Yesterday I met with Dr. Sherene Shalhub and her entourage, which included one doctoral fellow (Dr. Becca Ur), one visiting doctor, and one student doctor-in-training. The little consultation room felt microscopic by the time everyone had squeezed in.
I’m going to cut to the chase, skipping over the witty repartee with the Loquatious Chinese Medical Assistant and the time spent rehashing my medical history and the history of my symptoms with Dr. Ur. Here’s what I think I learned from Dr. Shalhub.
Diagnosis
As we already knew, I have EIAE in my left external iliac artery. New information she added: The fancy ultrasound I did a few weeks ago allowed them to measure my artery diameter while I was symptomatic. First, whether at rest or exercising, the artery wall had thickened a little bit. But the big thing contributing to the “claudication” (fancy doctor-speak for “excruciating pain,” I think) is artery diameter.
At rest, my artery is a normal diameter for a woman my size: 7 mm. After running at 5.5 mph on a 12% incline for 4 minutes, which induced such excruciating pain I couldn’t continue, they measured the arterial diameter again: 2 mm.
Clearly that’s going to have a major impact on the poor oxygen- and glycogen-deprived muscles in my leg. But I should note that Dr. Shalhub’s theory about vasoconstriction remains a theory. Other surgeons have other theories, which I’ve discussed previously: The “tortuously long artery” theory, the “wall thickening” theory. There may be others.
Dr. Shalhub did reiterate that nobody knows for certain why this happens. Her treatment is based on her theory, which appears to be borne out in the ultrasound data they collected. However, other surgeons who subscribe to different theories may well advocate other options.
Treatment Options
Do Nothing
Dr. Shalhub said that some cyclists choose to make “lifestyle changes” to accommodate the disease. But those “lifestyle changes” usually mean completely stopping riding in the end, because the disease never gets better and the pain with vigorous exercise never goes away. It may get worse, and it may be associated clotting — but nobody knows for sure.
Surgery: The Patch
Dr. Shalhub and her team at the University of Washington have pioneered a surgical intervention that seems to have good outcomes (more on that in a minute).
The surgery goes like this:
- Slice open my abdomen from my belly button to my leg. It’s a big and scary incision. Ick.
- Slice open one of my legs and obtain some vein tissue.
- Slice along the length of the external iliac artery, extending just above and below the branching points.
- Patch the vein tissue into the slice.
- Sew and staple everything up.
After which I would:
- Spend one night in the ICU to make sure the patch holds and I don’t bleed to death in the first 24 hours.
- Spend three to five days in the hospital ward to make sure I don’t bleed to death in the next 48 to 72 hours.
- Spend four to six weeks doing nothing. Well, not nothing: healing all the way to be sure I don’t bleed to death a few weeks along.
- Begin a very gentle recovery process, taking it super easy to make sure I don’t bleed to death later.
Maybe you noticed the emphasis on not bleeding to death. That’s the biggest concern, but there are others: All surgeries have risks, including doing anesthesia, being in a hospital, taking medication, collateral damage (such as to my abdominal muscles or other parts of my leg), and who knows what else. Surgery is scary!
Prognosis
Do Nothing
A person can live without cycling (so I hear), and even if I probably can’t jog, ski, swim, or do any other vigorous exercise that requires high heart rates and lots of blood flow to your legs, there are plenty of other fish in the sea. Lots of other activities a person with this condition can do: Anything that doesn’t require high heart rate, really. Since my artery at rest is perfectly normal, I’m fine under most normal circumstances. (Okay, sometimes my foot feels tingly or achy, and I do get soreness in my left upper thigh/abdomen area pretty often, but that’s bearable.)
But to me, at age 35, staring at the majority (hopefully) of my life having my fitness options narrowed down and down and down as my leg gets worse and worse and worse… It’s a pretty dim future, even if there are other things I could do with my time.
Surgery
According to Dr. Shalhub, people who get the surgery recover well, resume cycling or running, and never have to come back. “It’s hard to hold them back,” is the way the nurse practitioner put it. The disease hasn’t reoccurred in her patients, although admittedly they’ve only done this surgery on some seven or eight people over the last decade.
The patch procedure is actually the same thing they do on people’s carotid artery (I don’t know why and I hope I never find out — a carotid patch sounds terrifying), and it’s a well-established procedure with well-known outcomes. She said, “any surgeon can do the patch.” Surgeons, I notice, are supremely confident. Also, when you have a scalpel, apparently everything can be fixed with surgery.
Anyway: The advantage of patching the area is that, after the artery has healed, it acts exactly like a normal artery. The wall can expand during exercise, as it should, preventing the recurrence of symptoms.
What I’m Thinking Now
You may recall that when I first started talking about this, the research I had done led me to believe surgery presented an unacceptable risk. Now, having talked with Dr. Shalhub, and understanding much better the (possible) mechanism causing this issue, I’m more seriously considering the surgery.
She’s presenting this as a one-and-done deal: Do the surgery, recover, and get back to my normal life, probably forever (there’s no data yet on “forever”). Her surgery has an excellent success rate, and no long-term side-effects or recurrence of symptoms.
That’s starting to sound like a tolerable risk to take, to get use of both legs back. I could bike commute more than a couple days a week. I could ride without pain at the pace I choose. I could not worry about my leg position and blood flow. My legs would have the same size muscles on them. I wouldn’t have this constant ache in my leg/abdomen and my toes wouldn’t hurt. I could take up jogging, or run after Benji for more than a minute.
I don’t know yet… But it’s sounding like a much more plausible option.
On Friday, November 8, Dad and I fly to Stanford to meet with Dr. Jason Lee, the self-described “national expert in EIAE.” I’m doing a CT scan there and then we’ll see what he has to say. It’ll be interesting to see what’s different between the way he and Dr. Shalhub describe the mechanism of the disease and its treatment.
Stay tuned!