Yesterday Dad and I flew to California to meet with Dr. Jason Lee, the nation’s leading expert on EIAE. He estimates he’s done surgery on 60 to 70 athletes with this condition. That’s far more than the scant half-dozen (max) Dr. Shalhub has seen and operated on.
Here’s what I learned about EIAE and my options at Stanford.
TL;DR: Skip to the summary.
First, I had an appointment to do a CT scan a couple hours before seeing Dr. Lee. He has a specific CT protocol to look for what he thinks causes the symptoms (see below!).
In the CT scan, they first took pictures of me lying flat – a normal scan position. Then they took pictures of me in a fetal position, but laying on my back. So I was laying on my back with my legs pulled up as tight against my chest as I could (not real tight, since I’m not flexible), and then they strapped me down like that, just to make sure I didn’t move. X-rays don’t do well with movement. This second set of pictures simulated a bicycling position, trying to see if the artery changed when I was biking.
Each time they took a picture, they injected this iodine contrast dye into my arm. I highly recommend avoiding that if you can. The dye not only makes you feel hot inside, but makes it feel like you’ve peed your pants, puts a nasty taste in your mouth, and burns like a hot poker going into the vein initially.
A couple hours after the scan, Dad and I met with Dr. Lee to review CT images and discuss the results.
He showed us the right side external iliac artery (I’m going to abbreviate this EIA) had a diameter of 7.4 mm, while the left one narrowed to 4.1 mm in the biking position* . This is interesting, because the scan was at rest. He didn’t say what the diameter of my left EIA was when I laid flat.
Based on this scan, he attributed the pain—claudication is the fancy medical term—to just the difference in artery diameter even at rest. The left EIA is 25% narrower along its length and he thinks that makes the a difference when I’m riding. As for cause, he thinks the psoas muscle contracting against the artery repeatedly has caused the artery wall to thicken, which is the artery’s response to injury.
This is very different from what Dr. Shalhub hypothesizes: She thinks the artery vasoconstricts during exercise, but can’t explain why the artery might do that. Perhaps it has to do with damage to the wall caused by high-pressure blood going around the curve of the artery. Dr. Lee says that although they undeniably got a good picture of the artery spasming, he wasn’t convinced this doesn’t happen to lots of people with normal arteries. He points out that, while he has zillions of baseline scans of this artery (as an incidental to scans looking for other conditions) and thus has a really good idea what the artery should look like, Dr. Shalhub’s team doesn’t do these ultrasound exercise tests on regular people, so they don’t have any normal baselines.
Interestingly, neither Dr. Lee nor Dr. Shalhub seemed very interested in each other’s theories. Neither person bought the other’s hypothesis, and neither was interested in determining what really was going on. It’s a bit like divorced parents who won’t talk, leaving us as the poor middleman kid going, “But, Dad, Mom said…” and then “Mom, Dad said…”
*Actually, Dad and I weren’t totally clear on which image we saw. He showed us a cutaway view of my torso and followed the artery from the aorta down to the EIA. I assumed it was the image from being in a biking position; Dad thought it was me laying flat.
Dr. Lee emphatically stated that doing nothing and continuing to ride wouldn’t hurt my leg. He explicitly said, “You won’t have to do some leg amputation in the future if you don’t do surgery.” So that’s a relief…. although I don’t quite understand how it wouldn’t get worse if the psoas muscle continues to damage the artery wall every time I pedal.
As for the rest, it’s essentially the same as what I said my previous post after my UW visit.
Surgery: The Patch
Interestingly, although he and Dr. Shalhub pretty stringently disagreed on cause, they actually agreed pretty closely on surgical treatment. Dr. Lee described it like this: “If you have a pair of pants that are too tight, one way you can make more room for your leg is by slitting the fabric and adding a patch with different fabric to make them bigger.”
In his case, he uses an “artificial material based on cow tissue” for the patch. As far as I could tell, that’s the big difference between his operation and Dr. Shalhub’s. Dr. Shalhub uses tissue from one of my own veins, which means it eventually integrates into the artery. The artificial patch never would. I’d like to know more pros and cons of each of those materials.
Recovery would involve one night in the hospital for observation, then two nights in a hotel near the hospital. Then I’d come back for a follow-up with him and fly home that day or the next day. At home, I’d spend four weeks walking gently, then four weeks running on a treadmill (I don’t have a treadmill…maybe gentle trainer riding would count?). After eight weeks, I’d return to Stanford for a final follow-up with Dr. Lee, after which I’d be free to get back to riding as hard as I want.
Pretty much the same as what I said my previous post after my UW visit.
Surgery: The Patch
Dr. Lee said he’s done this on dozens of athletes over the years, and with 5-year follow-ups the patients all look good. People don’t reject the patches, and they recover well. Like Dr. Shalhub, he said that this patch surgery is absolutely nothing special as far as surgery goes—they do stuff like this all the time on old people. The big difference is that I’m young, healthy, and have really good odds of recovering with little to no side effects.
Of the 60 to 70 athletes he’s done the surgery on, Dr. Lee said 75% return to peak maximal performance. The other 25% don’t return to peak performance, but he attributes that to the fact that athletes like Olympians and U.S.A. Cycling team members use their bodies so hard, that something else breaks. Basically, the surgery works, but something else goes wrong—they’re held back now not by the arterial issue, but by a bum knee or hip or back or whatever.
I do like the fact that he’s done this so many times. One area I noticed this experience was that he said for women he tries to make sure the abdominal muscles are repaired well and that the scar is hidden as well as possible. Thoughtful; I thought I might have to kiss my bikini-modeling career goodbye before it ever started! I guess men don’t get that kind of consideration.
Overall, as with Dr. Shalhub, there are regular risks of surgery and staying in a hospital, which always exist but are pretty low for someone as otherwise healthy as me. Assuming I followed the recovery instructions diligently, it seems likely I’d be able to make a full recovery and resume riding as hard as I wanted after a couple months—a very similar prognosis to Dr. Shalhub’s procedure.
What I’m Thinking Now
I want to have the surgery, and I’m going to try to schedule it for as soon as possible to try to get it done before the New Year. This gives the double benefit of keeping all the major medical expenses in one insurance year and giving me the entire winter season to recover. It sounds like I’ll need it.
The question then becomes, where do I do it: Stanford or the University of Washington
|Experience||Doctor has treated 60 to 70 patients, including professional and Olympic-level athletes||Doctor has personally treated fewer than 6 patients and clinic has seen 8 patients over the last 10 years|
|Theory about Cause||The psoas muscle expands against the artery wall and damages it slightly every time. The artery wall responds by thickening, and this thickening causes reduced blood flow and pain while riding.||The artery wall does sustains some damage that results in slight wall thickening, possibly from high-speed blood being pumped around the curves in the artery. But arterial wall vasospasms really cause of the acute-onset claudication. Not sure why the vasospasms occur.|
|Proposed Procedure||Patch angioplasty: Patch artery with some kind of cow-based artificial tissue to make it 150% larger||Patch angioplasty: Patch artery with vein tissue taken from another part of my leg. Patch tissue integrates with arterial tissue in time and rebuilds wall. Incidentally, that section is enlarged.|
|Recovery||– One night in the hospital|
– Two nights at a hotel in Palo Alto
– Eight weeks slowly getting more active
|– One night in the ICU|
– Three to five nights in the hospital
– Four to six weeks slowly getting more active
|Long-Term Prognosis||– Has done 5-year follow ups and athletes don’t have any further complications. |
– 75% of patients return to full peak activity.
– 100% of patients have successful surgery.
|– Has done 1-10 year follow-ups. The first two patients treated required additional follow-up procedures, but the rest of the patients had no additional complications.|
– 100% of patients have successful surgery.
|Other Consierations||– Travel required: Have to fly to Stanford, stay in a hotel, and fly home. Have to fly back for follow-up visit 8 weeks later. Flying makes me nauseous.|
– Difficult for family to visit.
– One family member would need to take time off to stay with me.
– Doctor estimates he does 10,000 procedures a year, which suggests to me he won’t be real attentive to my surgery. Didn’t ask explicitly.
|– Close to home, easy to visit. |
– Minimal time off required for family.
– Doctor said she’d do the important part of the procedure herself, but other surgeons would do some of the other tasks.
|Hospital Safety Rating||Hospital Safety Grade: A||Hospital Safety Grade: A|
I’m not sure how to process this into a real decision but at the moment I’m leaning towards University of Washington:
- I like the idea of using my own vein tissue and having it completely integrate into the artery wall, but I don’t honestly know the real health pros/cons of cow tissue vs. my own tissue.
- I find Dr. Shalhub’s explanation more convincing from how my symptoms feel — the sudden onset makes sense if the artery spasms closed — versus a problem caused by purely narrowed artery diameter.
- UW is closer to home, so travel and follow-up are easier and people don’t have to take time off to visit.
(As an aside, never again do I want to fly to and from California in one day. I woke up at 2:30 am, left home about 3:55 am; got home at 9:00 pm, and to sleep at 9:30 am. My level of exhaustion has far exceeded 11, so much so that I’m skipping my Saturday ride today in favor of some kind of trainer ride. It’s raining and I have a cold anyway.)