Login required to started new threads

Login required to post replies

Prev Next
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
I have no direct experience with Dr. Lee, but I know the surgeon who did mine corrected an endofibrosis surgery that Dr. Lee did and which failed a couple of years later. I'm not sure that can be blamed on Dr. Lee, but this person felt his second surgical experience was a vast improvement over his first.
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
Hi Hannah- thanks so much for the through explanation.I'm sorry to hear about the complication. A tear in the wall of the dissection sounds like it is serious. Will you need the procedure re-done?I was hoping that Stanford might be more organized by now. Setting the initial appointment seemed pretty seemless, but I guess that is no indication of the more important processes to come. I will keep my appointment to get a confirmation of IAE or not, but your post makes me re-think Dr. Lee. I've already gotten the run around by my orthos, so I may look around for other doctors experienced with IAE on the West Coast. I'm in the SF Bay Area, sounds like you might be close by here. Will you go back to UCD for the second opinion? I don't know how many of these surgeries a dr has to do per year to become compentent though. My email is michele@mm-estateplanning.com - i looked for your email address in your profile but didn't see one.
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
Heidi- Thanks for that input on Dr. Lee. I will go back in this thread to get the name of your surgeon. I also emailed Dr. Cherry to see if he had any recommendations. Thank you so much!
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
My surgeon, Christian de Virgilio, has unfortunately stopped doing these surgeries. He's the Director of the General Surgery Residency for Harbor-UCLA, which keeps him pretty busy, and Harbor-UCLA isn't really set up to take private pay patients (it's an L.A. County hospital; mostly MediCal). When he stopped, he referred me for follow-up to David Rigberg at UCLA. I've only seen him once, but he seemed to have a good handle on the iliac artery endofibrosis stuff and seems to be well-respected by his peers. I can't really speak to his surgical skills though. I would see who Dr. Cherry refers you to. Let us know what he says, although I have a feeling it might be Dr. Lee.
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
Heidi - Taking Dr. Lee out of the equation, Dr. Cherry recommended your doctor, de Virgilio, for the west coast. He hadn't heard of Dr. Rigberg, which doesn't mean that Dr. Rigberg is not every bit as compentent as Dr. de Virgilio. Not being enthused with what I'm reading about Dr. Lee's outcomes, I scheduled surgery with Dr. Cherry in VA on April 6th even though I'm in CA.
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
Going to Dr. Cherry seems like a great idea. I have a hunch your lack of enthusiasm for Dr. Lee is well-founded. It's definitely a bummer that Dr. de Virgilio had to stop doing private insurance work. Dr. Cherry referred me to him (Dr. de Virgilio had interned under him at Mayo Clinic); Dr. de is really a great surgeon and also a great guy. But, given his absence, Dr. Cherry is the way to go. Good luck! Let us know how it goes.

BTW, did you have your ABI?
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
My ABI with Dr. Lee is March 14th. Dr Cherry asked me questions before saying that it sounded like IAE and set the surgery date based upon that. It's been a 2 month wait for that 14th ABI date, so I'm keeping it as a confirm before I travel. But wow, what a difference in procedures!
Re: Illiac Artery Endofibrosis - I've got it. [Wanda] [ In reply to ]
Hi Wanda.

I was just wondering if you ever located any surgeons in Canada that use Dr. Cherry's technique.

Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
And, Michele, I was wondering how things turned out for you. Hope it went well!
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
Hi HeidiC - I had the surgery by Dr Cherry on April 6th. I had endofibrosis in the common iliac as well as the external all the way to the femoral artery. I had two incisions to replace those arteries, probably about 10-12" in total cuts. I'm 6 weeks post op and followed up with Dr Lee at Stanford last week to avoid the logistics of the cross country plane flight. I was surprised that the EIAE was so pervasive. Dr Cherry's angio showed EIAE in the other leg as well, but hoping to delay that surgery as much as possible. I hope you are doing well from not only the EIAE but your other injuries from the car impact.
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
My symptoms that I couldn't control my left leg/weakness/impending cramp started 5 years ago with running and have worsened to the point where I can't run anymore. I transitioned to mountain biking & XC skiing, but am starting to experience some symptoms with biking now. I also feel them with walking and my leg will sometimes tingle at rest. Finally, after 5 years, a CT scan earlier this month revealed IAE (actually on both sides, though I only have symptoms with left leg). I was elated after all the wasted time and money on chasing a diagnosis. My Dr wanted an ABI as a follow up test because my 2 priors had been normal, but with those I didn't exercise until the symptoms were intolerable. I did that today and the US ABI was normal (I believe 1.4 post exercise and 1.17 at rest). Now the Dr says my IAE was an incidental finding and NOT the cause of my symptoms because the thickening isn't impeding blood flow. I am devestated. Now he's making me do an US for venous insufficiency (of which I have no symptoms of) and an echocardiogram. I just find it too coincidental that I experience nearly all the symptoms that everyone here has, a CT scan SHOWS the condition (the Dr even showed me on the imaging how you can tell the thickening), but my stupid ABI is normal and now sending the Dr off that path. I obviously don't want a surgery that won't correct my symptoms but every other test under the sun has been normal! Has anyone experienced anything similar? Suggestions? I am thinking I'll send my records to Dr. Cherry once I have them for another opinion (not sure if waiting for my subsequent tests would be useful).
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
Mel Hauschildt has recently had surgery for an iliac artery kink. Been giving her issues for a couple of years.
She initially thought it was just cramp but it really was no blood flow to quad

Andrew Garwood
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
Thanks for the update, MIchele, and sorry about my delay in responding. I'm glad you were able to get to Dr. Cherry for your surgery. I hope your recovery goes well and that your leg is back to full function soon -- and also that you are able to delay surgery on the other leg. I find it so interesting that some of us have this in both legs and some only one. It make me wonder if there are different etiologies. Well, I'm sure there are, but I wish the medical community knew more about it. Thanks for the well wishes!!
Re: Illiac Artery Endofibrosis - I've got it. [hollyanne99] [ In reply to ]
I'm sorry you are having such a hard time getting a diagnosis. Are you seeing a doctor who is familiar with this condition? How was your ABI done? Were you on a bike, or at least a treadmill, for the exercise portion of the ABI? The protocol they use for ABI determination in the diagnosis of peripheral artery disease is much different than what should be used in athletes with symptoms of IAE. The standard ABI is not sensitive enough to pick up issues in well-trained athletes because the exercise portion isn't rigorous enough. I would shoot Dr. Cherry an email (email address is somewhere above) with whatever records you have, or even without any records, and get his opinion. He may also be able to give you a referral to someone in your area who is knowledgeable about IAE.
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
Thanks for the response, Heidi. My ABI did have me run as fast & as far as I could, to get my symptoms as bad as I could tolerate, so it was done correctly. My symptoms are worst with running. I did call Dr. Cherry's office and will be sending my info to him for review. Knowing he's the expert and would know if it's possible to have the condition with ABIs reading normal gives me some sort of relief that it's not over yet. I also want him to see the imaging. He will know of those he repaired, who it worked for, and potentially if I look similar or not. If he says it is not the cause of my symptoms, I suppose I will have to accept and believe that and continue searching for an answer elsewhere.
Re: Illiac Artery Endofibrosis - I've got it. [hollyanne99] [ In reply to ]
I've had a few people contact me asking about my status.

Tests confirmed that my inguinal ligaments bilaterally were causing compression on the femoral arteries, leading to reduced circulation (reduced by 30% on one side and 40% on the other, I believe). I underwent bilateral ligament release in October of last year. It was confirmed during surgery that I was essentially pre-IAE as the ligaments on both sides were tight with very little space between the ligament and the artery (if I understand correctly, the higher the need for increased circulation, the more the femoral artery expands and the more the ligament compresses and restricts circulation during exercise). I did NOT have any scarring and did not need any grafting on either artery (and it impacted circulation closer to the hip as it was above the iliac junction-I think).

I had tried to substitute running for biking in 2016, thinking to maybe avoid surgery and change sports. I was provided arch support inserts that were too extreme and in March of 2016 on the inaugural run I suffered a meniscus tear. Several months later about a 1" chunk of cartilage broke free and imbedded in the back of my knee and showed up on follow up MRI. Surgery in July of 2016 to remove the cartilage and trim the meniscus revealed a large tear that had also detached on one side, instead of the small tear that was anticipated. It did not appear on the scan as it had folded over on itself. The surgeon performed a repair which is essentially the same type of recovery as a knee replacement.

As of this date I have been unable to recover from the arthritis in my knee (surgeon believes the repair was successful, but that the cartilage broke free at the time of the tear due to existing arthritis; cartilage tissue cannot regenerate or be replaced or repaired). Without going on and on, my knee is quite painful with weight bearing activity.

I went ahead with the release in October as the surgeon thought I would fully recover from the tear and cartilage damage. Until recently pain in my knee prevented me from trying to train other than spinning on a trainer with little to no resistance. In March of this year I had a steroid injection which temporarily relieved pain, swelling and a fluid pocket.

Unfortunately a week and a half ago my symptoms returned exactly as they were prior to the ligament release, with the additional problem that the steroid injection only lasted about a month or so.

I'm devastated as my activity level is sedentary now. I'm extremely depressed and not dealing well with the situation. I figured I should post so folks don't contact me as it tends to make it more difficult for me to deal with. Thanks for your understanding.

Prev Next