Monday, March 26, 2012

Five years ago -- the diagnosis

By the time we finally got to the clinic, the headache was starting to dissipate a bit. My speech had largely returned to normal and my vision wasn't as blurry. My normal doctor wasn't available, so I saw the on-call doctor. He asked me a few questions about the headaches and then we talked about vision. He started to test my peripheral vision and, apparently, I got a few of the answers wrong. At that point, they did a test of what are called my formal visual fields, which measure vision from side to side and up and down. I didn't do so well at that, either.

The doctor then sent me to St. Paul Radiology, which was about four miles away, for a CT scan. We had the scan done and were told to go back to the clinic. By the time I had returned to the clinic, the doctor was waiting for me. The CT scan indicated that something was wrong.

"We saw something on the CT scan. We aren't 100% sure, but based on the tests and the symptoms you'v described, you most likely have a pituitary adenoma."

So what is a pituitary adenoma?

"A pituitary adenoma is a tumor on your pituitary gland."

A tumor. Holy shit. The doctor could sense right away that I was scared and reassured me. "One thing you should know about pituitary adenomas is that in 99% of the cases, they aren't cancerous. What I'm concerned about is your vision, though, so we'll need to admit you to the hospital for observation and an MRI."

What I would learn is that, although I hadn't realized it, I had gradually lost 25-30% of my peripheral vision, mostly up and down. The reason was the tumor was pressing against my optic nerve. I would need to have more testing done to confirm this. The MRI would confirm whether or not there was a tumor.

"So if I have a tumor, what happens?"

"If it turns out you do have a tumor, you'll need an operation to have the tumor removed. We'll start making some calls and we'll have a neurosurgeon talk to you once you get to the hospital. He can tell you more about what will happen."

By the time I got to the hospital, I found out how popular a guy I was becoming. One of the amazing things about modern medicine is how many doctors you can meet if the situation requires it. Over the course of the next six hours, I met an otolarynologist (ear, nose and throat doctor), a neurologist, an endocrinologist and, eventually, the neurosurgeon. It seemed like half the doctors at United Hospital were there to make my acquaintance that day.

Each doctor told me something new. The otolarynologist explained that if the surgery were required, he would assist the neurosurgeon. The good news is that they wouldn't have to cut open my skull to get to the tumor, but instead they would reach it through my nose and nasal cavity. In fact, I wouldn't even have an outward scar.

The endocrinologist explained that if the tumor was indeed there and surgery was required, much of my pituitary gland would need to be removed. The pituitary gland is the master gland that controls all the other endocrine functions in the body. I could live without the pituitary, but it would mean that I'd be on medication for the rest of my life.

The neurologist had looked at my case and thought that while the tumor, assuming it was there, was likely the primary cause of my headaches, I might still have some headaches following surgery because I might be a migraine sufferer as well. He would watch things.

Finally, the neurosurgeon came to visit. He apologized for the delay, but he had performed surgery that ran a little longer than he'd expected. He looked at the chart and the test results and told me flat out -- you're almost certainly going to need the surgery. "The good news is that this tumor is almost certainly benign. Pituitary tumors are almost never cancerous. If you're going to be saddled with a tumor, you picked the right one."

I assumed he wanted me to feel better about it. I wasn't so sure that I did, though.

The wait for the MRI went well into the night and eventually I was able to get in for it after midnight. If you've ever had an MRI, you know this -- it's not a lot of fun, especially if you are claustrophobic. They strap you in tight and brace you so your head can't move. Then they put a scanner down so that it essentially touches the tip of your nose.  Then they put you into the tube. And there you sit for about an hour, with a machine that sounds like a jackhammer blasting away. It's not a lot of fun, but it's the only way to know for sure.

And an hour or so after the MRI was done, the diagnosis was complete. I had a pituitary adenoma. Typically a pituitary gland is about the size of a pea. Mine was about three times that size. Surgery would be required. I was going to be spending a lot of quality time in the hospital.

Next:  more tests, more concerns.


Gino said...

thanks for the memories. LOL

they have to put me out for the MRIs. i'm still required to have them every year, for life.

or, as my neuro said: "we will have a long relationship."

Mr. D said...

or, as my neuro said: "we will have a long relationship."

We've been traveling parallel streets for a long time, my friend. I'm due for another MRI soon.

Night Writer said...

Ah, the MRI - the Iron Maiden of our modern medical inquisitions. I'm not claustrophobic, but I'm glad my own session didn't go on any longer than it did.

I'm following your series with interest, Mark. I can also identify with the parade of doctors and specialists. When I went through the whole thing with my prostate cancer I saw quite a few of them myself, and no matter what the records and charts showed they all wanted to feel for themselves. It got to where every time I met a new doctor and he stuck out his hand I'd automatically turn and drop my pants.

Brian said...

Man, context is everything. I got an MRI for fun when I was a neuroscience student.

I imagine the experience is rather different when your life/health hang in the balance.

Gino said...

try an MRI on your head and see how much fun it can be.

well, actually, for me its a lot of fun, cause i get drugs.

tried it several times without sedation, and i just couldnt do it. it's like sticking your head in a bucket of foam and then having it immobilised, and being told not to move for 2+hrs (mine are doubles, head, plus neck and brain stem. its actually two MRIs)