SCFE problems ongoing (three years post op)

[FiFiTrixy]

My (now 15 year old) daughter had a SCFE operation on her right leg in December 2014 and she is still mostly bedbound over three years' later. We have a most excellent and trusted consultant who has continued treating her diagnostically. After the initial operation, all seemed well for the first 48 hours but then the pain amplified and despite much intensive physio, the pain continued at a level that has incapacitated her (a previously A* student has barely attended school since). In Feb 2016, the pin was removed to allow an MRI, together with a low level steroid injection which only gave minor relief for a week (and also assessed whether it may/may not be CRPS). MRI showed nothing and then in July 2016 a hip arthroscopy was performed, which finally showed the extent of the damage which had been caused to the femoral head by impingement (the surgeon said it looked like the bone of someone who had SCFE 25 years earlier). The hip arthroscopy had (until this week) slightly improved her pain levels and it took six months to mobilise again (albeit for very short periods). Most of her pain is caused/aggravated by the sitting position.

We are due to see the consultant in a couple of weeks' time, at which point, the time has come to make a decision on whether to a) carry out a femoral reconstruction; or b) consider a hip replacement. She will be 16 years old in July. No doubt, we will be lead by the consultant, however, having been labelled as a bit of a 'medical mystery' combined with the fact that my daughter seems to have great difficulty recovering from broken/fractured joints (an ankle fracture took nine months to heal in 2013 and a metatarsal injury took around four months to heal in 2012), on top of never having actually 'healed' from SCFE, I have grave reservations.

Does anyone else have a similar story or experience who would be willing to contact me?

 

[bottomshollow]

@FiFiTrixy, from the Forum Rules and Staff forum into the Hip Replacement Pre Op forum where you and your questions and concerns will receive the attention they deserve.

to the forum. @Josephine, forum nurse director, should be able to address your concerns when she returns to the forum in the next few days. In the meantime, you might look in our Library for hip related articles.

We are here to help in any way we can: answering questions and concerns; supporting and encouraging you from start to finish; giving you a place to vent, whine, complain if you need to; sharing experiences with one another; and having fun and some laughs along the way.

Take care and keep us posted. We care.

 

[Jaycey]

@FiFiTrixy While you are waiting for Josephine's return, I'm going to tag a couple of members who have been through similar journeys with their teenagers. @jasminesmom @Maya'sdad

 

[Jaycey]

#teenagehipreplacement

 

[jasminesmom]

I've been away for such a long time now... I feel bad that I haven't dropped in for quite a while to this amazing community, but do you know why that is? Because our lives finally returned to normal.
It's been nearly two years since jaz had her hip replacement and she's now fast approaching 17 years. This morning I dropped her off at work (waitress in a busy restaurant) for an 8 hour shift on her feet. The fact that she can now rush around on her feet for that period of time is nothing short of a miracle if you turn back two years. She was such a mess, she was broken, hurting constantly, felt no self well worth. Everything you would in a heartbeat suffer for them, but you can't.

I've read your thread, I'm not a Specialist in this area, only a specialist in my daughters story and struggle.
I will say that I had to fight, scream and shout from the rooftops to get second, third opinions until I found someone willing to look at her with fresh eyes. That doctor saved jasmine, enabled her to return to a normal teenager - I'll be more than happy to pass on jasmines surgeon's email to you.
I urge you to jump up and down as high as you can to help her.

Jaz was out of pain for the first time in 2/3 years after having a hip replacement. She's cautious with herself, doesn't run, can't wear high hells, looks after her weight and generally will always remember the pain she endured. I can't tell you how much difference having a hip replacement has made to her young life.

She will need a revision in the future But she'll be fully prepared for that whenever that may be. when that happens it will be familiar and easy for her.

I'm happy to chat on here for as long as you need, but also happy to chat privately if you prefer.

You have found the best place for support right here on BoneSmart. Everyone has a story, everyone has great advice and the moderators absolutely know their stuff! Josephine is amazing as are the fabulous other Specialist on here so draw as much info as you can, to feel more informed and empowered to take charge of your daughters care.
Thank you jacey for tagging me xxx

 

[Dylansmam]

Hi i find myself in the same position that you have been in with jasmine, my son Dylan is 14 years old and was diagnosed with Avascular necrosis (AVN) in January 2017. As a family we are lost, we do not know where to turn, we are looking for a second opinion. We have been told that dylan will have to wait until he has stopped growing before they will look at a hip replacement. Then they want him to wait as long as possible as the hip replacements only last 15 yrs, by which time his childhood and teenage years are long gone. I have read your story with jasmine and sighed with relief that there was someone out there who has experienced this first hand with a child of the same age and living in Wales. I hope i see this message as i would like some advice on how i went about getting a hip replacement so soon. Kind regards Michelle

 

[jasminesmom]

Can I ask what Hospital he is under in Wales?
With the help of this site, advice from jo regarding jaz' rights, I had the strength to demand a second opinion.
I was told jaz would have to wait until she stopped growing. I think keep growing for longer than girls. We got to the stage where we knew she had stopped growing and had a meeting with her surgeon who then said they wanted to wait for as long as possible before giving her a hip replacement, she will need a revision years down line, blah blah blah... exactly what you have been told.. I refused to accept that and unleashed my inner momma bear. Watching our teenagers lives be reduced with such pain is horrific. This should be the fun times for them, this time shapes who they are for the rest of their life.. I made a stink, I became a pain in the backside, I wrote to other surgeons, jo helped me with some names of specialists, I did everything I could to get her better as soon as possible so she could be a normal teenager again. i would be willing to bring jasmine to his next appointment with you and let her tell the doctors what it would've meant to wait for as long as possible. DO NOT ACCEPT THEIR OPINIONS - get ready to fight them all the way, I will help you, the people on here will help and support you. Kirsty x

 

[Jaycey]

@Dylansmam Kirsty has already said it all. Do not take no for an answer. Dylan is far to young to be sitting on the sidelines.

Josephine has just had surgery herself so may not be on the forum for a few days. If we can help in any way give a shout. Perhaps @jasminesmom can share the names of the surgeons she worked with? Her offer to have Jaz at his next appointment is just fantastic. You will get this for Dylan!

 

[Dylansmam]

Dylan is under royal Gwent Newport but has just been transferred to children's hospital Wales Heath Cardiff.
Thank u so much for replying. We are new to this condition and feel helpless just going along with what the Drs are saying but increasingly questioning if it's enough. Thank u michelle Dylan's mam

 

[FiFiTrixy]

@Dylansmam Welcome, sorry to hear Dylan has had a tough time and that you are all going through a difficult time as a family. Don't be afraid to make a pain of yourself, don't worry about calling the consultants' secretaries time and time again. Jasmine's mom, Harry's mom and others have helped me a lot and we are still fighting our way through this nightmare as the hip consultant's waiting lists are getting longer and longer. Be prepared to fight and boy you will need to fight ... not just the doctors, the nurses, the physios, etc, but the school and social care. It can feel as though the system is designed to be as unhelpful and uncaring as possible to put you off asking for anything - it will grind you down - but find your inner warrior mom and never give in!

There's not a lot I can add to this with health advice but I have had a massive learning calls with the Education Department. If I can help here, let me know. If you just want someone to talk to who has walked your path, feel free to contact me. If Dylan wants to chat to someone in the same position, he's welcome to speak to Eva.

 

[Dylansmam]

Thank you for your reply everyone has been so welcoming and informative. Dylan's school has been wonderful so helpful and luckily even though he only has 63% attendance he is doing extremely well at school on target to get A's at GCSE level we are so proud of him, doing so well when going through a very traumatic 8 months. We have arranged to see a consultant privately in Birmingham to see if we can get some sort of different opinion to what we are getting at the moment.

 

[Jaycey]

@Dylansmam please keep us updated. And do let us know if you need help finding a surgeon.

 

[Dylansmam]

Of course i will, we are going on holiday next week for two weeks but when we return we will be pushing forward . Trying to get some answers and treatment for dylan. We will need all the advice, help and support we can get

 

[Jamie]

We'll continue to be here for you! Enjoy your holiday. Hope the weather cooperates and you get some great family together time.

 

[Dylansmam]

Hi everyone we haven't forgotten you all, we had a lovely holiday and thankfully Dylan done extremely well. The pain has got worse for Dylan and after weeks of trying to get him looked at we have found that the hip has died further and is now 50% dead. He has had another operation to remove a pin from the joint and to have cortisone injections. We have now been told that he will get his hip replacement when he turns 16 yrs (we have 18mths to wait). His pain is worse and he is in the wheelchair more often than not, he has good and bad days but it's tuff we have had lots of tears from all of us and the situation is extremely stressful. But at least we finally have a date for his hip replacement. This forum is amazing as you no longer feel alone in a very isolated stressful situation xx

 

[FiFiTrixy]

Sorry to hear Dylan's pain is getting worse - it's a harrowing experience as a mother, watching your own child in so much pain and knowing there is nothing you can do to ease the pain. I watched Eva crying and sometimes screaming in pain - pain that even morphine couldn't touch. We tried so many different meds (inc neurological drugs) which did nothing, we even tried alternative options (TENs, acupuncture, homeopathy, pscyhology) out of sheer desperation. Nothing worked.

Why do you have to wait 18 months? Is that due to the wait list or is it because he still has more growing to do? If it's just because of the wait list? There might be equally good alternatives elsewhere? If it is the consultant in Birmingham based at Royal Orthopaedic, then I know his wait list is ridiculous and also, the Board at the RO are closing down the teenage ward at Northfield and transferring all the services to Birmingham Children's Hospital (we're Birmingham based) which in itself will take time.

We went to Exeter, last month, where diagnostic dye-injection testing was carried out to try to throw some light on why the levels of pain are so high and nothing of significance (nothing that we didn't already know) showed. More importantly, to add to the confusion, the injection did not decrease the pain as it should have done. So, the conclusion was that 'out of the surgical options' the hip replacement was probably the best route ... however, the fact that the injection did not improve the pain was a bit of a curve ball. As you can imagine, three operations later with little improvement (even though you know you've had the best medical intervention possible), and considering a fourth, where your kid's reactions to any procedures are labelled as atypical, is a most disconcerting place to be.

So, I went back to the board, back through the medical notes, mapped it out and spotted a few things. 1) She never recovers well from fractures or surgery ... no-one has ever been able to offer us an explanation for this. 2) There has always been a significant amount of swelling/inflammation around any procedure. 3) Her original consultant (very trusted) has only ever been able to offer CRPS/pain amplification as a cause (since the ops were correctly done) - however, two other experts say that she does not present as a typical CRPS patient. We tried counselling and neurological drugs to no effect and thought I'd hit a dead-end.

However, we then came across something called functional neurology, which is basically a chiropractor (not a back cracking type) who practices kinesiology and cranial reflexology. We have seen him privately for two months, my daughter has gone from being practically bedbound to living an almost normal life. From 8% school attendance to 100% school attendance. From being in considerable pain and miserable, to still having pain but being able to function at a manageable level and happy. It is his opinion that she has had longstanding bowel issues, which have caused inflammation and sent her immune system into overdrive making it impossible for her body to heal. These issues would never have shown in any x-ray, MRI or blood tests. If her recovery continues as it is now, we can put off the hip op until a later date (which of course is always the consultant's preference/advised position).

 

[FiFiTrixy]

Thank you to everyone for your help and advice. Eva had a hip replacement in Exeter at the end of January and is back home and so far, the recovery is going well. Due to see the consultant again in a couple of weeks' time ... but things feel different this time round ... and we're feeling hopeful of finally getting her life back on track. Lots and lots and lots of lost time to make up for.
@Josephine - thanks for all your patience, help and guidance.
@jasminesmom - thanks for the pioneering call to arms!

 

[Jaycey]

@FiFiTrixy Thanks for the update on Eva! So glad she finally getting her life back!

 

[Josephine]

That's fantastic! Another story that shows (and proves) that we don't have to wait for these things.
Well done you!

I take it you took her to see the same surgeon Jaz went to then?

 

[FiFiTrixy]

Yes, Mr Wilson - a truly, wonderful man. As well as the femur being twisted the hip was deformed - he said he could understand why she had been experiencing high levels of pain. As I say, early days, but it really feels very different this time. She's having back pain at the moment, which she's pretty sure is muscle pain. Her knee has swollen up a couple of times this week and only then has she experienced the old pain in her groin - I'm not sure exactly what that means for her now - but previously the groin pain was constant. She's looking forward to physio and getting on with making up for lost times with her friends. After years of being put through psychology, to address any pain that couldn't be explained away by x-rays, I think she's really looking forward to telling CAMHS where to stick their 'mindfulness'!!