Tuesday, May 18, 2004
Videonystagmography (VNG)
That's the name of the test I had this morning. After more traditional balance testing such as putting one foot in front of the other and standing on a thick foam cushion (both of which I really had trouble with), they have you wear a heavy mask that measures and records eye movement as you perform tasks that challenge your balance. The eyes and balance are directly related.
The test was difficult for me because my eyes are very dry from Sjogren's, and I blink a lot, which makes it a challenge to record eye movement. They first had me try to focus after shaking my head. Then I held my head still and moved only my eyes, focusing on a light projected on the wall. The light moved around, and I had to follow it with my eyes only. Then it got really weird. They poured water in my ears! First cold, then warm, and when it started to drain out, they had me do distracting things like compute simple math. The right side had very little reaction because I have been deaf in that ear since I was seven years old. The left, though, was a totally different story. I felt as though I was flying around the room, and at one point I feared I would hurl. I did get through the test with my tummy intact, but was extremely disoriented for a good while afterward. Went back to bed after we got home and slept for three and a half hours, which helped.
Got a call with the results about an hour and a half ago. The balance center on the right has been completely destroyed by my childhood illness. I found this interesting because this sort of testing was not available when I was a kid, and it was always just sort of assumed that the damage would be total. The left is also a real problem, but it is difficult to say how much because it can't be properly compared to the right. Because the left ear problem is autoimmune in nature (damage from Sjogren's), I will not likely get either my hearing or my balance back. All I can do is treat the vertigo. This leaves me with a decision to make.
I can either continue as I am with medication or try a form of physical therapy. The problem with the medication is that while it is helping, the vertigo comes right back the next day unless I take more. I don't want to stay on it long term unless it is necessary, even though it is a very low dose and enables me to function very well. The other option is vestibular rehabilitation therapy. It would teach me to live with my situation without medication. The downside is that it is time-consuming and my insurance might not cover it. I've also had physical therapy that seriously aggravated my fibromyalgia, and I now have arthritis from Sjogren's to consider. I think that if I am clear with my situation I might be able to come up with something not too physically taxing.
It's sort of funny....I feel like I am starting all over again with the balance thing. When I lost the hearing on the right side, the docs told my parents I would always have balance trouble and would never be able to ride a bicycle. I believe I compensated very well. But the new trouble with the left ear has me crashing into things and falling backward much worse than when I was a kid. Perhaps the fibromyalgia is aggravating the situation.
Even though I am not surprised one bit by the results of the test, it is still upsetting to have your fears confirmed. Sigh. I am considerably less than thrilled with what my life is becoming.
Pain level: 6
Fatigue level: 7
The test was difficult for me because my eyes are very dry from Sjogren's, and I blink a lot, which makes it a challenge to record eye movement. They first had me try to focus after shaking my head. Then I held my head still and moved only my eyes, focusing on a light projected on the wall. The light moved around, and I had to follow it with my eyes only. Then it got really weird. They poured water in my ears! First cold, then warm, and when it started to drain out, they had me do distracting things like compute simple math. The right side had very little reaction because I have been deaf in that ear since I was seven years old. The left, though, was a totally different story. I felt as though I was flying around the room, and at one point I feared I would hurl. I did get through the test with my tummy intact, but was extremely disoriented for a good while afterward. Went back to bed after we got home and slept for three and a half hours, which helped.
Got a call with the results about an hour and a half ago. The balance center on the right has been completely destroyed by my childhood illness. I found this interesting because this sort of testing was not available when I was a kid, and it was always just sort of assumed that the damage would be total. The left is also a real problem, but it is difficult to say how much because it can't be properly compared to the right. Because the left ear problem is autoimmune in nature (damage from Sjogren's), I will not likely get either my hearing or my balance back. All I can do is treat the vertigo. This leaves me with a decision to make.
I can either continue as I am with medication or try a form of physical therapy. The problem with the medication is that while it is helping, the vertigo comes right back the next day unless I take more. I don't want to stay on it long term unless it is necessary, even though it is a very low dose and enables me to function very well. The other option is vestibular rehabilitation therapy. It would teach me to live with my situation without medication. The downside is that it is time-consuming and my insurance might not cover it. I've also had physical therapy that seriously aggravated my fibromyalgia, and I now have arthritis from Sjogren's to consider. I think that if I am clear with my situation I might be able to come up with something not too physically taxing.
It's sort of funny....I feel like I am starting all over again with the balance thing. When I lost the hearing on the right side, the docs told my parents I would always have balance trouble and would never be able to ride a bicycle. I believe I compensated very well. But the new trouble with the left ear has me crashing into things and falling backward much worse than when I was a kid. Perhaps the fibromyalgia is aggravating the situation.
Even though I am not surprised one bit by the results of the test, it is still upsetting to have your fears confirmed. Sigh. I am considerably less than thrilled with what my life is becoming.
Pain level: 6
Fatigue level: 7
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