THR Maya's recovery thread

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Hi Josephine, the brace is simply a precaution. You may recall reading that Maya is Autistic. She doesn't quite comprehend that there are certain restrictions with her movements, bending etc. She tends to want to bring her knees up to her chest when sitting, lying on her side etc. We hope that soon enough these restrictions can be lifted and she will be able to move around freely.
 
Thanks Josephine. So you feel the brace is unnecessary? Just trying to take the safe approach here.
 
So you feel the brace is unnecessary? Just trying to take the safe approach here.
I think the brace is a very good idea! Restrictions are hard enough on an adult - let alone an active child. You can't watch her every move so the brace benefits everyone.

Maya is a real trooper! Tell her that her BoneSmart family is very proud!
 
So you feel the brace is unnecessary? Just trying to take the safe approach here.
No, I wouldn't say that at all. You and your doctor know Maya, I don't. The "safe approach" is always best.
 
Hi again everyone. Been a while since I posted an update so thought I might do so.
Maya has recently passed the three month point since her total hip replacement. We had x-rays a couple of weeks ago and everything looks good. She has started physical therapy and is slowly regaining her strength and mobility after more than a year of being off her feet. She seems quite happy and pain free for the most part. She does still walk with caution and still has a bit of limp but we're hopeful this will subside as she gains strength and confidence. We're hopeful that this will be it for a long while. Thank you all for your support, prayers and well wishes. Couldn't have got through this without all your help
 
Do you know, I was thinking about you all day yesterday! I am so delighted to have you pop in and give us an update. It really means a lot to us. Thank you and do give Maya a hug from us all!
 
Thanks for the update, happy to hear that Maya is doing so well with her new hip.
 
Never stopped thinking about you Josephine and all the information and support from you. We are forever grateful. I'm attaching a short clip of Maya doing some PT (hopefully it works) and her recent X-ray. The lines you see in her femur are cables not screws. Her surgeon used these to prevent fracture while inserting the implant. It's such a relief to see a big smile on Maya's face again and to see her walking on her own. She still can't do much without getting fatigued but I'm guessing this is normal at this stage and she will continue to get stronger. I realize we still have a lot of worry ahead and precautions to avoid dislocation, but we're very grateful to breath a sigh of relief.

IMG_5163.jpg
 
Never stopped thinking about you Josephine and all the information and support from you.
I am touched!
The lines you see in her femur are cables not screws. Her surgeon used these to prevent fracture while inserting the implant.
Yes, I can see they are Dall Miles cables. Very wise of him.

I actually cropped the xray as it was showing a little too much of Maya's femininity! :wink:
I'm attaching a short clip of Maya doing some PT (hopefully it works)
Sadly it didn't :boohoo: I had to delete it. In order to put video on here you first need to upload it to Youtube. You then use the Youtube url, just paste it in the post and voila! the system does all the rest!
She still can't do much without getting fatigued but I'm guessing this is normal at this stage and she will continue to get stronger.
Correct
I realize we still have a lot of worry ahead and precautions to avoid dislocation
Oh please try not to worry. The risk is so small.

All the best!
 
Hi all, Congrats Jasmine's Mom! So great to see her enjoying all the things typical teenagers do.
Maya just got back from spending a week in Hawaii with her mom. She had a great time lounging and snorkeling. She is now about 4.5 months post THR and doing well. She still has a bit of a limp. At times more pronounced that others. She also has developed a bit of a bulge on the left side of her spine from what I guess is the favoring her right hip. We are scheduled to see her surgeon in early August but was wondering if anyone on this forum has any insight on this issue? I'm hoping both will subside as she gets stronger and regains normal movement?
 
Good to hear from you, Dad! And good to hear Maya is doing pretty well.

At her age, it might be possible for her to have developed a bit of a scoliosis. Or she might have had it already and the THR has caused it to get worse.
 
Thank you Josephine. We plan to discuss with Dr Allison during her next visit. Anything to be overly concerned about or can do as a precaution in the meantime?
 
Not really. Wait till you see that doctor again.
 
@Maya'sdad , hello, I am new to this website. I have read Maya's story with much personal interest - there seems to be a lot in common with my daughter's (Eva) medical case. We're due to see her consultant in two weeks and will decide upon either a femoral reconstruction or a hip replacement. May I ask how Maya's recovery is going now? Also, what sort of device was used for the new hip (metal on metal/ceramic/any other)? Fiona
 
@FiFiTrixy, Maya's dad hasn't been on the forum since July 2016 so he's unlikely to see your post. However, I can answer your questions.
We're due to see her consultant in two weeks and will decide upon either a femoral reconstruction or a hip replacement.
How old is Eva and who are you going to see and at which hospital? There are very few surgeons who will contemplate doing replacements on teenagers. And do you have any idea what kind of reconstruction is suggested? There are several types.
May I ask how Maya's recovery is going now?
Maya is doing very well though her mobility is not normal as she has developmental issues as you no doubt read early in this thread.
Also, what sort of device was used for the new hip (metal on metal/ceramic/any other)?
It really doesn't matter which kind of device is used. The most important thing is to go to a surgeon with excellent surgical skills and knowledge. That does not include a 'routine' kind of chap! The same applies to the reconstructive procedure is the same - you need to take her to a paediatric orthopaedic surgeon and one with specific skills in childhood pelvic surgery. I can help you there if you wish.
 
Hi Josephine, thank you for your message - sorry I didn't see it until now - I've never used a forum before so I'm not sure exactly how these work - I'm hoping this message will get back to you. We will be heading for our next consultation in a couple of hours' time.

Eva is now 15 (she'll be 16 in July) and her very wonderful consultant is Mr Ed Bache - in whom we have every faith. He has never seen a case quite like Eva's before (but I will be mentioning Jasmine's fairly similar case to him).

I can't place my hands on the paperwork at the moment (it is around somewhere as I used it to complete an EHCP) but it will either be a full femoral reconstruction (he explained that requires breaking the leg in four pieces and resetting it) so that the femur is no longer twisted, or, a hip replacement - I think he is leaning more towards the reconstruction and hoping to delay the hip replacement until her 30s.

I'll outline her medical background below (it's lengthy sorry) but in short, I've watched my daughter robbed of the last three years of her life. She barely sees her friends, her predicted A grades are now 2-3 grades lower as she has 14% school attendance this year. Her education has suffered beyond anything I can explain (she can only manage five hours of school per week on a good week). She had ambitions to be a doctor since age 8.

She cannot join in with any activities that her friends do unless it involves sitting around our house eating take-out once a month. No DoE, no drama productions, no trampolining, running, shopping or even cinema. As she can only sit upright for around 45-60 mins before the pain becomes unbearable and she then has to spend the next six hours lying down to recover.

There are no more day trips out, no holidays. Low quality of life for her as well as rest of family. It has taken it's toll emotionally, physically, financially. I cannot give this up however, I will fight (and have had to fight so many organisations - particularly education). But I just want Eva to have 'some' normal teenage experiences - even if that is just the chance to go to the cinema or shopping with her friends.

Medical background (no childhood problems other than mild bouts of asthma):
11yrs: (July 2012) Fractured metatarsal from swinging accident. A little slow to recover (around four months)
12yrs: (May 2013) Salter-Harris type hairline fracture to ankle. Caused by walking and 'going over' on her ankle. Very slow to heal. Cast removed. Unable to weight-bear/on crutches. Cast replaced/removed (six weeks in total). (Sept 13) Weight bearing but ankle kept swelling. (Oct 13-Feb14) Air-boot used for mobilising. This whole episode took nine months in total to recover (and probably caused SUFE).
April-May 2014: Groin pain started and limp developed. We ignored it thinking it was due to over-compensation from previous ankle fracture.
13 yrs: (Dec 2014) SUFE identified/operated. First 48 hours looked promising. Pain much improved. However, by the end of the week, the pain was increasing and continued to increase. We completed physio by the book and when the pain and mobility seemed to be getting worse, she underwent intensive physio. We worked so, so hard! No one could understand why she was experiencing the pain levels she was and CRPS was mentioned. CAHMS referral made. Rheumatologist (Clive Ryder) involved for second opinion.
(Jan 2016) Eva collapsed in pain and could no longer stand (due to pain). Bedbound until July 2016.
(Feb 2016) SUFE pin/screw removed (to allow MRI) and low level steroid injection (partially diagnostic to see if an increase in pain sign-posted CRPS). The pain very slightly improved however but only for a week.
(May 2016) hip arthroscopy. Showed around 70% surface damage to head of femur (surgeon says it looks like the hip of a 20-25 year old SUFE sufferer). He shaved/reshaped femoral head and fixed labral tears.
(Current Feb 2017) Eva is still in high levels of pain. Can sit up/walk (orthotics) for about an hour but needs most of the day to then recover. I have purchased a fully reclinable orthopaedic chair for day time use otherwise she would spend the day in bed (our sofa is 'too hard' for her).

@Josephine
 
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