Name : Peter Haywood
Adult: 42 years old
Location: Tauranga, New Zealand
Areas of body affected: Second and third toe of left foot
I was born in the UK, but have lived in New Zealand since 2002. I have memories of pains in my feet as a teenager; the doctor put it down to 'growing pains.' In my twenties, I used to get a swelling to the underside of my left foot, often after playing football (soccer), which developed into a permanent lump, often making walking painful. Further visits to doctors and finally an appointment with an Orthopaedic Surgeon, Mr. Angel at the Royal National Orthopaedic Hospital, London, led to Melorheostosis being diagnosed. A boney growth fusing together the second and third toes and the telltale 'candle wax' to both toes was evident from x-ray and MRI scan.
I had my first operation in 1994 (aged 31) to 'shave' this lump, at the RNOH, a very run down old isolation hospital. Situated on a hill, it was also not well suited for orthopaedic patients, but I was reassured that this was the best treatment I could get. However, I could not be told whether the lump would regrow or not. Needless to say it did, along with further thickening of the second and third toes. A further operation in 2000 to shave the bone again and possible amputation of both toes followed. Fortunately (the surgeon said miraculously), amputation was not necessary due to good blood circulation.
I have recently seen an Orthopaedic Surgeon who specializes in 'the extremities' here in Tauranga, NZ. I am waiting for an MRI scan which in the next couple of weeks should confirm surgery options. My toes are now abnormally large and the lump has returned. He is proposing the amputation of the second toe, removing the lump of bone and reconstructing my foot to a more normal size.
Obviously this would be a big step for me. Has any one advice or comment on this proposed procedure?
It is a major relief to find this website and humbling to discover that so many people have this disease worse than me. I can get shoes to fit and ibuprofen manages the pain, so unless I am wearing open toe sandals, the only outward appearance is a slight limp. I still manage to play a bit of vets soccer, so I should be grateful, I guess. Thank you for all of you involved in maintaining this site, you never know I might even make it to the conference!
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