Your responses to my blog postings have been so heartfelt, and it has been so long since my last post, that I felt compelled to write an update.
It has been a challenging ride to get here – the outcome of the operation has definitely not been an all-rosy experience. I have had some real lows in relation to the varying results I have had.
The Good
I can still fit into more shoes than I used to be able to; my arches have remained lower than prior to the surgery.
My ankles are straight and that means I now feel comfortable wearing skirts and dresses.
I don’t tend to fall over as my arches are neutral, no longer supernated (walking on the outside of the foot).
I walk with more of a heel-ball-toe motion in my feet.
My feet look prettier!
The Bad
My walking is slow and I walk consciously; that is, it takes me energy to just think about walking. Dr Grace Warren would suggest that the surgery would mean that I would ‘forget’ about walking. Not so at all!
Balancing on one foot is still rubbish – I just can’t do it for a sustained period.
My ankles are still weak, and it is difficult to walk on uneven ground. Hikes with lots of tree roots or rocks are not an option.
My big toes droop. Part of the surgery involved straightening all of my toes to relieve the clawed, hammer toes. Dr Andrew Ellis put metal rods in my two big toes, which makes them heavier. The result is that the new tendon, which has weakened since surgery, cannot lift my big toes. When in bare feet, I often trip on my right toe. It is near impossible to walk on the beach in bare feet without tripping on my toe.
The Ugly
One of the worst outcomes of surgery is that the tendon transfer (from the bottom to the top of my feet) did not ‘take’; that is, my CMT ( Charcot Marie Tooth) condition meant that the new tendon, which pulls the foot upwards when walking, was weakened by the disease. The aspect of walking that is still challenging is pulling my feet up, and means my gait is a bit awkward and laboured.
My calves and hamstrings are VERY weak! This is a direct result of being in casts for two, 6-week periods for the surgeries. I cannot stand on my toes, my gait is slow because of my weak muscles, and it is particularly difficult for me to climb stairs – I have to use the handrail to pull myself up.
To this day, I do not understand why I was not advised that the CMT would compromise my muscles during the time they were not in use for those two long periods of time. As Dr Ellis explained to a frustrated me following the operation: “People with CMT have muscles that run out of gas much faster than for people who do not have the condition.”
So WHY – oh why – did he not advise me that the time in casts would weaken my muscles, permanently, it would seem?
My Summary
So, with all the negatives of the surgery results, am I happy that I had the surgery? Would I do it again, presented with the option?
I have thought about these questions a lot. In my darkest days, the surgery was a mistake. I would agonize over my walking and my stair-climbing abilities. Much more than spending the 25K on the two surgeries, I felt that I had ruined my feet. I believed that the negatives definitely outweighed the benefits.
Today, with my sunny disposition back, I am glad I had the surgery. There are many negatives, but it was not a mistake. I do walk better, and I am vain, so I appreciate being able to wear the skirts and dresses.
I hope this posting helps all of you who are considering undergoing surgery. Be sure to ask your doctor all of the difficult questions, and be prepared for more hard work that they suggest.
And please keep your comments and questions coming – I love the feedback, and knowing that I’m helping people with similar struggles!
I am slightly overwhelmed as I sit down to write this latest post.
So many people have asked me what has happened in my recovery process since the last time I wrote, now over 10 months ago. I feel the pressure to be one of the ambassadors for this unfair condition – this unsexy disease called Charcot Marie Tooth (CMT). CMT affects 1 in 2,500 people worldwide, making it one of the most common genetic disorders. Sadly, it is also one of the least funded conditions (damn that cancer!), even though it negatively impacts so many people. So we need more voices to talk about what hope there is for treatment and recovery.
I also feel inspired by all of you who have written to me with your similar stories. I am prompted to continue my writing in order that I may help others rediscover optimism that they too might get help. I am hopeful and optimistic that others will feel the relief and joy that is now mine.
That’s right! My story continues with gratitude to my doctors, Dr Andrew Ellis and Dr Grace Warren, in North Sydney, Australia. My story is accompanied by relief that I am now able to do many of the things that others take for granted, like walking with normal shoes and stepping out to dinner in fab boots or cute ballet shoes. My story continues with ongoing work – hard work at times – and regular exercise. I continue to get stronger whilst pushing myself out of my comfort zone, challenging my beliefs about what I can and cannot do post surgery.
Through my story, I will try to answer as many of your questions as I can. I am going to let Robyn, the latest person to share her challenges with CMT, help me to answer your many queries and concerns. I hope this will bring a sense of optimism, shared experience and, ultimately, lead to a great result for those who decide to pursue surgery, as I did.
Here are Robyn’s questions:
How far can you walk now?
Do you have to sit and rest after a certain amount of time?
What about walking on uneven ground?
Would you / have you considered hiking with your new feet?
What about going up and down stairs? Can you do it without a hand rail?
Are you still exhausted at the end of the day?
How far can you walk now?
Last weekend I completed a 7km hike around a beautiful lake in Nanaimo, BC. It was a gentle and mostly flat walk that could be completed easily in runners. However, it was the longest walk I have challenged myself to take since my second, follow-up operation (more about that in my next posting). It was only in the final few steps of the walk that I felt a bit of a twinge in my right foot – and perhaps that was just a psychological reaction as I could see the end of the walk.
Do you have to sit and rest after a certain amount of time?
I really don’t have to rest anymore!
This was not at all the case when I came out of my casts. When I was released from my leg casts, I found myself staring down at two shriveled excuses for calves. Of course, this happens to anyone who has had to wear casts for a prolonged period of time; in my case, this was a total of six weeks. What Drs Ellis and Grace did not tell me – did not think to tell me! – was that it takes far, far longer for a person with CMT to recover from muscle atrophy. Far, far longer!
I found myself in Dr Ellis’ office, 10 months after surgery, crying with frustration and anger because I felt worse off than I had prior to surgery. He sympathetically advised me that my muscle recovery would likely take another 12 to 18 months for them to get back to the strength they had been originally.
What??!! And that was only with an intense regime of regular swimming, cycling, walking and my myriad of static exercises! I was pissed, frustrated and ultimately, annoyed with him. How could he not emphasize that fact prior to me spending 25K and months of my time?!
That news was delivered to me around the time of my last posting in July 2013. Perhaps that explains why I have been ambivalent about writing another post!
But here I am another nine months later from that visit to his office. I am getting stronger by the month. I say ‘month’ as the changes are too small to see weekly; however, I have noticed a significant shift in my strength and pace since I began walking three times a day with my new dog, Mack. Suddenly, within five weeks, I noticed a huge difference in my endurance. The seven kilometre walk, and recent long walks on the seawall and forest paths, are completed with little conscious thought. Like any person with normal mobility, I am starting to take for granted my ability to walk long distances. It is a joyful delight to actually ‘forget’ about walking!
What about walking on uneven ground?
That is good now too. I love walking on sand in bare feet and trekking through forest paths. With my arches drastically reduced, such that they are now considered ‘normal’ (though still high), I have so much more ground under my feet. This was the very first thing I noticed when my casts came off. No longer did I wobble when I stood for any length of time. Instead, I felt firmly connected to the ground for the first time in my life.
Balancing on one leg can still be challenging, but that is largely due to my still-weak calves. But this too is getting better. I went to a concert last May and found it challenging to stand for the whole concert. I was stronger during the next concert I attended in September. Last night, it was no problem for me to queue for an hour to get into a venue. Thus, progress continues over the months.
Would you / have you considered hiking with your new feet?
Absolutely. My boyfriend and I are plotting many upcoming hikes. As I noted, I am starting slowly with more even ground. It is still challenging for me to mount large steps due to muscle strength in my calves and hamstrings. But I have big dreams for Summer 2015 when I am considering doing the West Coast Trail with him. That will require regular training by getting outside and on the trails. My big dream – the one that I dreamt of doing when I saw the film, The Way – is to complete at least part of the ‘El Camino de Santiago’ in Spain.
So rather than being deflated by all that I cannot do, I am excited for the future!
What about going up and down stairs? Can you do it without a hand rail?
Going up stairs continues to be tiring for me. It has been my number one complaint since my post-operative muscle atrophy. But it’s getting better – SLOWLY. I have been seeing a new physio since November (I now live back in Vancouver), and he has given me lots of great exercises that I can do at the gym or at home. I chose to work with Nate Mundy because, though young, he has worked before with people who have CMT. I knew this was a better option than working with someone in Sports Medicine who might be challenged by my very basic needs and slow progression. Nate has been awesome, patient and encouraging. In the last month, I must say that I haven’t done my exercises – at all! – whereas I had been doing them diligently three times a week. Fortunately, all of the walking I have been doing has produced much faster results than my static strengthening exercises.
As for going downstairs, I do sometimes use the handrail, but that it is becoming less frequent as I develop greater trust in my strength and balance. Shortly after surgery in the Autumn of 2012, the place where my foot bones meet the tibia (the bone at the base of the leg), felt like they were grinding together. This made walking down stairs awkward and jerky. I would have to hop down the stair when on my right leg. This really scared me. I had gone through this intense surgery, full of joy and excitement for my future well-being, only to find that I had walked down stairs better before the surgery!!
I took out my anger and frustration on my physio at the time, Dan Gartner. Luckily he took it in stride and gave me additional exercises – more bloody exercises! – to stretch and release the top of my ankle from the tibia. I remember only doing those exercises for a month or so before the problem righted itself. Now I go down stairs without favouring either foot.
On steep stairs or hills, as on my lake walk, I still exercise caution. My body remembers how often I went over on my ankles! However, I grow evermore confident.
Are you still exhausted at the end of the day?
No!
I should point out that I have CMT Type 1A, the mildest version of the disease. I have always been able to do cardio exercise (using the stationary bike or swimming) with relative ease. However, when I re-started my fitness regime with Nate in November, 14 months after surgery, I did tire very easily. It was discouraging to use the stationary bike and be challenged to get through 20 minutes when I had regularly attended 45-minute spinning classes with aplomb.
I am happy to report that cycling is no longer tough. I can now rock out to Rage Against the Machine or Queens of the Stone Age at that fast, angry tempo. I enjoy it was again rather than being discouraged.
I will end this post by saying that Dr Ellis did indeed warn me that the recovery process was ‘grueling’. Whilst I nodded and agreed to the terms put in front of me, I was too excited by the longer term results to give his words their proper consideration. One of the reasons I started this blog was to give people information that there are surgeons who can help with CMT from a structural point of view. This operation has made my life and my living infinitely easier.
But I also need to emphasize the emotional toll of going through the recovery process. The operation itself was a breeze – I didn’t have to do the six hours of work (two surgeons, each working on one foot, did that!). But the rehabilitation process requires patience, perseverance and a positive attitude. I lost all three of those at the 10-month mark. It was hell and I got depressed about it – literally. It took me a couple of false starts and a good four months to get back on track, and it required a great deal of my emotional strength and support from others to do so.
I can say today that it has all been worth it for what I have gained in mobility, pace and new shoes!! Thank you again to Drs Ellis and Warren for giving me a new lease on life. I will be forever grateful.
My next blog entry will address my second, follow up operation I had last April to correct four of my toes, and I will seek to fill in more blanks to your questions. I will also post some ‘before’ and ‘after’ photos.
Please continue to read and write to me. It makes my efforts worthwhile to know that I am helping others.
(Beginning of narrative starts at bottom with Finding my Feet)
It has been a bit of a ride these past four months with both highs and lows. But the highs outnumber the lows, so I will start with those.
Standing. Now that I have become use to standing with my whole foot, including the balls of my feet, I am starting to forget how challenging this simple act once was. There was a time, only four months ago, when I was constantly aware of the risk of going over on my ankles, such was the degree to which my feet supinated (balancing my weight on the outsides of my feet). Whilst I still need to bring conscious attention to keep my weight more forward than I have been accustomed to, it is an amazing thing to stand upright and straight with normal effort.
Three weeks post casts, one week post rehab
Normal looking feet. No small thing, my feet now fit into a greater range of shoes than they once did. Apparently I have a year to go before I can sport small heels, but I’m more than happy with cute flats. Where once my high arches meant I would ‘pop out’ of flats, now they sit comfortably. Where once my ankles looked crooked, my feet are now properly aligned. And now that my feet are straight, they don’t twist the shape of my shoes over time.
In cute flats – going to the Christmas party (3 months post surgery. There was even a bit of dancing. Amazing!
Physical feats. As we set up our new home gym – to support my re-building and re-strengthening – I learned I was now much improved at certain specifics things, including: lunges, squats and boxing! Before when I did lunges, especially on my left side, my highly arched foot would twist and then so too would my knee. Where it had been impossible for me to do a ‘normal’ lunge, I can now lower my knee down straight supported by my foot! ‘Squats’ had also been challenging as I was constantly fighting my arches as I tried to lean back. Boxing was always an effort – not the punching – but rather the planted stance required to balance and throw a punch with the whole body.
Boxing training after a hard day at the office.
And the harder parts of my journey, both physically and psychologically:
Walking. My walking is very slow. And awkward. And difficult. My surgeon, Dr Warren, and my physio at rehab had told me I had to learn to forget about walking. But I’m finding that nearly impossible. I am highly conscious of my slow and plodding gait, especially when going uphill and downhill. Whilst I don’t use my crutch very often (mostly to stand straight when I fatigue), I carry it with me whenever I walk outside. I still use it as a ‘crutch’ for my sense of security; it also helps to signal to others that this is why I’m slow.
It’s also challenging to have full range of motion in stiffer dress shoes for work, versus my runners or Birkenstocks. It’s bloody hard and bloody discouraging at times. Who the hell spoke about dancing when walking is so challenging?
Progress. I had disappointing news from my current physiotherapist, Dan, a couple of days ago. Apparently my progress is not where it should be at this point (whereas the feedback in my earlier appointments had been positive and encouraging). I’m not following through on my step; that is, I’m not pushing through from the ball of my foot at the end of the step motion. The problem is in part my very weak calves. They are weak from being in casts for so long, from not really being fully utilised in my former life, and because of the CMT. And it’s discouraging that they are currently capable of so little at the moment. In order to push up onto my toes I have to lean on a table for support. The other, not insignificant part of the issue, is my old fears of falling over or tripping. This will be just as challenging to overcome.
So I have a new batch of exercises to add to my list, including practising that isolated part of lift off – almost tricking my brain. I also need to stretch my foot downwards to increase the range of motion. I should be walking up and down hills on a daily basis. And I should be swimming 5 times a week to increase strength in my feet and calves. 5 times! I told my local GP that I should dedicate my full schedule to my rehabilitation. He told me that that’s what athletes do when they’re injured. But given I have a demanding full time job, that’s just not possible. Even if I now make time for a dedicated swimming routine, that includes practising standing on tiptoe and use of swim flippers, I can expect very slow and incremental progress. That’s a tough message when I have been diligent with my daily set of exercises for over two months now. It’s frustrating and all encompassing.
My surgeon, Dr Ellis, did tell me it would take a full year. I now have a visceral understanding of what that means. Actually, I will be happy if it ONLY takes a full year. At this point, I worry that I won’t be where I want to be by September 2013. But I’m now off to go swimming and re-dedicate myself to this process. Wish me luck!
(Scroll down for New Ground – Part One; beginning of full narrative starts with Finding my Feet)
On the morning of the second day in the rehabilitation hospital, Dr Ellis came by with what looked like a pair of household pliers. Without fuss or ceremony he began pulling out the thin metal pins that were holding my eight toes in a straightened position. I had been dreading this part, but it was over too quickly for me to register much fear. It was more ridiculous than painful to watch Dr Ellis work up sweat as he applied simple DIY techniques to my toes. A few simple plasters later, and there was no more metal in my toes, apart from that embedded permanently in the top joint of my big toes.
Right before the pins in my toes were removed
For my exercises on Day Two I graduated to sitting in a chair, practising lifting my foot by my tendon against the force of gravity. This was definitely a more challenging exercise than from a prone position in bed. But I was getting better at creating the mental pathway between my ‘request’ to my foot and the corresponding action. I no longer had to tap my foot with my finger to help my brain know what action I required of my tendon. I found that meditation and visualisation helped to make this new connection happen faster. As research in neuroscience shows, the brain is quite adept at finding new neural pathways – and my brain seemed to be picking up the new pathway fairly quickly.
Pins removed and simple plasters put on.
On Day three, I was finally allowed to give me feet a good soak in water and salt so that the ‘elephant skin’, as I unlovingly called it, could be scrubbed off. I felt more prepared to have a good look at my feet than I had been on the first day. They still weren’t pretty, but the scars were fairly thin and neat. My feet were a little bit swollen but they were definitely shaped like normal feet: quite nice feet actually.
A poor mobile photo – with my ‘pet’ koala in the foreground – but it does show a scrubbed and much improved looking left foot!
Once thoroughly dried, I got to put runners on my feet for the first time and put my full weight on my feet. How incredibly strange! It felt like I was going to fall forward. I had not been conscious of the fact that for years I had held myself up on the backs of my heels, barely using the balls of my feet, toes or calves to hold myself upright. It was also drawn to my attention – by my astute and eagle-eyed physiotherapist, Sylvia – that I was continuously bending my knees rather than standing straight. I had not realised that I kept a bend in my knees to retain my balance. Now that I was practising my foot motion from an upright position, I had to re-learn standing! My inner thigh muscles were weak as I had been using my outer thigh muscles, walking as I had on the outsides of my feet to compensate for my high arches. But where I once in regular fear of going over on my ankles, they now felt as if it would be quite difficult for them to go over. And it felt incredible to feel so much more of the floor under my feet. I was literally more grounded to the earth!
There was to be no real walking for me yet. First it was ‘baby’ marching, practicing the foot lift motion as the first thing I did in a step. Again, this was new learning for me and my whole body. For years, largely unconsciously, I have begun my steps by swinging my leg out to achieve forward momentum; on my left side especially, my weak tendon did not have the strength to pull my foot up. That is why people often assumed the issue was in my hip or leg. Even though my small exercises did not look like much, and even though I was a far cry from my original expectations, it was exciting to have a strong set of tendons that were doing the job they were supposed to. And they were doing it well!
It wasn’t until the second week of rehab that I started the experiment of walking. Bear in mind, I was still making full use of my crutches. My balance was weak and I couldn’t imagine letting them go. But my various physiotherapists – all of whom had been educated in CMT and the re-training process by Drs Ellis and Warren – also insisted that I use the crutches to promote the correct gait. And re-training meant that I was taking very small steps. With every step, I was practicing pulling up my foot and holding it up until it came back down to earth. But I also had to remember to straighten my legs which were nervous about this new walking style and inclined to bend. Walking in my previous life was always fraught with the real risk of tripping or losing my balance – so my knees were use to being ready! The process was more mentally than physically exhausting. As Sylvia noted, the ultimate goal was to ‘forget’ about walking!
As I neared the end of my stay in Hirondelle, it became clear that my original image of walking out of the doors like a normal person was out of line with the reality. One person had excitedly told me I would be “dancing” when next I saw her. I was still a far cry from dancing and was continuing to reconcile emotionally with the journey ahead of me. I was now walking, and without either crutch for short periods, but it was rather slow going and tentative.
However, I had gained huge ground from the moment when the casts were loosed from my feet, two weeks earlier. I was being released into the big world of obstacles and uneven ground with my new feet to take me forward. There was still much work to do, but it was now largely up to me to carry on the challenging task of re-educating my tendons, feet, legs, muscles and brain. After all, we all start in this world with baby steps.
(Scroll to bottom for beginning of narrative: Finding my Feet)
I have been told ‘No’ for many years with regard to my feet: No, it’s not possible to operate; No, we don’t know the origins of your problem feet; No, you will just have to live with them.
So when I heard ‘Yes’ for the first time, I got excited.
I was sitting across from a respected orthopaedic surgeon and he was telling me there was a solution. And it could be done in the next few weeks!
As he quizzed me on how my feet were bothering me (in a manner that felt like interrogation), he seemed to gravitate to a single element in my list of symptoms: the fact that I went over on my ankles. From that point, he became energised, describing how that problem could be corrected, improving my condition by up to 90 per cent. 90 per cent improvement! I could barely contain my emotions.
But there were things he was saying – and not saying – that were giving me a sense of disquiet. So I quizzed him.
Could we reduce my high arches? No, my pes cavus could not be fixed by surgery.
But I’ve read about a woman in the US who had her high arches successfully corrected.We can’t do it.
What about my hammer toes – could they be straightened? Well yes, but not with this operation.
Why not? It would be too risky in concert with the other procedure to stabilise my ankles. Yes, my toes would inevitably get worse, but we could wait for a few years when they we were in poorer shape and then perform a second operation to correct them at that time. (He advised me to take a photo of my hammer toes now and then take another photo in a year to track their inevitable worsening).
Well, what about being able to wear different shoes – ones that were more attractive and wouldn’t bother my feet? Sorry, you’re just going to have to buy orthopaedic shoes. (He didn’t actually appear that sorry at all; his manner evidenced little in the way of empathy.)
So the news wasn’t that good after all.
In addition, I would have to have two surgeries – each foot to be done separately – thus requiring double the time off work and double the cost of the procedure and hospitalisation fees. Not to mention the two subsequent surgeries for my clawed toes in the future!
Should I get a second opinion? If you want to, you can. But, if he’s any good, he’ll tell you the same thing.
And then the surgeon swiftly consulted his diary, tentatively booked me in for a date six weeks in the future, gave me some literature on post-op treatment, and the bill estimate. And then he said goodbye.
I quizzed the receptionist on my way out. Is he a skilled practitioner? Are his skills as a surgeon better than his bed-side manner? Oh yes, I wouldn’t work for him if he wasn’t any good!
I am so glad I trusted my instinct and listened to neither of them. I shudder to think what would have happened if I hadn’t decided to seek a second opinion. What if I was one of those people who categorically believe everything the authority in the white coat tells them? It makes me angry that there are likely others with CMT (Charcot Marie Tooth disease) and pes cavus feet that have listened to this surgeon, and others like him, and not had their actual problem addressed.
The surgeon, who shall remain nameless, specialises in sports injury and in ligamentous stabilisation of the ankle. Remarkably, this is the same procedure he recommended for me along with osteotomy with internal fixation of various bones. Because of his arrogance and lack of interest in a condition that fell outside of his sphere of specialisation, he was willing to give me a stop-gap solution. How selfish!
I am so grateful for a little thing called the Internet that led my husband to find Drs Ellis, Warren and Nicholson who were the right people to help me with my condition. I am also grateful that I listened to others who cautioned me against surgeons who are more interested in collecting their fee than the central interests of the person sitting in front of them. Had I not listened to those other opinions, and had I been swept up by the excitement of a possible solution, I may have embarked on a series of costly procedures that would have ultimately impaired the functioning of my feet.
The pain in my feet did increase a bit following that first night post-surgery as the spinal morphine wore off. But my pain never increased beyond a 4 or 5 out of 10. It was never unmanageable and I never once made use of my morphine drip, which was perversely disappointing. I do believe my excitement for the final outcome mitigated some of the pain.
On Day 4, as my last tube was removed (the catheter), I was feeling little discomfort relative to the major reconstruction that had been meted upon my feet. My original white plasters, with splits at the back to allow for the swelling, were now fully encased in two strikingly purple casts. They looked almost stylish, if you can call flamboyantly coloured Ugg Boots stylish.
Me, my koala Joey, and my purple feet.
But they were in fact functional, as evidenced by the couple of short trips around my hospital room with the aid of a walker. But my first few steps were a bit shocking as I felt pain radiating through the tops – not bottoms – of my feet. And the weight of the casts definitely made things slow-going and awkward initially. But, it was an amazing feat (ha ha) that I was applying weight to my feet less than 72 hours after the operation.
Dr Ellis and Dr Warren are unique in their approach to getting both feet ‘done’ simultaneously. In my case, each of them operated on a foot in concert in order to lessen my time on the operating table, which was still almost six hours. Their 15 years of experience in this procedure also shows that allowing the patient to go through the motion of walking as soon as possible begins the process of re-training the brain’s relationship with the correct motion of the feet.
This approach has made it more feasible to request the time off work – 9 weeks in total, including two weeks of rehabilitation. It’s also far less expensive – for me and my employer. As I understand it, surgeons in North America tend to operate on one foot, allow time for the recovery process, and then operate on the second foot. But the other benefit to Drs Ellis and Warrens’ method is that the feet have the opportunity to re-learn the process of walking in unison, thus promoting a balanced gait in recovery.
On Day 5, during his daily visit, Craig noticed with excitement that I was walking heel-ball-toe – the full range of motion – in my chunky casts. Amazing! I hadn’t even noticed, so pleased was I that the pain was greatly reduced from the day before and I was not cruising (slowly) down the hospital hallways on crutches. What I had noticed was that I was now able to pull my foot up to begin the motion of a step, even with the weight of the casts.
One of the symptoms of Charcot-Marie-Tooth disease (CMT) is what’s referred to as Drop Foot – the loss of muscle function or generalized nerve weakness in the front of the lower leg (http://www.footeducation.com/posterior-tibial-tendon-transfer-to-dorsal-foot). Before my own diagnosis of CMT by Dr Garth Nicholson, Professor at Sydney Medical School and a peer of Drs Warren and Ellis, I had no idea this was the reason my feet would fatigue quickly and why I could scarcely lift my feet in heavy shoes. I had just assumed it was related to the actual structure of my feet. Dr Nicholson was in fact the first to map the CMT gene, such that the disease can now be confirmed by genetic testing in a matter of weeks.
The reason I was now able to lift my feet at their bases was due to the transfer of tendons, one of the arsenal of procedures performed during my surgery. Dr Ellis told me upon our first meeting that he and Dr Warren were pioneers of incorporating tendon transfer in concert with the correction of high arches (aka pes cavus). Most orthopaedic surgeons fuse the ankle bone to increase the stability of the foot. Whilst this addresses the issue of stability superficially, it also lessens mobility. By combining the re-structure of the foot with the transfer of the strong tendons underneath the foot to the top of the foot, I have had both problems addressed in one operation.
But it doesn’t end there. Along with the reduction of my arches and straightening of my heels by osteotomies (the removal of a chunk of bone from one part of my foot and moving to another) and the transfer of tendons, I have also had all 8 small toes straightened with wires and the big toes straightened with metal bolts. Eight procedures in all – multiplied by two feet. No wonder the operation took over six hours!
As I write this posting I am fast approaching the four-week mark since my surgery. I have been happily – and easily – walking on my booted feet for just over three weeks now. I have the unforeseen benefit of living in a single-storey house. The house does have a very long halfway that I have been required to walk up and down daily, but I have noticed incremental improvements in my ability to navigate the distance. I’m now often on a single crutch – or walking without either when I have ample countertops for balance. I also have made two relatively short trips out of the house. But otherwise, I have been enjoying the opportunity to put my feet up (literally) and do very little.
In just over two weeks’ time I will have my purple ‘Uggs’ removed and I will then begin the intensive two-week rehabilitation process as an in-patient, strengthening my new tendons and feet as I learn to walk anew. Not long to go now…
My right foot showing pes cavus (high arch) and hammer toes
Sydney. Australia: North Shore Private Hospital, 2 am-something in the morning.
I have always had high arches – high-arched feet, that is. And I’ve always been told there is nothing that can be done to correct them.
So I have lived with them for over 43 years. I would go over on my ankles, trip and fall, feel unstable on them, and I got tired on them. And I got tired of them. I wanted to love them as a part of my body, but I didn’t. They looked ugly to me. More importantly, they didn’t work the way feet are supposed to. Instead of a full range of motion from heel, ball to toes, my feet slapped down quickly from my heels to my toes. Instead of balancing me on the ground, my feet made me wobbly and imbalanced. I was supernating: using the outside of my feet, instead of the bottoms, to propel me forward. Instead of carrying me for miles, my feet would get weak and make me prone to tripping on them.
One of the things I didn’t know before I embarked on this journey was that I had CMT: Charcot-Marie-Tooth disease. Though it’s the most common genetic disorder worldwide, the diagosis was never made for me. I had never heard of it. Though high arches – or pes cavus – is CMT’s most common feature, my ‘deformed’ feet were never connected to the disorder. Though I was positively tested as a child for neuropathy, based on the lack of touch sensation in my toes and feet, no one ever let me know what that meant and doctors seemed to lose interest in my condition by my early teenage years. Though it’s described in detail on WIKIPEDIA – complete with a photo of ‘my’ foot, no physician ever told me about CMT. It’s the first search result on Google!
But it doesn’t matter now because I have found a team of doctors who have recognised the condition. More than a diagnosis, they have also operated on my ‘inoperable’ feet. I’m looking at those feet right now as they point up in their white casts; and I’m looking at my toes, no longer curled and clawed, little plastic balls on the ends of them, which are holding the wires that are straightening them. Marvellous.
My plastered feet hours after surgery
And finally, 43 years into my life, I have learned that young children are having this condition corrected in their early years. I met another surgeon, just before I went under for my own surgery, who is learning the procedure as he specialises in treating children. Wonderful.
I want as many people as possible to know that pes cavus feet can be corrected – whether they suffer from it or not – so they can tell their friends, family or colleagues who do have the condition. That is why I’m writing this blog. Not enough people know about it, even though 1 in 3000 of us suffer from it. And most people do not fare as well as me for I have a mild case of CMT (subtype 1A, to be precise).
My husband, Craig, began to uncover this phenomenon via someone else’s blog in the US, thus kicking off his search for specialists in Australia. The search led to Dr Andrew Ellis, Dr Grace Warren, and Dr Garth Nicholson, all based in Sydney. These are the same three people who have brought me to this point in my journey: lying in North Shore Private Hospital in a white gown and white plastered feet at 2am in the morning, on the morning following my surgery, because I’m too excited to sleep.
I have yet to see the finished articles, but I will in 6 weeks time when the next set of (weight-bearing) casts come off. It’s at that point that I will be re-trained in walking. That’s the really exciting part, but I have some time to wait before I get to that point. In the interim, I plan to track my progress, learn more from my physicians about their own journeys in their specialisation, and share the highlights of my progress for whomever can benefit from my experience. If only one person who is affected can make use of the information in this blog, it will have been worth my efforts.
PS. I haven’t yet needed to touch my morphine drip as the pain is minimal. Amazing!
The CMT Pes Cavus Blog 