<p>I know to some it might sound weird to seek information about a medical condition online, and especially on one devoted to the college search, but I also happen to know there is very good information being exchanged here every day. Also, we all have kids around the same age, and this is something that strikes young athletes…</p>
<p>So now it’s my turn to ask: 15 year old S was diagnosed with this last week, and the suggested treatment is a bone graft from his hip, followed by two years of recovery/rest/possibly more surgery. No hiking, running, backpacking or contact sports for two years. Cycling and swimming OK.</p>
<p>Any of you have experience with this diagnosis and treatment? This is a really tough week for my active son.</p>
<p>Are you seeing a sports medicine specialist? My daughter had hip surgery to repair a torn labrum this fall - a much milder surgery - and what made that possible was the sports medicine practice at Childrens in Boston. The doctor who did the surgery invented it and, according to 2 or 3 others, is incredibly skilled. As in, they need to dislocate the hip and get into a couple of locations but he manages to do it with 2 tiny holes while other doctors may need an open incision. </p>
<p>In other words, what is the skill level / training level of the doctors? I’ve been treated in Ann Arbor, where they have excellent sports medicine, and it’s a growing specialty - especially soccer and girls - but the quality is highly variable. </p>
<p>If you are at all concerned about the suggested course of action, you can take your son elsewhere for a look. I assume they’d actually want to see him instead of looking at the MRI only.</p>
<p>Hi lergnom- we’re a long way from Boston or any large medical center/teaching hospital, but ARE in a small western city with a medical community that takes pride in being current (but maybe not cutting edge) and responsive to patients. We serve a large region, so a range of cases come through. My DH is a physician, and I feel confident in the quality of the surgeon- he’s done a lot of these procedures.</p>
<p>I guess my biggest worry is whether we are missing out on what you’re describing- the latest and greatest ideas for solving this. The down side of traveling to a specialist is the lack of readily available follow-up, which he will surely need. Still, I’m very interested in hearing from someone who has had a surgery for this condition that was possibly less invasive, or had a shorter recovery time. I’ve read articles, but I do value anecdotal stories, and also the voices of other parents. Honestly, physicians are not good about refering patients to someone they think might do a better job than they would. Generally (and I’m married to one) they think they would do the best job. That’s why I’m activating the CC network </p>
<p>I do not have info about disease. However, I have huge experience with sport of swimming. Since your S. is allowed to do this, I can tell you that swimming has very positive influence on both physical and emotional side of life and I highly recommend it.
The best of luck, I hope he is not too bombed out, tell him that he is very young and has very good chances in his life and tell him to try swimming.</p>
<p>riverrunner- If in your research the “top dog” in this area is revealed, I wouldn’t hesitate to get on a plane. My son had a non-malignant tumor on his hip and wound up having it removed by a procedure developed by a surgeon at Mass General in Boston. We went there for the surgery. It was a lot less complicated than your son’s case, but I think follow-up can be arranged in your home community.</p>
<p>Hi Miami,
He’s been driving himself to the pool every day since his diagnosis and flailing away for 45 minutes (he’s a runner, not a swimmer.) I’ve arranged for him to have some private lessons very soon, so that he can be more effective and feel better about swimming. He’s like me- not a gifted athlete, but has an addiction to the endorphins. Am looking into a used road bike, also. I can’t just take away all of his passions. We have to replace them somehow…</p>
<p>riverrunner, I’m sorry to hear about this. I have no experience with this, but I want to tell your son that starting competitive swimming at his age is OK. I’ve seen HS freshmen boys joining my D’s summer league swim team practically with no swimming experience, flailing and barely able to finish a 50 free, but by their senior year they were placing at the HS State level! A few private lessons, an encouraging coach, and a bunch of supportive teammates will help him with his transition to the new sport.</p>
<p>Thanks for encouraging swim team, BB. At our high school, swim team doesn’t cut. So now my son’s goal is to be able to swim any stroke for any acceptable race distance in a non-embarrassing time by the start of the fall season. This seems completely reasonable :)</p>
<p>The thing is that this condition, as you certainly know, usually starts treatment as rest, rehab, etc. with this kind of surgery being relatively uncommon. My daughter’s injury or a knee repair is common and I could probably open my mouth at Starbucks and find people who know about those surgeries. But I suggest you ask your doctor who might be good for a consult and see if that can be done electronically with the MRI sent or accessed. A read is a good idea. A physical consult can follow if that makes sense.</p>
<p>I live near NYC, so perhaps I have a bias, but if I were you I would find the experts at The Hospital for Special Surgery or The Hospital for Joint Diseases. Both (in NYC) are top, top, top places for musculoskeletal problems. Even ones that are fairly esoteric.</p>
<p>And for something as important as this, for someone as young as your son, I wouldn’t hesitate to go there.</p>
<p>The concern about follow-up care is a valid one but a second opinion from someone at the top of the field can either provide comfort that they would provide the same care your doctor is or it can lead to a cooperative relationship between a far away and local doctor. In otherwords, if financially possible, I think it’s well worth paying for the most informed opinion.</p>
<p>Have you looked into support groups for others with this condition? In my opinion, no one knows where the best doctors and care can be found like those with the condition or their parents. </p>
<p>I wish you and your son the very best of luck.</p>
<p>I second Children’s Hospital of Boston. I live in NJ, but went to Children’s in Boston for a second opinion on my daughter’s bone tumor. We ended up switching to the doctor there and, despite having to travel to Boston fairly frequently, don’t regret it at all. She has had six surgeries there and has had roommates from all over the country. My daughter has had such a great experience that she’s now looking at colleges in Boston. :)</p>
<p>2 cents, thanks for the links. Our ortho surgeon is one of the Jupitoor docs, so I’ve scoured that website. Mayo’s was pretty good. </p>
<p>I appreciate the suggestions from all of you for hospitals and clinics in your areas. We are kind of a one-horse town, so I’m gathering as much info as possible from the broader medical community. I’m really struggling with the idea of traveling for surgery. Getting to Boston takes about 10 hours and at least two flights. Can’t quite imagine doing that with a boy in pain. I worry that follow-up here would be compromised if I made the choice to go “outside” for the surgery. I hope I’m not spilling the beans when I say surgeons have big egos. (married to one) </p>
<p>The diagnosis is not in doubt. The treatment options are very limited, from everything I’ve read. The nice thing about the Jupitoor project is the collaborative nature of it- docs from around the US are sharing their cases to arrive at the best possible treatment plans. For those of us in smaller cities, this is key, since our local doc may not see all the full range of cases personally, but can get treatment opinions from the rest of the participants. Of course on-line access to my son’s xrays and MRI makes this exchange instantaneous and they’re all looking at the same data. </p>
<p>I had looked for a parent support group online for this problem, but had come up empty, which is when I posted on CC I’ve actually found a local family who’s son has gone through this procedure, so I’m not feeling quite so alone in all this.</p>
<p>I sooo appreciate each of you checking in. I HATE becoming an expert on yet another medical problem…</p>
<p>My daughter also had this diagnosis. The first dr. she saw wanted to to a microfracture (young sports medicine dr.) . Then she went to a more experienced sports medicine guru, who operated, cleaned out her knee and determined that her muscles, ligaments, etc. were developed enough to support her without microfracture. She recovered well and has not had any problems. It pays to get an expert opinion, even if it means traveling and living with the hurt feelings of a dr. in your community.</p>
<p>RR,
Good luck whatever you decide. My DS had a very rare pelvic type fracture 6 years ago while playing football. We went to doctors in the area who had limited experience dealing with that type of injury. They really didn’t handle it well. And they didn’t have the decency to say they were unfamiliar with the injury management. By the time we found a doctor who was familiar with his injury, we were told “well, I would have done surgery if you had come when it first happened, but it’s too late now” No one had even advised surgery at the beginning. My son is left with a limp and will have problems now forever, I guess.
That’s why we aggressively sought the best when my DD was diagnosed with her bone tumor. If you use a local doc who networks with top docs in the field, hopefully, you’ll be ok.</p>
<p>dkitty21,
Thanks for your encouragement, and so sorry your son hasn’t had a great outcome from his injury.<br>
We are leaning toward having our local surgeon do this procedure. Everything he’s saying jives with what I’m reading about the most current approach to this condition. I’m confident in him as a surgeon, and am very concerned about the months that follow: PT, and evaluating the success of the surgery over time. Asking someone who DIDN’T do the surgery to then take on the recovery process is not ideal. The guy who did the work will be the most motivated to work with us for a great outcome. </p>
<p>ernie, thanks for telling me about your daughter’s good result. That’s what I needed to hear today!</p>
<p>Now we’re trying to figure out timing. Busy teenagers don’t actually have time for surgery, as it turns out…:)</p>
</p>
No one had even advised surgery at the beginning. My son is left with a limp and will have problems now forever, I guess.