I don't know a surgeon to recommend. Can I ask what is going on you need a surgeon. My son is 17 and just began maintance. He has had severe pain to bilateral knees. His oncologist referred him to ortho. They did X-rays of bilateral knees. Which did not show a reason for his pain. They referred him to physical therapy. He is taken pain mess every 4 hours without much relief. I hope y'all find the answers you need an best of luck.
Several parents have recommended Dr. Mont and his colleague, but they are in Baltimore. Perhaps if you contact them, they could recommend someone on the west coast? There are so few orthopedists out there with experience with this. I hope you get some good response, and a good plan for going forward.
Our son has AVN on his left knee. It does not hurt and does not bother him, but the knee joint is essentially flat at this point. He's been ordered to be on crutches for the past 10 weeks. We've now been told to get a wheelchair to ensure he minimizes the weights on his legs/joints.
Our Ortho DR/surgeon recommends surgery to insert a plate to ensure the bone stay straight. Right now, the joint/bone/knee/hip are "crooked" on the left side and the right side is not perfectly aligned.
We want a second pair of eyes on the x-ray and their thoughts on the procedure.
I didn't see any response to your comment about the X-rays. My understanding is that X-Ray is not a good diagnostic tool for AVN. I think most have used MRI to get proper diagnosis, even for fairly advanced cases. Because of his age, he is at an increased risk. I don't think there would be anything wrong with asking for a second look through an MRI. I hate that he is in continual pain!
My daughter has actually had surgery twice with Dr. Mont. Emily was 19 when she was dx with NHL and was on a COG trial which included vinblastine weekly and those dreaded steroids - prednisone?- she came off treatment at 20 and was then dx with AVN bilaterally of her hips and knees a year later. Since she had just turned 21 the ped ortho's would not touch her and they seemed to have the most - though still limited- expertise in this area. Most adult ortho's just want to wait until the joint collapses and then replace it.
Not wanting to "wait" I posted on these boards trying to find another answer. That is how we found Dr. Mont. We live in Northern New Jersey and he is in Baltimore. We decided to have him perform core decompressions on all four joints and try and hold off the progression. Core decompressions are also controversial but we felt it was better then doing nothing.
Her right hip, however, was always further along and seemed to continue with the progression. Around this time last year we had her xrays sent down the Dr. Mont and found that the hip was in early collapse. Dr. Mont suggested getting her into surgery soon because he was hoping to do a bone graft of the femoral head with cadaver bone instead of the total hip replacement. However, once he got in there the femoral head was too far gone and had to do the THR. will continue
Dr. Mont does review films that are sent to him . I always went through one of his PA's - Jill- but she recently sent me an email saying that she was leaving to take a position closer to her home.
Another route to get some names is a website called AVN.org. (I think) I haven't been there in awhile. You do have to pay $15 for a year subscription but you get access to the forums and the listing of the top doc's in this field.
Let me know if you have any other questions, I have spent alot of time researching this.
We used David Scher, pediatric ortho surgeon at the Hospital for Special Surgery in NYC. He had actually diagnosed a friend's daughter's leukemia when everyone else missed it. Aidan was 7 when he was diagnosed with extensive AVN in both hips, both shoulders, and both ankles. His right hip collapsed but the left hip has managed to heal over the years. There was some slow healing of the right femur head as of last year, a little more flattening in the left ankle. Aidan's 11 and is due for his annual exam. His feeling was that at Aidan's age and variables he had a great chance to heal naturally. He does think at some point he'll need surgery but not until well into adulthood or middle age. We are monitoring it annually. I do know for teenagers the prognosis is much more dire and know of a now 20 year old who has had double THR.
He collaborated with Aidan's onco, researched other options, responded to emails. He may know someone out in California but I'm sure he'd be willing to look at the x-rays as well. You may use my and Aidan's name. He has a large AVN population. Most of them are from no known cause but sees a lot of them, and can probably tell you some of what the recent thinking is.
I did contact Dr. Scher - being in Bergen County, NJ - the Hospital for Special Surgery would have been a no brainer. He sent me an email back saying that because of her age he would "not touch" Emily. He did not even recommend an adult doc. Through more research I did find who was supposed to be the adult AVN doc there and sent all of her info - he came back saying she was to young for a THR and would have to live with the pain and maybe PT would help.
Sorry to hear that wasn't a successful connection for you. I know Dr. Scher likes to hold off doing surgery for as long as possible for the younger kids since it would have to be repeated several times in a lifetime as things wear out, and Aidan's collapse was 50%. Greater than 50% he might have been a candidate for surgery, but even then he would have been hesitant.
In Aidan's age group his data showed similar outcomes with or without surgery. Imagine - a surgeon not recommending surgery! And Aidan's healing went pretty much the way he predicted. We will see what the final shape of his his femur looks like by the time he stops growing. I don't know much about the knees. In the end it comes down to what you think is best for your child. Definitely keep trying to get a second opinion. Dr. Scher's was mine. He supported the first opinion I received which was pain management and PT. It worked for us. Aidan went from being wheelchair bound to walking with barely a limp in under 2 years and almost pain free in 12 months. His hip will always bother him when he over does it but I'm keeping my fingers crossed that he can delay surgery into middle age or older. The real risk for him is osteoarthritis.
Ann, a truly small world! He was so great, unassuming, so willing to collaborate with the oncologists and share information with them and me. In fact the information he shared helped other kids in our clinic with AVN. And he connected well with Aidan, and has been his orthopedist for the past 4 years. What were the odds, right?
Dr. Jennifer Hooker treated Austin for a fracture in his heel from osteopenia. She was awesome. He was treated/followed by her at MUSC before she moved back to NC. She really was great with him! Here is her information:
Holly (Mom to Austin - Dx 1/20/10 with pre-b ALL)