Connecting with teens/parents of who have had THR

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vbc7987

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I am the parent of a late teen who is facing THR in both hips as a result of AVN stemming from oncology treatments which included very high dose steroids. Would love to connect with anyone who has been through it either the teen patient or the parent!
Thanks!
 
Thanks all for the leads. My daughter is 18. Was diagnosed with Acute Lymphoblastic Leukemia at 16. She is nearing the end of her treatment, thankfully. But she has had multiple serious complications as a result of treatment which is, sadly, too often the case.
About a year ago was diagnosed with AVN (Avascular necrosis) bilateral hips, knees, and ankles as a result of the high-dose steroids as part of the ALL protocol.
She had a core decompression done on her right side last December (hip, knee, ankle) which - at least with regards to the hip - was not successful. Both hips are now in the process of collapse so we are looking at likely having both hips replaced within the relatively near-term future.
 
Both hips are now in the process of collapse so we are looking at likely having both hips replaced within the relatively near-term future.
Gosh, I hope she can get her THRs quickly! My left hip collapsed. I would not wish that pain on anyone! Can't imagine a teenager having to deal with this. Please keep us updated.
 
Gosh that's quite a history! As for the CD, in my career I've never known one TO work so I'm not entirely surprised.
 
vbc7987, tbatt9 here. I am so sorry to hear about the ordeal your daughter is going through. My 15 year old (now 16) son has had both hips replaced. First in July, second in August. His hips were near collapse due to AVN within both femoral heads. He has had some rough patches in his recovery but overall he has done very well. This online community has been an amazing resource of very kind and well informed people that helped us tremendously. If I can be of any help sharing our experience please don't hesitate to ask. God bless.
 
My daughter had her left hip replaced at the age of 13 (after a failed FVFG.) Please reach out to me if you have any questions or just want someone to talk to.
Laura
 
@lswash68 please do tell us some of your daughter's story. We do need more such posts on here.
 
Male Teen, 18 yrs old. Intensive steroid use due to stem cell transplant and resulting graft vs. host. WIthin 6 months of treatment, pain began in left hip. MRIs showed start of bilateral AVN. Core decompression with stem cell bone grafting into cores was performed to try to reestablish blood supply to heads. within 6 months, right hip showed partial colapse and left was a full collapse. At 16 was told to wait until finished growing to do a double THR. Now 18, hand bone scan shows growth plates not quite yet finished fusing. But soon. In new england, Boston Children's Hospital won't touch me. I'm also a kidney transplant patient (post 2.75 yrs) so overall, small for my age due to stunted growth during dialysis years. The implants used would have to be the same used for a small woman, since they simply don't make child sized implants. I walk with a limp and shoe lift. I have minimal pain but can't lift heavy things or stand or sit in place too long..keeps me from getting a typical teen job. Looking to consult with a Makoplasty surgeon in RI to see if he'll take me on.
 
@AlexofRI .... how about starting a recovery thread of your own so we can talk about your situation without derailing this thread? My first question is, have you considered going to the Hospital for Special Surgery in New York? Because you have some other issues besides your hip, you're going to need to find just the right surgeon. Also, I'm curious as to why you are zeroing in on the Makoplasty procedure. So, let's discuss all this in your thread...okay? Glad you've joined us here on the forum and I look forward to talking more with you.
 
@AlexoRI....my son now 16 had both hips replaced last summer. I can't recommend the Mayo Clinic enough. I know it's not close but the care he got there was amazing. I will look for your separate thread and will be happy to share his story if it helps at all.


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The implants used would have to be the same used for a small woman, since they simply don't make child sized implants.
Oh yes they do! When I was working the in surgery, I had a large cupboard full of different sized implants that even included ones for small statured adults and those with dwarfism. Plus nowadays, implants can be custom made with much greater ease than they could in my day! And custom made is done from the MRI scan so will be precisely made to fit you! Never mind the MAKO, you need to find a surgeon who is at the cutting edge of this business! That's much more important.
 
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