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 is a common cause of 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)
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 Sac Enhancement Surgery. After much searching, I found that different doctors do different surgeries and call it the same thing. Basically I had a Mastoidectomy. (surgical removal of the mastoid process) with extra stuff. Dr. Kaylie removes more bone so the sac can decompress (on its own) and will have more room to expand. Leaving the endolymphatic sac and dura with no bone covering it. However, most of this is under your ear, so it’s pretty protected. 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, they are 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 felt better for 5 months. NO vertigo! The hearing in my left ear was staying up and stable, my right ear’s hearing didn’t come back, and I still have tinnitus in both ears.
Unfortunately, in June of 2011, my symptoms started to return. The hearing in my left ear dropped from 96% word recognition on a hearing test to 0% in 6 months time. My right ear has only dropped a little, but I’ve begun to notice it seems to be getting more distorted. I went back in for another Lumbar Puncture and found my CSF was low again, I was patched up again…this happened 5 times between the beginning of July 2011 until November 2011. The doctors tell me they have learned much from me. I presented as having low CSF pressure, so they treated it with patches, but I kept “blowing them out”. It appears I may actually have high pressure that has caused me to “blow out” leaks in my spinal column. Every time they tested my pressure was after a blow out, and I would be low. I was in such a miserable state by this time, I needed some relief. I spent nearly 6 months last year having vertigo nearly every day, I rarely left my bed, and very rarely without help. So we decided to go another route for now.
On December 1st. 2011, I had the Endolymphatic Sac Enhancement Surgery on my left ear. The initial recovery from this surgery was so drastically different from the first surgery if I hadn’t known it was the same surgery I would have sworn something else was going on. After the first surgery I had a lot of pain, but no real vertigo, this time I had minimal pain, but severe constant vertigo for over a week. Luckily, it finally stopped, and I’m doing much better. This should reduce my vertigo 70 – 90%. The surgery takes 3 months for complete recovery, (today is January 29th, so almost 2 months into recovery) I’m doing much better. I’m up and out of bed nearly ever day. The vertigo I’ve had (after that first week) has been minor. I’m hopeful this will be a success.
My main complaint now is the migraines. They are getting worse, and worse. One big sign of high pressure.
***In February 2012 I had severe symptoms and was sent in for another Lumbar Puncture. At this time it was confirmed I was having High CSF. A condition called Idiopathic Intracranial Hypertension. I will probably have a page of it’s own soon. But right now please check out these links. What is IH? An article at Wikipedia about IIH.
The main reason I agreed to enter the study about the effects of abnormal CSF on Meniere’s was so the doctors could learn something. I may still be helped by this research, but even if I’m not, I’m thrilled they could learn something from me. That’s all I could ask for. If others are helped because of my participation, it has all been worth it.
So that’s my story, as of April 2, 2012.
I’ll update this again as I progress. If you are reading this months later, please remind me to update it.
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