Why live with this disease for so long without getting a more permanent fix?

You are doing what you need to do. You are making the best decision you have, with the best information you have, with the best medical care you can get. The choice is really yours. You can't know the future, no one can. You can't know what your other ear will do, no one can. You are making the same choice I made, for exactly the same reasons. I was going down 2-4 times per week, and life as I knew it, was disappearing. I made a choice to "take it back."

If you live to be 150, your other ear will develop MM, you will have prostate cancer, Alzhiemers and Carpal Tunnel...yup. We are not designed to be 150. I had Vertigo. I got rid of it. I am bi-lateral. I will go down with it. I am also dying of old age, pollution, cancer and all of the other things we frail humans get. One of them will get me first. Or, a car crossing the street, or an airplane. Take your best shot. I did. I have no regrets.

The VNS surgery will give you a couple really crappy days. Then it will improve by day. Walk....walk and walk some more. Treadmill's are your friend. I came back to 90% of normal with the vertigo totally gone from my life.

I decided not to go, the night before VNS surgery. Course, I also went down puking my guts out with vertigo. So, I went.

It is your choice, it is your life. I do not regret it for a moment. I took my life back. My ENT told me he was really really sorry that we missed the other ear with MM. I told him...."don't sweat it, it's been a good run. I don't regret it for a moment. Now, let's deal with the other ear."

Good luck to you. But go in with the concept....."no regrets"

This is for your wife.... You are not my hero. She is.

Companionship

I spin I spin I spin around
So often just, to fall, to the ground
I spin I spin I spin around
I lay painfully, quietly, on the ground

I spin violently, quietly, without motion
The same as I’m deaf with ears wide open
I spin and spin yet do not move far
I spin regardless of where we are

I spin I spin the lights to bright
I need the dark, to hide my fright
Leave me alone, leave me to be
Leave me to suffer, quietly

When I am done, in fog I will live
I know you wish, you had more to give
The fog will lift, to prove it is kind
Til then, til then, it will blur my mind

It steals of my pride, my dignity
It erodes my will, tries to crush me
This thing in my head it does not kill
Yet some days I really, hope, it will

That you want to help I know
On your face your love, it does show
This is a curse, it’s mine to endure
Why it torments me, I am not sure

So, be there, be there, be there for me
I will rejoin you when, it sets me free
Til then, Til then, be there for me
You’re all I have, you break me free

I may not care, without you there
I may not care, how well I fare
I may submit to it’s will
That day I’m there, for it to kill


2008

 

Many are misdiagnosed and surgery is a sure thing on what amounts to as a guess for a diagnosis. How many have gone through destructive procedures and surgeries for meniere's when they don't really have meniere's in the first place? My guess is that it is a significant number. All other options should be explored before anything permanent is done. Time is needed to do that. And most of that searching must be done on a personal level.

 

there is no return to normal. It is not going to be, not going to happen. We adapt and fight and push.

Explore every option, study every word before going under the knife for a procedure that is irreversible.

 

Why live this long without a perm fix? 28 years I have had this disease and still Doctors don't fully understand or know the causes. They are just guessing what "Might" help and we get to be the Guniea pigs.
I am Bi lateral, also have allergies to all antibotics. To have an surgery, that might help or might not is not an option.
There are a number of reasons why I don't just jump in with both feet and say what the heck... lets just have the Doc take out the inner ear. One it is perm, Second,, it doesn't always help, third if you are known bi lateral it is not the best move to make, fourth.. my antibotic allergy. To many big risks for me.

But if it works for you.. that is fine. It just won't work for me and many others.

 

Me and Doctors don't mix.

Ive had a hard time getting doctors to diagnose me properly. In the end, I just worked it out for myself...after 10 years!!

Our hospitals over this side of the pond ( little Britain ) are so badly run by the goverment, that I keep well away from them.

Bluesky

 

I respectfully disagree that there is no return to normal with surgery. For me, the laby was it. Burd is right that if you don't have mm surgery won't help, but my neurotologist diagnosed me, that is what they do. If you are with a good doctor I wouldn't be frightened about the diagnosis. There is a lot of fear on this forum about surgery. In my opinion, too much. Some is a good precaution, but the laby and vns are approx. 95% successful, so there is much to hope about. Do your homework, see a good doctor, make an informed decision, and don't be afraid.
I am a living example. Lisa

 

I have a good Doc, both of us are knowledgeable about MM. Not scared of having surgery but really do have other issues and being Bi lateral limits some things that can be tried.
I have personally met 2 people where the Laby did not work... then ended up being bi lateral and things got even worse. So things don't always get better for everyone.
Its not fear for me, it is knowledge in my health issues, knowing what can and can't be safely done.

I would not recommend to any one to go out and have Laby in both ears, nor would I tell people to go out and get surgery because one person thinks everyone is afraid. Not Koshser.
IT is up to each person and their Doc, to what they feel will work them best for them.

There still is no cure for MM.

 

I think this is an excellent question- one that I have wondered myself. I have had serious Menieres symtoms for over 2 years ,and I am ready to have the laby (ok I THINK I am ready). People that have heart blockages that are severe enough to cause chest pain and shortness of breath dont seem to have a problem opting for a surgical answer. I am at the point of reasoning, if a vertigo attack could come out of the blue again (and it usually does recurr) or have a drop attack, both while driving, why not FIX it, IF possible. I know VNS and Laby are both serious, but so are driving everyday with the possibility of having a serious, if not deadly accident. I respect however one chooses to deal with Menieres, but for myself, I am leaning towards have surgery!!!!!!! (Laby)
Good luck with your VNS> Will be thinking of you. Please keep us abreast on how it goes. You are ready for this surgery, it seems. That means alot in how you will do post op,etc...
Paige from TN---

 

Why go through this? Simple...sometimes we have ONLY one other choice...give up. Those of us who are bi don't have the luxury of VNS. However, having said that, I will try to explain my reasoning on the negative side. I will not consider any permanent "solution" until I have exhausted EVERYTHING else. A scalpel isn't always the answer and VNS isn't a "solution/cure". It is, at best, a semi-permanent treatment with the hope that you will never need any further treatment. Does this mean YOU shouldn't do it? NO! You have some very compelling reasons for doing this. You'll be in my prayers. Good luck and keep us posted.

 

Funny you should ask, I was just explaining this to another member this morning.

For one reason, there weren't a lot of options 21 years ago when I was diagnosed. The only one that we were aware of was to stop the vertio attacks by removing the nerve, but that would take away the hearing completely.

Don't get me wrong, I would have gladly traded my hearing to stop the vertigo attacks, but by the time I was diagnosed with it in both ears, I had a 4 month old baby and was a single parent.

Even though I thought about it a lot *during* severe vertigo attacks, once the spinning stopped, all I could think of was what would happen to my baby if I never woke up from the surgery, or since I would have to have it done to both ears, I would never get to hear his first words, etc. Dont get me wrong, it was BAD..I once had a rotary vertigo attack that lasted 17 hours straight.

Some people just have a fear of surgery and being put to sleep, especially when they tell you they have to open your skull on both sides.

 

Bramsey, that's a moving poem.

May I post it on my blog, crediting you with authorship? I believe my readers would see another side of this horrific condition after reading what you wrote.

And heavens, sure some people get a permanent fix from surgery but some don't, even people who have been carefully and conscientiously diagnosed by a neurotologist. There is no going back after surgical destruction and if one should become bilateral, well...

 

Hi Sharin, I would never say anyone should run out and have surgery and not do their homework.
But I do stick with saying laby has been my cure...........I feel cured.
I have a very low grade tinnitus that I don't notice, I know I'm lucky there. I am deaf, but I was before the surgery. In every other way I don't feel that I have MM. Technically I know I do, just as I have ulcerative colitis still and no colon.
But just as removing the colon got rid of my internal bleeding and returned me to health, so did the laby. I have boundless energy now. Before I had trouble functioning.
But both surgeries were miracles for me in the truest sense. I "Hear" better now because I lost so much noise in my bad ear after the laby. So in that sense, you can almost say it improved my hearing.
I would never never talk anyone into surgery or tell them that it is what they should do. For so many good reasons it is a personal decision. Yes, I was lucky to to be unilateral- they won't do 2 labys on people that are bilateral, only in extreme circumstances.
But I educated myself and lived with MM for a decade. I tried every other step I could think of. I wish I had had the laby sooner.
For me, I will argue to the death that it was a cure, for me. I just want to share my great luck with people who feel desperate, like I did. I have true MM and surgery was my answer.
Lisa

 

jaymax,
By now you have had your surgery, and I hope verything has gone well. Please keep us posted on your progress and how you are feeling. My Dr believes my Menieres could have been result of several things, a bike accident a year ago, and a viral ear infection. After all the tests and having the tube surgery, nothing has helped, in fact it has gone down hill. My Dr wants me consider VNS and after the last 2 1/2 months, particularly after the last 2 weeks I am serously considering it. I have been keeping a journal so that at my next appointment when the option of surgery comes up, I can look back and see just how miserable my days have become. Today I wrote in big letters..........SURGERY. Every day I have had at least one vertigo attack but most days I have had 2-3. I also have a job in which if I don't do something this disease could creat problems. I am usually so active but can't do anything right now, it's like my life has come to a halt, and I want to take it back. Good luck, and God Bless.

 

Hope everything stops bouncing or has stopped bouncing by now Jaymax! PLEASE get back with us on your status. I think it would help quite a few people here see a progress report when you're up to it.

 

Best wishes. Jaymax. Lisa

 

Hi Guys

Yes a VNS when succesful 98% of patients who undergo this surgery are winners. You still have the disease but without the symptoms.

The only symptoms left are tinnitus and some hearing loss The VNS preserves the hearing. You have no need for meds or any diet restrictions.

None of the othetr surgeries can guarantee that kind of success. I wanted to be CURED. In Feb. 2002 I had the VNS. The night before I had my last dizzy spell
and vertigo session.

My doctors in New York all told me I was crazy, and Dr. Brackman from the House Ear Clinic was crazy to have a VNS. Later they apologized.


There is on a 2% risk to this surgery. Even if I go bilateral I would have no regrets. Life is Good. Joan

 

That is wonderful to hear, Joan. Lisa

 

First off,let me start off by saying this...if you have the vns or the laby and end up going bilateral does NOT nessasarily mean you will end up in a wheelchair or not able to function.I don't think I have heard of anyone in a wheelchair yet from menieres.Let's say this.....what if you have menieres in one ear and that gets destroyed so bad that you lose all balance and function in that ear and years later you become bi.You are still struggling basically like you had the vns in the 1st ear if you lost all conectivity with that ear.In other words,if you have the vns or your first ear is so destroyed and then you go bi..the outcome is the same,to me anyway.
With that being said...I had the vns on my right ear 1n 1998 and was symptom free for 6 years.Then I started getting dizzy here and there with some pretty bad dizzies every so often(NOT THE SPINNING VERTIGO).It is safe to say that I am now bilateral and probably have been for a good 6 years now.Are days rough sometimes?Sure they are,but I function,I go out,I drive,I have alot of great days still.I do not regret having the vns because it gave me back my life for a long time and my ear that had the vns was so bad that being bi now..I would be in the same boat..vns or not.I can't have anything else done for the 2nd ear,but I do things to re train my brain every day and to keep things going.One day at a time is what I say.I think the decision is based on how bad that person is suffering.I had an infant and was crawling to his crib daily.My husband missed so much work because of being called home because I needed help.I was spinning 8-10 times a week.That I could not live with.

 

Thanks for this testimony Luckyswife. I lost the 8th nerve on one side 12 years ago. I have often wondered if the hydrops in the good ear turns into classic MM with vestibular problems what my life would be like.

 

Not that everyone is the same,but this is my story.Again,I don't think I have heard of anyone wheelchair bound or bed ridden from mm...not yet anyway.