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Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
HR doesn't go up (and that stuff is very recent, although it is making it hard to be on the bike enough to try to maintain the muscle/fitness I have). The feeling like I have exhausted, bloodless legs (like a ton of lactic acid) after doing any effort has been consistent and had been slowly progressive until about a month ago when it fast tracked itself (the first time I noticed it was in 2006, but it was very rare then). Can't tell if the constantly sore calves (like I'm on the recovery day from weight training every day), left leg feeling like it's falling asleep frequently throughout the day, and light headed issue is related. Maybe all vascular? I'll find out on the 23rd!
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
That actually does sound more vascular. Hopefully, you'll have an answer soon!
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
Can anyone provide me with Dr. Ken Cherry's email?
Re: Illiac Artery Endofibrosis - I've got it. [london knight] [ In reply to ]
He's at University of Virgina (UVA). His email address is on the page below. If that doesn't work for some reason, try googling further.
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
Little Red

Do you recall how long after the surgery could you do a brisk walk....say 2 miles.
How long after the surgery could you ride a bike......small rides.
How long after the surgery could you compete.


Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
Honestly I would have to check back in my training logs to give you an accurate answer of exactly when I started running and cycling. I was walking right after surgery - but I wouldn't call it a brisk walk, that was probably at least a couple weeks after since those first couple weeks you really need to make sure the graft heals and don't want to do anything that could cause a tear or damage. I know I was in the pool in just under 2 weeks and it was less than 2 weeks after that I was able to do the full masters workouts again. I know by 6 weeks I was running and riding - nothing fast or long - but doing both. I had my surgery a couple days after IM Louisville and I did some late November and December running races.
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]

i am thinking about surgery October 2015 and looking to ride in Belgium in July 2016.....not difficult riding but around 60 miles each day for a week.
Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
I'm not little red, but I had the same surgery she did. Brisk walk was about two weeks after surgery. Back in the pool at three weeks (once the incision was totally healed), but VERY easy. My surgeon wanted me to stay off the bike entirely for six weeks. Also no running for six weeks. I had my surgery done in late July of 2011 and walk/jogged a 10-miler in mid September. Back racing in 2012. You should have no problem at all riding 60 easy miles a day in July '16 if you have your surgery this October.
Re: Illiac Artery Endofibrosis - Do I have it? [Eileen] [ In reply to ]
Thanks Eileen

great feedback.

now just have to select the surgeon.

Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
You should be fine by July if you have surgery in October. I would say I was back doing regular racing and training by December and I had surgery in the first week of September. I had a pretty aggressive race season the spring/summer/fall after my surgery including another Ironman. The good thing about having the surgery in the fall is you have the "off season" to recover and build back up for the next season. Be sure when you start back that you address any muscle imbalances that may have developed from not having full blood flow to your left leg!
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
Thanks Little Red

I shouldnt have muscle imbalances as I have EIAE in both legs but i will be sure to check everything.

Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
I had EIAE in both legs as well and had all sorts of muscle imbalances, some of which I'm still addressing 4 years later. Granted, my arteries were blocked for 25+ years, but I wouldn't assume its presence in both legs rules out muscle imbalances. There are consequences to muscles not getting adequate blood supply. Also, the imbalances would be within each leg.
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
Thanks Heidi

understood... i can beleive there may / will be imbalances because my left leg is also worse than my right leg.
Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
I am traveling to see Dr. Cherry on the 13th with surgery scheduled potentially for the 17th. Can anyone let me know what to expect? I'm specifically concerned with how long I should plan on being in the hospital after and how limited will I be in the days/weeks after the surgery.
Re: Illiac Artery Endofibrosis - Do I have it? [Mmiller] [ In reply to ]
 I went to see Dr Cherry for surgery in June of 2013, this was my schedule.

June 12th > I met with Dr Cherry and an intern. We went over my records and discussed the prior two surgeries that had made the condition worse. I told him I believed I had it in my right leg as well. He agreed to have them take a look at the right leg when they did the angiogram. After that appointment they had me go downstairs and get registered in to the hospital. About an hour after that I had the angiogram performed on both the right and left leg. Dr Cherry came in to see me right after the angiogram and confirmed what I had suspected I did have it in the right leg as well. It was decided then that he would perform do the grafts on both sides during surgery. I went back to my hotel that afternoon. That evening I went back to the hospital and spent the night.

June 13th > I went in to surgery at 7:00 AM , I woke up from surgery at around 7:30 PM, surgery lasted 8 hrs . Dr Cherry did a midline incision and another incision on the right side from the iliac to the femoral artery because the endofibrosis was there as well.

June18th > I flew home to Seattle and don't remember much of the trip home. I could not walk more than a couple steps at that point so we used a wheel chair for the trip home.

Once home I was in bed for a week flat on my back . I was able to slowly walk about a mile within a couple weeks. 6 weeks after surgery I could get around pretty easily but was still very sore. 8 weeks I started some PT and tried some very easy jogging. Late Oct I tried some cycling and have cycled off and on up until now.

Everyone's experience seems to be a little different. In my case I had this for close to 6 years before I finally figured out what the problem was and then had two surgeries that made the condition worse . My recovery and how I felt after each one of the surgeries I had was different.

Hope this helps.

Re: Illiac Artery Endofibrosis - Do I have it? [Mmiller] [ In reply to ]
Dr. Cherry didn't do my surgery; hopefully more of the people who traveled to see him can chime in. I had both of my iliac arteries bypassed at the same time, so a midline incision with two smaller incisions in the groin area. I think I was in the hospital for two and a half days; was walking gingerly around the hospital unit by the second day, although the incision area was still pretty painful. I don't remember the specifics, but I think I was walking around the block within a week and doing longer walks within a couple of weeks. I was off work for 6 weeks. During that 6 weeks, I spent a lot of time in bed because of how tired I was (presumably a combination of anesthesia and blood loss after-effects), but I didn't really feel bad. Any pain is related to the healing of the abdominal muscles around the incision.

I've addressed time back to activity above, when I remembered better. I think I was on the trainer at 6 weeks, cycling outside around 8 weeks, did a hilly century 6 months later. My doctor specifically wouldn't let me swim for 6 weeks. There was a reason for that but I don't remember what it was -- something about stress on the incision and grafts in the freestyle swimming position. My standard caution: don't push yourself to go back to activity too quickly; follow Dr. Cherry's orders. You don't want to mess this up.
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
Hello community,
I am facing a patch angioplasty for 50% stenosis of the right External iliac artery and a complete bypass graft for 100% occlusion of the left external iliac artery due to severe endofibrosis. The section of artery on the left I am told is quite large/long, but no idea what that actually equates to. I am located in Mpls, MN and would love it if someone could recommend a Dr. in the Twin Cities who has experience specifically with athletes. I have consulted with two great surgeons so far, one at Abbott NW and the other at HCMC. But I believe both of these surgeons are accustomed to your more typical vascular patients, if you know what I mean. Both however have performed over 100 patch angioplasty and complete bypass graft surgeries so I I do feel comfortable in their capabilities.

One doc suggested harvesting a piece of vein from the groin/thigh region to complete the patch angio on the right. This would require two incisions on the right. The other doc suggested the use of bovine pericardium, so I would have only the one incision on that side. Anyone out there have experiences, pros/cons, thoughts on the two materials or about avoiding another incision? I think someone commented on this at some point....

On the left both docs have concluded a bypass graft is necessary using artificial ptfe or dacron. The difference is that one suggested leaving the section of occluded artery in place and just bypassing around while the other would plan to remove that long clogged portion of the iliac. Anyone out there had 100% occlusion and had the blockage left in place while bypassing around? That seems to be less common and I found it kind of surprising.

I just turned 30 a month ago and am not too thrilled about being faced with this, especially after watching YouTube videos of the procedure ;) I love biking. A lot. For the previous 6 summers I was riding an average of 300mi. a week as well as racing a handful of various distance triathlons each season. I also race road, gravel, cyclocross, and love going for the 150 and 200mi. events. I also XC ski which I was finding extremely difficult last winter - now I know why. The condition has been progressing for the last couple years but I had a severe drop-off this spring which led to all the frustrating doc appts until I discovered the condition through my own research. testing ensued and here I am. I should also note I have a partially torn labrum in the left hip and scar tissue, bone spurring and signs of damage in the right.

Anyone out there who regrets having their procedure(s)? Anyone having negative experiences 2,3,5 10 years down the road?
My apologies if I am repeating any of the earlier conversations here, but would love to hear from someone about my age who was able to return to 100% form and race and 100% intensity. My legs have been limiting me for the last 3-4 years, not my lungs and I'm ready for that to change.
Re: Illiac Artery Endofibrosis - Do I have it? [cyclomanic] [ In reply to ]
There are not many surgeons who work with athletes with this condition, or are familiar with IAE in athletes. Yes, your typical vascular patient is not a young and healthy endurance athlete. I'd like to think that a skilled vascular surgeon could do this surgery successfully, but I would (and did) prefer to go to an expert who has done this surgery on countless athletes. I lived in Atlanta at the time of my surgery and traveled to Charlottesville, VA to have Dr. Cherry at UVA perform my surgery. He is considered the expert in the US. I believe one of the other expert is Dr. Lee at Stanford. You might be able to contact him to see if he can refer you to a surgeon in your area, or go to the best and travel to have him perform the surgery. If you do a google search for Dr. Kenneth Cherry you should be able to find his contact information. And no, I don't regret having the surgery for a second and for what it's worth, I was in my 30s when I had this surgery. It allowed me to get back to doing what I love!
Re: Illiac Artery Endofibrosis - Do I have it? [cyclomanic] [ In reply to ]
There was someone above (lynne955) from the Minneapolis area who was searching for a local vascular surgeon related to this condition and found one. You can try replying to one of her posts, with the hope she gets a notification email and responds, or you can send an email to Dr. Ken Cherry at UVA, who was with Mayo Clinic and (apparently) has a surgeon relatively local to you that he refers to, which is how lynne955 found her surgeon. Dr. Cherry's web page is linked in a post above. Absolutely no regrets from me about having the surgery, but I do know someone for whom it was not successful. Joe Dombrowski is a little younger than you and recently returned to the pro peloton after a graft, although only one leg. I had both done as well and have had a good return to form, but I'm old and had it for a very long time, so there's no way to tell how I compare post-surgery to what I was before it started. You might want to read through all the earlier posts, as there is quite a lot of information accumulated there.
Post deleted by Flick30 [ In reply to ]
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
You really need an ABI, using your bike on the trainer for the exercise part. That is likely to give you the most immediate (and cheapest) info.
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]

Yes i am in Brisbane and I have also had an appointment with Dr Bell who I know has had good experience with EIAE.

to determine if you have EIAE you will need to have your ABI done before, during and after cycling.

This is how mine began.

ABI test before ride. ABI's OK.
15 minute warm up medium intensity. ABI's undertaken during pedal stroke. ABI's uneven.
High intensity. I think i rode for around another 15 minutes where i put myself in the hurt box. Heart rate maintained at around 160-170bpm Intense pain in both quads and calves.
Off wind trainer and straight on bed. ABI's undertaken every 2 minuets for 10 minutes. ( i was helped onto the bed quickly with both shoes still on )
At 0 minutes ABI's around 0.35 for both legs ( still in intense pain)
ABI's recovered every 2 minutes.
At 10 minutes ABI's around 0.9 so nearly normal.
Conclusive results backed by surgeon in Brisbane and then Dr Bell. EIAE both legs.

My initial ultrasound was clear as was my CT scans.
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
Thanks for your info. I always go into self doubt mode when tests come back clear. Did Dr.Bell organise your ABI or did you have this done before visiting him?
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Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]

No i was first seen by a sports specialist Dr Richard Brown here in Brisbane who suspected that the cause of my issues were EIAE. I was sent for CT scan + normal ultrasound.
After negative / normal results he then sent me Queensland Xray diagnostic centre to specifically test for EIAE.
I had to take my bike and wind trainer because they only had running machines.

After the tests they provided me with copies of the report and all the ultrasound images that were taken during the tests.

I sent one copy to a Vascular Surgeon here in Brisbane and after his consultation which was " As you not a professional athlete I would recommend you stop cycling / sports because you have EAIE " or words to that affect. I then, a couple of weeks later sent all information to Dr Roger Bell in Melbourne. I didn't need any further testing as the results were conclusive.

If you don't mind me asking how old are you..... and are you a competitive sportsperson.


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