Teenager hip replacement after AVN

[Lily'smom]

My 13 year old daughter, Lily, sustained a non displaced femoral neck fracture after a fall in January of this year. They were tempted to take her to surgery that night to put in pins but waited until the following day. Just over 24 hours after the initial break, she finally had 3 screws placed to stabilize the fracture by a local pediatric orthopedic surgeon.

Of note, Lily also happens to have severe autism, developmental delays and while she has an uncoordinated gait, has been walking independently since she was 2 years old. She is non-verbal so it is really difficult to know if there is something that is bothering her.

In May of this year, she developed a limp. We took her to her surgeon who saw what might be avascular necrosis (AVN) developing in the hip bone. He recommended getting a MRI but we were unable to get her an appointment within the week in our local hospital. I didn't want to wait any longer so I got copies of all of her records and got an appointment 9 hours away from our home in Maine at the Children's Hospital of Philadelphia (CHOP) the following week. Based on the x-rays she had taken in Maine, the CHOP doctor confirmed the AVN diagnosis and explained our options of 1) osteotomy or 2) free vascularized fibular graft (FVFG). He recommended we go to Boston Children's Hospital (BCH) as he felt we would still get excellent care that was closer to home.

At BCH, the surgeon felt the osteotomy wouldn't be beneficial and that the FVFG might be her best option. BCH no longer performed that surgery there as they had not had a lot of success. They forwarded all of her records to Duke University where they had invented the FVFG and had an 80% success rate. After finally reviewing her films, the people at Duke University felt she was a good candidate for the procedure. FVFG is a big, painful surgery and I asked a lot of detailed questions to make sure she was a good candidate for the procedure. Three weeks ago, the people at Duke University notified me that they felt her disabilities would make the recovery too difficult and she actually wasn't a good candidate for the FVFG after all.

We then talked to her initial pediatric orthopedic surgeon in Maine and he thought that the fairly minor surgery of taking the screws out and doing an osteotomy wouldn't be a big surgery to put her through and might help with the AVN progression. Surgery was scheduled for today. We went to her preoperative appointment for final x-rays and to sign consents on Wednesday. After she had her preop x-rays taken, the doctor came into the room and said that the ball of her hip bone had now basically collapsed and that he no longer recommended doing the surgery. He suggested doing supportive care, going to a pain clinic in Boston and do low-weight bearing activities, such as swimming, until her pain became such that a total hip replacement (THR) was indicated, around the time of 17 or 18 years of age.

It is heartbreaking to know that despite trying everything I could do to find people to help prevent her hip from dying all summer, in the end, I was too late.

I work in a hospital and was walking in the halls of the operating room yesterday and ran into one of the surgeons who does adult hip replacements. He told me that we do not necessarily need to wait to get the THR. I then happened across this online community and am wondering if I'm doing Lily a disservice by not investigating doing a THR ASAP.

While it is so hard to know how much discomfort she is having, I expect having a collapsed hip joint is terribly painful. I would appreciate any thoughts about whether to try to put off the surgery as long as possible (to help minimize how many THRs she will need in her lifetime) or if it just doesn't make sense to try and get it done right away and that having a return back to a better quality of life is the most important factor.

Also, I have heard about Dr. Allison in California who does pediatric hip replacements. I realize THR in adolescents is highly unusual. I'm hoping to find the best of the best for pediatric THRs and am willing to travel throughout the US.

Thank you in advance for any input anyone may have to offer - Amy

 

[Josephine]

They were tempted to take her to surgery that night to put in pins but waited until the following day.

That was a mistake. These fractures need to be treated as an absolute emergency in order to give the femoral head the best chance of resuming a blood supply. In my opinion, the AVN probably started then.

Three weeks ago, the people at Duke University notified me that they felt her disabilities would make the recovery too difficult and she actually wasn't a good candidate for the FVFG after all.

I totally agree with that.

While it is so hard to know how much discomfort she is having, I expect having a collapsed hip joint is terribly painful.

Not 'terribly' - excruciating!

I would appreciate any thoughts about whether to try to put off the surgery as long as possible (to help minimize how many THRs she will need in her lifetime) or if it just doesn't make sense to try and get it done right away and that having a return back to a better quality of life is the most important factor.

Absolutely not! Get it done as soon as possible. Sooner the better. She is very unlikely to need 'many' revisions in her life time as modern hips can last upwards of 30-40 years and probably a lot longer. If she even has to have two revisions I would be most surprised. Longevity of implants and revisions: how long will my new joint last

As you probably know, we've had three other members whose teenage children had hip replacements. Guess we're getting quite a collection! (BTW, these are all old threads so please don't post in them)
teenager hip replacement after SUFE
Maya's recovery thread
My 15 year old having right hip done 7/12 with left set for 8/23

 

[alexthecat]

While it is so hard to know how much discomfort she is having, I expect having a collapsed hip joint is terribly painful.

Oh, I can answer that one! Like your daughter, I had a hip fracture that was pinned. That fixation ultimately failed and my femoral head collapsed. I can't begin to describe to you how incredibly painful that was. By the time I had my THR, my leg was locked into one position, so I could not walk. I could sit in a chair for a short period of time before the pain became absolutely excruciating. I couldn't sleep more than an hour or two before I was awakened by painful muscle spasms in my leg, hip and back. Your child may not be at that point yet, but that's her future. I wouldn't delay in getting her hip replaced. She doesn't need to deal with physical disability and constant pain, on top of her other challenges.

Also, if I can say... It sounds like you're blaming yourself or feeling regrets that things didn't work out as you had hoped after her hip fracture. I hope you can let go of that. You are a great mom! Having a child on the spectrum is hard. Having a child with a hip fracture is hard. You did the best you could with what you knew at the time. You're still learning and you're still doing your best. I just want to reach through the computer and give you a hug.

Believe it or not, this will all be behind you both one day. I am more than 6 years post-THR. I never give my hip a thought. Once your daughter has had her THR, she can get back to her normal life. Without it, unfortunately, her quality of life will be severely compromised.

 

[Jaycey]

I expect having a collapsed hip joint is terribly painful.

Indeed this pain is worse than you can imagine. My left hip collapsed and I had to limp around for 6 months waiting for surgery. I can not imagine how horrid this must be for someone so young.

Since your daughter can't communicate how bad this pain feels that alone would motivate me to get this done quickly. There is no need to wait and every reason to get this fixed and let her get back to living. I do hope you will investigate moving this forward as quickly as possible.

 

[bluejeans]

I can't read this and not comment. What a horrible ordeal you have all been through. You've got an amazing daughter. Kudos to you for trying so hard to get answers. I can add nothing except I wish you guys luck and strength.

 

[Josephine]

#teenagehipreplacement

 

[jasminesmom]

Hi, I'm jasmines mom who went through this not that long ago. Your daughter may not be able to communicate just how much pain she is in. Jaz was in excruciating pain for a long time and it was heartbreaking every day and I felt useless and unable to help. The many members on this site and in particular Jo were so valuable with their advice and guidance and gave me the courage to fight For Jaz to have THR earlier than her surgeons were willing to do. With the help of Jo I found another surgeon willing to see Jaz almost immediately and operated on her a few short weeks later.

Yes it will be a huge challenge for you post surgery but the pain she will be in now will keep getting worse and worse.

Shout from the roof tops, Look for more Specialists and take every bit of advice from this site you can and don't take no for an answer. It's very difficult to not blame yourself and even harder not knowing where to turn.
You have found exactly the right place and the right people to help you UNLEASH your inner mumma bear and get your cub pain free as soon as you can.
Keep us updated
Kirsty xxx

 

[Zelda]

While it is so hard to know how much discomfort she is having, I expect having a collapsed hip joint is terribly painful.

Even before it collapses the pain is horrendous. It actually make me angry that doctors talk about waiting until the pain is unbearable and I think they simply don't understand how awful it can be. I would rather have new hip replacements every ten years than go through the pain a damaged hip causes. Luckily, it seems like my new hips will last much longer than that, possibly even a lifetime.
I know it must be so hard to make that decision for someone else but most of the members here who have had THR wish they'd done it sooner rather than later.

 

[lswash68]

Consider yourself lucky that Duke declined to perform the FVFG. My daughter underwent one at age 12. It is barbaric and it didn't even end up working. A year later I found a surgeon at HSS who performed a THA. The fact that HSS doesn't even perform FVFGs is an indication that they aren't a good solution. Yes, my daughter's hip will need revisions over the years, but if I knew then what I know now, I would have bypassed the FVFG.

 

[Josephine]

Absolutely, @lswash68 I've always considered that to be a barbaric procedure even when I scrubbed for them!
I expect you can confirm that the graft site in the lower leg is much more painful than the actual hip surgery!

 

[lswash68]

Absolutely, @lswash68 I've always considered that to be a barbaric procedure even when I scrubbed for them!
I expect you can confirm that the graft site in the lower leg is much more painful than the actual hip surgery!

Yes, MUCH more painful (but leaves an impressive scar that is a great ice breaker.)

 

[Josephine]

 

[Lily'smom]

Thank you lswash68 and Josephine - I guess we got lucky Lily didn't qualify for the FVFG. As an update, after 14 years, Lily finally received a medical diagnosis in September that explains her disability. It's called Glass Syndrome or SATB2 Syndrome. Among other things, the syndrome is associated with osteoperosis. They did a bone scan and found that her bone density is very low. She'll soon start bisphosphonate therapy and then get a hip replacement when her bone strength has improved. Luckily, an extremely high pain threshold is associated with this syndrome. Lswash68, what surgeon did you see at HSS and would you recommend that surgeon/hospital?

 

[Pumpkin]

Hope her osteoporosis improves soon, and she can have her hip replaced. Her high pain threshold will help between now and time for the THR.

 

[lswash68]

We initially went to HSS to see a pediatric surgeon (Dr. Dodwell.) She is the one who referred us to Dr. Mark Figgie who performed the operation. This is the most amazing hospital. They knew we were scheduled to ride back on the train (to Virginia) the next day and called back some of the radiologists after the department had closed. They opened it back up so she could have a CT scan that night. Dr. Figgie was a good fit for us and he had previous experience operating on young adults. Surgery went well. Nursing staff and rehab personnel are the best we have encountered. Due to the complexity of your daughter's situation, I might start out in pediatrics and see what they say. They may refer Lily to another surgeon or perform the operation themselves. But I have 100% confidence that you will receive the best care regardless of who you see. My thoughts are with you and your daughter and I hope that you will continue to post updates. Please reach out to me anytime. I'd love to help someone navigate all of this as I was without any guidance and it was a nightmare.