I saw Dr. Kaylie today. He is such a nice doctor, he really listens, will joke around with you, and just has a great bed side manner. It’s so refreshing after some of the doctor’s I’ve seen. Here’s a link to a story about the Vestibular Testing that they do at Duke I thought you might find interesting, it also mentions a bit about Dr. Kaylie. I went through all of the Vestibular testing except for the test where they run warm and cold water in your ears (I had tubes in my ears so that test wouldn’t have worked).
I had a few questions for him about the procedure I’ll be having on November 24th, (the Cerebral Spinal Fluid Patch), and I found out a few things that are different about my case.
I wanted to know how soon I should feel a difference after the patch. He said if Dr. Gray “tops me off” with the artificial CSF I will feel immediate improvement. However, even if she doesn’t our bodies are always making new CSF so I should feel improvement within hours of the procedure. That’s exciting. But I’m trying so hard not to get my hopes too high. As he said, even if it will slow the vertigo, or get rid of it, and stop the hearing loss, that will be great. Because if the hearing loss is halted or improved a little, I could get hearing aids since it wouldn’t be fluctuating any more. The best we can hope for is, no more vertigo, hearing restored, and no more migraines. But I am just hoping to stop the vertigo, and make it where I can hear again.
There are 2 things about my case that are different from other Meniere’s patients he has seen. 1- I developed bilateral Meniere’s almost 15 years after my first attack. He said I’m the first person he’s ever seen that it has taken that long. If a patient is going to get bilateral Meniere’s it usually happens within the first 5 years. 2- I’m the first Meniere’s patient that they’ve done the CFS pressure test on that has low pressure. Of course, there haven’t been many yet, so he can’t say I’m an anomaly, but so far I’m different.
Usually, Meniere’s patients have high spinal fluid pressure, that can be treated with a drug. It makes sense since Meniere’s is thought to be caused by too much fluid in the ear.
I asked him if I should stop taking the diuretic since I have low pressure and at first he said yes, then he said maybe we shouldn’t change too many things at one time. I can understand that, we want to make sure my progress is because of the CFS patch and not something else.
Stuart asked Dr. Kaylie about my hearing voices when I’m having vertigo, and he said it’s not too unusual. He said he has one patient who hears music, and not just little bits of music like I do, she hears a whole orchestra. Unfortunately, she hears the same song most of the time. Talk about having a song stuck in your head! I bet you never thought you would hear of someone who could say that literally. : )
I have decided that I should email Dr. Gray and ask her how I’m going to feel the day after this procedure. It is Thanksgiving after all. We are invited to friends’ house to celebrate, but I’m not sure if I’ll feel like the 30 minute drive, and then sitting around with people. If not, I’ll whip up a nice Thanksgiving meal for Stuart and I the day before my procedure (I refuse to call it surgery), and we can eat it on Turkey day.
I am so proud of myself today! First Stuart and I went to the little Mall near us on the way home from the clinic, and we had a nice little walk before eating a small dinner. Then we went to Whole Foods – I found Coconut Secret’s Amino Acids. This is a gluten free and soy free sauce that is a soy sauce substitute. I can’t wait to try it! I really think I’m having trouble with soy, but I just can’t stay away from Tamari. I love stir fry’s and just soy sauce flavor in general. This not only has no soy or gluten, it also has significantly less sodium. I also found Bob’s Red Mill’s Gluten Free Quick Oats, I’ve tried their GF Rolled Oats before, but it just seemed to have too many hulls in it. (I didn’t feel like the quality control was very good.) I usually put those in the blender first for a little while before I use them. (Oh, and the Quick Oats were cheaper than the Rolled Oats! Score!)
Mainly I’m proud of myself because I did more exercise than I’ve done in a long time. I did about 20 reps of each of the following:
- partial push-ups *this was very hard for me, I was surprised and embarrassed with myself.
- outer leg lifts
- inner leg lifts
- bridge
- clam shell
- rear leg lifts (to help with the glutes)
- tricep curls
Then I did some yoga stretches. In all I worked out for about 30 minutes. I didn’t realize it was this long until I noticed a whole program of Cash Cab had come and gone and I missed reading any of the questions. I didn’t do great with my diet today, but I was still running to the bathroom so much I was just happy to get something in me that didn’t hurt, and would stay in.
I think the hearing in my left ear is coming back a little, but often that is more annoying than when I can’t hear anything out of it. It is so tinny sounding until it comes back more. If I put the amplifier that I have in that ear, everything sounds high pitched and down in a barrel. It’s horrible. But wearing the amplifier in my right ear all day gets sore after a while. So I just mute the TV and read the captions, or I get on the computer, or read.
What do you do when you can’t hear?
Do you feel awkward about other people?
Do you feel left out of things because of your disease? Not necessarily because you aren’t invited to things, but because you feel like you can’t go.
Picnic with Ants 
Hi there,
Just want to say that I’m hoping that all goes well on the 24th for you, and that you find complete relief soon!!
I’m very fascinated by all of this. I’m a 7 year suffer. So far, my symptoms have been unilateral, but my good ear is starting to ring. Deathly afraid of going bilateral. I was in a very bad car accident about a year and a half before all of this started. Chiropractic adjustments never helped, so I thought the accident didn’t have anything to do with any of this. After reading your blog, I am now second guessing this. I will be watching your results closely. Hoping that this is truly your answer, and that better days are ahead!! Best of luck to you!
Might I ask…how would one find out if this is their issue? Is a lumbar puncture the only way? What type of doctor can do this test? And what test result would point to a leak?
Thanks in advance.
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Courtney,
As far as I know the only way to find out if you have abnormal spinal fluid pressure is through a lumbar puncture. And even then if you don’t have the right doctor they may tell you it’s find. My pressure was perfectly normal, but when my doctor inserted artificial Cerebral Spinal Fluid in I started to feel much better. So the normal range, isn’t normal for me. I’m lucky that I live near Duke and Dr. Linda Gray is know all over the world for her work in neuroradiology. If you look her up at Duke it’s Linda Gray-Leith.
So the type of doctor my Otolangologist sent me to was a Neuro-Radiologist. They are working together to find out if some Meniere’s cases could be caused by either lower or higher spinal fluid pressure.
If you wanted to get in touch with Dr. Gray, I’m sure she wouldn’t mind, and you could ask her if there is a doctor in your area who might be able to do the same thing.
The test results that Dr. Gray were looking for was for improvement, she doesn’t go by the numbers. She checked to see if adding the artificial spinal fluid pressure back in helped, and if it did that means a leak. If it hadn’t she was going to try giving me the drug that reduces the spinal fluid pressure to see if that worked. Dr. Gray works much more on empirical evidence, instead of “normal” test results.
I hope this answered your questions.
Good luck!
I really hope you never acquire bilateral Meniere’s.
If you have any other questions please don’t hesitate to ask.
wendy
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Hi! I also have funny tinnitus sounds. Sometimes it sounds like far away voices or music, sometimes like pouring water into a glass. And I also have that clicking sound. It´s like an old alarmclock that is ticking loud, but not that regular. I´ve found out that if I try to imagine the sounds as if they were real sounds they are less anoying. I imagine the klicking sound as a clock somewhere in the room, the “talking” sound is just the TV left on and the worst sound is a lorry standing outside my house with the engine running. It may sound crazy to do like this – but for me it works and i feel better if I think the sound is outside my head instead of inside.
I have used hearing aids for three years now. I can`t hear voices without them. They have different programs and I can change the volume. That is necessary when the hearing fluctuates. I also learn special signlanguage used simultanious to the spoken word. That is a great help at home – my husband is also learning and so is my sister. My friends and family now that they have to talk to me face to face so I can read the lips. A conversation with one or two in a quiet room is no problem. Bigger groups is no good and something I sometimes avoid. But if I want to hear I always tell about my lousy hearing and that I need a face to face conversation to follow. And most people respect this. But you have to tell again and again…
Good luck with your procedure – it´s very interesting to be a follower from the other side of the Atlantic.
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Susanna,
Thank you so much for the comment. It’s nice to know that someone is going through the same things I am. I’m glad the hearing aids are helping you. They won’t even give me any until my hearing stops fluctuating so much. All I know is that most of the time I can’t hear what’s going on. : )
Good luck! wendy
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hey wendy,
interesting follow-up with your doc. i’m thinking i may ask my oto what he thinks about all this when i see him in december. he’s at wake forest so i’m curious if he’s heard anything about it.
my oto also won’t let me get a hearing aid until we’re done with the gents and we’re a little more sure where my hearing will settle. if it stays where it is, it can be serviced with a hearing aid. but as you know, with this disease it’s a crap shoot. my biggest problem is distortion.
i do feel isolated. not so much from the hearing but from the dizziness and balance issues. i definitely don’t do as much as i used to. but hopefully the gents will kick in at some point and i’ll be able to pick up at least a little bit more of a “normal” life again.
~nicki
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Hi again! I didn´t mention that the hearing aid is very good for the tinnitus. Hearing the real sounds from the world around you can cover the tinnitus-sounds. Not completely, but it might help! It also takes a while to get used to ordinary sounds when you hear them with hearing aid. It´s better the sooner you can start using them. Here in my hometown in Sweden I can visit my hospital in the morning, monday to friday to get help with my hearing aid. Some of my friends with Menière only use hearing aid when they have a bad hearing-period.
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Hello,
Thanks for your reply. Much appreciated. I think I will reach out to Dr. Gray and get her input. I definitely think it’s a good sign for you that you noticed improvement from the fluid insertion. I hope that you are on the right track and close to feeling better!
Sorry, one more question-when you mention that you were feeling better, was it just your hearing that improved? Or did you notice other improvements as well? Do you happen to know if this is this supposed to help with dizziness, vertigo, and the other horrible symptoms? Sorry, guess that was actually 3 questions. 🙂
Thanks!
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Courtney, Courtney, I’ve decided to write another post to answer some of your questions, I’m sure some other people would like to know the answers to the same questions. Please, if you have any more, feel free to ask. I will try my best to answer.
wendy
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