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Post deleted by Flick30 [ In reply to ]
Last edited by: Flick30: Aug 14, 15 22:31
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
Yes take it one step at a time.
If you are an elite athlete though you will need to have the surgery sooner than later if it is EAIE.

You may know Travis Meyer and Stuart Ogrady had EAIE corrective surgery and both went back to professional cycling within 6 months.
Please keep i touch and let me know how things pan out.

k
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
I did give cyclomanic the info I had, but I didn't have much-I've just had one visit. I'm actually getting some local info from him, as I need to do some follow up.

Spent the whole day at Mayo for basically the ABI and then to meet with Dr. Bower. The ABI test was weird (they said they are learning, and I did not have a BP cuff on while doing it, and wasn't given any instructions/direction). Was told the test was normal but need to do a CT in the cycling position and need to have heart/lungs checked as I just cannot get enough air to do anything for some reason. Also getting headaches all the time (never been a headache kinda person).

However, when I asked them to send me the test results and also Dr. Bower's summary, they actually weren't normal. Apparently I'd misunderstood. It wasn't terrible like everyone else here (in fact, it was normal pre-exercise), but was abnormal post exercise and result was mild peripheral artery disease on both sides. Ankle BP actually does the opposite of arm BP (goes down when arm goes up, and when arm BP goes down, ankle BP goes up. Ankle BP 5 mins later was actually higher than pre-exercise, I don't know why. But again, lowest number wasn't terrible at .71 one minute after exercise).

I have VO2 max testing on Tues because there is concern it may come back at the level of a sedentary person. Also because I have a history of a prior lung infections, and had pneumonia once and bronchitis twice within the past three years.

Bottom line, mild bilateral peripheral artery disease with no risk factors (not diabetic, not obese, low BP, etc). I'm worried it's cardiac related or lungs. Should know more Tues. VO2 max isn't going to be good since I've basically been inactive for a few months, but apparently it should still tell me if it's heart/lungs.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
Sorry to hear about your diagnosis. It's good that you saw a vascular surgeon. I work with vascular surgeons and they have the ability to treat you with opne surgery or endovascularly which is miniminally invasive. I believe that your are young enough to have a healthy recovery with open surgery should that be a what your surgeon is suggesting. I would also get a few opinions since surgeons skill sets are all different. Some surgeons are better at open surgery while others are better at endovascular surgery so they may be biased towards one way of correcting the problem. Good luck.
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
I traveled to see Dr Cherry just a couple weeks ago. My pre appointments were friday including a meet with his office and an angiogram. My surgery was monday. I can't say enough about Dr Cherry, his team and the staff at UVA; they are amazing. When I had questions and concerns I was given easy access to Dr Cherry himself. I left the hospital Thursday afternoon and stayed an additional night at local hotel before heading home to Chicago. Id be happy to answer any questions. I am recovering very well. Dr Cherry and his PA David are really happy, almost shocked. I've been walking per their permission 45min 3x a day starting one week from the surgery day. Obviously certain things are still painful but I'm getting around pretty well. I am very happy about my decision to go to Virginia. Dr Cherry did tell me that there was someone at Mayo who he trained or worked with that was very good so if distance is an issue Id check him out.
 
Re: Illiac Artery Endofibrosis - Do I have it? [Mmiller] [ In reply to ]
 
Great to hear! Dr. Cherry really is amazing. He and his staff were also great post-surgery if I had any questions. Recover smart and look forward to getting back to running and cycling with 2 legs again soon! :)
 
Post deleted by Flick30 [ In reply to ]
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
 
Not sure if I'm in the right thread. My question has more to do with post-op follow-up. I'm about 11 months post surgery ... bilateral bypass from the common iliac to the femoral artery + the ligaments cut/trimmed in the groin (not sure what you call that). Started having problems with my legs at 28 and was diagnosed and had surgery at 30. If you've had surgery, are you having ABI tests now or do you press for stress tests + ABI? My thought is if I start having problems again, it would show up sooner with stress. And is anyone having problems in your calf muscles post surgery ... lots of cramping and knots? I'm trying to figure out if my calf problems are due to my lack of blood flow for years or if it's a completely different issue (probably in my hips). Cycling is going well but I can't seem to get running again. Quads feel good. My calf muscles do not. Thanks in advance!
 
Re: Illiac Artery Endofibrosis - Do I have it? [eme620] [ In reply to ]
 
I had some issues for the first year post surgery, which I found out were from muscle imbalances. It's very possible you are having some calf issues from muscle imbalance from the time you weren't getting adequate blood flow to the leg. My issues went away with a lot of strengthening work, which in my case was mostly glute strengthening. I had an ABI at my 1 year follow up and haven't had any since. I don't see any reason to get another unless I started to have symptoms again, and if I started to have symptoms again I would start with an ABI test. I don't see don't why you would get a stress test if you are wanting to check the iliac or femoral artery. The best test would be the ABI test. The stress test is not going to show if you are having blood flow issues to your leg.
 
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
 
Sounds good! Thanks! Looks like I may be going in the right direction with my strength training. And I may be using the wrong terminology when I say stress test. Part of my diagnosis process was running (or attempting to run) on a treadmill then doing the ABI to see how much the pressure dropped in each leg. I wanted to make sure that's not something that I need to have done in the future for follow-ups. I think my doctor wants to do ABIs every 6 months now. I've already had 2 since my surgery.
 
Post deleted by Flick30 [ In reply to ]
Re: Illiac Artery Endofibrosis - Do I have it? [eme620] [ In reply to ]
 
Same as little red -- lots of muscle imbalances from the lack of blood flow over the years -- in my case, they also particularly manifested themselves in my calves while running. I work with a Muscle Activation Technique practitioner and it's been incredibly helpful. I couldn't run before I took that step; it's cleared up problems I had for years before my surgery. I've had several ABI tests since my surgery, although only a couple that involved cycling as the exercise form. That is where problems will show up first, assuming it is an ABI with exercise and the exercise is "real" exercise. Sounds like either running on a treadmill or stationary cycling for the ABI would give you a good idea of what's going on.
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
Thanks for all the info Heidi! I'll look into finding a Muscle Activation Technique practitioner.
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
I went to Mayo and they didn't know how to get a CT in the cycling position, so the techs tried various positions. At first we were trying stuff on my back, but we ended up doing the scan kneeling with my butt to the machine. I cannot hold that position using my thighs because they start shaking really bad, so I braced with my toes. It's pretty hard to describe, but I put my arms forward like I was in the drops. It was a bit more bent than actually being on the bike, but pretty close and seems to have been successful. The first regular scan (lying flat on your back) was normal, but bent showed kinks in the juncture of the iliac and common femoral arteries on both sides. The left was very minor, the right narrowed the lumen by at least 50%. However, I don't know what an angiogram is or if you can get in the same position for that. I just thought I'd offer the info in case it might be helpful?
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Yes I had the same problem when I went to have a CT. Mr Dr requested it to be in the hyprexed position, but the CT operators on the day had me flat. I would have fitted through the machine! The angiogram is where they inject the contrast dye via femoral artery and take a single plane X-ray of the arteries. I did have the knees bent but couldn't get the hip flexion as you can't sit up and the X-ray machine only allowed knees to bend so far.

If it's kinking causing the blood flow problem, then is it just a release of the artery? There won't necessarily be endofibrosis on or in the artery? or is it the kinking that causes the arterial endofibrosis and lesions ?

Thanks again :-)
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
When Dr. Cherry did my angiogram he moved my leg to flex my hip as if in the cycling position. I believe he is one of the few vascular surgeons (at least in the US) that replicate the cycling position during the angiogram with cyclists/triathletes. And yes, the ABI will show if you have blood flow issues regardless of if just the iliac, iliac and femoral, etc... but it will not pinpoint what artery or arteries are involved. The angiogram will pick up which arteries have the issue - in my case it was the iliac and femoral artery.
 
Post deleted by Flick30 [ In reply to ]
Last edited by: Flick30: Sep 5, 15 20:33
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
The issues with my arteries showed up while I was lieing flat. In my case my flexing my leg into the cycling position showed my issue was due to the inguinal ligament restricting the artery, so part of my surgery was to release the inguinal ligament. My understanding if that he could see there were areas where the arteries were blocked with scar tissue build up, but flexing the leg showed the effect of the inguinal ligament on the arteries. I'm sure this would also clearly show if there was a kink in the artery. I race and train with a more open hip angle since my surgery, just to be on the safe side.
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
I'm still in the process of getting diagnosed, but from everything I've read (and like most folks here, I've read a *lot*), the kinking is caused by an anatomically long artery which eventually further gets blocked by scar tissue building up inside the artery. However, I've never been very good on the bike and do it for fitness and to stave off old age, so I do not have nearly the miles that everyone else here has :) I rode 5,000 miles in 2011 and then steadily decreased since then (last year due to my basement flooding, so I was pouring a new slab and tiling, etc instead of riding). Don't get me wrong; I'm dead serious about fitness and very goal oriented, I've just never been that fast. Took me 6 years to finally break 20 mph avg on a short 10 mile slightly hilly TT course.

I started noticing problems in 2007 shortly after I was diagnosed with Celiac disease (I thought that's what it was, and I'd only been riding a few years at that point). Ironically, I fell in love with TTs that year (after trying CX, crits, and road races) and went for a bike fit. I didn't know it would be a problem to be aero in all my rides (group, solo, training, races) so I just left it in TT position all the time. This is the best side shot I can find (lots of photos from the front or angled a bit front to side!). This is how I've been riding since 2007 (I do stock only):

http://lh3.googleusercontent.com/..._5807.jpg?imgmax=800

(I miss that TT and sure hope I can do it again next year!!!)
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
Hi

Make sure they also undertake ultrasounds with the ABI's. I'm sure they will.

Cheers
K
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
Hey Heidi, Do you remember how many sessions you had with a MAT practitioner? Or are you working with one all the time? It looks like I'm going to have to go out of state to see one. I'm planning on heading to Dallas soon to see a friend so I thought I'd try to make an appointment with someone.
 
Re: Illiac Artery Endofibrosis - Do I have it? [eme620] [ In reply to ]
 
Unfortunately, it is kind of a long term process, and an expensive one as well since it's not covered by insurance. Did you look at the MAT website? If you'd like, I can ask my guy if he knows of someone in your area.
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
Yeah I contacted the website. No one in my area. I'm heading to Dallas tomorrow. So, I'm going to meet with someone Thursday and Saturday. Maybe Friday too. He said he thinks someone from Little Rock may be in the middle of their certification. That could be a good thing! But I'm also trying to pay off all the medical bills ... not add to them! Granted, I also want to be able to run well again! Thanks for your help :-)
 
Re: Illiac Artery Endofibrosis - Do I have it? [eme620] [ In reply to ]
 
Good luck, I hope it's helpful for you. I know I was pretty much a huge tangle of muscle imbalances. Like I said, it's pretty expensive, but it made a huge difference for me.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Hi Kenpet - I finally have a diagnosis (just). I have 'Common Iliac Artery Endofibrosis'

I'm not sure If i'm a normal human :-) When we did the ABI it returned a 'normal' reading. This was after a solid ride on the stationary trainer and symptoms were alive and kicking. I had one cuff on the right arm and then two on each ankle. Doppler Ultrasound showed nothing on the external Iliac artery. After this test, I didn't have vascular problem, and that was certain. I just collapsed on the bed....thinking its all in my head, im just going to give up sport.

The Doc popped back in to the room and asked for the Common Iliac to be Ultrasound, which seem to be quite a distance from the external iliac scan location. After not many words said by all, I had no idea what was going on. I just felt embarrassed to have wasted their time with with months of searching. The ABI had turned up normal and I knew the ABI was the most definitive test to identify Vascular problems. I felt stupid.

A post- test chat with the Dr and he said the Doppler Ultrasound actually picked up a Peak Systolic Velocity (PSV) in Common iliac of 450+. Apparently a rather high reading (compared to normal) and an indication of arterial blocking. We found the problem but I wasn't convinced, and either was the Dr, as the ABI was 'normal'.

After 24 hours of everyone thinking (Sports Doc, Vascular Doc and Me).....It was confirmed as Endofibrosis of Common Iliac. Both the 'dot' picked up in the angiogram, The PSV of the artery and the symptoms were enough to confirm / convince.

Where to from here...surgery to fix. But lots of questions to ask before making a decision:-)

Have you decided when and where you will have surgery e.g In Melbourne ?
Last edited by: Flick30: Sep 13, 15 21:06
 

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