I had another doctor’s appointment the other day. I didn’t have any great expectations going into it and I wasn't disappointed. I told the doctor that my balance was still giving me problems and I was still having meniere’s attacks. He didn't seem surprised. I could have requested another gent injections but I really have to wonder how effective it would be at this point in time. All total I have had 6 of them in 2 years. They seemed to work after the first series of 4, at least for a little while, But now I don’t know if they are going to make a difference at all. In fact I think that the last 2 shots if anything has reduced my hearing in my left hear. It is hard to say because I didn’t have much hearing in that ear to begin with. What do I do now? I don’t know but one thing is for sure with Meniere’s disease you have to understand all your options of treatments and what could be the consequences.
If you have had meniere’s for a while then you probably have done quite a bit of soul searching as to what your treatment options are. Have you cut back on salt, has it helped? It never worked for me but it might for you. What about cutting back on caffeine or alcohol? Cutting back on these things is usually recommended when you are first diagnosed with Meniere’s disease. It may help some folks but I haven't heard about it.
And what about treatments like gent injections or steroid injections? Or surgeries that may destroy all your hearing and after all that it still may not help. Take your time and deliberate slowly because you will be the one to live with the results, good or bad. Advice from your family and friends is nice and they mean well but you are the one who has to make the decisions.
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Sunday, August 15, 2010
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9 comments:
I have Meniere's too. It started out slowly just in my right ear, at first I always thought the attacks were food poisoning, or some bug especially since the attacks were so far apart.
Then one night I had vertigo for over 8 hours, my fiance at the time (now my husband) took me to the emergency room because I couldn't stop throwing up. The ER doctor there was the first doctor to mention Meniere's, (or he thought I could have the calcium rocks some people get)
I went to an ENT, he suggested tubes in my ears, so I got those, and I went in remission for a couple of years. I know now that was probably just normal remission.
This past year it started in my left ear too. I had vertigo so often I was completely disabled. My ENT said he didn't know what else to do so I looked up specialist in this line and found a great doctor at Duke. He's an Otolaryngologist. They did some very intensive test to see if I really had Meniere's of if it was something else. It was amazing. They put me in the gyro-chair, the same chair that spins that they use to train astronauts. I almost threw up. But they have a mask on you and it measures what your eyes are doing. Mine jumped around everywhere. I tell you it was wild.
Late Halloween night I started having an attack, and it just didn't stop. My hearing was down for 3 months, I would have vertigo nearly every day. My hearing started fluctuating again, but I was still having vertigo at least once a week, often 4-5 times a week.
So my doctor recommended surgery. They still call it Endolymphatic shunt surgery but they don't put a shunt in. He drilled a hole in my skull right under the back of my ear where the Endolymphatic sac is, and he shaved part of my temporal bone off. This gives the sacs more room when they fill with fluid so they won't end up mixing fluids. I had the surgery on April 28th. I've only had 2 real vertigo attacks since then. I will have all the signs one is coming and then it just doesn't.
Unfortunately, I have this in both ears and he only operated on one. This week both of my ears are going crazy, and I've had a bad case of vertigo. I'm almost sure it's because of the left ear though.
This surgery has a very low chance of hearing loss. I have pretty bad hearing in my right ear anyway. But the vertigo was so bad, I wanted to die. I would accept going deaf, if he could just stop the vertigo! Lots of people live without hearing, but the vertigo was impossible.
My doctor also told me I would never go completely deaf, he would put in a cochlear implant, but wants to wait as long as we can on that because they keep improving the technology.
I do feel pretty yucky this week, but it is the first time since April. I sure hope it gets better soon.
Wendy mentions the tubes (sorry they weren't successful for you) and that's something I'm interested in. I've heard that there's a good rate of success, and that it's an easy and non-destructive procedure to put one in. I wonder why this isn't tried almost automatically for most Meniere's patients?
@Wendy
8 hours of vertigo must have been pure hell! Thankfully it sounds like you have found a doctor that you can work with. That is interesting about drilling a hole in your skull and then using tubes instead of a shunt. I don’t think that I have heard about that before but if it works that’s great.
How is your balance doing? Do you feel less steady on your feet then you did before? I was wondering how this type of surgery affects balance.
Thanks for the comment and stay in touch and let us know how your recovery is going.
Thanks
David
@Jeff,
You are right, it is interesting about the tubes and it definitely isn’t something that seems to be mentioned much with meniere’s disease.
David
I have come to the point when my doctor says there`s nothing more to do. I´ve tried less salt, Betaserc, SPC-flakes, tubes in my eardrum, cortison (steroid?)-injections, the Meniette, Steroid-pills, anti-depression pills, chiropractor, acupuncture, psykotherapy....
Everything I´ve tried has helped one day, a week, a month, or otherwise I was feeling better out of any other reason.
I´ve come to a point when I´ve decided not to fight against Mr Menière any more. This is how my life is right now and I´m doing my best to have a good life and I realize there is nothing else I can do at the moment. But I believe there will be new treatments in the future.
This year I´ve joined a group of people, all with Menière. Meeting others with the same problems makes me feel better. Also meeting you here is a good thing for me!
Susanna
Hi Susanna,
I understand the way you feel completely but like you said there will be new treatments in the future. Who knows they might even find a cure.
good luck and stay in touch
David
David:
Speaking of New treatments, I recently had a friend attend a large
meniers conference in Miami and he said that they were talking vert extensively about the real possibility of hearing and balance cell
regeneration in the next 10 years. According to the researcher from university of Washington and Virginia they are now able to
do it in rats the first mammal. In terms of
humans they indicated they can do it in culture but need funding from phara
companies to gain money and access to equipment.
I looked it up under cell regeneration on Internet and found it under u of Washington and Virginia. Very very interesting.
David.:
he also indicated according to the
conference there is a new diuretic especially designed for mm and targets excess endolymphtic fluid in ear. Before all diuretics effected the kidneys and took water out of whole body and very
little from ear. David they have had excellent results in clinical trials and could be available to us in a year or two. Mm is finally getting
attention in the research community and when people from all over the world things will happen. Remember people never thought
polio would be cured. My grandmother died
from it of she was born 10 years later all
she would have needed was a shot.
Ryan
Hi Ryan,
thanks for the encouraging info. Hopefully these things will be helpful.
David
hey david,
i think you make a very good point. you have to be your own advocate. do your research and do it thoroughly. do NOT ever rush into anything destructive because someone tells you to. i am constantly researching all my alternatives. it was only after 13 years of having this that i finally reached the point where I felt i had no choice but to go with the gent injections. thankfully, i have a doctor who agrees with my philosophy.
just had my second gent yesterday. we'll see how it goes.
Hi Nicki,
It took me a while before I learned to do my own research and ask questions. I'm glad that i did.
Hopefully the second gent shot will be the last one for you, I'll keep my fingers crossed!
Let me know how it goes.
David
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