5 Years On…I made it this far!

Hello Everyone!

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!

 

All the best, Christa

 

New Ground – Part Two

(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.

New Ground – Part One

(Beginning of narrative starts with Finding my Feet)

It was the moment of truth…my casts were coming off and my new feet would be revealed. My husband Craig was with me at Hirondelle Private Hospital, an in-patient rehabilitation centre where I was to reside for two full weeks from late October to early November. It was he who was decidedly more excited than me. I was nervous about what lay underneath the purple fibreglass that had held my feet in place for the past six weeks. Would all of my expectations for a miraculous transformation come to pass?

This process of removing my casts took over an hour as my physiotherapist, Vu, was designing the cuts along the sides so the boots could be re-used.

My casts being made into removable booties.

I had been advised that my feet would be spending more time in than out of the remodelled boots in the initial stages of rehab – but it was news to me that I would continue to wear the boots at night for 3 full months! It made sense that the new tendon required more time to ensure it was knit to my bone and made ‘aware’ of its new job of holding my feet upright. I was starting to truly understand that when Dr Ellis said full recovery would be a year, that year was going to be a long and challenging process.

Day 1 – Before the pins have been removed

My feet did not look pretty – at all. In fact, they looked like they were cased in elephant skin and had a number of ugly scars on them which I couldn’t seem to see past.  In contrast, Craig was excitedly pointing out that I now had arches like him. He is always better at seeing the potential for improvement. He was right as well. Even through the mess of dissolving black stitches, I could see that my feet not only had lovely ‘normal’ arches, but were now straight instead of curved inwards and downwards. The removal of the chunk of bone at my heel had allowed the surgeons to shift it into alignment with the front of my foot. Once my feet looked a little less puffy, red and scaly, they might well pass for average. I could get – tentatively – excited about that.

Post pin removal on Day 2. Not very pretty yet!

It’s funny to contrast what one visualises about the future and the reality that comes to fruition. I had packed a significant number of workout outfits, imagining that rehab would include spinning on a stationary bike, swimming laps in a pool, and walking on a treadmill. I needn’t have bothered with any of it. I needed no gear that would accommodate perspiration or vigourous exercise. My regime would start from my bed and comprise the very subtle movement of pulling my feet up towards my head.

Don’t get me wrong – there was something very exciting about using my ‘new’ tendons and feeling their strength as they pulled my feet in the upwards motion, as they were designed to do. I had never been able to do this action effectively. But now that both of my posterior tibial tendons had been moved from underneath my feet and attached to the top of my feet, I was able to perform this action. I wasn’t very good at it yet – it took a lot of mental concentration to use only the tendon without recruiting my thigh muscles – but I was doing it!

Dr Grace Warren came to visit me on that first day in Hirondelle. A spry woman, now in her eighties, she happily recounted stories of her early experiences as a physician in Hong Kong in the late 50s. It was there in a hospital for people suffering from leprosy that she learned how to transfer tendons of patients who had extensive nerve and tissue damage from the disease. Her experience of treating people in different parts of Asia led her to become an expert in the area. She has taught physicians around the world – 26 countries in all – how to successfully transfer tendons so patients can once again use limbs that have atrophied. The reason she is hailed as an expert (there is a book written about her entitled Doctor Number 49 http://www.eoas.info/biogs/P004947b.htm) is because tendon transfer is not actually taught at medical school!

For this reason, it is unusual to see the combination of osteotomy of the ankle – the cutting of bone and repositioning it – to correct the arch alongside the tendon transfer to regain the strength in the feet lost to Charcot Marie Tooth (CMT) disease. In fact, as far as I know, Drs Warren and Ellis are the only surgeons to use both procedures in concert for people with CMT and its common condition of Drop Foot, a gait abnormality in which the dropping of the forefoot happens due to weakness, damage to the peroneal nerve or paralysis of the muscles in the anterior portion of the lower leg, per Wikipedia (http://en.wikipedia.org/wiki/Drop_foot_syndrome). No wonder that the other surgeon I had consulted had not even considered the possibility of improving my foot strength – in fact, he had only considered fusing my ankle to increase its stability.

(Osteotomy: http://www.bcfootandankle.com/osteotomy.htm – a link from my home city…why did this surgical option never come up when I was living in British Columbia?)

By the end of the first day, I was exhausted, even though I had spent most of the day in bed and the rehabilitation had not really yet begun. I believe my fatigue stemmed from the emotional journey of seeing the road that lay ahead of me – and the reality of what my feet would now look like.  What was Day Two going to bring?

Danger!

(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 “Nitty Gritty”

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…