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My symptoms started in my mid 20s when I was training for triathlons. Some thing was 'off' in my left leg, I could never push as hard, muscle fatigue would set in before I could reach sub maximal HR...I settled in to being a back of the pack plodder who always had a 'funny left leg' which sports docs put down to biomechanical imbalances, resulting in tens and thousands of $ in physio bills and endless frustration.
Mostly my running was what suffered, which I now know as calf claudication...and in the last few years of my running life I amended my runs to doing 5mins shuffle, 1min walks. I even complete my 3 marathons during my Ironmans in this manner. Being stubborn as hell...I never gave up.
I gave up triathlon in 2005 but continued to train as exercise is what keeps me happy. I still continued to see various health professionals, none even thought to test my blood vessels, after all I was young, female and fit and healthy....not arterial disease risk.
In early 2012 I went for a ski trip and on my return did a mountain bike ride. Straight after the ride something was not right, I couldn't walk at all. My left leg just dragged behind me.
Investigations begun and initial Doppler ultrasounds in Perth Australia showed no issues. It took a specialist sonographer within a private vascular surgeons clinic to find it...and when he did he almost fell over as he saw that my collateral vessels (other smaller arteries) around the external illiac, had grown so massive that he could barely recognise them. So my stubborn overtraining behaviour had saved my leg....because I kept exercising through pain...the collaterals meant the leg was getting enough blood to be 'healthy'...as long as I was willing never to run again....
Diagnosed finally at age 33, surgery was explained to me, that they would need to do a full bypass ....if I wanted....using my own vein....but apon measuring my vein diameters, they are too small.
Surgeons advise ' get used to a sedentary lifestyle' cause we are not going to risk a synthetic vessel in someone so young etc etc...similar to some of your experiences...the issue may come back, you might die on the table....example of the cyclist who died and all that...
So they said come back in 6 months after you have tried to live with it.
The reason they say that is because collateral vessels need time to develop, and they will with patience, meaning your daily pain levels will improve and you will also develop new patterns of movement.
So....I taught myself to walk again, swim again (at first with legs tied together), eventually gently spin on the bike.
3 years on I'm able to do hiking with nordic poles, ride my bike (but not hard and not up big hills), swim, do gym work, some yoga, I can still snow ski (muscle pain still comes on early).... But there is not enough blood flow to enable running. I miss running like a cut off limb...I really do. I still feel like crying when people pass me running. Something taken for granted...
The daily pain gets me down....walking up the road, cramping, pain, slowness, not being able to keep up with others . And what about the mental health issues...feeling like an incomplete person, living with daily pain and disability. From the outset people see me as a healthy fit person, I'm even studying to be a fitness instructor so I can share my story with others, esp allied health professionals.
I've felt so alone....being told to 'live with it' but not finding any real information about other people with the same problem. It's such a relief to finally know I'm not alone. Your stories have given me hope
I know I'm 1.5 years late...but thank you
I did forget to say I was referred from the 'nervous surgeon' to a colleague of his who had had more experience in this kind of surgery and could paint me a full picture of what would happen on the table and step by step options depending on what they found. The issue with this new guy was that he was completely the opposite personality and kept saying 'whatever you like I will do it for you'. That doesn't work for me either ...they are the experts ...whatever I like doesn't fill me with confidence.
I'm due to go back this year (unfortunately lack of $ is holding me back from too many consults) to get more information and also medical clearance to do some jobs (I'm seeking a new career). When I see the surgeon I'll ask to be referred to someone who can give me real life patient examples...
My other concern with this kind of surgery is the 'other' effects of major surgery on the body. I have a friend who has had multiple various surgeries and complains of chronic pain, nerve pain, tissues not fusing properly and various other things that affect her quality of life so much that she wishes she'd never gone there.
How did you find the healing of the abdominal muscles? Any remaining weakness or issues? The idea of such major surgery petrifies me, plus the recovery (I'm very bad at not resting). Just afraid if doing more harm than good....as I am kind of 'ok' compared to the society we live in that doesn't understand why people want to do endurance sport ;)
2 questions I haven't seen covered:
1- for those with a synthetic vessel bypass, do you need to take anti rejection drugs for life?
2- anyone know any surgeons in Australia who work like Dr Cherry?
Who knows, I may become a 'born again' runner in my 40's. Look out world, what can I accomplish with 2 good legs :)
I'll certainly be making a very long questions list for the review I'm planning with my diagnosing surgeon.
Thank you so much for sharing your experience with me.
I had two synthetic (Dacron) grafts, one for each leg. No anti-rejection drugs ever. Any kind of surgery is a blow to your system, but the recovery was not as bad as one would think. Even with having my abdominals split open for the surgery, I was walking the dogs within a couple of weeks and riding on the road within a couple of months.
I'm basically 'sht scared' to do anything. I've had other health issues in life and don't want to add to the problem. Yes lacking confidence big time. But the flip side is that being active makes me happy so isn't that most important?
I'd characterize it as the exact same feeling as you get when you are squatting for a while to look at a bottom shelf and stand up quickly, but I feel it in my quads. In the days after the ride I am not able to move my legs a few seconds after coming up one flight of stairs from the basement to the main level of the house. It feels basically like all of the blood suddenly drained out of my legs a few seconds after I ascend and I just can't move-like my legs are going to pass out?? Is that anything at all similar to what other people have experienced?? I've also had a problem with my left ankle for a few years, but maybe that's unrelated. I figured it might be compensation and that I'm no longer able to do a smooth controlled pedal stroke.
I've had so many tests, and they are all negative (blood work, rheumatologist). It makes me feel crazy and that I should be able to ride through it if I really wanted to. But I'm trying so hard! I've tried taking time off, interval training, long rides to ease into the season, more protein, changing diet....nothing ever works. I'm pretty depressed because cycling is really important to me (I cannot even keep up on team coffee rides anymore). I have been riding in a very aggressive position since at least 2009 on all rides; group rides, solo, TT training, etc. I used to flip the stem the first year, but haven't since then-I ride aggressively positioned 100% of the time (mostly because I was getting slower and slower and it helped me keep up on rides).
Is there any chance that I might have illiac artery endofibrosis even though I only ride 2,500-3,000 miles a year, generally (although I did hit 5,000 miles in 2010, generally it's closer to 3,000)? I am trying so hard!! Either I need to go on meds as a mental case, or it's something like this that wouldn't show up on normal lab tests. All the doctors I've seen compare me to the general sedentary American and don't take me seriously. They think my riding is sort of over the top, even though I'm at the low end compared to any one of my teammates or friends.
If it might be endofibrosis and only shows up when I'm cycling, how do I find a vascular surgeon who will take me seriously and knows how to do the testing? I live in Minnesota and could get to Mayo. If I could find out what's wrong and get back to even where I was just a few years ago, I'd be able to ride with my friends and socialize again. It would mean so much to me!
Thanks-I sure hope this thread isn't too old.