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
- 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.