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Sorry I hven't been able to post as much lately.

Posted Apr 29 2010 9:30am 1 Comment
**I don't talk a lot about the fact that I have Meniere's Disease, but it has been causing me a lot of trouble over the past few months, especially the past few weeks.  I wanted to apologize to all of you for not keeping my blog up as much as I'd like and keeping you updated as to why.  I actually had surgery on my right ear yesterday that will hopefully reduce the amount of vertigo I have been getting.

If you'd like to learn more about Meniere's Disease, and the surgery I had yesterday you can continue to reading.



On top a normal membranous labyrinth in the ear.
On the bottom, dilated membranous labyrinth with Meniere's Disease.
The symptoms of Meniere's disease are fluctuating dizziness, fluctuating sudden rotational vertigo, fluctuating hearing loss, tinnitus, and a since of aural fullness in the affected ear of ears.  (I have it in both ears.)  Only 0.2/100 people have Meniere's but many more people think they have it.  It is very over diagnosed.  But you have to go through a long series of strange test to be diagnosed and make sure it's not something else.  Only 15% of those who have Meniere's end up having it in both ears.  It is a progressive disease.  All the symptoms get worse over the years, some people have to have a cochlear implant to hear.
Some people are lucky enough to go into remission for many years.
An acute attack of Meniere's disease is generally believed to result from fluctuating pressure of the fluid within the inner ear. A system of membranes, called the membranous labyrinth, contains a fluid called endolymph. The membranes can become dilated like a balloon when pressure increases.  This is called "hydrops".  Causing the above symptoms.
No ome really knows what causes Meniere's disease.  There are many theories, but there is not one concrete cause yet.  They have found that many people who have Meniere's disease often have a autoimmune disease, so they think it may be in the autoimmune family.
They've also found that animals don't have it.  Yet, they have very narrow temporal bones, we have very thick temporal bones, so if the endolympatic sac or duct were blocked in an animal they would have much more room for the system to expand.
The surgery I had yesterday is called Endolymphatic Sac Decompression.  Different surgeons do this in slightly different ways.  My doctor when put an incision around the back of my ear.  He went in and removed part of my temporal bone and skull around the Endolymphatic Sac and Dura Mater.  Now my membranes  should have plenty of room to become dilated without harm.  Hopefully, no more vertigo, and it will lessen or stop the hearing loss in that ear.  If this works in this ear, and I still continue to have trouble from my left ear,  I will have this surgery in that ear too.

If you have more interest in Meniere's Disease, there are many sites on the internet.  But be careful, the information changes rapidly.  And a lot of the sites, simply are not keeping up with what is current, and a lot of sites want you to buy their cure all.  Believe me, there isn't one.  I tried all the vitamin mixtures and everything else.  The only thing that helps even a little, is a low salt diet, no caffeine, and no alcohol.  Plus taking a low dose diuretic.

And I still ended up in the ER with 6 hours of non- stop rotational vertigo about 3 weeks ago.  That's why I had to get the surgery.

Thank you to everyone for understanding.  And don't worry.  My blog is not going to become a Meniere's blog.  But if anyone out there has it, and needs someone to talk to, please feel free to email me.


**I feel like I should make a disclaimer here.  I am not a doctor or in the medical field at all.  I have gotten my information from different medical sites, which I should have given credit to, but to tell the truth, I wrote this post not long after my surgery and had this very fresh on my mind.  And was writing with the aid of some pain killers.  Most of the information I used came from my doctor at Duke, Dr. Kaylie, who performed my surgery..  Other information came from various sites I've read many times on the internet.  The pictures and some of the information herein came from Northwestern University internet site.


 


Comments (1)
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Wendy, I am so glad to find this.  I was just diagnosed with Menieres Disease/w migrains and a B12 defiency.  I also am seeing Dr. kaylie at Duke even though he is 2 1/2 hours away.  I hope the surgery works for you.  I hope I am responding inthe right place.  I really struggled because of my vision on where to go . Didn't see any thing other than this post about menieres. 
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