A Pituitary Lesion or Tumor — Share Your Experience

When I developed high-pitched tinnitus and pain hyperacusis in September of 2022, I refused to get an MRI because I was certain that the noise would aggravate my ears.

In November of 2023, I developed a new symptom: I started hearing the sound of my own heartbeat thumping in my ears, even when I'm at rest and feeling perfectly calm. When I told my doctor, I was encouraged once again to get an MRI. For the second time, I declined, so we settled on a CT angiogram as the next-best option. I've never had a brain scan of any kind, and this seemed like a reasonable compromise.

I had the CT angiogram a couple of weeks ago, and the results are in. The good news is that there is nothing abnormal related to my ear problems. The bad news is that there was an incidental finding that has nothing to do with my ears: it's a very tiny lesion in the sella turcica, the place where the pituitary gland sits.

This type of lesion is a very common incidental finding for people who get brain scans, and most of the time, there is nothing to worry about because it isn't cancerous, it isn't growing, and it isn't affecting hormone function. It just sits there quietly, doing nothing.

How common is this type of lesion, you ask? This article at the Cleveland Clinic website says, "About 77 out of 100,000 people have a pituitary adenoma. Still, researchers think adenomas actually occur in as many as 20% of people at some point in their lives. As many people with pituitary adenomas, especially microadenomas, are asymptomatic, they’re usually never found."

I'm one of those asymptomatic people, so I'm pretty sure that this micro-sized lesion is nothing to worry about at this time. Nonetheless, the radiologist who reviewed my scan is recommending a pituitary MRI in the near future so we know exactly what we're dealing with. An endocrinologist was also pulled into the discussion, and they also said the same.

I know their intentions are good, but I'm 90% certain that the unbearable loudness of an MRI will result in a very bad setback, possibly the worst I've ever had. Given that almost every setback causes a recurrence of my suicidal ideation, I really, really don't want to have the MRI.

My doctor has offered to sedate me for the MRI, but I said to her I'm not worried about the anxiety I would feel during the MRI. I'm worried about the possibility of experiencing catastrophic levels of pain and a permanent increase in tinnitus afterward, and I don't think that is dependent on whether I am sedated or not. Even in emotionally neutral or positive situations in my own home, I can have a bad setback just from hearing a loud noise.

Do any of you have a similar type of lesion or tumor? If so, what sort of compromises have you worked out with your doctors to balance your need for noise avoidance with their need for an accurate diagnosis? I don't want to be perceived by my doctors as cowardly or challenging to deal with. Still, I am thinking of holding my ground and not getting an MRI unless I start to have symptoms that would indicate this little thing inside my head is actually doing something malicious.