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I have been suffering from an undiagnosed balance disorder for many years. For lack of a name, I have been referring to this condition as Earth Axis Syndrome. After a recent trip to a new doctor however, this problem may now have a proper name, utricular dysfunction.

Before continuing further, it would help to first read the Earth Axis Syndrome article.

The Search for Answers

As explained in the Earth Axis Syndrome article, I have seen many doctors, had many tests, and tried many treatments over the past 8 and a half years; nothing has worked. After so many trials and failures, it is easy to start thinking you will never find an answer. My family never gave up hope though. My sister heard about a balance doctor named Dr. John Li in Jupiter, FL. I emailed him my story and medical records. His initial reaction was that I could have utricular dysfunction. After visiting with him in person, his belief persisted.

Utricular Dysfunction

There’s a good explanation of utricular dysfunction here: http://www.dizziness-and-balance.com/disorders/unilat/utricular.html

My understanding, from what I’ve read online and from Dr. Li’s explanation, is that the inner ears are your body’s major balance centers. Each inner ear has organs called a utricle and a saccule. The utricle is positioned horizontally and senses horizontal translation (i.e. movement in the horizontal plane) and horizontal acceleration. The saccule looks like the utricle but positioned vertically. It senses vertical translation and vertical acceleration. The utricle and saccule are also important in sensing gravity.

Inner ears also contain the semicircular canals which are used to sense axial movement (rotation). Commonly occurring Benign Paroxysmal Positional Vertigo (BPPV) takes place when crystals from within the canals get loose. This is treated with some head maneuvers that move the crystals back into the canals. This is not my health condition.

Diagnosing Utricular Dysfunction

Based on my symptoms and medical records, Dr. Li strongly suspects that I could have utricular dysfunction. This diagnosis would explain my constantly tilted vision. The bad utricle would be in my right ear since my angle of tilt is up-left to down-right.

There is no known test for determining utricular dysfunction. The closest diagnostic currently available is the lidocaine labyrinth anesthesia test (LLAT). For this test, a syringe of lidocaine is inserted through the eardrum and into the inner ear. The anesthesia will disable signals from the chosen inner ear for 2 to 4 hours. The goal is that during this time, the patient’s balance will get better because the brain will only be receiving signals from the good inner ear.

There are three possible conclusions to the LLAT:

1. True Positive: The patient’s balance improves during the test, indicating that bad balance signals are coming from the anesthetized ear.
2. True Negative: The patient’s balance does not improve during the test. Some possible deductions are that bad balance signals are not coming from the anesthetized ear, that the other ear is sending bad balance signals, or that maybe the balance problems are not a result of the ears.
3. False Negative: The patient’s balance does not improve during the test. When the test begins and the brain no longer receives signals from the anesthetized ear, it usually goes into panic. This causes the patient to get even sicker than before. It is possible that this sickness lasts the duration of the test, meaning that possible positive balance improvement is never detected.

Note that there is no chance of a false positive result from the test. When you have a balance disorder as strong as mine, your balance cannot suddenly get better for no reason.

Also note that even a true positive result from the test does not necessarily mean you have utricular dysfunction. The test can indicate that a certain ear is sending bad balance signals, but it cannot single out which part within the ear is responsible for those bad signals.

Dangers of Testing

The lidocaine labryinth anestesia test is not without risks.

In order to perform the test, a needle containing the lidocaine must puncture and pass through the eardrum. For most people this isn’t a big deal. In my case though, Dr. Li noticed that my right eardrum is in bad condition. It is super thin and even moves when I breathe. He asked if I could feel fullness in my right ear, and I replied that I do ever since I had a labyrinthine fistula repair in that ear. The eardrum was likely damaged during that surgery. Because of this, there is a chance that sticking a needle through the eardrum will leave a hole. On top of affecting hearing in that ear, my greater fear is that further eardrum damage may cause my balance to get even worse than it already is. For example, hot/cold air or water passed through the ear can induce spinning.

My fistula repair surgery affects the test in an additional way. The patch they used to cover the hole in my ear may absorb the anesthesia, dampening its effects or stopping them completely. This would lead to a false negative result.

The LLAT, as mentioned earlier, usually makes you sicker right away, and that sickness can last the length of the test. The brain does not always adapt quickly to signals from an ear suddenly being discontinued, usually causing vertigo. Dr. Li said that some of his patients spend the entire test throwing up. Besides my fear of vertigo during the test, I’m worried about how long I will be sick after the test. I am very sensitive to balance. Even if the vertigo is short lived, I could be sick for days, weeks, or months after the test.

In accordance with my sensitive balance, there is a strong chance that this test could result in a false negative. Even if the diagnosis is correct, the shock of the cutoff signals will likely make me sick throughout the test and I will not get to the potential positive benefits in time before the anesthesia has worn off.

Treating Utricular Dysfunction

Once utricular dysfunction has been diagnosed, the treatment is to permanently stop balance signals from the bad ear from reaching the brain. This is either done through surgery to snip the nerve that balance signals travel through, or a chemical treatment that has a similar result. Both treatments are non-reversible and have their own risks.

“There is no good solution to a bad problem”

I’m not sure where I first heard this, but experience has taught me time and again that there is no good solution to a bad problem. My balance condition is severe. It is uncommon. It is difficult to diagnose, approach, and treat. There is no quick or easy fix here. No matter what I decide to do, there will be negative consequences.

My task now is to determine which route to take in dealing with my health. Doing nothing is an option. It is a hard route to choose since it will definitely not lead to a cure, but it could also mean avoiding becoming permanently worse.

I’m currently leaning towards finding another doctor with experience in utricular dysfunction to corroborate Dr. Li’s analysis. I also need to discuss with Dr. Li what he believes is the likelihood of my eardrum being damaged during testing.

The Trip

Before ending this article, I want to mention the car ride I took to get to the doctors office. Dr. Li practices in Jupiter, FL, about three hours from my house. Leading up to the trip, I would go out on car excursions with my family to prepare my head for handling the long journey. Once on the trip though, I learned two things I didn’t prepare for:

• My longest practice car trip was about 40 minutes each way to my brother’s house. Three hours is much longer than that. The more time I spent in the car, the sicker I got.
• Along with the length of the trip, I had not tested going 70+ mph like I would be on Florida’s Turnpike. I didn’t think that speed would make much of a difference considering acceleration would be mostly constant. I was wrong.

So the the car trip to and from Jupiter was very difficult. On the way home, we had time to stop at every rest stop along the way, about 40 minutes between stops. We then walked around each stop for 15 minutes. These stops helped give my head a chance to relax and made the return trip much more bearable.

Gratitude

I want to give a big thanks to my family for continuing to support me through this illness. I don’t know what I would do without them.

I want to thank Dr. Li for taking an interest in my case. He has been very generous with his time, good with explanations, and seems to really want to help me get better.

Also thank you to those who have emailed me with suggestions and balance issues of their own. Our underlying problems may be different, but we are not alone in our balance disorders.

Written by: Andrew Mantel. November 17, 2015.