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. 

Hospital - Fiasco Followed By Faith

Hello!

Well today's hospital visit was an eventful one. 

We got there nice and early (after the last visit where the car park was so full that we got in over half an hour late!). The hospital is having a bit of an upgrade (not sure if that's the right word, you can't polish a turd and all that...), and the usual clinic is currently a building site, so today it was being held in the private suite. I thought that would be quite exciting, but it was equally as shit as the main hospital! 

As soon as we got there, the nurse informed us the clinic was already an hour behind. Oh joy of joys. The room was also RAMMED with people. So much so, that the nurses asked people to move into the corridor because of a fire risk. I suspect they may have recently had a smacked wrist, because another nurse then came and said it was a fire risk for them to be in the corridor! 

Time ticked by, and when it hit 12.30 (2 hours past appt time!), I asked when I would be seen. I was told one person was in front of me. Two people were then seen, and at 13.00, I was finally called. Huzzah right?

WRONG. 

I was wheeled into the room to see the consultant. He saw me in Feb for my suspected Cauda-Equina, and asked how I was getting on with my back. We chatted a bit about that, and then my fetching splint (which I then told him was about as much use as a chocolate teapot!). Then he asked the Sister if she "had chased it up yet?". I thought it was a bit odd. She answered yes in the most unconvincing manner ever. He then asked if she was sure several times, and she then buckled and said no.

My MRI report was MISSING. The entire reason for my appointment was not in my paper or electronic file. And I was not the only patient from today with that problem. 

The consultant was very apologetic, and explained that he was liaising with a radiographer at the other hospital in the Trust to get it done in the next hour, as the dictated version was in their systems. Said to go for lunch, and he would see me in an hour at his afternoon fracture clinic. So off we toddled for lunch (which actually wasn't horrendous, minced beef and onion pie with chips), then back to fracture clinic. 

I got in to see him, and waited a wee while for him to go through the report. He came in, and said I was a "complex and challenging case". He had a bit of a feel around the ankle and foot, then dropped the bomb on me that the surgeon who did my first op had not repaired the ligament as he said he had - he's taken another bit of tissue and pulled it down instead! Whaaaat?! He mentioned fusion - which he said he was not willing to do lightly due to my age. At that point I told him that I would do it if it meant no more instability in my ankle, and it's subsequent effects on my knee, hip and back. I think he realised then that I was serious, and mentioned two other possible options - a rerun of my last operation, but heavily modified, and another op which would involve donor tissue being bolted into place to strengthen my ankle. 

But he then explained that he was not happy to conduct any surgery to correct the instability without finding the cause for the pain first - he wanted to tackle both together. I can appreciate that. 

So my next step is going to a hospital in London for a SPECT CT Scan. I will be injected with a radioactive isotope and the scan will put together a complete image of my ankle so we know exactly what is going on. Once I get those results, it will most likely be surgery. I have faith in this consultant, that he will do his very best for me. 

I finally got home at 15.00. From a 10.30 appointment.

So I am still in total limbo with my future. My job is hanging in the balance. I am still unable to walk without a frame. I am still relying on a wheelchair for anything outside of a household environment. And my knee has now given up in sympathy with my foot.

And I am under bed/sofa arrest until Thursday. I am exhausted and no use to anyone or anything. After I've seen Gold Rush, I will be decamping to my bed. And staying there until I have the energy to move again.