You’ve been diagnosed with hypertrophic olivary degeneration. Now what? Well, first things first, you probably want to practice saying this out loud a few dozen times to get it right. Let me tell you, it’s a mouthful. It’s fate’s funny little joke. Give a rare brain disease a ridiculous name that almost no one can pronounce. Well played.

You probably have a ton of questions. More questions than answers. And you have probably already discovered that you are expected and required to become the expert of your own disease. If you don’t seek out the information and community, it will NOT come find you. There is little information and less people who know where to find it.

We are so glad you found us here at HODA and welcome any and all questions, comments, advice, and contributions. But let’s get down to answering some of the nitty gritty.

What is hypertrophic olivary degeneration?

When you received your diagnosis of hypertrophic olivary degeneration, or HOD for short, you were probably met with a doctor who read a brief definition and told you there’s no information or treatments. They were partly correct. Information is difficult to understand. Most of what you find on the internet about it is riddled with long complicated words and I, for one, needed a dictionary to look up words in the definition of HOD. That is definitely NOT helpful for a newly diagnosed patient! At HODA we aim to remedy at least some of that. Let’s start by explaining what HOD is in words you can actually understand!

I’m going to briefly paraphrase a video from our very own YouTube Channel featuring Dr. Philip Tipton from our Medical Advisory Board here at HODA. Please see the whole video on our YouTube Channel.

Hypertrophic Olivary Degeneration occurs when the inferior olive (there are two of these, so one, the other or both), located within the brainstem is basically blown up like a balloon. This area of the brain affects all kinds of basic functions and the side effects from a diagnosis of HOD could include dizziness, balance problems, gait problems, vision disturbances, trouble concentrating, fatigue, tremor, ataxia, tinnitus, headache, and more. For our complete list of symptoms check here.

What causes hypertrophic olivary degeneration?

Hypertrophic olivary degeneration can be caused by a multitude of reasons, and even no reason at all. Isn’t that a kick in the pants? Here are some causes:

• Brainstem surgery
• Tumors
• Brain injury
• Brain bleeds
• Cavernous Malformation

That is not to say if you have any of the reasons listed you will automatically develop HOD. In fact, most people don’t. That’s why it is so rare. But these are definitely risk factors. There is currently no way to tell if a person is more likely to develop hypertrophic olivary degeneration. More research is needed in that area.

The scariest part of this may be that some people just seem to develop HOD for no reason. It just seems to creep in and happen to some. Again, more research is clearly needed in this respect.

What does the inferior olivary nucleus do?

The inferior olivary nuclei are located just beneath the pons and have direct communication with the cerebellum. So, you can see how this might impact might be significant. Motor coordination and function are heavily dependent on the inferior olivary nucleus.

What is the olivary nuclear complex?

The olivary nuclear complex consists of the inferior and superior olivary nuclei. This area controls everything above from the inferior olivary nuclei, plus auditory perception and part of the superior olivary nuclei.

There is still so much to learn about hypertrophic olivary degeneration and how it develops. At HODA, we believe that knowledge is power and community is essential. Stay tuned so you don’t miss an update as research progresses in this field.

At this point, you might be asking yourself how can I help? Well, there are many ways to help. Engage with the community on social media. We have Facebook and Instagram. We have LinkedIn and Youtube. Find and follow us to stay in the know and help spread awareness about HOD.

Not big on social media? That’s ok, subscribe to our email list for updates. Looking to volunteer? Check out our Board Interest Form or reach out to volunteer in an area of interest. There are tons of ways you can make a positive contribution to our incredible community and made a difference in the lives of families affected by hypertrophic olivary degeneration.

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