Perthes Disease : You don’t realise how much pain you were in, until that pain has gone
Overnight a 7 year old Wendy developed a limp and found herself having to cope with a restrictive disease that quickly affected her quality of life. It’s with an infectious smile and positivity that Wendy recalls her journey to us; an inspirational story that we hope will help others.
Wendy was diagnosed with Perthes disease of the right hip (Legg-Calve-Perthes disease, or Calve Perthes disease, or avascular necrosis) the ball of the ball and socket joint of the hip was affected and blood flow couldn’t get to it. As a result her bone softened and broke down. Over time the blood vessels re-grew, and the blood supply returned to the ‘dead’ bone tissue, new tissue then formed and the femoral head remodelled itself. The day Wendy was diagnosed she didn’t come out of the hospital, but was put in traction for weeks! She adjusted to her enforced stay in hospital by making friends, having competitions with each other, playing dare and not missing school too much! No one knew why this was happening to her; only that it was more common in males than females. After time in traction, Wendy progressed to having Callipers fitted, with the aim to keep the femoral head positioned in the hip socket by keeping the leg slightly abducted; this was followed by time using crutches and then an operation where a metal plate was inserted into her hip.
That’s a lot for anyone to endure, least of all for a 7 year old!!
In her early teens Wendy had the plate removed. Her ball and socket joint wasn’t round, but kind of flat on the top giving limited movement, preventing her from doing what we all can take for granted, like crossing her legs. She had a pronounced limp, as one leg was shorter than the other, Wendy experienced pain, pain she describes as constant but variant in levels, from a “headache” pain to “migraine” pain. But it didn’t prevent her making the most of her life; she eventually married and had a daughter, but as time went on the pain got worse, preventing her doing what she wanted to do with her family. Life was painful, physically, mentally and emotionally. Something had to change.
Guy Selman, a back consultant at the Spire Hospital informed Wendy the backache she was experiencing was a result of the hip, and the way she was walking, he suggested trying Pilates, 1-2-1 sessions rather than a larger class so that her individual needs could be met. In 2009 Wendy started 1-2-1 sessions with Charlotte, finding that her body was tense and stiff with very little movement, highlighting just how bad things had got, and making it an emotional time. Pilates really helped with her flexibility and eased the problem of her back locking after having a spinal block. Eventually Wendy was able to attend remedial group classes with Charlotte.
At the same time as attending the group classes Wendy also had acupuncture with Peter Butcher and Physiotherapy with Peter Butcher and Rebecca Lunn here at The Body Junction. Wendy’s experience with Acupuncture was amazing; she felt the benefits very quickly and is a firm advocate as the treatments really helped to manage her pain.
Physiotherapy really helped too, but Wendy’s keen to stress that any exercise given by a physiotherapist is then your responsibility to maintain on a regular basis. As she states, we are dependable on ourselves to help aid our recovery, do the homework set!!
Still finding the disease debilitating Wendy went to see Mr Hugh Apthorp at The Spire who she describes as “A very clever man!” Convinced that he would say that she was too young to have any further treatment at the Hospital, he in fact recommended her to have a Hip Operation! Obviously this was a bit of a shock and a hugely stressful decision that affected not only Wendy but her whole family.
In June 2014 Wendy underwent the Acetabular Reconstruction Operation. A hip operation made more complicated because the disease meant that the surgical team couldn’t simply take out the hip and put in a new one. So a hip alignment was done too. The duration of a normal hip operation is 40mins; Wendy’s operation lasted almost 4 hours!! Mr Apthorp warned Wendy to prepare for post operation. Wendy laughed when recalling what Mr Apthorp warned. The operation would leave her feeling like a Shire Horse had kicked her, decreasing over time to a Racing Horse, finally ending with a Shetland Pony. “He wasn’t kidding!”
Wendy found sleeping difficult post op and had to sleep on her back. She had to learn to inject herself to prevent blood clotting for weeks which was initially a challenge, and not something she had considered. Then there were tasks like showering which proved very problematic, resulting in a lack of dignity which affected Wendy greatly. But with the help of her very supportive family, resting and time, she started on the road to recovery. The recuperation time quoted was that in a year Wendy would feel how she did before the operation, after two years she would be as good as she would get. It was a long road she had to travel.
After the operation Wendy had to stop Pilates, and only attended Physio at The Spire. She eventually resumed Physiotherapy with Peter, and two years on she’s receiving treatment every three weeks, which is helping enormously. When you focus on realigning a certain part of your body it can often result in issues elsewhere, so Physio helps with preventing problems building up.
“It’s no longer a bad leg – It’s an operated leg!” – Peter Butcher
In due course Wendy was thrilled to be able to return to her Pilates Class once a week, finding that what she can do was far different, she didn’t have to rely on blocks under her feet or need to use other equipment that was previously required to assist her. Some of Wendy’s muscles weren’t used properly and therefore weak, so the goal was on building muscle strength. Wendy’s legs are now the same length – enabling Wendy to wear normal shoes!
When Wendy looks back she says “It was absolutely the right decision to have the operation. It set me back a bit, but I am now where I wanted to be. My life has changed, my life is completely different. Something happens every day that reminds me of how amazing it is. I’m no longer in pain, have no limp and am learning to do things without instinctively protecting myself. I owe thanks to the professional team at The Body Junction and of course my surgeon.They worked really well together. They kept the lines of communication open between each other, the hospital and me. I had a real sense that my wellbeing was important to them all and that together, their knowledge, skills and support really helped me, physically & emotionally”
Great things are never done by one person. They’re done by a team of people ~ Steve Jobs