9. Amputations at 35
Thoughts on getting old and news on amputations.
This may turn out to be an uncomfortable post. Unfortunately, despite peppering with the odd witty (and pitch black) aside, there are some harsh truths which are difficult for me to articulate and potentially difficult for you to read. Additionally, I’m trying not to go into too much detail but a lot of it is necessary- making this a longer read than I would’ve liked. So, in the interests of fullness of record and my personal therapy, here we go…
Looming 35
It may lack the rounded impact of 40, but I think 35 and all the ‘5’s is still a bit landmark-y. Maybe it’s me, but this one also hits hard because you’re no longer ‘early 30’s’ which sounds kinda ballpark in the region of ‘late 20’s’. So you can be forgiven if people think you’re young, enthusiastic, got a bit of experience under the belt, possibly breaking through in your selected career, building a family etc. That’s ‘late 20s’ cool.
35 and ‘Mid 30s’, though, signifies you should have done all that now. You’re established. You’re quietly building your pension pot, staking some consistency, maybe started playing golf. You’ve experimented with facial hair. Mid 20th century European military history is now strangely alluring to you. You have acquired a second pet. The first is an elder statesperson, or has crossed the rainbow bridge. You are familiar with that phrase.
The Brood Phase
For about a week before my birthday I tend to enter a brooding phase. I turn inwards. I indulge in quiet contemplation, evaluation, and (unhealthy) comparison. I have mentioned it before but one of the benefits of being so obviously unique/odd is that the tendency, or validity, of comparison is reduced. I’m far less tempted, or take a better perspective, to make comparisons with other colleagues, friends, competitors etc because our realities are so consummately different. A bonus point for rare disease.
That being said, I am/was grumpy and constantly assaulted by feelings of ‘where is my life going? What have I actually achieved?’ and those sentiments this year have been massaged by the ‘Big 35’ significance and the fact it is difficult to make plans when you do not know what your basic physical condition is going to be like over the coming months.
All Change
Because the last few months have featured a lot of disruption and soul-searching. Having spent most of 2023 with no great plans, it has been a ‘journey’ suddenly being offered a Cochlear Implant towards the end of the year, with the op taking place in late April (more details in my last blog!). That would be enough change/adaptation for most people. But then in January my deteriorating feet and lower legs prompted the idea of a double amputation (see numerous previous blogs).
A Second Opinion
I got my head around a double amputation and, as part of due diligence and pragmatic medical practice, the orthopaedic team at Exeter agreed to request a second opinion from the UK’s top team at the Royal National Orthopaedic Hospital, in light of my various extra medical issues.
Mr Cullen was/is an extremely pleasant gentleman surgeon who I cannot fault, who believed double below-knee amputation was not feasible. The quality and minimal amount of flesh I have on my lower legs is not, in his opinion, conducive to healing and/or regular contact with a prosthetic limb. In fairness to him, that is exactly the assessment I would have made and is very reasonably textbook presentation. The problem is I have a talent for tearing up textbooks. And I had become rather attached to the notion of being a double amputee and it potentially improving my quality of life and mobility. So his refusal recommendation was a bit of a shock and has taken time to overcome. I must stress, though, that I am very grateful for Mr Cullen’s candour.
However Mr Cullen, in a perfect example of professional humility and kindness, agreed he was perhaps not the best authority in my particular case, and was keen to explore what may be possible, so referred me to his Rehabilitation Consultant RNOH colleague, Mr Sedki. (This is starting to sound like a procedural legal/police drama, and I am all for it.)
A Third Opinion
Fast forward 3 months, we are back at RNOH Stanmore, to see Mr Sedki the Rehab Consultant, and his two valued colleagues- a prosthetist, and a physio- whose names I have unforgivably failed to remember. Please accept my apologies, if you’re reading. I liked Mr Sedki as much as I liked Mr Cullen which is to say I very much appreciated their extensive experience but also openness to debate. Which I did. For 90 mins. With handouts. If you ever find yourself in a position whereby the result of a discussion is going to significantly affect your fundamental ability to move over the next few decades, you will find it can be very motivating on the handout creation front.
Out on a Limb
The issue we have is this: I have fairly progressed peripheral neuropathy on my lower legs. In non-med terms, this means some of the nerves there have either died or got a bit rusty as a result of poor circulation or other nerve issues. (They think it’s, as is common, a result of my diabetes but I disagree as it is very well-managed and I have long felt MDP has a significant nervous component). Regardless of the cause, such neuropathy does not lend itself to good healing (after the chop), and also does not support the healthy elastic robust flesh required to handle the shear strains and stresses of a prosthetic socket.
What this means: they might chop my legs off and we discover healing is very slow. And healing may not even happen. And if it does happen (odds are stacked against, to be perfectly blunt) there is no guarantee I’ll be able to use a prosthetic. So wheelchair it is, on my stumps (which may or may not have healed).
Balancing the Decision
Stated in such plain terms, I had reason to stop and consider - and have been, more or less, for the ~6 months since January. I have essentially come down to this simple position:
somebody is going to chop my legs off. Either now, or in future as a result of infections as my legs continue to deteriorate and the bones crumble.
As amputation is inevitable, wouldn’t it be better to do it now - when there is a slim chance of healing/prosthetic success, giving me more mobility and quality of life- rather than later, when it is exceedingly unlikely that healing/prosthetics will be successful. Not to mention providing me with reduced infection risk.
I don’t gain additional years of comfort/mobility by waiting- because I currently have very little comfort/mobility. I’m in a wheelchair most of the time now anyway.
I currently have 1-4 medical appointments EVERY WEEK for wound management, podiatry, orthotics, etc. Including travel, that is about 1.5 - 6hrs. Not including time lost through re-establishing routine/focus, etc. These appointments do not ‘give’ me anything. They are for maintaining my current poor mobility and lower leg health. I also change dressings on my feet daily/every other day. That’s 3hrs a week, realistically.
Following the initial post-operative period of many appointments, I could theoretically move to just 1 appointment a week, or even a fortnight, for wound care or for tweaking prosthetics. That’s a reduction of 18hrs a fortnight to potentially 1.5hr. That’s a win for my quality of life, even if I never touch a prosthetic. Never mind the vast reduction in ongoing infection risk, the emotional rollercoaster of poorly-fitting footwear, the constant re-dressing and monitoring of rubbish feet.
So there we are. The ‘chance’ of improved mobility and quality of life, which rapidly reduces the longer we leave it. Worst case scenario: doesn’t heal, I’m in a wheelchair. I can tell you there are far far worse situations to be in, and my friends who do use wheelchairs will tell you that there are boundless joys and fulfilment possible on 4 wheels. So it’s a very easy decision to make, even if I’d rather it was never posed.
Moving Forwards
To clarify, Mr Sedki and team are going with my decision. We just have the interminable surgical waiting lists to overcome. 1 month? A year? How many amputations do they do? So now just waiting while letters are being written and waiting lists are being respected. I will update on here when I know timescales.
They say that neuropathy is irreversible, and changes to diet/exercise/healthcare merely stem the advancement rather than cure the damage. I’m going to test that hypothesis. ‘Use it or lose it’ is a favourite adage of mine, so I’m going to see how much stimulation I can give the nerves in my calves through pedalling 90 revolutions a minute for 10, 12, 15, 20 hrs a week.
I’m backing this up with daily assaults with a massage gun, the capillarisation program on my Compex unit, compression socks, elevating my feet, Vit D and Omega 3 supplementation, and hypnotherapy recordings. Does it all work? No idea. Am I going to do it anyway? Yep. I want my lower legs to be at the absolute peak of physical health to help support any healing or prosthetics which may happen.
Thank you for reading and following this journey.
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Epilogue: Life Expectancy
I’ve noted a few people don’t want to ask this question. So I’ll pre-emptively answer.
While MDP syndrome has numerous symptoms and associated conditions, none of them are immediately life threatening or limiting with management. Indeed, I believe there are two people with MDP in their late 60’s and general good health. So we can pretty safely dispel the notion that MDP is in any way fundamentally life-limiting.
However, the fact my symptoms seem more severe than many other sufferers (much worse hearing. feet, etc) is concerning. More specifically, and I don’t want to be morbid, but if we consider the rate of decline across all my biological systems over the last few years, I’m not holding out much hope for receiving a private pension. And not because I don’t currently pay into one.
What I will say, though is Thank Fuck there are no mental/psychological aspects of MDP and my various conditions that we know of. We will see what happens over the coming months, years, etc. but while I have very limited desire to limp on past a physical sell-by date I’m comfortable sustaining, I certainly won’t tolerate mental decline. This is a factor in my general impatience to crack on.