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13 year old with AVN of hip

Reign30

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My daughter was diagnosed about 20 months ago with AVN of her hip. She is very athletic and this dx has been deviststing to her, to all of us. She was at a softball tournament when she started to complain of pain in her groine area. We thought she pulled a muscle initially. A week later we took her to the dr. and he ordered an Xray. Immediately we were advised to get her off her leg(no weight bearing at all). She was on crutches for 4 months.

We took her to New York and Boston for additional opinions. We chose to go with the least invasive treatment, this was to do nothing. She is able to walk with a slight limp, she started to play basketball again this year (she does not have the ability she once had but we were happy she was on the court with her friends again). She is able to jog/ run up and down the court but not a full sprint. She started playing softball again last spring. She is a pitcher so she finds herself able to pitch and hit but does not really run the bases. Her coaches will substitute a runner for her being as she cannot slide or run to full capacity.

Again, we are elated that she can participate at some level, again not what she used to be but still a great player. After games she says her leg is tired and describes it as a heavy feeling. We worry we are letting her do too much, we don’t want her to have further damage but we also want to let her be a kid and enjoy her childhood.

She has aspirations of playing softball in college, we are not sure with this condition she will have the opportunity to play at that level. We sometimes ask ourselves would she be better off having surgery (THR) at this age? The doctor is taking a very conservative approach and suggest we wait for as long as we can to do any surgery (20-30years old). Of course by then her involvement in sports will decrease. We don’t want to do a surgery for the wrong reasons. We want to do what’s best for her. Sometimes we struggle with what that is. Right now she wants to do all the things kids do. Run, jump, ski, ice skate, sports, etc. but she is limited. Anyone have similar circumstances? Thank you all for listening and for any advice.
 
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Pumpkln

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Reign30
Welcome to BoneSmart, glad you joined us! :welome:
You are not alone with a teenager with AVN, here is a link to several threads about teenage hip replacement.
Teenage hip replacements. @jasminesmom checks in once and a while, her daughter's story in in the link I gave you.

You are going to have to weigh your daughters options, the state of her AVN, and if her limitations are increasing.
Suggest you find a second opinion with a surgeon specializing in younger joint replacements so you have the information you need to make a decision.
 
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Jaycey

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Have a read through the link Chris left for you. It's a hard decision but if your daughter wants to continue her sporty activities wouldn't it be better to get the surgery done ASAP? Dealing with pain and with all those limitations isn't really living is it?

I agree with Chris - find a surgeon who specialises in younger patients with arthritis.
 
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Reign30

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I am reading through the posts and they are very helpful. I am trying to figure out how to find the posts regarding the recovery. One person said they would post on the recovery side now but don’t know where to find that. Very interested in the recovery thread.
 

Pumpkln

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Depends on how you are accessing BoneSmart, if you are on a desk top or lap top, just above your first post will find links that says, Forums>Hip Area>Hip Surgery Pre-op Area.
Click on Hip Area, you will be able to choose Pre-op area, or Post op area.
On a phone or a pad, you will see horizontal lines on the left or right, click on there for a drop down menu for all the forums.
Here is a link to the post op area:

How to navigate the forum:
 
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Going4fun

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Is there a particular part of recovery that you are concerned about? The timing around school? ... So she doesn't miss much school?
 

Jobaby

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That is huge decision and one that can not be taken lightly. She is so lucky to be blessed with you as parent. Even though I am 56, i would like to share some of my experience with you, because in some ways it relates.
I have always been very active and fit. At 50 I was diagnosed with Rheumatoid Arthritis in neck, spine, hips and knees. Thankfully I found an amazing rheumatologist who has managed to control the situation with drugs. Unfortunately, that was not true for my left hip. A year ago it was increasingly inflamed and painful. Had to take steroids and have cortisone shots to try and get control of the situation. In June, I was sent for MRI as the situation was becoming intolerable. AVN was discovered. My rheumatologist thought I should take a conservative approach, hold off on THR and so we tried everything else. Drugs, therapy, ice, rest etc. It came to December and I could no longer walk without a stick, was off work (school teacher)and in agony, taking painkillers etc. I told my rheumy that I had had enough. When I visited the OS he put me on a priority list and performed surgery 6 weeks later. He explained to me that in my circumstances, I would have been better off sheduling THR as soon as AVN was discovered. By the time he performed surgery, it had become so much worse that he had to make adjustments for this. I am 6 days into recovery and whilst i am in pain, i can see a light at the end of the tunnel. Whereas with the AVN, all I could see was my quality of life and participation in activities such as hiking, dancing, gym work etc disappearing before my eyes. He has warned that I will most likely need the other hip and maybe my knees replaced in future. I will be following his advice and being proactive from now on. Whilst my rheumatologist is amazing, I wish I had consulted with my OS long before I did. They both come with a different skill set.
Hope this helps. I am not trying to sway you one way or another.
 
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Reign30

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Thank you. My daughters OS is the one telling is to wait. He said he will be retired by the time she needs hip replacement. We struggle with the thought, are we doing this just for sports, as she is able to walk and participate to some degree but not to full capacity. Based on the OS we are taking his lead but not sure it’s too conservative. We don’t want to harm her for her adulthood but want her to enjoy her youth.
 

Jaycey

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My daughters OS is the one telling is to wait. He said he will be retired by the time she needs hip replacement.
If she already has AVN it is never going to get better and could potentially get worse very quickly. I would find a surgeon with more modern thinking. Waiting until your daughter develops mobility issues is just not needed these days.
 

Celle

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I also think that a second opinion would be a good idea.

One thing to consider - has your daughter finished growing yet?
I'm not suggesting waiting for many years, but I think it could be a good idea to wait until she has reached full skeletal maturity. That is, until the growth plates in her femur have fused.
Having a hip replacement before then could affect the ultimate length of her femur.

Girls usually reach their full height between 13 and 15 years, so it wouldn't necessarily mean a long wait.
 

momofthreee

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Hi @Reign30. I recently found this forum when I learned that my 18 year old daughter would need a THR. Thanks in large part to the kind and informed people on this forum, I went from dreading the hip replacement to looking forward to having it done so my daughter can get on with enjoying her life. In her case, it's not sports, but many other things that she should be enjoying as a college freshman. She is planning to have it done when school is out for the summer.

You mentioned that the OS wants your daughter to wait until she's 20 or 30 years old. I remember reading on this forum a post from a young woman in her early 20s (I can't remember who) who had just had her THR. She had waited as long as she could. She expressed regret that she had missed out on fully enjoying her teenage years just to make it to her early 20s. That left an impact on me. Maybe something to consider as your family is weighing this big decision.

Wishing you the best!!
 
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Reign30

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Thank you. Yes this is so true, I feel as if she is missing out.
 
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Reign30

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One thing to consider - has your daughter finished growing yet?
Yes this is a good point. My husband and I talk about this as well. She is 13 now and on the small side. The OS did Xray her hand during one visit to see her growth. I think we will start outlet research and get another opinion on the timing.
 
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Reign30

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Would anyone be able to share some suggestions on pediatric OS in the northeast?
 
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Reign30

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Connecticut but we will travel if needed.
 

Pumpkln

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Reign30,
Most likely you will have to look to Boston or NYC. Start with looking at children's hospitals, most will have a pediatric OS. You will have to interview them to find out their experience with young joint replacements.
 
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Reign30

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Yes we have actually been to both. I was just trying to see if anyone on this site had a great experience with a particular doctor or group.
 

Jaycey

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I'm in the UK but will tag my colleague @Jamie to see if she can recommend someone in your area.
 

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