2024 The Year of Regeneration

Learning to walk, learning to hear again...

Hello there.

Thank you for coming here to read this, which is a minor compilation of social media posts I’ve made over the last fortnight, plus some other stuff, on medical developments. I promise this will be the last ‘med’-themed post for a while; don’t worry, I tire of them even more than you and would prefer to spend my time writing about things other than myself. I’m really grateful for the curiosity and concern people have shown, and the questions they’ve asked, and writing a ‘complete account’ below saves everybody’s times and gives us a single handy link. So…

The Quiet Life

I have had moderate sensorineural hearing loss for at least the last 24 years of my 34-year life, as one of the symptoms of MDP Syndrome. Sensorineural because I have all the middle-ear ‘hardware’, and it seems to work ok; it’s the nerves sending the signals from my ears to my brain which are faulty. It’s loosely hypothesized, but by no means proven, that this is because fat plays a role in neurological signals and I don’t play nicely with fat. That’s all been fine and manageable for almost 2 decades. I am a huge audiophile and was playing Grade 8 standard classical guitar at 18, and still play to a good but poorer level (ATFAT - Another Topic For Another Time), so no harm done. I was supported by NHS hearing aids for many years, before a significant upgrade to ReSound hearing aids initially through cycling sponsorship opened the door to many awesome and life-changing Bluetooth streaming capabilities and other tech marvels (ATFAT)

Falling Off A Cliff

Unfortunately, about 5 years ago my previously stable hearing levels started to decline, and then abruptly dropped off a cliff. Again, no confirmed cause - when you have a rare disease shared by 15 other people worldwide there’s not a huge amount of research available. It’s likely that due to the nature of my condition the effects of poor fat metabolism accumulate over time and are progressive (more on that below, about feet). So from moderate hearing loss to very profound hearing loss. And then, finally, functionally deaf. In my case, such profound hearing loss led the tiny cells which convey neurological signals to switch off, because they’re not being used. A classic ‘use it or lose it’ situation. So then it doesn’t matter how powerful your hearing aids are - your ears no longer pick up those frequencies. At this point if you want to hear, well, anything… you need to bring out the big guns.

Resistance Is Futile

My ears are good. My brain is good (some would claim otherwise). It’s the little hairs and nerve cells which aren’t co-operating. The solution? Bypass them entirely, and fit a Cochlear Implant which hears sounds, converts them to electrical signals, and feeds them directly into the auditory nerve (some surgical assembly required). Naturally, there is vast difference between the natural organic nervous signals the brain has a lifetime’s experience with, and the clinical electrical signals offered by a ‘CI’. This means you essentially have to ‘re-learn’ how to hear again, almost from scratch, and this is a serious cognitive re-education which many people quite understandably struggle with, sometimes forever (ATFAT). I have a headstart, however, in that I’m (relatively) young, healthy, and was an active listener until recently. I am also a huge Star Trek fan (Next Gen being my preferred poison) and the opportunity to be assimilated and join the ranks of the Borg Collective is just too good to miss. IYKYK.

Two Is Company

My rapid additional hearing loss at first only affected one ear. So only one CI needed, with the other ear still enjoying the benefits of my ReSound ENZO Q. So far so good. However, much as I predicted, the lagging ear soon caught up, and I’m now profoundly deaf (completely for some frequencies) in both ears. The issue we have is that CIs are very expensive, and the NHS are typically very strict about funding only one. So we’re now in the position of making formal appeals to see if we are one of the desperately few to have bilateral support. Watch this space.

Sole Survivor

To continue our whistle-stop medical odyssey, let’s return to the ligament contractures which are part of MDP Syndrome. Muscles can be stretched with focussed practice over time, improving elasticity and range-of-movement (ROM) at joint. Not so with tendons and ligaments, who are basically stubborn gits. For most of my adult life my feet have been semi-fixed in plantarflexion with about 15 degrees ROM at ankle. Not ideal for walking (or cycling - ATFAT). Many years ago we had a vague surgical plan to cut all my ligaments, break all my bones, and re-set everything. I avoided it at the time because I was doing ok on the bike and didn’t fancy months in a wheelchair. As my condition has progressed, and I’m now at 0 deg ROM at the ankle with all the accompanying pain and aggravation, and in a wheelchair anyway, I thought I’d reconnect with the surgical team and explore options.

To Cut a Long Story Short…

There aren’t any. Recent years have not been kind to my feet. Extensive ligament contractures have locked them rigid, warped the bones (some of which are fusing or already fused together), calcified veins, and my bone density is plummeting as I don’t walk anymore. It’s a Picassoesque trainwreck of orthopaedic chaos. How to break the bones which are fused? How to fix them in place when there’s no subcutaneous fat, so skin slides over metal plates? What if nothing heals? With the high risk of continued infections, what if one sets into the bones we’ve hacked open? I’m perhaps enjoying this gratuitous horror a little too much. But the fact remains that the original surgical plan is unrealistic and high risk for no benefit. My feet would still be fixed solid, just a bit straighter.

Getting Legless

So why not leave things as they are?

1. Amputation means I can skip the 1-4 medical appointments every week I currently do catering for damage to my feet/legs, custom shoes/insoles which never fit, and the 30 mins every night looking after my feet for no real benefit.

2. My feet give me absolutely none of the balance, compensation, weight distribution benefits of real feet. They’re blocks of immobile flesh which have irritatingly managed to retain just enough sensation to tell me they fucking hurt. All the time. They’re practically prosthetics already, with none of the modifications available and all of the pain.

3. Deteriorating bone density and high infection risk mean it’s only a matter of time before I get a bone infection. At which point they’d likely amputate anyway.

So it’s a fairly easy choice to make. Please note, I’m not taking this decision lightly, and this is not my full reasoning, but that’s ATFAT. Rest easy, the reality is not as flippant as this summary post may suggest.

Stepping Towards A Brighter Future

Bilateral trans-tibial below-knee amputations give me the chance to regain a bit of mobility. For many people, prosthetics are a diminution of their original function. For me, even if not totally successful, they’ll still be a significant upgrade in almost every possible way. We are still at the referral stage, where numerous healthcare professionals are weighing their subject-specific expertise. I have physical tests, physio tests, psychological evaluations and counselling (they’re not especially keen on letting people go around severing limbs on a whim), etc - so nothing is dead-set confirmed and I don't have any definitive timescales/dates. But I believe this is the right decision. Watch this space.

Fringe Benefits

• the acquisition of additional carbon fibre. As a cyclist, this warms my heart.

• Nike Hi-Top Jordans. Church’s brogues. Crocs. Wellies. Uggs. I will have you all.

• Swimming. I haven’t been able to, due to constant wound exposure.

• Walking. Hiking. Rucking. Nordic Skiing! (with appropriate prosthetics) All the stuff I either loved to do as a child, or never got to try due to rubbish feet.

• No more cold feet cycling in winter. No more feet.

So we come to the end of this slightly lengthy medical summary. I apologise for the frequent oversimplifications but there’s only so much detail I can expect readers to tolerate in a single sitting without becoming a cure for insomnia. I hope, however, it wasn’t too onerous and you found some of the links and detail illuminating. I also hope you’ll come back for future instalments which, for the next few editions, will be blissfully free from medical ‘stuff’.

I leave you with the following happy realisation: I have a notorious habit of combining my name with external concepts. Who doesn’t love a witty portmanteau? Who didn’t chuckle at Stantelope? Or the Stanaconda? Recent developments mean I can add StaniBorg and Standroid to my collection. Awesome.