More questions about CSF and Meniere's

Courtney had some questions about my procedure and I thought I’d answer them here, just in case other people had the same questions.

I really don’t mind the questions, I’ll answer any that I can, and if I can’t I’ll try to find out the information from my doctors.

First, let me say that I am the first patient with Meniere’s that they’ve tried this on who has low spinal fluid pressure, but my doctor said that this is so new they don’t know if that is unusual or not.  Everyone else they’ve tested with Meniere’s had high spinal fluid pressure.
Getting the spinal fluid pressure regulated (in my case, getting the patch so I’ll stop leaking fluid) will hopefully get rid of all the icky symptoms including the Vertigo.  That’s the biggest hope.  It will possibly restore some of my hearing (this one I’m kind of expecting after the test, but I’m really trying not to get my hopes or expectations up at all).  However, it may not “restore” my hearing, it may just make it a little better and stabilize it enough where I can get hearing aids.  It also may stop my migraines.  (wouldn’t that be fantastic?)
Even if this doesn’t work for me, it doesn’t mean that it won’t work for other Meniere’s patients.  As I said, I’m a little strange because I have low pressure.  It has helped other Meniere’s patients.  However, this is very new.

Oh, she also asked me if it was just my hearing that improved during the test…No.  I was dizzy when I was lying there while she was performing the test, and I had a horrible headache.  The first thing I noticed was that my headache was gone, then I realized I wasn’t nauseous or dizzy any more.  Then I really noticed that I could hear everything that people were saying in the room.  It was still muffled, and my right ear was doing better than my left, but I could hear!  Dr. Gray was behind me and I had only been able to hear bits and pieces of words, then all of a sudden, I could hear every word she said.  (unless she whispered, which she did just to test, and play with me.)  Her assistant kept moving his mouth like he was talking and wasn’t really saying anything, just to pick on me.  I actually smacked him one time.  I was in a much better mood after the test.

If this doesn’t work for me, if for some reason they get in there and can’t find a leak, I don’t want that to discourage anyone of you who may be looking at this.  Dr. Gray told me of 2 remarkable cases she has worked on recently.  One lady had been deaf for over 18 months and on the table she began to hear again.  Another patient already had cochlear implants, and when they were finished she had to have her implants adjusted because she could actually hear better.  That was amazing to me.  I don’t know if either of these women had Meniere’s or not.  But I do know that the patients they’ve treated with Meniere’s so far have seen drastic improvement.  I also don’t know if the patients have had unilateral or bilateral Meniere’s.  I have a feeling it has probably been mostly unilateral, because I’m one of the less than 20% of Meniere’s patients who has bilateral, so I can’t imagine that they would have that many bilateral patients.  However, they may have been trying this on bilateral patients first.  I don’t know the answer to this, but I will ask Dr. Gray when I see her on the 24th.

I told Dr. Kaylie about my blog, and he jokingly said, “So, if this is a success we are going to have a lot of people calling us huh?”  I told him that I hope so.  : )

There is one thing you can really tell about both Dr. Kaylie and Dr. Gray, they get excited when they can find out the cause of something.  They care.  If they can find out what is causing our symptoms and help us, they will be so pleased.  When I had such a positive reaction to the increased spinal fluid that Dr. Gray gave me, she actually gave me a high-five.  She loves what she does, and she’s darn good at it, and she gets really excited when she finds a way to help someone.

OK, enough praise for my doctors.  If any of you are interested in this testing, I would say to get in touch with Duke.  Either Dr. Kaylie’s office, or Dr. Gray’s.  If you can’t come to Duke, they may be able to suggest a doctor in your area who could do the same testing.

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About Wendy

I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses. I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!

3 thoughts on “More questions about CSF and Meniere's

  1. It´s fascinating to follow your blog. I´ve never heard about CSF and Menières before.I have to ask my doctor if he´s heard about it! Good luck!

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    • David, Thank you so much for the well wishes. I’m hoping a praying that this will be the answer to so much. It sounds very likely that you could have spinal fluid troubles. Wow, bilateral for 8 years. I’ve had Meniere’s for about 17 years, but I’ve only been bilateral for the past 2. (I know my doctor tells me that it is very rare for bilateral to come on so long after you’ve been unilateral). If I feel up to it, I promise I will post how things went on Wednesday evening….if not I’ll post on Thursday. good luck to you too.

      Susanna, Don’t feel bad, most people haven’t heard of a relationship between Meniere’s and CSF. My doctors at Duke haven’t been doing the research on it long. Dr. Gray realized that an off balance of CSF can really cause a lot of different issues, and with Dr. Kaylie they are researching how it is affecting people with Meniere’s. When I see Dr. Kaylie in mid Dec., or maybe even when I see Dr. Gray on Wednesday, I’m going to ask how many Meniere’s patients they’ve tried this on. I know I’m the first one who has low CSF, all the other meniere’s patients they’ve tested have been high. If your doctor hasn’t heard of it, don’t be surprised. But if you want to know more about it I’m sure Dr. Kaylie, or Dr. Gray can answer questions. Especially if your doctor wants to know more too.

      Good luck,
      wendy

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  2. I wish you well with this new procedure. I have been toying with the idea that my MM might be related to hydrocephalus. I was born with Spina Bifida and suffered from Hydrocephalus as a child. I have a non-functioning vp shunt as well. I have bi-lateral Meniere’s and have had it for about 8 years. I will follow your blog to see how you’re doing. Good luck.

    David.

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