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melchski

Endarterectomy Surgery for Endofibrosis of External Illiac Artery

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Guys I've been away from this forum a REALLY long time. So hi!  Pretty impressed to see these forums are still around.

I am looking for people who are wiling to share their stories, experiences and all the nitty gritty truth in regards to rehab/recovery following Endarterectomy Surgery for Endofibrosis of External Illiac Artery.

I have been living with complete occlusion of my external illiac artery on the left side for about 8 years, misdiagnosed before that (whilst doing long distance tri's).  I decided to modify lifestyle (ahhh hence no tris, no running etc) for the last 8 years instead of undergo surgery at the time as it was 'strongly advised against'.

Since that time, I believe the procedure has been refined a bit better and surgeons are clear that the only true fix is the procedure outlined in this article https://www.sciencedirect.com/science/article/pii/S1078588412000093

I'm come to the point in life where I am strongly considering the surgery as the disability and pain I live with affects every aspect of my life, as I cannot even walk without pain.  My body has also adapted and is becoming 'lop sided' in other ways with hips, feet, ankles, everything starting to degrade and suffer.  The mental health aspect is probably the worst.

I know some of the pro's have had this done and I have already been in touch with Melissa Hauschildt.

Anyone else out there willing to share how things went? Any failures?  If you've had it done how are you living now?  Any precautions etc.  (PS I know I've seen some previous thread chats in the past but can't find them, also looking for recent info)

Thank you.

Melinda

 

 

 

 

 

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I’ve seen four through work over the last 12 years. Have also been in theatre to observe the surgery for the condition

Three had surgery. Two of those (both good triathletes) went well. The third was an unusual one in that it was common iliac rather than external iliac. This athlete returned to recreational cycling but not previous level (national level +).

The fourth person (ex elite cyclist) didn’t have the surgery and just treated with activity modification.

It’s a reasonably low risk procedure (but certainly not risk free as Mel H has spoken about publicly) although you are often quite sore for the first few weeks due to the trauma to the muscle to access the artery. Rehab for you might be a bit longer as it sounds that you are deconditioned as a side effect of the condition.

the two vascular surgeons we use in Melbourne are Roger Bell and Bill Campbell.

if you have any other questions feel free to ask here or send me a message

 

 

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Wife had it done in Sydney about 5 yrs ago. Good as gold.

Like you it was misdiagnosed for 2yrs even though I called out Dutch cyclists disease from almost day 1. Tuuned out hers was not a kink though  but a blockage.

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Thank you for the replies guys.  Good news.  Comfortably Numb mine is also a quite long blockage. One of the longest they have seen I'm told (lucky me not).  How long was she out of action for?

Aidan I will take your info with me when I meet with a vascular surgeon in Newcastle in Feb.  I am in NSW.  Dr Arvind Deshpande - who seems knowledgeable about the procedure but I'm not that sure how many he has done on athletes.  He should know about the work of his colleagues in Melbourne

I'm hoping I'm not too de-conditioned, I have pushed the pain limits for 8 years teaching myself to walk again(with nordic walking poles), ride (slower), swim, I do strength training too, kayaking etc.  Also became a personal trainer some time during this time, though I gave that up a while ago.  PS I'm 40yo.  My concern these days is I'm noticing how uneven the body is becoming, interestingly more muscle bulk on the left side (bad side) than the right.

Looking forward to getting a pain free life back (fingers crossed)

 

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1 hour ago, melchski said:

Thank you for the replies guys.  Good news.  Comfortably Numb mine is also a quite long blockage. One of the longest they have seen I'm told (lucky me not).  How long was she out of action for?

Aidan I will take your info with me when I meet with a vascular surgeon in Newcastle in Feb.  I am in NSW.  Dr Arvind Deshpande - who seems knowledgeable about the procedure but I'm not that sure how many he has done on athletes.  He should know about the work of his colleagues in Melbourne

I'm hoping I'm not too de-conditioned, I have pushed the pain limits for 8 years teaching myself to walk again(with nordic walking poles), ride (slower), swim, I do strength training too, kayaking etc.  Also became a personal trainer some time during this time, though I gave that up a while ago.  PS I'm 40yo.  My concern these days is I'm noticing how uneven the body is becoming, interestingly more muscle bulk on the left side (bad side) than the right.

Looking forward to getting a pain free life back (fingers crossed)

 

My wife was only out of action for a few weeks.  Her patch is about 5cm long.

She had it done in the private system by Prof. Rodney Lane - 02 9438 4500.  He operated out of a small private hospital Dalcross Adventist Hospital (Killara, NSW)

https://au.linkedin.com/in/rodney-lane-685258164?trk=seokp-title-professional-name 

He did the same surgery on top NZ triathlete Andrea Hewitt.

Should add my wife was 50 when she had it done. Despite being extremely fit, she has terrible genetics for vascular blockages & after seeing inside her arteries, Dr Lane recommended she go on statins (low dose - 20mg) & Aspirin , which she did.

 

Edited by ComfortablyNumb

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33 minutes ago, ComfortablyNumb said:

My wife was only out of action for a few weeks.  Her patch is about 5cm long.

She had it done in the private system by Prof. Rodney Lane - 02 9438 4500.  He operated out of a small private hospital Dalcross Adventist Hospital (Killara, NSW)

https://au.linkedin.com/in/rodney-lane-685258164?trk=seokp-title-professional-name 

He did the same surgery on top NZ triathlete Andrea Hewitt.

Should add my wife was 50 when she had it done. Despite being extremely fit, she has terrible genetics for vascular blockages & after seeing inside her arteries, Dr Lane recommended she go on statins (low dose - 20mg) & Aspirin , which she did.

 

Thank you.  Sounds like a lucky improvement indeed I am glad your wife is o.k.  My mother and her family has been through some weird vascular stuff in the past too so I'll be curious to see if anything is related.  Although blockage is definitely whole physical injury to the artery (aero position, over training etc)...its just interesting how most people get away with doing this kind of sport with no issues, then there are a group of us that don't.  Yet they still don't really know why.  I'm very happy to get the names of these surgeons, knowledge is power.

Its interesting as when I was diagnosed in 2012 in Perth WA, two vascular surgeons strongly advised against intervention.  Over here (east) seems to be the opposite.  Everyone I see asks 'why do you live like this'

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Another question.

Post Op care, physio and rehab.  I currently live in a small country town and to get to a decent physio I have to drive 80kms.  Same as a good hospital.  I imagine for a while lifting/driving may not be possible.  Then some specialist re-training of abs etc.

My partner and I are quiet prepared to move to a bigger town (eg Newcastle) before I get the op done.  Well for lifestyle as well really.  Just sussing out the timing of things......

Am I over thinking things or would this be a sensible thing to do?

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No special post-op care/physio/rehab/abs training was needed.  My wife also had a hernia repaired at the same time.  Just ask the surgeon when you can return to training, just need to wait long enough for the patch to heal well - which was not that long from memory, weeks not months.  Her GP took the stitches out.

BTW in my wifes case, they went for a patch instead of a stent because of the high amount of exercise she does & they thought a stent would not be strong enough.

The cut size is very much like a hernia op in a similar place (I've had 3 hernia repairs) and it is really not that complicated surgery.  You just need to take it easy for a few weeks after to let it heal well.

I have no idea why the surgeons in the west would have let things get this bad for you?  The main symptom my wife had was loss of leg strength & function (dead-leg) while running - nowhere near as bad as yours sounds.

No need to move town from our experience.

Edited by ComfortablyNumb

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15 hours ago, ComfortablyNumb said:

No special post-op care/physio/rehab/abs training was needed.  My wife also had a hernia repaired at the same time.  Just ask the surgeon when you can return to training, just need to wait long enough for the patch to heal well - which was not that long from memory, weeks not months.  Her GP took the stitches out.

BTW in my wifes case, they went for a patch instead of a stent because of the high amount of exercise she does & they thought a stent would not be strong enough.

The cut size is very much like a hernia op in a similar place (I've had 3 hernia repairs) and it is really not that complicated surgery.  You just need to take it easy for a few weeks after to let it heal well.

I have no idea why the surgeons in the west would have let things get this bad for you?  The main symptom my wife had was loss of leg strength & function (dead-leg) while running - nowhere near as bad as yours sounds.

No need to move town from our experience.

Wow interesting.  Yeah I had ' semi dead leg' right through 3 Ironmans back between 2003-2005.  I just coped by adjusting to walk/runs and pretty much walked most of each run.  Claudication pain was in the calf to start with for years, would come on running but stop when I walked.  Misdiagnosis for a very very long time.  I stopped doing tris.  Running got worse and worse.  Soon riding was bad too.   Adductors, hammies, hip flexors all affected not just calf.  Eventually the blockage completely blocked around 2011 and I actually couldn't walk.....or do anything with my leg.  Was told to wait for the collaterals take over more blood supply and prepare to be sedentary.  I refused and re-trained myself to be reasonably active but I do so with pain (no hills on the bike, sitting in upright position only and walking no running).  The body does adapt to an extent.  Took up kayaking, do lots of weight training.  But I'm over it.  If I get this done and can run for more than 40 seconds in my lifetime I will consider it a miracle.  Looking forward to it!

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Damn Mel, that all sounds like some of the worst medical advice ever!  I increasingly shake my head at the disparity and lack of thought of advice in modern medicine (I went through 5yrs of dual knee pain & bad advice until through my own research & contacting people with the same symptoms/history, I got some relief and improvement by following the protocol of an orthopedic surgeon from San Francisco who was scathing of his own profession).

My wife was told if she let her's go she could eventually lose the leg !

It really was a pretty simple surgery as far as we can tell, and fixed the problem, though with her blockage genetics it could eventually block again - but so far all is fine.  She regularly runs up to 6kms and  rides 40kms - won her age group at the Gold Coast Mara 5.7km last July! 

I'm just a team swimmer for her now :blush:

 

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10 hours ago, ComfortablyNumb said:

Damn Mel, that all sounds like some of the worst medical advice ever!  I increasingly shake my head at the disparity and lack of thought of advice in modern medicine (I went through 5yrs of dual knee pain & bad advice until through my own research & contacting people with the same symptoms/history, I got some relief and improvement by following the protocol of an orthopedic surgeon from San Francisco who was scathing of his own profession).

My wife was told if she let her's go she could eventually lose the leg !

It really was a pretty simple surgery as far as we can tell, and fixed the problem, though with her blockage genetics it could eventually block again - but so far all is fine.  She regularly runs up to 6kms and  rides 40kms - won her age group at the Gold Coast Mara 5.7km last July! 

I'm just a team swimmer for her now :blush:

 

Definitely crazy times.  I have met others with stories that could have been avoided.   I totally feel that unless you meet a proactive doctor, many do not think outside the square and if you are just breathing its classed as a success story.  What else do you want in life? Don't worry about quality of life.  

Glad you guys are doing well.  What you went through would have been frustrating and soul destroying at the time.

 

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On 16/12/2018 at 12:41 PM, Aidan said:

I’ve seen four through work over the last 12 years. Have also been in theatre to observe the surgery for the condition

Three had surgery. Two of those (both good triathletes) went well. The third was an unusual one in that it was common iliac rather than external iliac. This athlete returned to recreational cycling but not previous level (national level +).

The fourth person (ex elite cyclist) didn’t have the surgery and just treated with activity modification.

It’s a reasonably low risk procedure (but certainly not risk free as Mel H has spoken about publicly) although you are often quite sore for the first few weeks due to the trauma to the muscle to access the artery. Rehab for you might be a bit longer as it sounds that you are deconditioned as a side effect of the condition.

the two vascular surgeons we use in Melbourne are Roger Bell and Bill Campbell.

if you have any other questions feel free to ask here or send me a message

 

 

Hello again Aidan.  I am making moves to have the surgery done in May or June through a Vascular Surgeon in Newcastle (Dr Arvind Deshpande).  He has done two before and considers it 'not difficult'.    When discussing the procedure in depth, he says he would be taking a vein from the groin area on the same side as the occluded area  (so mine is a long occlusion of the external illiac, not just a kink).  Is this the norm in your experience?  Other athletes have had a vein removed from the calf.

There would be two cuts to the abdomen, one large/long lower down and smaller higher up.   Its not something he does regularly but sounds confident enough and is not someone who needs to 'tick off' this particular procedure.

In terms of recovery in Dr Deshpande's opinion cycling is the last thing I would be returning to (only after 6 months) as this was the cause of the 'injury' and he wants the artery reconstruction to 'bed in' before going back to that movement pattern.  Cycling would be allowed after 6 months.  (I do currently cycle up to 120km/week albeit in pain)

He said that swimming, walking (maybe even jog), weights etc would be ok as it is all about the hip angle/damage to the artery we are trying to avoid during recovery.

Does this all sound OK and familiar?

I'm trying to figure out if I should get another consultation to go through the facts with another surgeon in Sydney just to be sure.  Because I am based in regional NSW. Closer to Newcastle, the Newcastle option is a lot less stressful in terms of travel.

Thanks

 

 

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