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…