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Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
Dr Cerry is the BEST in the country........I got a Patch a few years back. extended my cycling career when I thought it was done-ski.

Flew out from CO to have it done.....PM me if you have any questions.
 
Re: Illiac Artery Endofibrosis - I've got it. [Beachboy] [ In reply to ]
 
My hopes are so high. Thanks for all the advice and support. I also can't believe that clearing a blockage from any artery is not a necessity. About the same time as the cramping in my in left leg started, I had to go on BP medicine. I can't help believing the two are not related. Also if the blood is not going into my leg when it needs to, is it backing up during my running and causing pressure on the arteries above it? These are things I just wonder about.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I just met with my surgeon today. I am so thrilled that I found him. He has never done this surgery before although he has 27 years experience. However he called Dr. Cherry and talked to him extensively about the surgery and what to expect. I have talked with my surgeon on the phone several times. He is so personable and wants to do what is best for me. My ABI in the left leg was .7 after exercise but had been 1.02 at rest. My CT scan showed a narrowing of the external iliac artery. Also, Dr Cherry and my doctor both agree that my problem is probably because my exteral iliac artery is a lot longer than most people. I hope to schedule my surgery in the next few weeks. The sooner the better.

I was getting back to you again because my doctor says I will be pretty sore. He is using a mid line incision which means I will be very sore. I believe that is what you had also. Do you remember how long you were really sore. I'm wanting to travel (by car) about 4 weeks out and I was wondering if you thought I would be okay to do that. My doctor feels I may not want to do that yet. It will be a 9 hour drive. Also, how long were you off from work. My doctor says 6 - 8 weeks. Just wondering. He is going to be very conservative about letting me run. Probably 2 months before I can run but he did say I could walk. Hoping to be ready for racing next spring!
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
jflorance wrote:
I just met with my surgeon today. I am so thrilled that I found him. He has never done this surgery before although he has 27 years experience. However he called Dr. Cherry and talked to him extensively about the surgery and what to expect. I have talked with my surgeon on the phone several times. He is so personable and wants to do what is best for me. My ABI in the left leg was .7 after exercise but had been 1.02 at rest. My CT scan showed a narrowing of the external iliac artery. Also, Dr Cherry and my doctor both agree that my problem is probably because my exteral iliac artery is a lot longer than most people. I hope to schedule my surgery in the next few weeks. The sooner the better.

I was getting back to you again because my doctor says I will be pretty sore. He is using a mid line incision which means I will be very sore. I believe that is what you had also. Do you remember how long you were really sore. I'm wanting to travel (by car) about 4 weeks out and I was wondering if you thought I would be okay to do that. My doctor feels I may not want to do that yet. It will be a 9 hour drive. Also, how long were you off from work. My doctor says 6 - 8 weeks. Just wondering. He is going to be very conservative about letting me run. Probably 2 months before I can run but he did say I could walk. Hoping to be ready for racing next spring!

I'm suprised that they would do the surgery with an ABI of .7. I've had the surgery done twice. My ABI was .35 in the left leg and .78 in the right. The norm is around .7-.85. What was the ABI in the non-affected leg? If the EIA is long it will likely get worse, so maybe that's the reason for the surgery.

At any rate you should be fine in four weeks. Hopefully your doc will do a muscle splitting incision (not sure if that's the right term) that really improves recovery. Most surgeons will just cut straight through all the muscle fibers in one line. This makes recovery much longer.



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp March 8-10 A2 Wind Tunnel
 
Re: Illiac Artery Endofibrosis - I've got it. [Ex-cyclist] [ In reply to ]
 
I think my ABI was probably lower so does my doctor. It took a minute to get me hooked up again to measure the pressures.

My right leg stayed at 1.0.

Thanks so much for responding. I will let you know how things are going when I'm out running on the roads. Good luck in all your endeavors.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
I'm surprised they're doing a midline incision. I had a midline because I had both my right and left arteries bypassed, but I remember the doctor originally wanted to do it as two separate surgeries because of the extra risk associated with a midline incision. But, other than that, I have no idea. I was off work for 6 weeks. I think I was really sore from the incision for a couple weeks. I was pretty tired the whole time I was off work, though. If you're driving alone, that might be an issue. Also, my doctor had me on a strict "no sitting for longer than an hour" plan for a couple of months.

Definitely be conservative with running. Give it a chance to heal. You don't want to add extra trauma and the potential for scar tissue development that will undo the positive effects of the surgery. You really don't want to screw this up.

Last edited by: HeidiC: Oct 17, 14 13:29
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
I've read all of this and it managed to scare the hell out of me. I've been having issues with my lower legs. They feel like they are wrapped in duct tape. Very tight. And my calves and feet are always cramping. My cycling isn't awful, just very bad. ;) I guess getting an ABI would be the place to start?

-Robert

"How wonderful it is that nobody need wait a single moment before starting to improve the world." ~Anne Frank
 
Re: Illiac Artery Endofibrosis - I've got it. [Robert] [ In reply to ]
 
Yes, ABI is the place to start. But you have to find some place that will do it using real exercise, preferably your own bike on a trainer. Most places do the exercise portion of the ABI using toe raises (hold onto the wall, go up on your toes, back down, for a couple of minutes). That won't show anything for us athletic types. I did mine running on a treadmill, but bike is better because you'll be in the problematic position.
 
Re: Illiac Artery Endofibrosis - I've got it. [Ex-cyclist] [ In reply to ]
 
I'm suprised that they would do the surgery with an ABI of .7. I've had the surgery done twice. My ABI was .35 in the left leg and .78 in the right. The norm is around .7-.85. What was the ABI in the non-affected leg? If the EIA is long it will likely get worse, so maybe that's the reason for the surgery.


The norm at rest is >0.96. The norm post exercise should be the same or higher than pre exercise pressures.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
My doctor was going to do the flank incision but after talking to Dr Cherry he is doing the midline. I think it has something to do with the location of my iliac artery. Mine branches higher up in my abdomen. Also if you read higher up in this forum there was another surgeon that recommended the midline.

I wanted to do the surgery yesterday but I may have to wait several weeks. I really need to travel at Thanksgiving and my doctor is recommending I don't if I have the surgery. I would definitely be sitting for too long a time. I may have to put this surgery off until December 2nd and I really don't want to. I just want to run again pain free. Right now I run but I run really slow and sometimes that is even hard. I have good and bad days. For some reason being really hydrated helps. Maybe that helps the blood to flow better. I don't know.

Thanks for your input.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
Dr. Cherry also convinced my surgeon, who interned under him at Mayo Clinic, to go with midline instead of two separate surgeries. So hooray for Dr. Cherry. :) He's probably seen it all.

It's hard but don't rush into the surgery if you're not going to have the time (and willpower) to let yourself heal. It's worth waiting -- I know people who went back to activity too quickly and the surgery ended up being unsuccessful. Impossible to know if that was the cause, but I doubt it's an experiment you'd like to try. Good luck with whatever you do. Let us know how it goes. I know it's given me my life back, and that's a pretty awesome feeling.

 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Thanks Heidi. That's exactly what I am having trouble waiting on. I want my life...my life of running back. I will probably wait. Right now it seems like the best option.
 
Re: Illiac Artery Endofibrosis - I've got it. [Treegirl85] [ In reply to ]
 
Treegirl85 wrote:
I'm suprised that they would do the surgery with an ABI of .7. I've had the surgery done twice. My ABI was .35 in the left leg and .78 in the right. The norm is around .7-.85. What was the ABI in the non-affected leg? If the EIA is long it will likely get worse, so maybe that's the reason for the surgery.


The norm at rest is >0.96. The norm post exercise should be the same or higher than pre exercise pressures.

No that is incorrect. The ABI falls under maximum effort. There is so much vascularity in the lower extremities, especially in elite athletes, compared to what is in your arms that the pressure is always going to be higher at the brachial. Chevalier, who was one of the first to recognize this issue, set the mark at .8-.85 after a maximum effort. Later research, and a lot more cases, have suggested revising this downward to .7-.85. Ultimately it comes down to whether the person is symptomatic as to whether intervention is suggested.



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp March 8-10 A2 Wind Tunnel
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
I literally cried the first time I ran and cycled post surgery with no pain or feeling like I had a blood pressure cuff squeezing my leg. Good luck with the surgery! I hope it is successful for you as well! Stay positive and take your recovery seriously!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Has anyone in Canada experienced this and if so would you recommend your vascular surgeon? Any Dr.'s out there who can help direct me to a vascular surgeon in Canada, more specifically in Toronto, with experience/knowledge in this area of practise.
 
Re: Illiac Artery Endofibrosis - I've got it. [70.34me] [ In reply to ]
 
Kyle Jones had his surgery done in Vancouver. You could try emailing his surgeon to see if he knows of anyone in Toronto. http://kylejones.ca/2010/11/25/surgery/

 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Thanks Heidi - much appreciated.
 
Re: Illiac Artery Endofibrosis - I've got it. [70.34me] [ In reply to ]
 
I tried to pursue it with the head of vascular surgery at UofT/ Sunnybrook - Dr Maggisano- and although he went through the range of tests with me, he flat out refused to - in his words - cut me open to improve my triathlon outcomes.

Not exactly helpful in identifying a lead in Toronto, but it narrows it by one!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I had my surgery last Tuesday and it has been pretty rough. Still I have no regrets. I have four beautiful battle scars that I will be proud to display. The ones on my leg will show in my running shorts but I don't really care. I have not been in a lot of pain but the main problem has been gastro. My stomach has bothered me a lot. Probably the pain medicine. I won't be able to run for a couple months but I can walk as soon as I feel strong enough. My hemoglobin dropped a good bit because of the surgery so I am struggling with that. I don't know if it's my imagination or what, but I swear that my left leg feels stronger already. It's like it has been feeling in it. When my doctor opened my external iliac artery it was completely occluded! He removed over 2 inches of blockage. I can't wait until I can run again. I look forward to running without pain. When I googled this condition a few days again the web is loaded with articles. Just 2 months ago there was hardly anything. I hope now that no athlete has to suffer like I did....not knowing what was going on and have their athlete career ended.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
The first week or 2 post-surgery are the roughest. I felt completely fine when I was laying down but would get sore if I walked around too much. And yes, the pain meds can mess up your stomach. I only took the pain meds for a couple days for that reason. Considering what the surgery involved the recovery is fairly quick. The scars will fade a lot after a couple years. Mine were really obvious for the first couple years but now you can hardly see them. I think you will be very glad to have gone through this when you get back to running and cycling and discover what it feels like to run and ride with 2 legs again. :) Good luck with your recovery. Be patient ... you'll be back out there training and racing soon enough!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Thanks! I look forward to what I hope will be a speedy recovery!
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
Congrats on having the surgery. Like litte red said, the first couple of weeks are the roughest. As for your leg already feeling stronger, my husband said that in the recovery room you could literally see my toes go from white to red as the blood starting circulating down there for the first time in many years, so I would say it's entirely likely that it is stronger already. Blood flow is a miraculous thing. :) The first time I walked outside of the hospital, I could tell within 3 steps that things had really changed for the better. I hope you have the same experience. But let me reiterate the need to be patient in returning to exercise -- you don't want to mess this up.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
What are the signs and symptoms of this condition? Unexplained knee pain? Any hip problems?
 
Re: Illiac Artery Endofibrosis - I've got it. [titemple652] [ In reply to ]
 
Google external iliac artery endofibrosis on the web and you will find tons of stuff For me the problem was only in my left leg and I noticed it over 10 years ago in a 5K race. The condition is most common in cyclists but I am strictly a runner. My leg would just go dead on me. I could still run but the cramping would at times become unbearable and I would have to stop and walk. I slowed my pace and stopped racing. I could never find out what was wrong and doctor after doctor didn't know either.Eventually I went to about an 11:00 per mile pace. This was really extreme for someone who regularly averaged 7 - 7:30 on training runs. I have read cyclists refer to it as a "loss of power". Check out the web and if you are suspicious have an ABI test done, but measure pressures before and after exercise not just at rest. Good luck and I hope this is not what if wrong.
 
Re: Illiac Artery Endofibrosis - I've got it. [Beachboy] [ In reply to ]
 
Can you PM me...I couldn't PM you for some reason. I have surgery scheduled with Dr Cherry on Jan 12th and I am also flying there (from Austin TX) and would like to hear from you about your experience...and specifically how long until you could fly home. Thanks in advance. -pj
 

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