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Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
 
The surgery went as planned. I had the first surgery Aug 14 to repair a narrowing in my left illiac artery. I was in the hospital for 4 days after surgery. The worst part was reactions (Itching) to pain medicine and getting out of bed the first time. I went home to Chicago and 7 weeks later flew back to Cherry for a follow up. All looked good and I was given the clear to start pushing the intensity of training. I bounced back pretty well but then at a race I felt some strange things in my right leg and my gut told me that it was the same thing and I hadn't noticed it due to the severity in the left. Cherry looked through films and confirmed that I had severe kinking in the left iliac artery. I was CRUSHED mentally but decided to go back to VA and let him fix it before the end of the year because we had reached our max out of pocket. Back we went Dec 3rd. Recovery has been slower the second time simply because two open surgeries close together compounds. Now however I am coming off two very successful weeks of training. I've seen some FTP watts and fast 800s with no symptoms. I have electric shock feelings sometimes and weird sensations in my inguinal ligament on the left (he released them both) but Cherry is happy with my recovery. He even let me see a vascular doctor here for follow up. I will see him next fall for a year follow up. I think he likes to follow at a year to keep data. I CAN NOT speak highly enough about him, his staff, the UVA hospital...If you have this problem go to the best. He clearly knows what he is doing, he has a bedside manner that I believe is unseen among most surgeons and I honestly felt totally at ease in his care. I'm taking this year to have a little fun with competition and let my body guide me more than my coach or the numbers on my watch but I feel very strong and so extremely happy when I step out the front door for a run with no pain, it's awesome.
 
Re: Illiac Artery Endofibrosis - I've got it. [davetallo] [ In reply to ]
 
Hey

Just following up on your post after some time here...did you manage to find a surgeon in the GTA area for this? I also went to a vascular surgeon at Toronto General...and he also had the same opinion.

In fact, I get most of my claudication while running...I can sort of manage it whenever it comes on while cycling. My surgeon actually told me to keep running (to avoid making this problem worse by just becoming sedantary) and give up cycling instead.

Let me know. Thanks!


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Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Heidi, was that laying straight or was that in the bent/aero position? If it was in the areo position can you tell me how they did the scan? They didn't know how to do mine so I basically kneeled on the bed and they put a foam pillow under my arms so I could sort of copy my position in the drops (since I ride stock).

Also curious about other folks who had the ABI done; in my case I got off the trainer, took off my shoes and socks, laid down on the bed and then they put the cuffs on my ankles and took the after exercise ABI. Is that how it was done for you guys?

I went through PT but every time I get back on a bike (trainer, fat bike, cyclocross bike, etc) and do any kind of effort (less than 30 seconds of effort) it aggravates and I'm right back where I was at.

Someone suggested just giving up the bikes. I tried that and am unable to run, which is very frustrating considering my artery is supposed to be patent when my leg is straight. However, the tests when it was straight were with normal blood flow. If there is scarring or hardening (which is not showing up on the CT scan), wouldn't the added demand from running create the same issue to a lessor degree even when my leg is straight?

Decided to get a second opinion on the surgery and am working on an appointment with Dr. Cherry (getting him the records). I just feel with a surgery this invasive that a second opinion is important. I'm also curious as to whether or not I might be catching it early (as no scarring shows up) and maybe it would be less invasive because of that.

Let me know how you all had your ABI tests done, and if you had a CT in the aero position, how did they do that? Thanks!
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
I didn't have a CT in the aero position. Mine had been blocked so long that it was obvious just lying flat. It sounds like your ABI was done similarly to mine, assuming they used the cuff and Doppler to pick up the sound. Did they take you up to a high level of exertion before they took the post-exercise measurement? That's critical, and it's also critical that they take it very quickly after you finish. If there was a delay, your pressure could normalize pretty quickly.

Running was always far worse for me than cycling, for whatever reason. My calves would completely cramp up and my legs would feel like tree stumps. I could ride some (albeit slowly) after the onset of my endofibrosis, but I could not run at all.

You're making the right decision to consult with/see Dr. Cherry. That's really the best thing you can do. He is the U.S. expert on this. Good luck!
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
I couldn't really get max exertion-was having trouble catching my breath (had been having unrelated lung issues with bronchitis/pneumonia early 2015 and then bronchitis again November-the ABI was in July). I'm not sure what qualifies as "quick" :) It definitely took at least a couple of minutes to get off the bike, shoes/socks off, up on bed and cuffs on! It actually wasn't bad-it dropped but only to .79 or something like that (going from memory). But was in both ankles and I only have kinking in my right. Bower never explained why I would have decreased blood pressure after exercise in both ankles if only the right is kinked.

Yes, exactly-I can't run because my calves are so tight no matter how much I stretch and my calves & feet cramp all the time. It is super frustrating & sometimes I get so pissed when they cramp just trying to wear 3" blocky heels for work (which is pretty infrequent now because my calves are too tight). I'm also getting hamstring cramps now & then, but nothing consistent and not while running/riding.

Well, maybe I am catching it early and maybe there are some less invasive procedures (like just releasing the artery without shortening it to see if that opens it enough to run? Don't know if it absolutely has to be shortened if I'm willing to give up the bike for running).

Ok, thanks for the info.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Hi Lynne

My ABI and Ultrasound testing were undertaken at the medical diagnostic centre in Brisbane.
I took my windtrainer and bike in.
10 minutes warm up.
10 minutes hard effort. Significant pain.
Ultrasounding was undertaken during the hard effort ( not easily)
After effort lay on bed.
ABI's and ultrasounding was carried out with legs in straight position for 10 minutes. Both Legs.

My ABI's as tested were 0.35 left and 0.38 right. It took around 10 minutes post exercise for the ABI's to even.
EIAE both legs confirmed.
I was surprised because I always thought it was only my left leg as the pain was never as intense on the right side.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Completely forgot to post; had planned to get a 2nd opinion with Dr. Cherry in VA because it just didn't make sense to me to do a significant surgery if there was no chance of improvement on my left side. Ended up not have to go there because Dr. Cherry was able to tell me from the imaging that I don't have classic EIAE. Instead artery on both sides is being severely compressed by the inguinal ligaments. Explained why my left foot feels cold/numb and like I can't control it on a ride or run and also why both thighs feel "light headed". Meeting with Dr. Sullivan on 4/27 to discuss procedure and definitely want to get on the surgery schedule asap. Seems this should be much less invasive and maybe quicker recovery. Feeling very lucky if I'm understanding everything correctly.

Haven't been online much past couple weeks as I tore my meniscus (and have some other damage/issue in the knee) trying to run instead of riding. Fortunately non-operative and it sounds like it shouldn't compromise ability to have the inguinal ligament release. Body and mind have aged a decade since I stopped being able to hit it hard a year or two ago!
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
Eileen, I'm also in the Sacramento area and I had my ABIs (post-exercise: .72 left, .22 right) and CT angiogram done at UC Davis. It's 2 months before the UC Davis surgeon can even meet with me to discuss the scans, and since I'd prefer to have the surgery done by someone with experience, I asked my doctor to refer me to Dr Lee at Standord, but I haven't heard back yet.
Your post, particularly your ab complications, make me concerned about Dr Lee. What was your opinion of him? Did he seem knowledgable and experienced with this type of surgery? Is there more to the abdominal complication than how he performed the surgery?

Has anyone else gone to Dr Jason Lee and is willing to share their experience?
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
I hesitate to say anything because I have no personal experience with Dr. Lee, but the doctor who did my surgery re-did a surgery that Dr. Lee had done in which Dr. Lee hadn't gone far enough past the diseased part of the artery. But my surgeon also referred someone to Dr. Lee who needed to have a full-on bypass (which didn't work, btw, but probably for reasons unrelated to the surgery), and I would hope he wouldn't have made the referral if he had doubts about Dr. Lee's ability. So that's a little bit of a non-answer.
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
Definitely don't waste your time with UC Davis. I had the head of vascular surgery at Davis review my CT angiogram, tell me it was normal (it wasn't), and then tell me he doesn't operate on healthy people. I understand why he said what he did, but it devastated me at the time, because I thought I had no other options, no hope of specifically diagnosing what was wrong, and no hope of getting it fixed. When I found out about Dr. Lee, I was overjoyed, because he gave me hope.

My opinion of Dr. Lee has to be split into Dr. Lee and the Stanford Vascular Clinic. I like Dr. Lee. No, he doesn't have great bedside manner, but he's a surgeon; they're not known as terribly sensitive people. Yes, I did develop a short-term complication (I had a terrible allergic reaction to the stuff they used to disinfect the area pre-surgery and to the steri-strips he used to help close the incision, which caused a lot of blistering and indescribably bad itching) and a long-term complication (the abdominal bulge caused by denervation of my abdominal muscles), but the short-term complication couldn't have been anticipated, and the long-term complication can be avoided if you ask him to do a single longitudinal incision rather than the transverse one he did on me. He is experienced in doing these types of surgeries, and he is a very competent surgeon. He was also quite comfortable consulting about my case with some French colleagues who had seen and worked on more cases then he had at the time he did my surgery, which impressed me.

The Stanford Vascular Clinic is HORRIBLE, or at least it was in 2011, 2012, and 2013. The people who staff it are rude, they cancel appointments at the last minute (which is a costly problem if you do what I did and book a room in Palo Alto the night before given the early morning appointments they insisted on sticking me with), they fail to effectively communicate with Dr. Lee (not once, not twice, but three times, I was asked to come down for ABI tests and given incorrect instructions on whether to bring a bike -- I'd either bring one when I didn't need to or not bring one when I did need to; one time they scheduled me for an appointment on a day they had no one working to perform the ABI test, and another time they scheduled me for an appointment on a day Dr. Lee wasn't scheduled to be there), and they were completely nonresponsive and unhelpful when I asked for help identifying the substances to which I'd been exposed in the operating room, so I could work with an allergist in Sacramento to try and figure out what had caused the horrible allergic reaction. I would advise you to avoid Stanford, not because of Dr. Lee, but because of them. I've had other surgeries since my vascular one (yes, lucky me), and been blown away by the difference between the courteous and professional service I've been given elsewhere, compared to the horrible treatment I repeatedly received at Stanford.

That said, the last time I dealt with the Vascular Clinic was 2013, when I finally gave up. You could always call down there and try to make an appointment with Dr. Lee. If your call is returned within 48 hours and the people you speak to are courteous, they may have cleaned up their act.
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
Thank you Heidi and Eileen.
I have an appointment to do a bike test and see Dr Lee in 2 weeks (he wants me to redo it there even though I did it at UCD). They seemed prompt and organized, so hopefully that means the vascular center has improved. If not, I'll consider trying to go to Dr Cherry in Virginia instead.
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
Dr Cherry's the bomb. Had it both sides. He fixed them both at the same time and am now running and riding faster that ever. Had surgery last July and back at triathlon fully recovered within 6 months. I wouldn't go to anyone but him.
 
Re: Illiac Artery Endofibrosis - I've got it. [Rhonda] [ In reply to ]
 
Hi Rhonda

Great to here it all went well for you. Did you travel from interstate to see Dr Cherry. How long was your hospital stay.
I am seriously thinking of travelling to the US to see Dr Cherry.
Had my first ride for over two years on the weekend. Hurt like hell all the way but really enjoyed being out again on a bike.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
hello
I was really happy to read through the thread and discover other people who have been through the same problem I have. I had the surgery on my left external iliac 4 weeks ago and am looking for advice on how to best return to the bike. My surgeon warned me it takes at least 3-4 weeks for the endothelium to heal, so no exercise at all for that time. After that I should "take it easy" for 3 months.
I have been working with my physio to keep my back and legs in decent shape, and my coach gave me a progressive bike schedule. it starts with 20 minutes every second day and gradually builds over 2 months, all easy, no hills or sprints. Has anyone else had any return to biking advice?
 
Re: Illiac Artery Endofibrosis - I've got it. [eileenb] [ In reply to ]
 
I would give it more than 3-4 weeks to heal. I did A LOT of walking for the first few weeks and then was in the pool maybe 3-4 weeks post surgery (with a buoy and easy). I think it was around 8 weeks until I was back on the bike. You definitely want to be cautious with your return to the bike.



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Re: Illiac Artery Endofibrosis - I've got it. [eileenb] [ In reply to ]
 
I agree to more than 4 weeks. My doc said trainer only at 6 weeks and add light jogging and going outside on the bike at about 8 weeks. Still all VERY EZ though. About 3 months out I felt good. About 6 months out I returned to everything with no limitations. Don't rush it.
 
Re: Illiac Artery Endofibrosis - I've got it. [70.34me] [ In reply to ]
 
Bumping this up to see if anyone has had successful experience in talking/surgery with this condition in the GTA area. Any hope out there for me?


Duathlete by choice?
http://parigari.blogspot.ca/
http://www.3sixty5cycling.com/ Ask me for a $50 discount on 3SIXTY5 Wheels!
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
I'm not in that area but have had the surgery. Feel free to ask/pm me in questions you have. Hang in there. I feel for you.



https://twitter.com/mungub
http://benmunguia.blogspot.com
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
(Sorry I can't figure out how to post without replying to someone!)

I know this thread has gotten very old, but hoping to get some feedback on post surgery experience.

I had surgery 10/25. I was very early stage, so no scarring, arteries were beautifully intact (for which I am immensely grateful). However, the inguinal ligaments on both left and right were quite tight which effectively caused the same problem that a kink would cause in that it partially obstructed blood flow bilaterally when bent forward as you would on the bike, to sort of simplify it.

All well and good-I had surgery to release the ligaments on both sides (fortunately able to do it in one surgery), and surgery went very well.

The question I have is about the subsequent scarring. The scar from entry on both sides is still very prominent and thick 8 weeks later, but not painful. However, the area where the ligament was released a bit more toward the center of my body and deeper also has thick scars that I can feel. To keep this somewhat short, the scars are causing pinching pain while riding and aching for quite a while after the workout. I knew going in that scars can be a complication, and I am ok with that. But am wondering if other folks had thick scars and also if they were causing pain as you began to train again?

It may be that no one can answer this as obviously I didn't have a graft so the recovery was much shorter and less complex, so I'm starting training again pretty quickly. Although it's only been a two weeks since I was released to train, I was able to do rides two days in a row this week with climbing (using a smart trainer in Zwift, so it simulates the climbs very realistically) and was still able to go up the stairs from the basement even the second day, which was not the case at all before the surgery. The only reason I didn't do a third day with climbing was because my knee had some issues (tore the meniscus in March, had surgery to repair it in July and it's not fully healed until the end of January), not because I couldn't make my legs move and not because they were burning. Based on heart rate, even with a lack of fitness they were both good workouts, but maybe since I've been sort of couch bound since March I'm not fit enough to know if the pre-surgery problems have resolved with the release. Little afraid to get my hopes up too high!

Anyway, hoping maybe someone has some experience with painful scars and possible it resolves the further you are out from the surgery? Maybe this is just something everyone has when you have surgery in that area and are hopping on a bike. Thanks.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
I remember feeling like I was going to bust the incision site open if I stretched too much. The scar is a funny thing and it definitely leaves some phantom pain for the first several months. I was afraid to stretch out, thinking it would rip the scar. Don't worry. It will get better, and I think it's normal to feel some pain around that area.

Take it easy. Seriously. Go way slower and be way more cautious than you think. It's not worth messing up.



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Re: Illiac Artery Endofibrosis - I've got it. [mungub50] [ In reply to ]
 
Ah. I figured the 6 weeks of no activity was for the scar to 100% heal. I know to use pain as a guide, but I also know that there are some things that are just going to hurt and you aren't going to make it worse if you push through. Just can't decide if the scars are one of those things you learn to live with. Thanks.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
You will want to be sure you don't develope a lot of scar tissue in that area. Do a lot of massage, ART, etc. to soften the scar and break up/prevent scar tissue from forming. It might be uncomfortable initially, but you really want to keep the tissue mobile. By 8 weeks post surgery you should fine to at least be starting with some gentle cross friction massage.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I was able to do that with my knee, but we started within a week of that surgery so I thought it was too late. I will definitely do that now! The only issue I see is that I can't get to the scars inside, just the scars from the entry which are in a slightly different location (more toward my heart whereas the scars inside are more toward my groin. I feel them when they ache and I can press down and feel the hardened areas). No clue how you deal with internal scars you can't massage. (I'd ask all of this of the surgeon, but I just had one follow up not long after surgery and you don't make follow ups to figure out how to progress on training!). Also, with this surgery there was no PT at all (I had months and months of PT for the knee).
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
hannahw - Did you have your surgery with Dr. lee at Stanford? I am seeing him next month for an ABI test. I wondered how your surgery and recovery went and what your opinion is of dr. lee. Thanks for any feedback.
 
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
 
Hi Michele, I'll give you a brief overview of my whole experience with Dr Lee and Stanford. Overall, I'd do the surgery again, but somewhere else with someone else.
Office: The office was pretty disorganized and frustrating. Someone else said this earlier, and I hoped that the office would have improved, but they haven't. Stuff like not telling me whether I need my bike (you don't for the ABI--they want you to use the stationary bike), changing my appointment time so that I needed to get a hotel in order to make it, giving me inaccurate post-surgery recovery information, not calling me to schedule an appointment they were supposed to, changing the time of my surgery the day before, and not bothering to tell me that Dr Lee wasn't around the day of my appointment. I was literally in tears of frustration at my most recent visit. At my first visit, Dr Lee seemed informed, competent, and reassuring, which is why I had the surgery with him.
ABI test: They're going to put you on a stationary bike and increment the resistance a 1/4 turn every 3 minutes. If you're like me and your symptoms peak when you do high-intensity efforts, this is ineffective, because you can't reach that peak with such a slow ramp. I talked them into letting me ramp it to full intensity once I started feeling leg sluggishness.
Surgery & Hospital: The anesthesiologists and nurses in the hospital were excellent. Surgery could have been better explained to me in advance. You will wake up with a catheter and will not be able to leave the bed until the next day--neither of these things were told to me in advance. The day after your surgery, start asking to leave immediately--it took them 4+ hours to round up the approvals for me to leave.
Recovery: Recovery was actually way better than my expectations, but I am 27 now and was 26 then. The only prescription pain meds I took was what they gave me in the hospital, and then it was just minimal over the counter stuff after that. I took a week off work and it took about that long to be able to walk around easily, but I still got tired quickly. After 6 or 7 weeks, I started cycling again (per Dr Lee's approval). It didn't work to let pain be my guide at that point, because I couldn't feel any pain from the surgery. So I just ramped up slowly.
Relapse and Angioplasty: After 4 or 5 more weeks, I started having symptoms again. I went back for an ABI and CT scan at the end of December. My ABI was .3-something in my right leg again, and when Dr Lee called me (because he missed my appointment), he said that my CT scan showed a much smaller narrowed segment below where the previous portion was, and under my inguinal ligament. He recommended a balloon angioplasty, which he said was appropriate because this narrowed section was shorter than the last one, there would be too much scar tissue for open surgery again this soon, and it was a super-minimal "15-minute" surgery that would likely provide relief for me. I scheduled the surgery for a week later, which was literally before they could send me a copy of my CT scan. After I had the angioplasty (*not* a 15-minute surgery or even close), I got my CT scan report and read that the main conclusion was that I had a new arterial dissection (tear in the wall). Dr Lee never mentioned the dissection--he made it sound like more of the endofibrosis. It also is of similar length as before, not significantly shorter like he said. Ultimately I felt like he either lied to me, or was seriously forgetful about my case when communicating. I'm very upset with the angioplasty for my dissection, because I would not have agreed to that as a treatment. I requested a full copy of my medical files and now I'm looking into getting a second opinion somewhere else.

I'd be happy to tell you anything more, or give you my email if you want to communicate privately. Don't give up! There is a solution out there to get your leg fixed up =)
 

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