THR teenager hip replacement after SUFE

[Josephine]

I often take things apart to see how they work, but weird I know but I've always been like that.

I don't think that's weird at all! I've spent most of my career taking instruments and equipment to bits to see how they work!

 

[jasminesmom]

You do work late @Josephine!

Have been trying in vein all day to get Jaz to pose for a photo. She's grown up so much in three years. All I want for the new year is laughter, jokes, silliness and to cherish the happy moments.

Here's a few pickies of us. Jaz three years ago when her hip gave up. Next one was the day we met her surgeon who gave her a new hip. Next one Jaz (left) with my niece having fun. Sams hip screws - ive spared you all the pictures of Sam sat in his pants on his computer for the past 9weeks, jaz, myself and her dad having some fun on Christmas Day this year. Sam had left the kitchen in utter disgust at our dressing up and dancing to old songs. one of myself, Jaz and Sam three years ago at high tide and finally a rare one of us all, jaz is the one hiding herself.
I would love to see some photos of some of bonesmarties xxxx

 

[Josephine]

What a lovely album! And you're a gorgeous family - all of you! Sam looks just the kind of adolescent that would be intolerant of medical instructions! Jas is such a beautiful young lady too!


Here's one of me and Richard Warner, the owner of this site

and me, Jaycey and Richard

 

[jasminesmom]

Wow? How wonderful to see you all!!
Beautiful women, beautiful souls!! So nice to know you are appreciated and being treated by the boss x

 

[Josephine]

Oh he did! He booked me for two nights at the Dorchester in Park Lane, dinner at the OXO restaurant on the South Bank (first picture) and then Jaycey joined us for lunch at the Dorchester the next day. You can see he even paid for me to go to a beautician for some unaccustomed make-up - much good it did me! But he's a very appreciative boss!

 

[niknak79]

Good morning @jasminesmom My kids are now 10, 8 and 6 years old - I deliberately chose to have kids in my 20s as wanted to have them while my hip felt good, and has been told to expect initially only 10-15 years out of my first replacement as I was young when having it so likely to put it through its paces! However it looks like it could last a good bit longer - in part because it's a great joint design I think (custom-made and at its time very cutting edge) and in part because I know I "protect" it.

I had hip problems from age 8 years old so for better or worse I tend to stand putting more weight through my good leg and my ligaments etc. are not great from growing "wonky", so range of movement a bit restricted- all of which has meant that I possibly put less wear on a joint than they had initially expected. I also have obeyed the no high-impact sports rule (in spite of being seriously tempted otherwise in my 20s when my hip felt great!) especially no running (which is a shame as running was one of my fave things aged 8!).

Instead I focused on cycling and swimming - but also did a lot of scuba diving in my 20s, and have tried a few watersports (wind-surfing, surfing- though due to bad balance from uneven weight-bearing found the latter very hard, so bodyboard instead (still to this day, though not amazingly well!!)) & used to do quite a bit of hiking and the odd bit of climbing. & of course danced about when I felt like it at gigs and the like! In other words, the THR gave me a pretty good quality of life & allowed me to do pretty much "normal" stuff, managed to go to uni, travel, work in various jobs, move a long way from home, start a family etc. etc. I am a marine biologist and still work on ships/boats quite often, and the hip has allowed me to do all that. (most of my work nowadays though is desk based).

So I have certainly made good use of the hip, and of course three pregnancies probably put a bit of strain on it, though I didn't seem to feel that in my hip, just my lower back & sacroiliac joints- like so many "normal" pregnant ladies! My babies were all born by c-section but not due to the hip. I had severe pre-eclampsia with each so all were preterm (thankfully the younger two only just by a couple of weeks) - in a way the c-sections probably saved some extra issues for the hip! Afterwards the hip felt fine and it really has only been in the past three years (when the hip would have been around 15 yrs old) that it has started to play up a bit especially in terms of stiffness. This does coincide with when I went back to work full-time so I do wonder if all the sitting at desks etc. hasn't helped - which is why I try to build in a bit of walking at lunchtimes etc. Friends now comment on my limp (as do others who have only just met me) - whereas before I barely limped so few would have noticed.

I am keen to delay a revision for as long as possible, in part due to not wanting to burden everyone else during my recovery etc., but also because I realise every op has risks and I worry I will be disappointed if it doesn't return to being as great as the first decade on my first hip. My ortho team seem to think although there is a little wear I really should get a good few more years out of it, so it's possible that the pain I have is all soft tissue and/or stemming from my lower back.

To be honest having walked a bit wonky for so long in my life it's almost inevitable something will complain eventually! My range of movement isn't great so things like doing up shoelaces have always been a challenge and consequently lifting toddlers etc. would have put a twist on my back and I have probably just done that too often over the years! However I am not yet dependent on painkillers to get through the days/nights (which I was before the THR) and find gentle stretches/walking/movement generally helps with the stiffness, or warm baths etc. I do feel old before my time right now (& have just moved all heavy pans/plates etc. up to higher cupboards as really struggle to lift them out of low ones!) but hope this will improve once the docs figure out the main issues and we get some sort of plan to get me moving better again.

My best advice would be to keep fit and active - hips definitely like a bit of movement not prolonged sitting, although nothing high impact! Core muscles & good posture is vital especially for all the rest of you which sometimes suffers from hip-induced limps etc. such as your back (I used to do yoga and pilates - sometimes had to have different versions of postures due to my hip movement limitations but could do a good bit), and keeping your weight to a healthy level puts less pressure on all the joints. (mine has crept up a bit after having the kids but just on the high end of "normal" apparently!- could do with losing a bit though!). I had "good leg" knee problems a couple of years after the THR which were apparently due to the wear on that leg while my hip was bad, so needed some cartilage trimmed/tidied but it was simple day surgery and has been great since. I was always warned that back and knees can suffer over the years if had long periods of hip issues.

I am forever glad to have had the hip done at age of 19, it certainly gave me my life back and let me dictate my future (mostly!). I have never been able to wear high heels (live in trainers, or used to live in DMs) - partly due to a leg length discrepancy - & I also had an awareness of wanting to pack a lot into my 20s while the hip was good, which most 20 somethings don't feel as strongly. But I realise that could also be just the way I am regardless of the hip!

I still dream occasionally of what it would be like to run pain-free, but that is a small thing to forego when there is so much else out there. As frustrated as I am currently by the increased stiffness and aches, and feeling less mobile, I know I have had a very good run of it so far and hopeful that I will get back to feeling like I did a few years ago whether through physio/regular cortisone injections or eventually surgery. I also realise I may have to make changes to how I work- less sitting/driving etc.

OK, that was an epic essay, sorry!! I sincerely hope Jaz gets the full benefit of her shiny new hip in the way I have, and that it lasts for a good long time to give her the similar freedom I have felt.

Hope the party goes really well tonight! xx

 

[Josephine]

and has been told to expect initially only 10-15 years out of my first replacement

Actually that's not been true for about 20-30 years. Statistics are now showing that people who had their hips done in the 1990s and even earlier are still going strong. A hip surgeon of my acquaintance told me about a year ago that he had just done a revision on a patient whose hip he installed in the middle 1960s and that the following week he was redoing one he done even earlier than that! I do know that if hips really did only last 15 or 20 years, by now we'd be so swamped with revisions, we wouldn't have any time to do primaries any more! Think of that!

However it looks like it could last a good bit longer - in part because it's a great joint design I think (custom-made and at its time very cutting edge) and in part because I know I "protect" it.

The design of the hip is inconsequential, we know this because the statistics show that. And that there is little or nothing a patient can do to 'protect' the joint. Other than avoiding obvious activities such as you have described! Even then it's largely questionable if it does have any real impact. Only time will tell on that.

Still, Happy New Year all!

 

[Kelpie]

I've just read your thread from start to finish. I've laughed and cried and thoroughly enjoyed reading it. You and your children are an absolute inspiration. What a wonderful family you are. You really should write a book you know!

We hope to visit the Gower this summer and I'll keep my eyes open for the beautiful girl with the "shark bite" flying with the waves. If you see a blonde granny with a blonde Great Dane, it's probably me!

 

[jasminesmom]

I wanted to reply to the last few posts ive had but Jaz has been a tough slave driver today.. She's all but made me and her father move our stuff out!
I promise I will reply tomorrow, I have lots of questions for you @niknak79
@joselphine, I loved the pictures you sent and @Kelpie, you are very kind. Xxxxx

 

[Maya'sdad]

Hello Jasmine's mom, I have read your thread several times in suspense to see what the final outcome of Jasmine's surgery was. I'm so happy and relieved that all went well and she is carrying on with her life. It seems your family has gone through quite a bit over the past few years with both Jasmine and Sam's health issues.

I can certainly relate, as my 13 (14 in March 2016) year old daughter Maya, will likely need a total hip replacement in the very near future. She was involved in a horrific automobile accident approximately 8 months ago which left her with a displaced and fractured femoral neck. She underwent emergency trauma surgery but after three months there were complications from non-union which required a valgus osteotomy. Everything looked good for the first six weeks following the surgery, but she has since developed AVN and the hardware has shifted to the point where the screws securing her femoral neck have poked through the top of her femoral head, causing her great discomfort.

To boot, Maya is autistic and has trouble communicating her thoughts and feelings. Since our last follow up with her surgeon, we're faced with daunting task of deciding whether to subject this poor child to another reconstructive "experimental" surgery which there are no guarantees that it will work, or a total hip replacement. I've read numerous articles about THR in such a young patient, but have found no substantial information about growth issues or complications from leg length etc.

I was hoping that you might be able to offer some inside information on short/long term outcome of a teenage child with a prosthetic hip? If others reading this post would like to chime in, I'm all ears. I'm trying to make the most educated decision possible with regard to my daughter's health.

I thank you in advance for taking the time to read my lengthy post and would sincerely appreciate any words of wisdom.

My thoughts and prayers go out to you, Jaz, Sam and your entire family.

 

[niknak79]

Hi @Maya'sdad , just a quick "chime in", firstly to express my condolences that you and Maya are having to go through all this, & secondly just to let you know my own experiences. I had Perthes disease as a child (diagnosed aged 8) which is similar to AVN (though not the same). I had two different osteotomies (one aged 8, one aged 13) and some reconstruction work also (aged 10 I think- it all blurs a bit now). I had issues with the fixator from the last osteotomy which required further surgery.

They also did an operation on my lower leg growth plates to help with the leg length discrepancy which was an issue but didn't work. By the time I was 15 most options has been exhausted except for total fixation or total replacement. However, I was told that as I was still growing at age 15 they wouldn't do the replacement until a couple of years after my first period when I would have stopped growing (I didn't get my period until age 16). As it happened they didn't decide to do the replacement until age 19 by which time it was bad. Needed crutches all the time, had great difficulties with pain management and sleep (though the pain clinic I was under the care of were excellent).

However, that was 17 years ago and I believe there are more teenagers being given THRs now and successfully. I still have a leg length discrepancy but it is less than it was pre-THR, as they put some extra length in the replacement joint to help reduce the discrepancy. Leg length discrepancy is a difficult one though as even with various ways of measuring it, it can be hard to accurately "correct" with shoe adaptations/insoles/shoe lifts etc.

Plus if you have had a bad hip for a while you will twist your pelvis to protect it which gives the appearance of a leg length discrepancy - so good PT and exercises which help get over such "bad" walking habits etc. are vital. Down the line I have had and am developing some back issues due to wonky walking - but again I wonder if I hadn't spent so long growing with a "bad" hip and walking in a twisted way that might not have happened.

So in other words if I'd had the replacement sooner that could have done me a lot of good. I also think the number of surgeries on that hip have made it difficult for my soft tissues to return to "normal". Personally (as a non medic) I wish I had had the hip replacement sooner than I did (and wish they hadn't even bothered with the last osteotomy!) but I am sure at the time they had good reasons (and perhaps hoped that it wouldn't deteriorate so much so quickly).

Good luck making your decisions, it is a huge stress on you all x

 

[Josephine]

Hi and welcome to BoneSmart! So sorry to hear about your daughter. It's a tough situation to cope with and my heart goes out to you.

but she has since developed AVN and the hardware has shifted to the point where the screws securing her femoral neck have poked through the top of her femoral head, causing her great discomfort.

This happens all too frequently. But as you probably know, This kind of operation is more commonly done on the elderly but we do see a fair number of them come back 1 or more years later with a failed DHS (dynamic hip screw). In years past, before we had the DHS and used a fixed pin and plate, it used to be a whole lot more. I can remember lecturing to nurses about this back in the 1970s!
So yes, the exposed device will very effectively 'plough' up the socket and make a hip replacement absolutely essential. I do hope they have at least removed the DHS to lessen the pain she is experiencing.

I was hoping that you might be able to offer some inside information on short/long term outcome of a teenage child with a prosthetic hip?

Inside information would be that nowadays, the long term is a lot more promising than it once was. It's now generally accepted that for the usual type of hip replacement patient (60+) a hip replacement will be a 'forever' hip. Putting a number on it, it should last at least 30-40 years. You should read this article so see more Longevity of implants and revisions: how long will my new joint last.

One things for sure though, you won't find much online about this as it's a relatively new venture for hip surgery and it might be a while before there are enough for people to go into print about it.

However, that was 17 years ago and I believe there are more teenagers being given THRs now and successfully.

Yes there are but by a small number of surgeons. The majority won't take that leap of faith.

Plus if you have had a bad hip for a while you will twist your pelvis to protect it which gives the appearance of a leg length discrepancy

That's also covered in an article in our Library Leg length differential - LLD

 

[Maya'sdad]

Hello Niknak79, and thank you for the reply. It really means a lot to me that you have taken the time to write and express your thoughts. Much obliged. I cringe at what you had to go through as a child and worry that Maya may be having some of the same problems but unable to fully communicate her symptoms due to her Autism. The good news is, it sounds like you have done well with your THR?
Since you had your surgery 17 years ago, have you had any problems with it to date? How long was your recovery after the surgery?
One of my main concerns is with infection, or loosening. From what I’ve read, these are rare, but then again we were told that the chances of her last surgery failing were rare, so I don’t know what to think at this point.
My heart just breaks at the thought of subjecting Maya to another surgery and my feeling is that if she does have a THR (and all goes well/fingers crossed), that she can regain her childhood and we wouldn’t have to worry about another (4th) surgery for years down the road.

I apologize for all the questions.
Any info would be great
God Bless!

 

[Maya'sdad]

Hi Josephine, I was hoping I would hear from you. Thank you. You seem to have a wealth of knowledge in this area. Unfortunately, the hip screws have not yet been removed, as we learned of this just prior to the holiday season and all doctors seemed to be out till after the new year. In addition. We also just had a CT scan done yesterday in the hopes that it will reveal enough healing in her femoral neck fracture to validate the removal of screws. If, there is in fact enough "bonding" of the bones and we could get away with a minimally invasive procedure where the screws are removed, that would be ideal at this point. At least it might buy us a bit of time to allow Maya grow, develop etc. It's been over 9 months since the accident, and Maya has not been able to walk since. She has atrophy in her right leg (affected) and is now beginning to have some curvature in her spine which another area of concern that have.
I feel that a THR is a question of when not if, but do you feel if there is enough "bonding" in her fracture site that it is worth putting it off for a bit? Also, is there a way the doctors can determine from the CT or Xrays if her growth plates have closed? Not sure how all this works with a THR in a growing child.
Thank you for all your insight.
I very much appreciate it. Thank you

 

[alexthecat]

Hi, Maya's Dad! Like Maya, I had a femoral neck fracture. I also had the experience of the hardware migrating until it started to push through the head of my femur. The pain associated with that was undescribable. I have never experienced anything like it and hope I never do again.

My heart is breaking right now for Maya. I hope she is at least able to have that hardware removed. Mine wasn't removed until I had my THR. The wait for that surgery was awful. Immediately after THR, there was a drastic reduction in pain and my mobility began to improve right away.

THR was by far the easiest surgery I've had. (Easy for me. Not necessarily for the surgeon.) Of course, I don't know your daughter, but I think THR would be a real blessing for her after all she's been through.

 

[Maya'sdad]

Hi Alexthecat, and thank you for your feedback!
I truly appreciate all the info I am gaining from this forum. This community has become a great resource for me and my family and we're very grateful to have found it on the good ol' inter web.
If I may, I would like to ask what your age was at the time of your THR? How long was your recovery, and also wondering if you had an anterior, bilateral or posterior procedure?
I'm guessing based on all the hardware in Maya's hip we have no choice but a bilateral incision.
Thank you kindly.
God bless!

 

[alexthecat]

I was 42, so maybe a little young for THR, but still much older than Maya.

My recovery came on stages. I can give you some milestones. By four weeks post-THR, I was off pain meds, walking without a crutch or cane, and driving again. I returned to work on a very limited basis at six weeks. I "graduated" from physical therapy at 7 weeks. At 12 weeks I resumed my gym workouts.

My surgical approach was a little different than most. The lateral incision from my earlier surgeries was reopened to remove the old hardware. That incision was extended by about 2 inches at an angle, back toward my bottom, for the THR.

 

[Maya'sdad]

That's great news! Happy to hear it has all worked out well for you. I do believe Maya will need to have her barely healed incision, reopened to remove the existing hardware as well. Kills me to think about it, but encouraging to hear of your favorable outcome. How long after the THR surgery did you start PT?

Again, thank you

 

[alexthecat]

I started outpatient PT exactly one week after my THR. That's not typical though. I hadn't been able to walk for 9 months. They didn't want me to relearn to walk on my own and then show up at PT six weeks later (when many people start PT) with all kinds of bad habits to unlearn. So, they started teaching me to walk correctly right after surgery. That may not be the right choice for everyone, but l believe it worked out well for me.

 

[Maya'sdad]

Thanks Alex,
I have yet to read your thread but plan to do this weekend so I can get caught up on your journey. Truly value your input. Happy to hear the THR was a success for you. I hope Maya will have similar results.