of what I have learned over the years.
    I have bilateral Meniere's, the onset following my first pregnancy in 1995. I had the sack decompression and shunt in the Right ear in 1998 and then following my second pregnancy, Meniere's developed in my Left ear. I have kept it at bay in the Left for 14 years with diet, exercise, meds and shear luck but now it is hitting with full force.
    The sack decompression surgery did work for me in this way....I still had attacks but they only lasted about 30 seconds as compared to 5 hours before surgery. In 2005, I had 2 gentamycin injections in the Right ear and that lasted me until now. My Left ear is now finally going, just since March, and is no longer responding to anything except steroids.
    It is keeping me from working and I fear disability. I too have dedicated my life to taking care of others but I am left wondering what the rest of my life will become. I am an avid runner and a 5K now nearly renders me incapacitated with pulsating ear bulging tinnitus. The vertigo is now coming more frequently.
    I too am unsure what the next step is...more surgery, keep taking steroids and risk osteoporosis or whatever else steroids can give you. I know I'm limited with it bilaterally.

    I was told that even though I knew from my pregnancy that I had it bilaterally, the docs could not prove it to be so since I had no hearing loss (in the left ear) and my symptoms resolved in that ear(left ear) following pregnancy. I resisted the Nerve Section in the Right ear (went for the decompression instead) just because I knew that it would be the wrong decision for bilateral Meniere's.
    I've made it 16 years (probably more like 24 as that was when I first had tinnitus) by being as conservative as possible and I had a great doctor who let me figure out what worked and what didn't.

    Keep positive. I too know others who suffer with this and EVERYONE seems to be different in their response to treatments.

    I am going to a Neurotologist the end of the month for yet another opinion before I do anything dramatic.

    I have a hearing aide for the Right ear but have had bad luck due to hyperacusis and ear canal edema from anything that is put into my ear canal.

    Who out there experiences PULSATILE tinnitus with this? I find this more disturbing than anything.

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  14. Hi,
    I hadn't read about pulsatile tinnitus before but it is so strange because I have been having problems with tinnitus for the past 2 weeks and the sound is more of a beating than the usual ringing sound.
    I will definitely do some research about it
    thanks for comment and stay in touch
    David

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  15. I've had pulsatile tinnitus in the past, and it's awful. Lately, it's been straightforward ringing or roaring, but for a long time the rhythm of the pulse would drive me nuts, particularly when I was trying to get to sleep. I took valium when that happened, and it helped somewhat.

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  16. The tinnitus I presently have is a loud roaring whishing noise...especially bothersome in that what I hear is like the blood rushing in & out thru the heart valve.
    Harder to ignore than some of the tinnitus I experience.
    It's 24/7..the only change is in it's volume. Nothing helps it.
    *Fun times.*

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  17. I have was given options on hearing aids that could possibly help me one is called a cross system and the other is called an FM sterio system. I went with the cross system it helps me most of the time except for when I am in a noisy situation. You can look up both systems on the internet. BUT I only have meniere's in my left ear, so far the right one works fine.

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  18. I have bilateral Meniere's Disease and the latest medication treatment of steroids, Betahistine and Clonazepam seem to be controlling most of my vertigo and tinnitus symptoms. I can hear sounds but I can only understand speach in a quiet setting in which only one person is speaking directly to me. I have tried the top of the line Phonek and Seimens hearing aides. Has anyone had any more success with any other brand hearing aid as it pertains to understanding speech?

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  19. Im trying hard to help my Mother who suffers with so much but this Menieres Disease was a new one for me. Been trying to get all the info I can on it. She swears that her family doctor told her that she could NEVER use hearing aids, but I read differently. I told her that due to her NOT hearing very well she is forever getting wrong information.My question is what type hearing aid works best for most? She has had zero treatments really with her disease. She has it pretty bad, zero hearing now in one ear but every other day is very sick with her dizziness and swimmy headed feeling as she describes to me. What are the injections and what type hearing aid is best for this? Somebody please help me to help my Mother. Thanks so much and God bless you all. Terri

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    Replies
    1. Terri, has your mother seen an ear/nose/throat specialist, or only her family doctor (I assume that means general practitioner or internist)? GPs in general don't know a whole lot about Meniere's.

      I have not had much luck with hearing aids for my affected ear, and have pretty much given up. They are too expensive to experiment with different types, and the one I did try was not only not helpful, it was sometimes downright painful because of the types of sound it would amplify.

      Try calling an ENT specialist or audiologist and asking if they know of a hearing aid that works well for Meniere's patients. I've read comments from others on this blog who say a hearing aid helps... I'm just not one of them.

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  20. Hi to all with Meniere's Disease I suffered for 14 years.Ongoing lightheaded, dizzyness and severse virtigo attacks.nothing works for me, so my ENT MD.specialist suggested for me to have surgery.So then I had a Endolymphatic Sac Decompression (a shunt). That last me about 5 years not having an attack.After that I'm starting having a small attack, until one day I had another severse Vertigo that lasted weeks.I could not go to work for almost two months.I went back to work but it was really uncomportable.everyday of my life feeling terrible don't know what to do.I decide to get second opinion from another ENT Specialist.That doctor suggest that I need to have the Labyrinthectomy surgery for not having a severce vertigo.The recovery was really defficult, I fell like I just want to die! but as the weeks and months go by, I felt alot better.It has been more than five months since I had surgery but everyday I feel like I am drunk.Have not back to work yet, can't drive,felling lightheaded,pressure in my head and loud roaring and ringing in my left ear.Don't know what to do but, I have to live with it.Believe me I know how it feels to have Menier's.Be strong and hung on there! God Bless

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  21. Anonymous, don't lose heart. It takes quite awhile to recover from the labyrinthectomy, in my experience. I'm not sure if doctors don't realize how long the full recovery is, or if they think no one would go through with the surgery if they knew how long it would take them to get back in the same country as "normal." Like everything else to do with MD, I suspect the recovery is different for everyone, but I'm sure it isn't quick for anyone.

    For me, it's been nearly two years to get back to where I feel pretty okay, and even now I'm subject to sudden bouts of dizziness and what feels like the beginning of a vertigo attack that never develops. I will still feel woozy and disoriented, and my head feels like it's under high pressure, but at least I don't have full-fledged attacks.

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  22. Thanks for the advice,it sure makes me fell a lot better knowing that I am not alone.It sure hard living your daily life feeling woozy everyday.Others think I am just making it up so that I don't have to go back to work right away.That makes me feel worst even more, what I am feeling now.If they could only know what it feels to have this kind of symtoms. Have any of you ever had a constant headache after the labyrinhectomy? You are absolutely right, I have not had a severce attack since then but,I feel woozy and disoriented.May God Bless everyone and hope we all get better and have a normal life with this symtoms :)

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    1. Anonymous, yes! I have had a lot more headaches since the labyrinthectomy. In fact, I had a spell of migraines earlier this year that ended in an attack of aphasia (I couldn't speak coherently for maybe 20 minutes). I think headaches and migraines are closely related to the problems that go with Meniere's, and surgery on that part of the head/brain probably has many side effects we don't know about.

      For what it's worth, I'm not having as many headaches now.

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  23. hello peggy
    you are so right about doctors being a bit clueless on recovery times for these major ops. i had the sac decompression and it took a good for months for my hearing to come back, but on doctors advice it should have come back in 2 weeks.
    regards
    ali

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    Replies
    1. To be fair to the doctors, I don't think predicting the outcome of anything that has to do with Meniere's is a precise science. They make the best estimates they can, based on what they have seen, but every Meniere's case is different, and every Meniere's patient is different. It is frustrating for us, as patients, but I imagine it's also pretty frustrating for doctors who are trying to figure it out to be able to help people.

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