Here we are. Back at Stanford. It was only about 2 months ago that we were here saying goodbye to Dr. Hoffinger.
This is also where we met him. Maybe lightning will strike twice?
Anyways, today we are meeting Dr. Frick. Dr. Frick was recommended to us by Dr. Stevenson, Amy’s NF Doctor. This is his video:
Apparently he is really interested in NF and NF-related orthopedic conditions. As a self-admitted “foot and leg guy” this seems like it may be a good fit. ??
After a short wait, we were ushered into a room. We had our list of questions, and we nervously waited. Dr. Frick entered and jumped right into playing with Amy and building rapport with her. Then he jumped into the business with the fracture.
He looked at the (low res) images we had, (HOW could we forget the x-ray disc?!?) and before we had the opportunity to ask a single question, he explained our options of taking the cast off and getting new images or leaving it on to see if the fracture would spontaneously heal. He explained that taking the cast off might gain us more information by taking better images (as Dr. Hoffinger recommended). But that leaving it on would be more conservative, and less invasive.
We decided that the most important thing was to “get the facts” and decided to remove the cast. We went and met with Nick in the casting room, and the screaming began.
We got the cast off, and took new pictures. 3 of them. AP, Lateral, and a shot that was kinda cocked to show any bone growth.
First lateral, because that is the shot that showed the fracture:
Then finally, the cocked shot.
First and foremost, I’ll let Amy tell you her news:
How could this be?
He says the line that Dr. Lerman saw is actually a line you can see in all her x-rays going back to age two. But because of the angle of the lateral shot, it looks like a fracture. But other than that line, he doesn’t see it on the AP shot, so, we’re fine.
FINE?!? OMG sweet relief.
If she’s fine, why is she having pain? Now time for the bad news. He says it looks like the graft is fracturing away from her tibia, and in his opinion, it never looked that great at the bottom. (I have to agree.)
He also said that if her leg is improving and on an upward trend, then it makes sense to let it do its thing. But if on a downward trend, then that’s when you intervene and do something.
He suggested perhaps a small surgery using BMP to wrap the bottom of the graft and get it to solidly take- a surgery the Dr. Hoffinger suggested about a year ago. This makes sense. So I piped up as asked if we were going to be going into her leg anyway, couldn’t we add some grafting material between the strut and the tibia?
Dr. Frick said that it seemed like a good idea. He went on to say that he used to do adult trauma cases, and often when there wasn’t much of the tibia to work with he would unite the tibia and fibula to create one massive, strong bone to get a patient back on their feet. However, he wanted to reach out to a few of his colleagues first, namely a Dr. Lori Karol at Texas Scottish Rite to ask her opinion. Amy is a VERY unique little girl!
He also brought up that tying the bones together is much like the Paley X-Union surgery. So, since he brought him up, I hopped into one of my questions.
What do you think of Dr. Dror Paley’s method for treating CPT? He said that he knows Paley. That he’s brilliant, innovative, has done amazing work, and has furthered our understanding of CPT more than anyone else has. However, that something just isn’t right. Paley’s method is being used exactly in other places, but the same results are not being had. So this leads him to believe one of three things:
- Paley is holding something back to protect his method.
- He is just THAT BRILLIANT of a surgeon, and no one can replicate his work.
- Or he is not being honest with his numbers.
He has no idea which of the three options is correct, but all that being said, he sees great benefit to his method.
I suddenly realized how much better I felt. Obviously, I was beyond relieved that Dr. Lerman has been wrong (strike 3, Shriners, you’re OUT!) but I immediately felt relaxed, comfortable, and confident with him, like I did with Dr. Hoffinger. I looked at Amy’s Dad, and a moment of understanding shot between us. He felt the same way. Pretty sure I felt a strong “I told you so” behind that smile, but hey. When I’m wrong, I admit it.
You hear that, Amy’s Dad? I was wrong, you were right. I shouldn’t have fixated on Florida before getting alternate opinions here. (That we can, you know, afford, lol.)
Most importantly, Amy feels the same way.
Anyways, also in that moment, I realized that I hadn’t really asked him ANY of my questions. YIKES!
How many patients have you treated for Congenital Pseudarthrosis? About 15.
How often have you recommended amputation for your pseudarthrosis patients? To be fair, many times, as in your case, I wasn’t the first surgeon to operate on a patient. Sometimes I was. But overall, I’d probably say about half the cases amputated, and are now much happier. Pseudarthrosis is a very difficult disease, and the most important outcome is a functional child. I feel like with all the cases I had, that we ere able to achieve that outcome.
I scanned down my list of questions. Most of them were about rodding surgeries, and I didn’t need to know that for the moment. The rest, I felt I already had the answers to. So I just jumped to the last question:
So what’s the next step? The next step is to go back in the brace, and back on the daily Exogen treatments. Go get with the people at Hanger, and se what we can do about limiting her movement in this brace. They can rivet a strap on there easily to make her a little more stable.
After that, come back in six weeks and we’ll see where we’re looking. If things are going well, then will keep on keeping on. If things seem to be holding steady or moving in a downward trend, then we’ll discuss surgery. I’m going to shoot out an email to my colleagues, and if you don’t hear from me in a week bug me. I have to have answers by then.￼￼
I relaxed. A plan! A REAL plan! He also gave me his email address, and his nurse did also. Plus, he said he was willing to reach out to Dr. Hoffinger if there was a need also. Both of them said to contact them at any time. Relief, sweet relief!
Houston, we have a new doctor!