hypermobility + femoral anteversion + tibial torsion. Operation or not?

[paranoidandroidwreckmyownlife]

I posted a few days ago about DD1, and have since realised that she is extremely hypermobile (DD3) has diagnosed and did beighton scale tests on DD1 to confirm.)
DD has been under the care of an orthapeadic surgeon for 2yrs, having physio for 18m to try and strengthen her muscles with the aim of walking straighter.

She was a very sporty girl, loved playing football running, athletics etc, but always struggled after long distances, knees swelled up, eventually by the age of 15 she couldn't do any sport without being crippled with knee pain.
She didn't in-toe so wasn't obvios she had FA, it seems that her thigh bones are twisted too far inwards, her knee's point almost towards each other when standing straight, but her shins are twisted outward, so feet seem good directionally.
Saw consultant yesterday, he said she will have to live with chronic low level pain, and not be able to do any activities for the rest of her life without pain, or operate to straighten fenurs, only options left. If left she will most likely be crippled with arthritis at an early age too.
At 17 it's her decision but she wants Op's as wants to get back to an active lifestyle. Due to the positioning of her shins, she may end up with toes pointing outward (think ballet feet) and need the same cut, pin and plate ops on her shins too eventually.

I am emailing surgeon to ask his opinion on how much hypermobility will be afecting her pain levels, and could she see someone about that to give a second opinion before we comit to surgery.
Any advice from any of you knowledgable bendy ladies on here?

It sounds as though you are already seeing an paediatric orthopaedic specialist? Maybe get a second opinion to another one at a different specialist centre (via your GP) before you commit to surgery? But unless there's one on Mumsnet.....

I think it's always sensible to get a second opinion before undergoing a major procedure. Our consultant arranged for us to have a second opinion at GOSH.

However, I'm not sure why you would choose NOT to have surgery that would give a good chance of a better lifelong outcome. My DS has had very confronting orthopaedic surgery and will have more. It has been well worth it. Orthopaedic surgery always sounds so brutal, but it is amazing how quickly young people recover and are sprightly so soon after big procedures. My DS was at school less than 2 weeks after an osteotomy through his tibia and with a fixator frame on. It would be sad to be too daunted by the process to gain the benefits - IME.

Good luck.

Thanks to both of you for replying.
She gone on the waiting list now and seems to just want it over and done with. It's just such a huge operation. Even consultant said, make no mistake this is major surgery, but it will help the malrotation problems significantly.
I have emailed a few further questions to his secretary so hopefully the responses may allay some of my fears.

If your dd is confident that she would like it done, then I think it's important that you support her and don't allow your own fears to take over.

Orthopaedic surgery is major, but probably the care your dd will get will be very supportive. You will probably be assigned a specialist support nurse who will advise on all sorts of aspects of how to deal with recovery. She will also get lots of support from the physios, who also advise on ways to make life easier furing recovery and convalescence. There will also be a detailed pain management strategy to make sure that she is not in pain.

IME the most important thing is that your dd knows why the surgery is being done and what the benefits will be and that she agrees that it is necessary. It can be very hard for a parent seeing thier child go through this kind of surgery, but my DS has experiened an extreme procedure, and yet is confident about forthcoming procedures and still agrees that it is the best thing. Be calm and positive an matter of fact - however hard you find it.

Good luck - your dd sounds a very strong, clear-headed young woman!

Now you've made me cry with your last bit.
Thanks, sure she will be fine. You just want to wrap them in cotton wool at times though don't you?
She is brave young woman.

I have posted before that I had bilateral femoral anteversion corrected surgically at age 7, but I used to trip over all the time and had a progressive problem that was "operate or be wheelchair bound by age 10".

It was not easy, and I have had other operations (age 16 and in my twenties) and issues but I never regret my parents decision as I can walk!

At 17 it won't be easy, but as you say, it really needs to be her decision. Can she be put in touch with anyone else who has been through this at a similar age?

OP, my son had both hip joints plated and screwed when he was 10 ? he too was very sporty but had got to the point where he had had to give up. He?s just turned 15 and plays sport every day, is doing GCSE PE and never has any hip pain at all. There is also no sign of arthritis developing early in either joint.

It is a major operation, as others have said. His lasted about 5 hours and he then had total bed rest for 6 weeks followed by a further 6 in a wheelchair. Would he, and we, do the same thing again? Without a shadow of a doubt. Go for it, and good luck to you both.