THR Maya's recovery thread

[Jaycey]

@FiFiTrixy I tagged Josephine in your post so that she will see it and respond. I wish you and Eva all the best at your appointment. She is lucky to have you fighting for her. I pray you find some answers. She is so young to be bearing all this pain and suffering.

 

[Josephine]

he explained that requires breaking the leg in four pieces and resetting it so that the femur is no longer twisted

I do so hate it when people say "breaking the leg" as it sounds as if it's a random thing like we just take a hammer to it! The correct terminology is osteotomy which involves very carefully planned and executed cuts with a power saw.

The procedure he is describing is a called a Ganz rotational osteotomy and is a very old procedure - been around for decades! The operation involves making controlled cuts in the three bones that make up the pelvis: the Ilium, the Ischium and the Pubis - like so.

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Once these cuts are made, the socket is moved into the optimum position and screws are used to hold it there until it heals.

Some things I must tell you about this procedure which I suspect that the surgeon may not have mentioned:
1) it is a very major procedure
2) it can take 3-4 hours
4) initial recovery requires ICU admission
5) recovery afterwards is painful and protracted and may take many months

However, having said all that, they are generally fairly successful in the long term and don't have any restrictions though she will be somewhat handicapped for some months while it's all healing.

a hip replacement

On the other hand, a hip replacement will be quite different. I expect you've read Jasmine's thread teenager hip replacement after SUFE so you can see how much more quickly things progress. The surgery takes about 1-1½hrs, the initial recovery is swift with a discharge after only a day or two. Thereafter the recovery is also fairly swift as she will be up and about within 2-3 weeks at most and back to school about 3 months after that. Her hip replacement will very likely last her about 30-40 years despite the negative predictions of some!

This whole episode took nine months in total to recover (and probably caused SUFE).

That's unlikely but anyway, actually irrelevant now. That was a long old recovery.

If you look on Jasmine's thread, you will see there the name of the surgeon I recommended and who did indeed to Jas's hip replacement. It will be well worth the trip.

 

[FiFiTrixy]

Thanks Josephine, Josephine, sorry - the crude terminology was mine as I was rushing - definitely not the surgeon's who said osteotomy but that is the first time I have seen a diagram of the surgery which is very helpful. I was aware of all the above post-op points, with the exception of ICU, which is a bit of a shock. Thank you for the advance warning.

Anyway, we're not long home and have discussed: i) do nothing until her 30s - then hip replacement; ii) the osteotomy, which, may cause complications or compromise the future possibility of hip replacement; iii) find a surgeon who will do the hip replacement now. Mr Bache thinks that because of femur is twisted it is unlikely that anyone would be willing to carry out the hip replacement, but I have asked him to consult with Mr Matthew Wilson (Jasmine's surgeon) and arrange an appointment for us to see him. I would rather have this option ruled out by the hip surgeon for definite, rather than work on an assumption.

Now, I just have to work out the logistics of transporting Eva from Birmingham to Exeter, when she can only sit up for an hour before needing to lie down for several hours to recover. A lottery win might buy us a helicopter ride there!

 

[FiFiTrixy]

Thanks Jaycey, how do you tag someone?

 

[Jaycey]

Here's a thread from our info section on tagging. You might want to start your own thread in the hip pre-op area to get more visibility and support from members.

 

[Josephine]

the crude terminology was mine as I was rushing

Not at all! Everyone says it but it always makes me cringe!

i) do nothing until her 30s

And have her lose 15 years of her life, probably ending up spending most of that in a wheelchair? I don't think she'd thank you for that.

with the exception of ICU, which is a bit of a shock

Actually, it would more likely be an HDU which is a step down from ICU. Depends upon the facilities available at the hospital.

Mr Bache thinks that because of femur is twisted it is unlikely that anyone would be willing to carry out the hip replacement, but I have asked him to consult with Mr Matthew Wilson (Jasmine's surgeon) and arrange an appointment for us to see him.

What was his reaction to this request? Because I really wouldn't have done that. I would have recommended that you just got your GP to refer you to Mr Wilson directly and be done with it. In my experience, surgeons in the UK tend not to get involved with referring patients for second opinions and you are perfectly free to refer yourself anywhere else you choose (via your GP). It's the law NHS choice: Patient's Charter and your right to choose

 

[FiFiTrixy]

He knows Mr Wilson and seemed more than happy to discuss it with him and ask him to see Eva. Before we left, he arranged for a new x-ray and put in a request for CT scan, so that it would be ready ahead of any meeting with Mr Wilson.

Since having been lucky enough for our GP to have initially recognised the SUFE on presentation, I have not had any support from the GP despite repeated requests. I've asked for full bloods and been denied, I've asked for help with care (when Eva was bedbound and completely immobile I had to do all of her personal care, meaning that I didn't turn up for work for six months) and was denied. I've asked for wheelchair referral, so that we can leave the house for more than an hour (we are virtually prisoners in our own home) - if Eva had a wheelchair that fully reclined, we could have a slightly better quality of life than we currently have. Again, denied. I've contacted Social Services OT to request a stairlift for Eva ... Denied. The school's initial reaction was that she go to a different school (presumably to protect their attendance records) - and I have had an almost daily battle to fight this attitude for the last two years. My daughter is pretty disabled and I can promise you the only person who seems to care in the slightest, other than us, is her consultant.

 

[Josephine]

Oh excellent! I am very pleased to hear that.

As for a wheelchair, the official channels won't be very co-operative because her condition can be resolved with surgery and she is under the care of surgeon for that as we speak. But you can get a wheel chair from the Red Cross or St John's Ambulance. My experience with them is that they can be very helpful though there might be a small charge involved.

 

[FiFiTrixy]

Thanks Josephine - I'll look into the charities you suggested. Being in a wheelchair is not ideally what we want but after three years of being told that a condition is resolvable, but hasn't been resolved, makes family life confining and pretty miserable. I would intend for her to walk for as long as she is able (usually 30 mins) then have a reclining chair that she can lie down in/on.

From your experience Josephine, with regards to Eva's twisted femur:

1. As it is twisted now and if left alone, it will still be twisted in 15 year's time ... So what would have been the point in offering this as a choice? Why would a surgeon be prepared to operate on a 30 year old's twisted femur but not a teenage one?

2. If we do not have the osteotomy (and were to proceed straight to hip replacement) would her femur become more twisted, with age? If so, would we be heading down a path that will cause her further complications later in life?

3. In Eva's words, "I really hate my leg. Can't I just have a new femur and be done with it? I just want my life back." As frightening as this sounds, I have no answers - what should I tell her? (I'm not particularly gifted in science/medicine, as I've no doubt you may have already gathered!). I think she got the idea after seeing a documentary on some pioneering 3D printing body replacement parts in Australia.

 

[Josephine]

As it is twisted now and if left alone, it will still be twisted in 15 year's time ... So what would have been the point in offering this as a choice? Why would a surgeon be prepared to operate on a 30 year old's twisted femur but not a teenage one?

Not for 15 years. This is only an ongoing issue until her bones are matured and the growth plates seal up.

Do you have an xray that shows this deformity? I'd love to know what it is like.

If we do not have the osteotomy (and were to proceed straight to hip replacement) would her femur become more twisted, with age? If so, would we be heading down a path that will cause her further complications later in life?

Same answer as above. But the existing deformity will very likely cause her problems later in life. But I'll know more if you can post an xray so I know exactly what we're talking about.

In Eva's words, "I really hate my leg. Can't I just have a new femur and be done with it? I just want my life back.

Aw bless her! There is an operation that replaces the femur, the hip and the knee - it's called a 'massive' implant because it is massive and so it the procedure. What is also horrendous is the recovery and the years it takes the patient to rehab and recover from. And these are usually done for cancer. Not a very nice operation to undergo and it wouldn't be appropriate for her anyway.

 

[FiFiTrixy]

@Josephine I have the MRI from the original SUFE diagnosis back in December 2014. Are these any use? There are lots of different images - so I've picked out a few and converted to jpeg.

 

[Josephine]

That was very kind of you but I've never been able to read MRI images. Sorry