Running with AVN

[fattyres]

Hi all-
I am not a hippy by definition (my hip is hanging in there!), but I do live with stage 2 AVN in my hip and struggle to find information from others with AVN who are athletes. Prior to my diagnosis 2 years ago and subsequent core decompression, I was a competitive duathlete, runner, and cyclist. My surgery went well and 2 years later I have no progression and resumed competitive cycling and mountain biking. I really have no limits in these areas! I still run occasionally, but am smart about it - sticking to trails and grass and going slowly and not many miles. I do feel discomfort following a run - even following a long walk. Not pain really, but tightness. The experts are all over the place on this one! Isn't that the story with AVN? I have seen contradictory statements from expert to expert about this mysterious disorder, and just as contradictory is the advice given related to activity. My surgeon (excellent...top AVN expert in US) says: don't run, it's not worth the risk...but you might be fine. But I am also told if I made it 2 years after diagnosis with no collapse, my odds of progression are slim (so, just deal with the chronic and occasional discomfort, but perhaps no hip replacement will be needed...no matter what I do? Hmm.). Another expert, Dr. Mont (who I highly respect for his knowledge specific to AVN), advises patients to resume impact activities if they wish as long as there is no collapse of the femur at 10 months post core decompression. Hmm. See what I mean?

My question to the group is: any runners out there who have a story to tell related to living with AVN? Perhaps prior to your resurfacing - or maybe you are like me and not at that point yet (hopefully, never will be)? I just want to live my life as normal as possible, which for me always meant without limits. I realize I do have limits now, but wish for more definitive advice on the risks so I can make the most educated decisions possible.

Thanks!

[jjmclain]

I had a bike crash in Kona in 2007 and started losing range of motion in my hip immediately. It was then that I started going to doctors who said, oh, you are starting to get arthritis, etc., stop doing everything, wait until you are older to get a THR..you know, the usual stuff. Well, at the time I had no pain so I contined to race in triathlons (mainly long distance). My hip got progressively worse over the next few years and after numerous doctors visits finally told by one that I had AVN and my hip had collapsed. It was way too late to do a core compression, however, he said it is only successful 50% of the time anyway. I already had severe arthritis in my hip. I was told to wait until I was older and couldn't stand the pain anymore and get a THR.

I finally heard about BHR, did my research, including lots on this site, booked an appt with a top surgeon my insurance takes (Dr. Andy Engh), and scheduled my surgery at my first visit. I am 9 weeks post-op and doing great! I wish I had known about this surgery sooner as I felt like I spent 3 years in pain and with loss of sleep, etc. I feel like I have my life back. I was in end stage arthritis by the time of my surgery with a very large cyst. Luckily my surgeon could handle it and I have strong bones. If I had waited any longer, I might not have been a good candidate for BHR.

I should be able to run again eventually. Some surgeons say 6 months, others 12 months. Mine is quite conservative so it may be a year. No matter what, I know that I will be back racing some day!

[fattyres]

Glad to hear you are doing so well! Do you mean to say that not one of the docs you saw over those years of pain ordered an MRI? You only knew about the AVN after the femur head collapsed? Wow. Not surprised though. It is comforting to know there is a great option for those of us living with AVN in the event things go south. I am a medical researcher by training, so unfortunately (I say that because it can become consuming) I can't help but try to learn everything I can about this condition. I want to be prepared if I ever need to be.

Best of luck getting back to your sport!

[hipnhop]

Hi, I was two weeks out from Kona, got a Cortisone shot for arthritis pain and whammm- severe hip pain that took me off my feet for three months.  Doc thought is was an infection but finally an infectious disease specialist diagnosed it as AVN. Sought second opionion from Dr Mont. He stated it was AVN and extreme case of synovitis that caused the extreme pain. Never get a cortisone shot when you have AVN. 

The bottom line is I am at end stage AVN and have a three - six month window for HR surgery as advised by Dr. Mont.  My health care HMO provider is Kaiser which does not refer out of network so Mont is not an option. Although I found him to be extremely knowledgeable, helpful and willing to operate on me, I just dont have the luxury of using him. Kaiser is offering their recently HR trianied surgeon (0 HR surgeries)so I am fighting for the involvement of a more experienced HR surgeon in the OR.

I dont have many options  as time is working against me and i want to resume triathlons. I have been on cruthces the past five months, lost a lot of my conditioning and missed Kona.

If I was you I would get the surgery and not wait for your hips to collapse. Even percoet doesn't help.

[jjmclain]

Ed,

Dr. Mont is in Baltimore, correct? Where do you live? I had my surgery with Dr. Andy Engh of the Anderson Orthopedic Clinic. He has two offices. I used the Mt. Vernon office in Virginia. Top notch surgeon and the best in the area. Everyone I speak to has been to him or his practice for hips and/or knees. I too had AVN (read earlier post...happened after a crash in Kona in 2007) so I know what you are going through, although I never ended up on crutches before surgery. In any case, see if the Dr. Andy Engh takes your insurance. He is the best! I am 3 months post-op left BHR and doing great!!!

June

[hipnhop]

June I hadmy third consult with Dr mont before my suregry. Great guy. He told me to get it done asap as I had only a few months left of being a good hr candidqate. Heard of Engh but couldnot go out of Kaiser. In the end evrything worked out well.

[jjmclain]

That is great! I am now at 4 1/2 months post op and have not felt this good in years! Good Luck with your recovery...each week gets better!

[suesfineart]

Greetings.

I ran distance (between 6 - 10 miles a day) for 20+ years.   12 years ago, I was diagnosed with AVN in my right hip and right shoulder (from using crutches)..   I had a successful core decompression and that right hip grew bone back and it pretty normal.   Now I have pain in my left hip and an MRI has shown a collapsed left femoral head.   Also, having trouble with the right shoulder due to using crutches. 

After reading the above two posts, I am concerned about a "time period" where I am a "good" candidate for THR also, I am female, 64, and I can get Medicare in 8 months.   Wondering if I can wait, etc.   Any advice?  Thanks.