This morning I was greeted by this "memory" shared by my wife from Facebook from July 10th, 2013.
"We have finished testing and consult for Dennis. Plan is to do cochlear implant in the left ear. Just have to wait for insurance approval before we can schedule. This will restore some hearing. We still have to deal with having episodes related to the right ear."
This brought out some of my memories of the last three years and things that are still as true today as they were then, and even back when first diagnosed in 1992.
- I did nothing to "get" this disease. It's a disease, not a result of some activity I did or did not participate in. This makes blaming ourselves a pointless waste of time and energy.
- There is no known cause. The name implies that for true Meniere's disease. Idiopathic Endolymphatic Hydrops- Idiopathic means no known cause. Those who claim they know the cause do not. And if they do know a cause, then you do not have true Meniere's disease.
- There is no known cure. Again, those who claim a cure do not have one, and if you are "cured" you likely did not have true Meniere's disease. Stopping your symptoms is NOT a cure.
- Hearing loss is likely.
- Along the same lines, I did nothing to cause my hearing loss. Quit blaming me! In my case, quite the opposite was true. At the first sign of hearing loss, I did everything possible to prevent it. I used ear plugs, hearing protection, avoided (as best I could) situations where loud, prolonged exposure would happen.
- Hearing aids may not help. Accept the fact that my hearing is bad. Endlessly telling me to "get a hearing aid" is only going to aggravate me. I know my hearing history and test results. Unless you are a licensed AuD, keep you opinions to yourself.
- Despite my very best efforts, I may still have vertigo attacks. That is the very nature of the disease. It comes, it goes. The length of time for each will vary from person to person and from time of year to time of year. It will also vary from one point with the disease to another. That is the difficult part. You have no idea if, when, or how long you are going to have any aspect of the disease.
- Everyone deals with things differently. Don't tell me so-and-so was or wasn't able to do certain things. That's them. This is me. I may be stronger than some. I may be weaker. Comparing me with others won't make me feel better or worse, just tired of hearing about them and tired of you.
- There ARE things that will help control symptoms. Some more easily for some than others. Ultimately, a completely destructive treatment should control my symptoms. If not, it is likely I was misdiagnosed. No one WANTS to have the destructive treatments, but sometimes they are necessary. No one wants to be left deaf or without any balance function, but that is what destructive treatments do. Don't condemn me for delaying them as long as possible, and don't condemn me for using them. If I, in consult with medical professionals, decide it is the best way to control life altering attacks, it is my choice. I know the possible outcomes. I'm willing to take that risk because it is better than living the way I am.
Three years ago I was ready to jump right to the destructive on my right ear as I had good results from it 18 years prior with my left. It would have been far better than what I was living with in July 2013. I even told my ENT that. I remember telling him "if given a choice between being deaf and feeling good, or hearing and feeling like crap, I would choose deaf in an instant."
He proceeded to give me a Cochlear implant and work on treating my right ear.
Thankfully, I have had great results from the implant and the treatment-so far.
'Til next time
Just a guy trying to live with and invisible, potentially debilitating illness