Tuesday, 6 August 2013

Me and My HulkFoot™

Hello Everyone! 

Well, today was the day I got the results of my SPECT/CT Scan, and learned what the next step would be for HulkFoot™ and I. 

Since I last saw my consultant, I have injured my knee as a result of HulkFoot™'s chronic instability and inability to hold me up. This in turn is causing my back condition to become aggravated. Joy. 

This morning, I felt sick with nerves. My appointment was scheduled for 9.00, and by 9.30 my poor fingers were sore from all of the wringing I had put them through. I literally could not keep them still! 

The images from the SPECT/CT are very pretty things. They are lovely and colourful - much more interesting than the usual MRI and XRay black and white! There was a three page essay report back, which always fills you with confidence. Then there is the  "there is good news and bad news" line comes tumbling out. 

The good news is, I will not be operated on any further. Huzzah! 

The bad news is, the reason they won't operate is that it would make no improvement whatsoever to the state of HulkFoot™. 

In the images, there was a large white splodge where the main part of my foot is. I asked what each of the colours meant, and white means very unhappy, inflamed and painful. It had been anticipated that the area of pain would be the major ligaments, so this was not expected at all. Interestingly, it showed the same issue in my left foot. 

Each and every one of the tiny connective tissues in the main structure of my foot is pretty much useless. My bones have been taking all of the impact with every movement that I take, and now they're pissed off about it! They are angry, swollen and want me to know about it. Hence HulkFoot™ and it's gargantuan size, and why LeftNotQuiteAHulkFootYet™ has also started to swell and get a bit on the sore side. 

There is no cure for this. It's a part of my EDS which has manifested itself, and it is a case of management rather than repair. I have been referred to a member of the Physio team who has an interest in EDS and connective tissue disorders, with (hopefully!) a view to having some more Hydrotherapy as part of the programme. I have also been referred to the Orthotics team to get some custom made Ankle-Foot Orthoses made. I also have to lose some weight. A fair bit of weight. This is a good thing to focus on, so I will be setting a target and updating here with my progress.

Possibly the most exciting development of the day is that my consultant trained at the Royal National Orthopaedic Hospital in Stanmore. If any bendies are reading this, they may already be aware, that the RNOH offer a 3 week residential rehabilitation course. Specialist physiotherapy, hydrotherapy, and retraining in areas that bendy people don't necessarily do correctly. He has written to my GP to request I am referred there, as I am a suitable candidate. Fingers very crossed that I will be accepted! 

So, as of 6/8/2013, a new path has opened up for me. I'm not sure yet what it holds, and I'm certain it won't be easy. But I've taken my first step/hop/roll on it. 

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