Iliac Artery Endofibrosis

There is a Cochran review I'd read if I were, on the subject. As you likely know, the etiology is multi-factorial. Given that the surgery appears not to have worked, this may be the new normal for you. The condition causes a decrease in flow to the working muscle, which results in a symptom called intermittent claudication......pain, cramping, fatigue typically in the calf as the imbalance between flow and O2 requirements exceed the available supply due to the exercise. Its typically caused by PVD but in your case, a mechanical stenosis. I published a case report some years ago about a guy who ran the Chicago Marathon with complete blockage of both superficial femoral arteries (imaged by digital subtraction angiography). He was able to do this because he pushed his running, developed ischemia in his working muscles which was a stimulus for collateral blood vessel development. The collateral's completely took over for his diseased arteries. One caveat............he had to do a long slow warm up, so as to vasodilate the collateral's.........they are much smaller resistance type vessels and won't completely compensate. Subsequent studies I did validated the ischemic stimulus being required to stimulate the collateral growth..........so you have to train that way, IE push the legs into the point of pain, again and again. You're not going to kill the skeletal muscle, the stimulus will result in collateral blood vessel development. As to the flow they say you now have, did they image that at rest or under post exercise conditions? In order to assess flow, it has to be post exercise. I'd see if they can do a resting and post exercise ABI, which will tell you what your exercise flow characteristics are and you can also serially track this over time as you train.

Any idea how long it might take to develop the collaterals?

interested party wrote:

Any idea how long it might take to develop the collaterals?

In moderate to severe PVD, using the training methodology I described, blood flow to the lower extremity was 40% higher in about a month. In many cases this was also associated with a marked reduction in PVD symptoms (pain when walking). Also, interestingly what I found was that when the symptoms of PVD subsided some study participants started to experience symptoms of CAD during physical activity.........they could now exercise more due to their leg pain going away and then started to experience angina. There were no ischemic ECG changes on their initial stress test because they couldn't achieve a HR and BP high enough to elicit an ischemic response in the heart. And yes, colaterals also form in heart muscle as well in response to ischemia...........assuming the ischemia does not precipitate an MI.

Yes, I had surgery for this back in 2009. I traveled to Charlottesville, VA to see Dr. Kenneth Cherry at UVA for surgery. I had issues with both my femoral and iliac artery. Both were cleaned up and patched. He also released my ingiunal ligament since that is what was compressing the arteries and causing the issue when I ran and cycled. I have not had any issues since. He is the doctor in the US to see for this. He is the go-to surgeon for this issue for cyclists and triathletes. Not many vascular surgeons are familiar with this issue in athletes and Dr. Cherry is the expert. There is another doctor at Stanford who trained under Dr. Cherry, but I don't recall his name. Go to the slowtwitch.com forums and do a search for Iliac Artery Endofibrosis and you will find a very long thread about this. I would recommend doing a google search for Dr Kenneth Cherry at UVA and reaching out to his office. This is the email address and phone number I have for him, but I don't know if this may have changed: kjc5kh@virginia.edu; phone: 434-243-7052. When I got my diagnosis I emailed him on a Saturday and he replied Sunday. Even if you can't travel to UVA he might be able to recommend someone closer to you. I lived about 800 miles away from UVA but it was well worth traveling to have this surgery done by the best.

Looks like you had a good experience with the surgery..........as you said, the key is finding someone experienced with the diagnosis as well as the procedure.

Might also take into account that your Chicago time was fourteen years ago.

How long is a long slow warm up to develop assist in developing collaterals? If I do a 1.5 hour session, how much of that can I use for warm up?

I claudicate at around 154bpm and currently I do a 3 min run max and walk 1.5 min. I claudication both legs, calfs and quads.

What I also found is that I get better after an hour in session and I am able to get to higher heart rates.

I did a doppler yesterday and it turned out normal. No blockage was picked up but then it was done at rest. I read a story where an athlete explained that they could not pick up endofibrosis using dappled but after doing evoking claudication they picked up a dissection.

I would like to try hard to develop collateral because no doubt my flow is restricted and the tests are just taking too long. Like everyone I have seen a cardiologist too and I have done blood tests and all that.

The warm up should be progressive, IE slow to faster (walk to run) over about 15 to 30 min, however this is variable based on the individual, IE the percent of stenosis and the existing collaterals. If you're running, an hour to obtain complete cessation of symptoms would also not be uncommon even with good collateralization. In order for the stenosis to be detected, if less then 70% or so, there needs to be a post exercise Doppler done. Only then will a drop in flow be registered.

One of my all-time favorite threads