Reid Thompson, MD, Professor and Chairman of Neurological Surgery at Vanderbilt University Medical Center talks about a rare problem that can cause breakdown of bone called TIO.
Interview conducted by Ivanhoe Broadcast News in December 2018.
Tell me a little bit about the story, basically, why David came to you?
REID THOMPSON: In medicine, taking care of patients is all about listening to patient’s stories. David’s story is a remarkable story. David, at the time, was about 26 years old. He was a high school teacher here in Nashville. He started essentially falling and losing muscle mass in his legs. It became challenging for him to walk. He started falling and literally breaking almost every bone you could imagine in his body. Here’s a healthy high school teacher who is seeing a lot of orthopedic surgeons for broken bones, ribs, and various bones in his ankles. An unusual story. It was very uncertain what was going on at the time.
What did you find?
REID THOMPSON: The first thing that happened to David was he was seen by a colleague of mine, Katherine Dahir, a brilliant endocrinologist who specializes in bone metabolism. Bones are always in a process of breaking down and then rebuilding, and that just happens naturally. There are situations where one’s bones break down and then you can’t build them back up again. Dr. Dahir recognized that that’s what was going on with David, in the sense that he was not metabolizing his own bone. She did several blood tests initially, and lo and behold, he was just not able to rebuild his bone. She recognized that there is a very rare problem that can cause this bone metabolism. There are some patients who have tiny little tumors, maybe as big as the tip of my small finger, lurking somewhere in the body that are pumping out a growth factor that keeps you from rebuilding bone. She ordered a PET scan of his entire body to look and see if there might be a small tumor hiding. What she found was a very tiny tumor hiding under his brain, under his temporal lobe, along the skull base in his brain. This could be a rare problem called TIO, which stands for Tumor-Induced Osteomalacia, tumors causing breakdown of bone. Because it was under the brain, she sent David to me, and that’s how I met him.
How rare is this condition?
REID THOMPSON: It’s super rare. I can tell you that I’ve been a neurosurgeon for 30 years and I’ve never heard of it. It is not something that we see commonly at all. David also had an MRI scan which showed this very small tumor. The striking thing about it was it looked like a very benign tumor. We see all kinds of benign tumors in patients. People get MRI scans now all the time. If you have a headache or other symptoms, you might get an MRI of the brain. As neurosurgeons, we see patients who are referred to us with little discoveries of small tumors that may never be a problem, aren’t symptomatic in any way. In fact, that’s what David’s MRI looked like to me. It looked like he had a very benign tumor that we call a meningioma. I see a lot of patients with meningiomas. I looked at a scan and said, I don’t know what he has, I’m not familiar with TIO. I’d never heard of it. What I think he has is a very benign tumor that can’t possibly explain his problem. That’s what I thought when I first looked at his MRI scan. I was ready to go in to see him and his wife, who had come to my clinic here at Vanderbilt, and something stopped me before I went into the room. I said, you know what? I’d better learn something about TIO. Dr. Dahir had mentioned sending a patient with TIO and I didn’t know what that was. So, I quickly did a search online. What I found was that there were about three or four scientific papers out there that described these tiny little tumors that look like meningiomas, that you could misinterpret them as being a benign tumor. But they are very different. They’re small tumors that pump out this growth factor. The key message in the papers that I read just before I went in to see David told me that, if you identify these tumors, it’s really important, if it’s possible and safe, to remove them. Because if you can do that, there’s a chance to cure the patients. In medicine, there are rare opportunities to cure someone. But I realized going into David’s room, that if this was a small tumor pumping out this growth factor and if we could safely remove it, we might be able to cure him. In some sense, it was humbling for me because I was about ready to walk in the room and say, look, I don’t know what this is, but we’re not worried about it. But something changed my mind and I realized that I needed to learn something about what he had. It changed the conversation in the room with David and his wife. What I then was able to say is essentially, you know what? I don’t know what you have. I mean, if you ask most neurosurgeons who specialize in brain tumors what it is that you have, they would say it’s a benign tumor, nothing to worry about, we’re not going to put you through a major brain surgery operation to take this tumor out. But I realized, we could do an operation safely. If it was indeed this tumor, we really had to do that operation, because it was a chance to cure him of this disease which was ravishing his body. I mean, he showed up with videos that his wife showed me and he showed me where he could not get out of a car. He was a 26-year-old healthy guy who couldn’t get out of a car. He was just stumbling and falling out, and he couldn’t walk. It was quite brave on David’s part and his wife’s part to sort of say, yeah, we’re signing up for that. We’re going to have brain surgery because we think that there’s a possibility that, if this is that rare tumor, that David could get better from it.
How soon did he start feeling better once you did the surgery?
REID THOMPSON: He felt better right away. The surgery was a beautiful operation. We found this little thing, and it’s a little like finding a needle in a haystack, but we found it. We made sure to take the whole thing out. What Dr. Dahir, the endocrinologist, was able to do was quickly measure the levels of bone metabolites in his blood, and they normalized super-fast. Then about a week later, the pathology report came back and indeed it was this super rare kind of tumor. I really had a gut feeling that this was going to be something that would help him. I mean, it’s super rare, in medicine, to see somebody go from being devastated to being normal. I mean, it was something I’ve almost never witnessed that fast. He’s square dancing. He was walking quickly. He was an inpatient in a rehab hospital here at Vanderbilt in Nashville, and that helped him get his ability to walk back and his strength back. He felt better almost instantly, right away.
How soon after the surgery and rehab did he go back to a normal routine?
REID THOMPSON: I would say within just a few weeks. Seeing him back in the office, it’s a remarkable transformation.
A few weeks? Do you have a number or timeframe?
REID THOMPSON: By the time I saw him at six weeks, he was walking normally. He felt better. He just felt like a different person, too. It’s amazing, if you think about it. This tiny little thing hiding under the brain was the cause of that. We think he’s cured. We’re going to keep an eye on him. We’ll do an MRI periodically and we’ll check his labs, but I think he’s cured.
For people that have conditions that are very rare and sometimes very difficult to diagnose, do you have any advice for them?
REID THOMPSON: I think you need to be relentless, curious, and recognize that there’s a real importance to finding a diagnosis. It is almost like being a detective at some level and searching for clues. I think, nowadays, with our access to information at our fingertips, patients can be their own advocates. They can do the research. David’s wife is a brilliant PhD scientist here at Vanderbilt. I didn’t know this, but she had printed up all those scientific papers. She had done her own research. She knew that this was a likely possibility, which I thought was extraordinary. My advice would be to be relentless, to ask questions, and to make sure you have a diagnosis. You can’t treat something unless you know what it is that you’re treating. The detective work that went into finding his tumor was extraordinary because you had to put all the pieces together. Here’s somebody whose bones aren’t being built properly and breaking down. To recognize that, that could be something like a tumor that could cause that, and then to do the PET scan was the key study that allowed us to see it.
Are there still leftover symptoms from the tumor itself?
REID THOMPSON: No. In 30 years of medicine, I really have rarely seen something like this. It’s just been an extraordinary transformation for him. To think it was just hiding there under his brain, it’s just unbelievable.
In seeing David’s case, how has that impacted how you practice medicine?
REID THOMPSON: It was very humbling for me because I came this close to missing it. I thought this looked like every other benign tumor that we see every single day in my practice. I’ve used this as a lesson to our residents and our students to say, look, we can become expert at a lot of things, but we don’t know everything. I’d never heard of TIO. I didn’t know what that was. What’s changed for me is a recognition that it’s important, as a physician, to be constantly re-educating ourselves. I learned a lot taking care of David. I also learned a lot about patients and their bravery, because this was way uncharted territory. None of us knew what this was. Imagine going through an invasive procedure like a brain surgery operation with the hope that maybe this would work. That took a lot of courage from David. It kind of reminds me of how I love taking care of patients, because I see a lot of bravery. Certainly, David and his wife are very brave people.
Is there anything that I didn’t ask you that you feel that people should know about David’s story or about this mystery diagnosis?
REID THOMPSON: There’s so many elements to this story that are important. It’s being relentless. It’s being curious. It’s making sure that you work hard to figure out what’s might be the cause of a patient’s problem, particularly if there’s something that’s treatable. So often in medicine, patients have problems that we just can’t treat. But Dr. Dahir really nailed this diagnosis. It was exciting also just to collaborate with her because I had never met her. I’d heard of her. She’s brilliant. It’s an opportunity for a neurosurgeon and an endocrinologist to team up. Two very different types of physicians to come together to take care of David. That was cool.
END OF INTERVIEW
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