Finding the right doctor to treat you for Meniere’s disease is challenging, but it’s one of the most important things you can do, especially early on.
Meniere’s disease is somewhat rare and the reality is that many doctors will not have a lot of experience treating it, if any at all. Even Ear, Nose and Throat (ENT) doctors won’t always be able to help. Most of them have heard of Meniere’s disease, and may have even treated several cases, but unfortunately, most ENTs will not have very much experience treating Meniere’s disease.
So you need to see a specialist, and the kind of specialist you want to see is called a Neurotologist. They are ENT doctors who have gone on to subspecialize in treating neurological disorders of the inner ear (balance and hearing disorders).
Typically, they will have way more experience treating and diagnosing Meniere’s disease, as well as other vestibular disorders. So if you have been misdiagnosed or don’t yet have a diagnosis, your best chance at getting treatment is finding a good Neurotologist.
How to find a Neurotologist:
There are many different doctor rating websites, but my personal favorite is called Healthgrades.
It allows you to search for specific doctors by speciality, location, and rating scores based on anonymous patient feedback and surveys. (It’s a five-star rating score just like on amazon.)
Healthgrades will show you the conditions the doctor treats (make sure to check that Meniere’s disease is listed), if they have any malpractice suits, any awards they may have won, and the insurance providers they accept.
It’s an incredibly empowering website and I encourage you to search for highly rated local Neurotologists.
If there are no Neurotologists nearby (a common problem, especially if you live in a rural area), you still have options.
Your best bet is try to start with out a highly rated ENT in your area. Some ENTs actually do have a lot of experience treating Meniere’s disease, and while they’re more rare, they are out there. Try calling Neurotology offices in nearby towns for a local ENT referral.
Keep in mind, however, that you may end up having to travel further than you had hoped to find the right doctor.
Qualities of the Wrong Doctor:
Unfortunately, finding the right specialist becomes even more complicated because a doctor’s experience is only one part of the equation. Their bedside manner and mindset are arguably just as important.
When I was first diagnosed, I started with a local ENT. I went to the office and started to tell my story. The night before, I had my worst vertigo attack to date, so I started there and worked backward.
I explained all the vertigo, dizziness, ear pressure, the ringing, and the hearing loss. He asked me a few questions, took some notes, and then he looked at me very sternly.
In a cold emotionless voice, he said “You have Meniere’s disease.”
Most doctors wont jump straight to a diagnosis. It’s a big red flag, and I did end up having testing done later on to confirm the diagnosis. But at the time I didn’t know any better.
He looked at me and said, “There is no cure, we don’t know what causes it and every time you have vertigo like you had yesterday, you will lose a little bit of your hearing.” He explained I was going to have to change a lot of things about my life and quickly.
I was terrified. So I did what I always do when I’m scared. I started asking questions. I just wanted to understand.
But my doctor didn’t see it that way. He didn’t see that I was terrified and on the verge of tears. He only saw me as a difficult patient and believed I was questioning his intelligence, yelling at me the entire time.
He didn’t realize I was just afraid. He delivered the terrible news and just expected me to accept it.
But a chronic illness that imposes such severe limitations on your life is devastatingly difficult to accept.
It was one of the lowest points of my entire life. I truly believed that my life was over, and I had no hope. I had no sense that I could possibly have a future worth living.
The Right Doctor Can Change Everything:
Fortunately, several weeks later, my grandfather Eddie got me a referral to a Neurotologist at the University of Miami hospital. It was a turning point.
My second doctor was kind and compassionate, and patient with me. He took the time to answer my questions. He saw that I was afraid and he gave me hope. He told me stories about some of his other patients who were doing well, and explained that many were able to manage their symptoms.
He gave me ideas for lifestyle management, as well as medications and supplements he wanted me to try. He really gave me hope for the first time. He painted a picture of a world where I could be okay, and until that moment, I hadn’t even considered it as a possibility. He gave that to me, and it changed everything.
It also made me realize that your doctor’s mindset is contagious. My first doctor left me feeling hopeless. How can you expect there to be hope or to believe that you can improve, if your doctor doesn’t even give you a sign that it’s possible?
So today, I wanted to stress the importance of finding not just a doctor who is experienced, but one who is kind and compassionate, and will take the time to answer your questions.
When you really feel like your doctor is on your team, it makes all the difference in the world.
If you’ve already found a wonderful doctor, tell us about it in the comments below!