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

Below is my original post that was under the subject "I need to understand". I changed the heading because I don't think that I worded things right. What I wanted to know is why would anyone want to live with this disease so long without having a more permanent solution. I understand the fear that having a major surgery like a VNS or laby entails, especially the part about becoming Bilateral. However, if you have lived with this for more than ten years and have not had any problem with your other ear, than why not get the surgery and live a more normal life? I think that logic would dictate that the MM would not neccesarily move to the other ear after such a long time. I absolutely applaud everyone that has lived with this for so long, you are an inspiration to us all, so please don't think that I am taking away from anyone that doesn't want to have the more drastic surgeries. I have lived with this for about a year and half and I just want to do whatever it takes to have a normal life back again.


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I'm pretty new to this disease, I first started having symptoms in November of 07 and was officially Dx in January 08. I had shunt surgery in July 08 and surprise, surprise, it didn't work. As a matter of fact, I got worse. Not only was I still having vertigo attacks 2-3 times a week, my balance was worse than ever, so that even when I was haing a "good day" I stumble around like I'm drunk. My doc does not do the Gent treatments and from what I have read on this site, it is not a very successful treatment. I say this because if you have to have multiple treatments then in my book it's not successful. So in order to "fix" me and allow me to stay in the service (fifteen year Navy veteran) hopefully, I am opting to have the VNS on my affected ear, in two weeks I go back under the knife. Wish me luck.

What I don't understand is why anyone would not try anything they could to get permanent relief from this disease? I have read stories of people suffering with this for 20+ years, I have had this for just over a year and I am so sick of not being able to do anything. I have been using a cane to get around since my last surgery. I can't exercise anymore, I used to run 3-4 miles every other day, and lift wieghts, and other cardio activities. But because my balance system is so damaged I am no longer able to do that anymore. Even doing situps and pushups make me sick to my stomach. And on top of all of this I can no longer drive because the motion makes me sick and I can't turn my head in a fast enough manner to react to anything. That makes it difficult to surprise my wife with gifts, because she drives me everywhere. Yesterday was our fifteenth anniversary, and I am greatful everyday that I have such a wonderful and understanding wife. She has been great throughout all of this.

So back to my question, why not take the drastic measure and be done with the worst of the Meniere's symptoms? Why live with it for so many years? I want to be back to a normal life.

 

Re: I need to understand

Easy answer. I had VNS surgery on my rt side 3 years ago. It was go off on disability, or have something done. Something. I chose VNS because I still had some hearing in my rt ear. So, I had it done, the week after was hell. I got a treadmill and taught my body to work with one balance center. I have a bit of permanent dizziness which is a heck of a lot better than the pure Vertigo I used to have. 3-8 hrs of laying on the floor, puking. 2-4 times per week. Pure misery as you have noted.

It was very successful as far as I am concerned. Stopped the Vertigo in its tracks.

A year ago, I became bi-lateral. Meaning my other side is going. Now, the rt side I had done was not dysfunctional totally. Vertigo is not caused by one side being totally dead. If that were the case, VNS or the other solutions would not be needed. The Vertigo is typically a result of it working, just not very well. But, when it worked my body had it's normal set of systems. So, as long as it was not creating a mess by sending "disinformation" to my brain...I was pretty normal. When it decided to play, just not well...then Vertigo. If it would have just stopped, the result would have been the same as VNS....but when my good side said "go left" and my bad side said "go right" well, to the ground I would go.

Now, I don't even have that side, part time, to count on. So, I'm down to one. And, it's going. And when it goes I will have a condition called osycillopsia. And you won't find it referred to here much. It's a worst case scenario that we don't typically write about. It freaks people out.

So, VNS was a perfect solution for me, until I became Bi. And, yes, they have probably done all of the tests on your "good" ear to ensure that you are not bi. They typically will not do a surgical or chemical killing of the bad side if the good side has any indication that it will follow the same path. Realistically I know I first realized I was bi, 6 years ago. 3 years before the surgery. So, although the good ear was already headed down that path, it passed all of the tests. Partially because it's activity was masked by the "bad" ear.....so, I gambled and I lost, so to speak.

So, it's a perfect solution as far as I am concerned. Unless of course you lose the other side.
Like me.

 

Re: I need to understand

Welcome to the group. Sorry to read that the beast has had you continuously in its grip. In answer to your question I believe it all comes down to personal choice and the fact that there are no guarantees that surgery will give a total cure.

For me I took control of my situation by reading up on every possible reason for my symptoms. Before doing anything unchangeable like surgery I wanted to make 100% certain, or as close to it as I could, what was causing my symptoms. By trying all non-invasive treatments first I discovered my symptoms were caused by allergy and migraine variant- two easily treatable conditions.

It took four years of my life. In the process I had to desensitize myself from the visual stew that was overloading my system. Vestibular Retraining Therapy helped with that along with my determination to keep pushing myself and my boundaries to the absolute limit. I can now walk without my walking stick (I refused to use a cane), ride my bike, drive and do just about everything I could do before this hit me. Even with treatment I still have permanent damage. I've come to terms with it and have found ways to work around it. I refuse to let it stop me from doing what I want to do.

I wish you the best of luck and hope that you will find relief from your symptoms with the treatments you have chosen.

 

Re: I need to understand

Bramsey,

Is that the bouncing of the eyes?
Aryn

 

Re: I need to understand

Some of us lost the other side a long time ago so we don't have a spare already. Another thing is a vns is a serious 'brain' surgery. These things have become routine in recent years but used to be very risky not just to the ear. There is still risk involved and some people have great success with less permanent measures so there is a tendency to try the less risky and permanent first.

 

Re: I need to understand

That is what i was going to say... the chance of becoming bilateral. It has taken me 10 years to reach the decision to start destructive procedures because of that risk.

 

Re: I need to understand

I'm bilateral. My original ear is the only one with any balance function left. There was a time, while I was still unilateral, that I begged my doctor to do a destructive procedure on that ear. He refused. I was so young that he didn't want to take the risk of my becomming bilateral in the future. And I am SO thankful I listened to him. If I'd had a VNS on that ear, there's a good chance I'd be in a wheelchair today - at the very least I'd be stumbling around with a walker.

I chose to do the high dose strep (chemical laby) on my second ear. This is when I learned that vestibular rehab when you're bilateral - sucks.

I still toy with the idea of doing a surgical laby instead of repeating the chem laby. But then I look at the problems that Danny has, as well as the problems several people here had with CSF leaks and migraines after their surgeries...and a friend of mine undergoing a different surgery, had her facial nerve severed accidentally. (A possible complication with a laby or VNS.)

The surgery can certainly be a life-saver for some, but it also carries a considerable risk. It's a personal decision that many of us have to face.

 

Re: I need to understand

It is too hard to make that decission because of the chance of being bilateral.....I read once you get more chance of becomeing bilateral after a procedure and that scared the hell out of me, I had a sac decompression and after that I started feeling my good ear kinda weird and I woul never try the knife on my ear EVER.

 

Re: I need to understand

When I first experienced these wonderful symptoms, I was desperate to "cure" MM. Being so sick every day was getting old in a hurry. I researched VNS, Labys, shunts, etc and wanted to get something done immediately...

My dear ENT has known me for many years and cautioned me to take some time. He said it would get better and luckily, it did. Also, all of you on this forum helped to calm me down. Not rush into anything. Talked about the serious nature of destructive surgeries or chemicals. During the dizzy time, I did go to Seattle to visit the OTO who seemed to consider gent injections but also wanted to wait six weeks to see me again.

So yes, I felt like you do now, jaemax. But there are no guarantees that a procedure will work or that one won't go Bi. Since I have tinnitus in both ears, I suspect the worse for me. I wish you the best and think it will help you very much. Being here will give you all you need to make an informed decision and seems you made it. Good Luck! and please keep us posted on your recovery. VK

 

Re: I need to understand

Thanks to everyone for your post.

When I was first Dx with the wonderful illness, I did a lot of research about it, I found this site and others too but I liked this site because everyone had such great information and advice.

In November when my doctor recommended doing the VNS on me, he told me all of the things that could happen during and after the surgery. I told him that I wanted to think about having the surgery because for obvious reasons it scared the crap out of me and still does. I make jokes to my co-workers on base that I just want to come out of the surgery and not be a drooling idiot, because I can handle the idiot part, its the carrying around of a towel for the drool that would suck. HaHa. It took me over two months to come to the decision that having the surgery would be the best option for me, my family and my career. I am very concerned of the possibility of going Bi in the future, I guess if I do than I will just have to live with it. I am hoping for the best and that I don't go Bilateral and I can be done with the bad symptoms. So far my experience with this disease has not been good, I seem to be in that small percentage of people that treatments don't work on, so I hope in this case my luck will turn around.

Anyway, thanks for the advice and the support, I will be going in for surgery on the 4th and I will post my progress when I am well enough to do so.

 

Re: I need to understand

Too funny! I'm not sure I've ever seen 'drooling idiot' listed as a possible complication on the consent form.

Good luck with your surgery! Do you have a date scheduled yet?

 

Re: I need to understand

I had the laby in Aug. of 07 and to date it feels like a total cure. I can only speak for myself, but while I really struggled with it for a decade, my life was mostly normal and I could handle it, with some bad spells here and there. It wasn't fun, but I felt I could function. Then I reached a point where I felt bad pretty much every day. That's when I opted for surgery.
In some ways yes, I'm very sorry I waited. It has been like a miracle- I now feel awesome and have full energy, no bad side effects. But it's pretty big surgery. For me there was also a lot of fear generated about the surgery, much which I feel was unfounded.
The VNS has the possible side effect of migraines down the road, something you need to be aware of and ask the doc. Make sure you are with a TOP surgeon to do this if you opt for it.
You CAN have gent and the multiple shot therapy works well to spare your hearing- having more than one does not indicate that it does not work well, it is designed that way on purpose. I would look at it carefully, as well as the videos by Dr. Rauch on our database that quickly but very efficiently discuss gent, the laby, the vns, and their success rates- and possibility of migraine with vns. About 2 minutes each and simple to download. Dr. Rauch is from Harvard.
Good luck! Lisa

 

Re: I need to understand

For me I am choosing to have this surgery because I can't do my job anymore. I am in the Navy and being on a ship is what I do. Even though I only have two years left being on a ship I want to be able to complete that time and then rotate to shore duty and retire. But the problem that I have is that if I have this surgery and still have the imbalance that it seems that most people have with this then my Naval career is pretty much over. I am hoping that I have the same success that you have enjoyed since getting your surgery.

 

Re: I need to understand

Don't despair - that imbalance is usually helped with therapy after surgery.

 

Re: I need to understand

I had another surgery which destroyed my balance nerve. I was 49 years old at the time. Now I have very good balance. Within a week I went from walker to cane, then in a nother week or two no cane. I was back to work part time with a long commute in 7 weeks, full time in 12 weeks. I continued to improve for a long time. I do not think you could tell I have any balance deficit at all unless you saw me walk in the dark. Now I can ride a bicycle with no hands, climb ladders, do anything I could do before. There is something about this kind of surgery that is fatiguing so don't rush yourself too fast but just keep challenging your balance every day. You will be back to normal soon assuming you don't do a lot of high wire stuff. What kind of work do you do on the ship? Is it something where a slight balance deficit would be dangerous to you or someone else?

 

Re: I need to understand

June,
You mention having difficulty walking in the dark, who about driving in the dark. I have not been able to drive since I had my shunt surgery and I have problems in the dark as well, seems I am very visually oriented since all of this started.
I havne't been on a ship since shortly after being Dx with MM but normally I would be managing a division that deals with long range sensors and weapons systems. Being on a ship in the first place is dangerous enough but when the ship is underway it moves a lot. I don't know how having any imbalance and being on a ship is good. My experience before being transferred off because of MM was not very good, for a three week period I spent pretty much all my time in my rack or in the bathroom and could not function. On the plus side I lost a bunch of weight. I'm not sure if I will be able to go back to a ship if my balance system doesn't get better after surgery.

 

Re: I need to understand

Eyes are a huge part of balance. The brain takes signals from the balance nerves and from the eyes (and some from the hands and feet) and puts it together to interpret where we are regarding gravity. The whole thing is worked out in our brain as infants. When something messes up a balance nerve then the brain is taking that data and putting it together with the data from the eyes and giving a does not compute signal.
This happens in the extreme immediately after surgery. Nystagmus which is an involuntary darting back and forth of the eyes is usually present. The brain is trying to make sense of all data from the balance nerve suddenly missing. For me this was gone by the time I was moved from the recovery room to a regular room. On the ride home from the hospital the horizon bounced around but that was gone after a few car rides. Walking in the dark was hard especially at first because with one balance nerve gone - at least in an adult - the brain becomes more dependent on the signals from the eyes. Over years, I have gotten past this for the most part.

I never had any trouble driving in the dark, however the old company doctor advised me to work part time at first just so my brain that was already dealing with so much didn't also have to deal with the added effort of commuting in the dark. I don't think dark would have mattered but I was a lot tired than I expected to be when I went back to work at first. I don't think driving in the dark will be a problem for you long term. I would expect, based on my experience that you will handle the ships motion ok too - in time. Thats what I don't know about how long it will take. I work a desk job and the fact that my balance wasn't perfect for 6 months didn't matter at all. I elected not to wear bifocals because the progressive lens that kind of blurr certain areas was annoying to me. I blamed it on my balance problems. It may be that I just cut myself some slack because I didn't want to bother to adjust.

I suspect your balance will get better after surgery if you challenge it daily. I did it mostly by walking on uneven surfaces (country roads). I hear about VRT here which sounds like it might be useful but I have never done it. My doubt is not whether you will get your balance back but whether it will meet your time table. I think your balance will be serviceable on land in 8 weeks, not sure if it will be good enough for a ship that soon. I would ask the dr and maybe see if you could talk to a vestibular rehab therapist about that.

There are several people on the board who have had this procedure. If you make a thread name that says something like 'Need infomation about balance rehab after vns' I think you will get a variety of responses some of them from people whose situation is a little closer to yours.

 

Re: I need to understand

When I first started down the path of Meniere’s disease, I was struck by the imprecision and biases in the methods used to diagnosis inner ear ailments. When I weighed these deficiencies against the irreversible nature of surgery (vestibular nerve resection), I decided that surgery was a last resort for me. Additionally, those of us that are bilateral need to be doubly cautious about surgical methods.

In hindsight I would say that I did the right thing for my situation. I sincerely doubt that I ever had Meniere’s disease. It is far more likely that I have an autoimmune inner ear disorder (AIED) that produces symptoms very similar to Meniere’s disease.

My feeling is that there is no unique underlying cause of MM symptoms. For me, MM has become an umbrella term for various unknown disease states. I can see no improvement in this sorrowful state until better diagnostic equipment and procedures are devised.

Joe

 

Re: I need to understand

What Joe said.

 

Thanks for the information, it gives me somethings to look for after my surgery. My MD sent me to VRT about five months after my first surgery and found that it was not very effective for me because my ear is still fluctuating that what I learned in one session would not hold for the next time that I did therapy. I'm hoping that things will turn out much better after my VNS. I will be going back to help relearn to do things with only one balance organ. My surgery is on March 4th, and as the days get closer to it my fears continue to grow, but in the end I think that i am making tthe right decision for me.