Earlier this week, we wrapped up an eventful series of doctor visits in Northern California. What better way to catch everyone up than a blog post that includes an homage to the classic kids’ book, Go, Dog. Go!? (Stay with me. It might make sense in the end.) The last few weeks have had a bit of everything: the good, the bad, and a whole lotta doctors.
From Bad News to Worse
A few weeks back, we had a follow-up visit with Jen’s stroke neurologist. Not surprisingly, the lines of communication between doctors aren’t perfect, and neither are the lines of communication between doctor and patient. The radiologist hadn’t shared everything he told us with the larger neurology group, including that he had diagnosed Jen’s condition as fibromuscular dysplasia (FMD). Turns out he hadn’t shared everything he saw on the scans with us, either.
At this appointment, we had the chance to read through the radiologist’s notes. They confirmed what he told us — that he saw FMD in the two major remaining cerebral arteries that supply blood to her brain, her vertebral arteries. But the notes also indicated that he saw some sort of arterial dissection in Jen’s vertebral arteries. That was news to us, and it was bad news indeed.
So was the neurologist’s confirmation that some of the symptoms Jen had been dealing with post-delivery were “consistent with stroke precursors.” We walked away from that appointment a little discouraged and carrying a lot more questions than answers.
Another Set of Scans
Because there was enough of a question as to what could be seen in Jen’s scans and whether there was some current event happening with the arteries in her brain, the doctors ordered a new set of scans. We had plans to leave all the kids but Hannah with a friend, and I would go with Jen to watch Hannah while she sat in the MR machine for an hour or so.
Just before Jen was set to leave, Caden decided we needed a change of plans and fell against the side of our fireplace, opening up a cut on his temple. I met Jen at an urgent care center for what I presumed would be some quick stitches before leaving for Jen’s scan appointment. The doctor said there was no way he could put in the stitches in time for us to make the other appointment (which necessitated a drive 20 miles up the 5 freeway in commute traffic). We tried to reschedule Jen’s scan appointment, but that wasn’t going to be possible in the time we needed them to be done. Not to worry, said the doctor at the urgent care center. We were headed to a hospital, so I could just take Caden to the ER to get stitches while Jen was getting her scans. Sounded reasonable, especially because Caden’s head wasn’t really bleeding.
After dropping Jen off for the scans, I pushed Hannah and Caden over to the ER in our double stroller (it’s best to keep Caden contained in the ER, I’ve learned). The waiting room was packed with all sorts of people, including a fair number of grim-faced dudes who looked like they could be nursing stab wounds. Conspicuously absent from the room were any open chairs; even the guy talking to himself in the corner had neighbors on both sides. When I told the woman at the counter that Caden needed a couple stitches for the cut on his head, she said, “Okay, but just so you know, it could be a really long wait.” Just as I was asking her how long she guessed it might be, a young man stepped up next to me and said to another woman behind the counter, “Hey, we’ve been here for six hours and still haven’t got in.” The woman in front of me smiled and pointed to him. There wasn’t the slightest chance I was going to sit in that waiting room with Caden and a baby for six hours, so we left and got some Jamba Juice instead.
Between finishing up with Jen’s appointment, driving home to drop her and Hannah back home, driving over to the last urgent care center that was still open, and waiting to get Caden’s stitches, we didn’t make it home until after 10:00. Thankfully, though, we were able to get Jen’s scans done and had the new images sent along in time for our previously scheduled trip to see a couple of experts in Northern California.
North We Go
Last week, we packed up the Odyssey and drove the whole family up to Northern California for three appointments with an unknown number of doctors.
The first two appointments were with an FMD expert in Sacramento. First, Jen was scheduled for an ultrasound on her kidneys to check her renal arteries for signs of FMD. In addition to the internal carotid arteries, the other most common place for FMD to affect is the renal arteries. Jen hadn’t shown any signs of kidney trouble, but if her renal arteries were affected, that would go a long way to confirming the diagnosis of FMD. Of course, we were hoping that her kidneys would be normal and that the new scans would reveal that she didn’t have FMD after all.
During the ultrasound, the technician showed us in some detail (in response to my questions) what the measurements revealed about Jen’s renal arteries. Unfortunately, the readings were consistent with FMD, which often manifests in a “string of beads” appearance in the arteries, where multiple areas of the arteries are narrowed, then larger, then narrowed again, etc. The blood flow in the critical place in Jen’s renal arteries began at normal speed, then sped up to a level that indicated stenosis, then slowed back down, then sped back up, etc. We knew enough to think that the doctors likely would see that as confirmation of FMD, but we didn’t know how serious the stenosis in her renal arteries actually was.
Sure enough, the FMD expert confirmed at an appointment the following day that Jennifer has FMD and that her renal arteries are affected. He agreed with the radiologist that she had experienced dissections in both of her internal carotid arteries as a result of FMD, and that the lack of flow through those arteries probably was a permanent condition.
From Bad News to Good
He also had some very good news, though. The stenosis in Jen’s renal arteries was relatively mild and had not affected the kidneys, so he considered it a benign manifestation of FMD. Based upon his experience with other FMD patients, it’s possible it could stay that way for quite a while, too. Even better, he saw no indication of FMD in her vertebral arteries!
He said that, while bilateral dissection of her internal carotid arteries was a rare and serious complication of FMD, it appeared to him that she had very good blood flow to her brain from her vertebral arteries and other collateral arteries that apparently had compensated for the lack of flow through the carotids. There are no guarantees about what the future holds, but it’s possible that Jen already has experienced the worst of the effects from FMD.
That was such awesome news — in essence, we went from an expectation that something bad was going to happen (perhaps years down the road, but perhaps just around the corner) to the mere possibility that something bad might happen in the future. That’s a trade we’ll take any day. The mercies of God through this process continue to astonish us, although not nearly as much as they should.
Back when we first learned about the issue with the arteries in Jen’s head, we were put in touch with a group of doctors in San Francisco who were experts in another condition that we thought could have been to blame — PHACE. PHACE is an acronym for a cluster of symptoms related to infantile hemangiomas (tumors of the blood vessels that appear in infants and usually resolve on their own within a few years, but sometimes have other adverse effects). Jennifer had three of the major symptoms of PHACE — a hemangioma that appeared on the top of her head when she was an infant, a defect in her sternum, and defects in the internal carotid arteries. PHACE is a fairly new diagnosis, so Jennifer would be only the second adult in the world diagnosed with it (and, as I recall, the other is barely past her teens).
Perhaps for that reason, the doctors in San Francisco still wanted Jen to come in for their conference, at which a number of doctors with different specialties would evaluate her for PHACE. They said that stenosis in the renal arteries had been reported in patients with PHACE as well.
We were expecting to meet with several doctors, including neurologists who were familiar with the cranial scans of patients with PHACE. Having left the rest of the kids with my parents in Sacramento, Jen and I took Hannah and drove to San Francisco for the appointment. They ushered us back to a fairly typical exam room that was about eight feet wide and ten feet deep, with a large exam table and various furniture and medical equipment. With Hannah in a stroller, Jen sitting on the table, and me sitting in a chair, there wasn’t a whole lot of standing room.
Go, Doctor. Go!
A knock comes on the door. Who’s out there in the hall?
A doctor party!
A big doctor party!
Big doctors, little doctors,
red doctors, blue doctors,
yellow doctors, green doctors,
black doctors, and white doctors
are all at a doctor party!
What a doctor party!
The climax of our doctor odyssey was not unlike the climax of Go, Dog. Go! But instead of a bunch of dogs up in a tree, we found ourselves crammed into a little exam room with a bunch of doctors. Nine doctors, to be exact. They barely all fit in the room. Some peeped their heads over others’ shoulders, and a couple even squeezed around between the exam table and the wall. At least one was behind Jen.
For the next 20 minutes or so, they peppered Jen with questions, talking over each other and occasionally interjecting to spout off their opinions about the current topic. “Wrong place for the hemangioma!” “You call that a sternal defect?” “FMD? Pffft.” (Okay, maybe not those exact words.) And then, just like Keyser Soze, they were gone.
We thought the show was over, but things were just getting warmed up. The next half hour brought a series of brief visits with smaller groups of doctors, most of whom were perplexed as to just exactly what they were supposed to be looking at. The best was a group of three young doctors who filed in and shut the door. The one standing in front smiled and, motioning toward the stroller, said, “Can we see her?” Sure, I said, and pulled the blanket back to reveal Hannah snoozing away in her car seat. The three doctors leaned forward and looked into the stroller. I expected a quick, “Oh, she’s precious!” before they turned their attention to Jen, but they just kept looking at Hannah. Staring, actually. The expression on the face of the doctor in front slowly morphed from a pleasant smile to a perplexed frown. I realized what was going on just as she said, “I don’t . . . see . . . the hemangioma . . .” Ah. They made a graceful exit shortly after I explained that the patient here was the adult, not the infant.
The end result? As we expected, the doctors were doubtful that Jen has PHACE. The trip to San Francisco was still worth it, both for further confirmation about what Jen actually has and for the great doctor party.
Lord willing, I think we’re even done with doctor visits for a while . . .