In the above illustrations of the inner ear the one on the left is a normal ear.
The illustration on the right is having a Meniere's attack.
Notice how much more fluid is built up in the Meniere's ear. (the blue areas)
Meniere's disease is an abnormality of the inner ear causing a host of symptoms, including vertigo or severe dizziness, tinnitus or a roaring sound in the ears, fluctuating hearing loss, and the sensation of pressure or pain in the affected ear. The disorder usually affects only one ear and commonly causes severe hearing loss. Named after French physician Prosper Meniere who first described the syndrome in 1861.
My Meniere's Story:
I think I had Meniere's Disease for years before I was officially diagnosed. I simply thought I had some bug, or had food poisoning, or something like that. I had horrible ear infections when I was growing up, I was even hospitalized for them a couple of times, so when my ears felt fuller, or my hearing was off, it just wasn't anything new. I just racked it up to my wacky ears. Plus, for much of this time I didn't have health insurance, or had very little, and since the attacks would go away I didn't go to the doctor.
Then one day I had the worst attack yet, and I had health insurance this time. I had been having rotational vertigo for over 7 hours and throwing up the whole time. My boyfriend (now my husband) decided to take me to the ER. It was there that I first heard of Meniere's. The ER doctor told me I should see an ENT (Ear, Nose and Throat Doctor), because he thought I could either have those calcium deposits in my inner ear that cause vertigo, or I could have Meniere's Disease. (This was in 2001 or 2002, I'm not sure which.)
So I went to an ENT, and he said I had Meniere's. I now know that I should have had more test than he conducted, and that he really didn't know enough about this disease. Unfortunately, it took me years to find that out. Finally, in November 2009, he told me that I may need to see someone else, that he really didn't know that much about this disease. (when I say years, I mean something like 7 or 8 years). Luckily, during most of this time I would have long periods without an attack. He put tubes in my ears and said that was why I wasn't having attacks. I'm pretty sure I was just not having attacks because I was in remission for those time periods.
After he told me he didn't really know that much about Meniere's I went on a search for someone who did. I found Dr. David M. Kaylie, at Duke's Otolaryngology, Head and Neck, ENT department and Vestibular Disorders Clinic. Dr. Kaylie is a neurotologists specializing in diseases of the inner ear such as Meniere’s disease, benign paroxysmal positional vertigo (BPPV), vestibular neuronitis, vestibular labyrinthitis, migraine associated vertigo, among others disorders.
Before I could even see him they had to put me through a series of Balance Functioning tests to make sure I had Meniere's and not something else. These test included:
- VideoNystagmography/ElectroNystagmography (VNG/ENG)
- Rotational chair
- Vestibular evoked myogenic potential (VEMP)
Learn more about those test here: Balance Functioning Tests (This site explains what they do during the test.) It is also explained on the Duke's Vestibular Disorders Clinic site.
I was given all the tests except for the one where they run warm and cold water in your ears, I had tubes in my ears so this test wouldn't have worked.
The results showed that I have Meniere's Disease. Dr. Kaylie prescribed a low sodium diet, (I was already following this) a diuretic, and steroids to try to slow things down. He also prescribed Valium and Phenergan to help when I had an attack. Unfortunately, I continued to have 2-5 attacks a week. I couldn't do anything without help. It was during this time that I had an attack so bad that I started hallucinating and I was rushed to the hospital in an ambulance. The ER worked at getting me calm, and trying to stop the vomiting. I was there for 6 hours. At one point the doctor told me that he couldn't understand how I could still be throwing up with all the medication they had given me.
When I went back to see Dr. Kaylie we decided to try Endolymphatic Shunt Surgery, however he wasn't going to put in what we think of as "shunt". He explained that shunting really just means to move something from one place to another. He drilled a hole in my skull where the Endolymphatic sac is, and he also removed part of the temporal bone. This is to allow the sacs in the ear to have room to expand when they fill with fluid. You have 2 different fluids in your ear and if they mix then you end up having horrible vertigo. The hole is left open in the skull. The surgery takes about 2 hours. They cut from the top of the ear all around the back to the bottom of the ear and fold the ear forward to be able to get to the area they need to. This is a pretty invasive operation, you do get to come home the same day, but recovery is long and painful. However, it was worth it, I only had one real vertigo attack from April 28th - August 11th. Unfortunately, I have bilateral Meniere's and my left ear started causing me to have attack after attack.
Dr. David Kaylie and another doctor at Duke, Dr. Linda Gray Leithe, are doing research trying to find a cause of Meniere's. Dr. Gray is a neuro-radiologist, she is researching how increased or decreased spinal fluid pressure can cause different disorders, including Meniere's Disease. On November 3, 2010 Dr. Gray performed a lumbar puncture on me. We found out that I have low pressure. On November 24th, she patched 4 leaks that they found. (She found a total of 6, but she didn't want to have my pressure go too high by patching more.) Unfortunately, those patches didn't hold and I had to have it done again in January 2011. That time they used something different to patch my leaks and it should hold. I am now feeling so much better! NO vertigo! My hearing in my left ear is staying up and stable, my right ear's hearing didn't come back, and I still have tinnitus in that ear. They think it was probably just too damaged after having so many attacks. I can deal with the symptoms I have left! I was able to get hearing aids in April. I have been amazed at the things I wasn't hearing before.
***In June 2011, I started have some symptoms again. My hearing dropped significantly in my left ear. I can barely hear even with my hearing aid in that ear. The disequilibrium is back. Early in July, I saw Dr. Gray again. I had another Lumbar Puncture and found my CSF pressure was low again. She re-patched the old places, and more. I have been having severe Migraines, and roaring Tinnitus for the past month. I'm also often off balance. I have not had a true attack of severe Vertigo! I have had a few mini-spins, but nothing drastic.
I am to have another Lumbar Puncture on Aug. 22nd to see if my pressure is still off. The migraines, and extreme tinnitus must stop. I can't do anything. I'm too off balance to cook. I'm in too much pain to clean....I'm miserable.
But still hopeful that we can get things back to the way they were.
Hopefully, they will be discovering at least one cause of Meniere's and will be able to treat, not only me, but many Meniere's sufferers.
I have found out that they are also doing this research to treat patients with Ramsey Hunt Syndrome. I sure hope it will work for many, many people!!
