After my last post I was asked a few questions about what this means and how it works. I will admit that I don’t really understand everything about how decreases or increases in Cerebrospinal Fluid (CSF) affects Meniere’s but I think I can answer some of the questions.
Nicki asked: “if they find the leak, could your hearing come back?” From my understanding, yes, at least part of it. And it would stop deteriorating.
“what’s their theory behind all of this?” I found a pretty decent explination on Dizziness and Balanace.com “The hearing loss of CSF leak likely results from lowering of CSF pressure, which lowers perilymphatic (inner ear) pressure, and results in a picture similar to Meniere’s Disease.” (Walsted et al., 1991) My doctors also think that too much CSF could cause Meniere’s symptoms, that explains why a low salt diet and diuretics work for some people. They may be the people who have just a little too much CSF.
“is this something they think would work for all meniere’s patients or just certain subsets?” I don’t know. I will ask my doctors when I see them again. Since there is still no known cause for Meniere’s there may be many different causes. I’m sure a lot of doctors who would have checked my opening pressure would have said, “oh, you are in the normal range, so it can’t be this.” This is one of my biggest complaints about most doctors, they believe everyone has the same “normal” range.
“could i think of anymore questions to ask you?” Probably, but I don’t know if I’d have the answers. : )
Some of the information from the Dizziness and Balance.com site sounds like what my doctors have said, other parts do not. They don’t mention that an increase in CSF can also cause these symptoms. I know my ear doctor originally expected me to have higher spinal fluid pressure. They think it may also be why shunt surgery works on some people, because they are displacing some of the CSF.
I had a freak accident when I was 28 years old, I was in a commercial kitchen at a nursing home and one of the huge exhaust fans had a blade break and it knocked the cover of the fan off and they hit me in the back of the head and neck, it actually fractured the C-7 vertebra. Dr. Gray thinks this is probably where they will find my leak. The first Meniere’s attack I can remember happened a little over a year after my accident.
I will see my otolaryngologist, Dr. Kaylie, on Monday. I’ll see if he can explain things better to me.