Rock And A Hard Place

I must firstly apologise for taking so long to write this update. I hope that after reading it though you will understand why the past few days have been rather overwhelming and I needed time to gather my thoughts and emotions before writing. Thank you so much for your patience and also the amazing support so generously given on Tuesday and beyond. I am incredibly moved and very humbled by it.

 

So as you know on Tuesday I faced an important appt with one of my orthopaedic surgeons regarding whether anything could be done for my now severely damaged and unstable left leg. What you may not know though is that I've actually waited a year for this appointment. Hence why I found myself cursing my 5am alarm call and battling through a still snow laden Yorkshire for 2 hours to reach this long awaited 'silly-o'clock' appointment slot.

 

I was understandably anxious and on edge about the appt already, but the early morning journey in precarious conditions only added to those tensions. Thankfully I was blessed with a wonderful driver, who not only safely negotiated the snowy roads but also kept my mind occupied with great conversation the entire journey. As I'm unable to drive right now I'm incredibly grateful to the fantastic Patient Transport drivers who make it possible for people like myself to reach appointments and treatments that would otherwise be unavailable. I know that without them I personally would not have been able to receive the specialised care I've required over the past 10 years.

 

Thanks to my driver I arrived at the hospital in a slightly calmer state than I'd expected, which is just as well as it transpired. As my body guard (my wonderful Mum) and I entered the clinic I could tell straight away something wasn't right, but was sent round for x-rays before I could confirm my suspicions. On returning from my umpty-millionth dose of radiation however (I swear I glow in the dark!) all became clear. As I'd suspected the surgeon I'd waited a year to see wasn't even there.

 

Obviously disappointed, confused and upset about this error I was ushered in to see what turned out to be my specialist's none the less very qualified 'under-study'. In fairness he was very nice and very apologetic about the mistake, equally annoyed that we couldn't discuss my complex situation together with Mr H. To add insult to injury they didn't even have my medical notes, which complicated the situation even further! I have to say though that I have huge respect for this man as he was calm, professional and talked with me as an equal about my situation, making me feel less like I'd made a wasted journey.

 

We addressed the fact that my situation is very complex, given that my knee is already beyond repair and my ankle now has progressing, complicated damage and instability - dislocating every way possible at every opportunity possible! The big question is what, if anything can we do about it. We talked about the problems and possibilities and it appears right now that I have these three options:

 

1. Do nothing and remain using my bionic leg. This would be the ideal solution of course but sadly my leg is deteriorating so rapidly it has become evident that doing nothing isn't a viable option any more. Plus although the bionic brace helps stabilise my leg it also presents problems of its own, as it doesn't stop the pain, can't be worn 24-7, damages my fragile skin and puts strain on my spine.  

 

2. Major surgery to fuse my lower leg. This would entail a brutal 4 hour operation to, as the doctor put it, kebab all the bones in my foot and ankle with metal rods, then put a huge metal rod through my heel and up my leg. This would permanently stabilise my ankle of course, but it's such a huge surgery there are massive risks and complications even without factoring in the major issues my condition adds too. Also this has never been done on someone with such a damaged leg before either and it's highly suspected it would have catastrophic consequences for my already  stuffed up knee joint - rather defeating the object. This surgery has a 12-18 month rehab period in normal circumstances too, so we can likely double that even if things went well.

 

3. Above knee amputation. This is of course the most extreme option, yet sadly at present also seems the most viable. Although this too carries lots of problems and risks, as nobody can say whether my fragile skin would heal well enough to take a prosthetic leg or whether the rest of my body, especially my other leg, would be strong enough to take the strain an artificial limb creates.

 

In short none of the limited options I have are ideal, leaving both me and my doctors very confused and frustrated. Even my specialist who is one of the foremost foot/ankle surgeons in the country is perplexed, as my situation is so complex and unique. Nobody has ever had to deal with the combination of problems I'm presenting.

 

As such the plan of attack now is to get me in to see my actual specialist as soon as possible. In the meantime, they are going to contact top surgeons around the world to conference about my case and also hit the journals, researching new techniques and writing about my unusual situation in the hope it may challenge people to devise/suggest possible options. It seems I'm quite the enigma and going to make a fascinating journal/thesis subject - ah joy, fame at last!

 

Came home with more questions than answers and not quite sure how to feel to be honest. Having a huge mixture of emotions from anger and frustration at what's happening to astonishment at how intriguing a case I seem to have become and ultimately downright fear at where this will all lead in the end. Hence why it's taken a while to write this post. To some extent I'd mentally prepared myself for discussing the options and situation with my specialist, but the reality of having someone sitting in front of you talking about amputating your leg and the type of prosthetic you'd use is something you can't even begin to imagine or prepare for.

 

Right now I honestly don't know what is going to happen, just that my leg is getting worse and I'm thinking a lot more about what an amputation would be like. It all seems so real now, yet strangely still so far away too as I'm stuck in this strange limbo - waiting, wondering, hoping that there's someone out there who has an answer to these questions that we haven't heard yet.

 

Please forgive me for the rather flat tone of this blog as I struggle with the many emotions I've been left with. But also please know that, as always, I will pick myself up and find a way through whatever the future holds... and yes, I will get back in that saddle somehow too! 

 

Thank you again for the wonderful support, kindness and encouragement you've shown me, these past few weeks especially. I only wish I could live up to the courageous, inspiring person you think I am, as it is you that give me courage and inspiration, not the other way around.

 

Take care and have a lovely Easter weekend my friends. I intend to bury my head in some escapism TV, books and trips out if the weather permits and to eat a lot of chocolate too of course. Well it seems as good a plan as any I've heard this week - if not better! :-)

 

Johanna x