Waiting & Wondering

It's been a little while since I last posted here, mainly because it's taken this long to get any developments – and it has to be said, the waiting has been somewhat testing! I was told that I would have to wait two weeks for a verdict from the MDT (multidisciplinary team meeting), unfortunately this turned into a couple of months. Luckily though, being well-acquainted with the unreliability of the NHS waiting times, this came with little surprise.

Meanwhile, I received this letter which explains the options of two surgical plans and describes some of my angles of retroversion.

Yeah, I'm just as baffled about all of those measurements, too. As my surgeon said, it's difficult enough for an experienced orthopedic surgeon to get their head around all of it, let alone a complete novice. I have joined a couple of ‘hip groups’ on Facebook - full of excellent knowledge, support and advice. They’ve been immensely helpful to me and I no longer feel as ‘alone’ and abandoned! Reading daily about people all over the world with similar issues as mine, at different points in their recovery; hearing success stories, not-so-good stories and solutions to problems, has been a fantastic insight into this ‘hip journey’ as a whole – in addition to increasing my medical know-how!

When my appointment did finally come round, my parents decided to travel down to join me for the scary verdict. They stayed here for a couple of nights and it was the best few days I’ve had for a long time! The only niggle was, my case still hadn't been discussed at the time of my appointment, as some members of the MDT were on holiday... But, it did give my parents a chance to meet my surgeon and discuss my situation with him in good detail.

I also got a quick photo of my x-ray while I was there. My crossover signs are definitely very obvious (meaning that from this view, the front of the socket crosses over with the back of the socket, demonstrating that both are facing backwards). Typically, I believe that with normal hips from this view, (without the femurs in place) you would be able to see into the ‘cup’ of the acetabular; with mine you wouldn’t.

Last week I finally had another appointment with Mr Politis. Simultaneously shaking and sweating, I was at last told that the decision had been made. ‘Plan B’ (aka ‘The BIG one’) is the route they want to take with me. Their judgement is that I need pelvic alterations anyway, so it is better to do both osteotomies at the same time due to their significant recoveries. 

Even after all of the waiting and contemplating, this information hit me quite hard and in a beleaguered, heavy cloud of overwhelming emotion, I embarrassingly let out a couple of tears in front of my surgeon. Apologising too much, I pointed and asked for a tissue and he went to pass me my coffee cup… I really hope there aren’t any mix-ups like that when I’m in theatre!

So I am now on the waiting list for a right Derotational Femoral Osteotomy (DFO) and a right Triple Pelvic Osteotomy (TPO), leaving the option of an arthroscopy until later if it’s necessary. Apparently, the waiting list is about 2 and half months long, but we’ll see. I’ll be in hospital for around 5-7 days, initially staying in the HDU (high dependency unit) for the first day or so. I’m not sure if that means I won’t be able to see any visitors whilst I’m in there, or not.

I was taken upstairs straight after my appointment for some pre-op assessments; had my measurements, blood pressure and blood taken, and was given a little information pack about anesthesia.  Risks include nerve damage, non-unions and there’s a chance I might need a blood transfusion. I’ll be left with a 10-12in scar down my thigh, one around 5in on my groin and a smaller one at the back of the pelvis.

It’s definitely going to be tough being on crutches for such a long period of time; I’m really quite apprehensive about it! I’ve recently started getting nerve pains in my arms and hands, which I reckon must be the discs in my neck now playing up. I have had an EMG nerve test, but I’m still waiting on those results. Having EDS also means my wrists bend back too far and shoulders click in and out of place (damaging and stretching the ligaments beyond their limit), so no doubt they’ll be complaining at me more when I’ll be relying on them constantly. My left hip is slowly being more problematic as well, so I don’t know how it will stand up to the responsibilities it’ll be given in a couple of months’ time.

It’s quite mad to think back to a few months ago; I had absolutely no idea about the details of my hip condition, or that people even have these conditions. I hadn’t even heard of an acetabular. All I knew was that, for a very long time it had been causing me a relentlessly overwhelming amount of pain and something really wasn’t right. It may sound a little odd, but I actually feel like the severity of these procedures is equivalent to the severity of pain I have been dealing with for the last few years. I’m so looking forward to not having my hips on my mind at all!

This Friday I’ll be venturing to London to get a second opinion from Mr Witt at the UCLH. Should be fun…