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Adult Hips Story Centre

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Dr Sophie West MRCS MBBS is an Orthopaedic Surgeon who was diagnosed with bilateral hip dysplasia at 27, at the start of her surgical training. Co-Author of “A Guide for Adults with Hip Dysplasia” Sophie has the unique perspective of both Doctor and Patient having had two major hip surgeries.  We are very pleased that Sophie is a Trustee of STEPS.

Sophie worked as a ‘Gamesmaker’ at the London 2012 Olympics as a ‘field of play doctor’ which involved providing medical cover for the athletes and their support teams for all the equestrian events in Greenwich Park. Sophie said of her London 2012 experience: “It had taken 6 operative procedures, lots of emotional and physical highs and lows, all alongside training to be an Orthopaedic Surgeon for me to get there. None of which would have been possible without the support of my friends and family, but also the support I gained from an online forum, which is how I met Annick”.
This is Sophie’s Story:

Both Annick and my stories have been individually featured in the STEPS magazine before. However this year our stories became just that, ‘our story!’

It seems amazing to think back to July 2005 when London got the Olympics for 2012. There is no way I could have predicted the course my life would take in those 7 years, to end up in the situation I found myself in, in October 2012. For one I had not even qualified as a Doctor and secondly I had no idea that I had a previously undiagnosed condition that was going to alter my life forever – Developmental Dysplasia of the Hips.

Fast forward to October 2012 and I was meeting a group of wonderful and inspiring women for coffee at the Olympic Park at Stratford, all of whom had DDH and were at some stage of their hip journeys.

Working as a ‘gamesmaker’ at the Olympics in the privileged position of ‘field of play doctor’ which involved providing medical cover for the athletes and their support teams for all the equestrian events in Greenwich Park was a huge professional and personal achievement. It had taken 6 operative procedures, lots of emotional and physical highs and lows all alongside training to be an Orthopaedic Surgeon for me to get there. None of which would have been possible without the support of my friends and family, but also the support I gained from an online forum, which is how I met Annick Hollins.

Annick is an inspirational woman, to me. Anyone who can run a marathon (multiple times) is, however she managed to complete this feat without knowing she had DDH. She then walked a marathon, which many fit and healthy people would struggle with, only a matter of months after having major reconstructive surgery on her pelvis for DDH – and in doing so inspiring many other women with the condition around the globe. It was for these reasons I nominated her to carry the Olympic flame and she was lucky enough to get selected. Watching her carry the torch in July was incredible and much more emotional than I had anticipated, and is a testament to everyone out there that whatever obstacles life throws at you, you can either let them get to you or turn it into something positive.

There has been lots of talk about the ‘Olympic Legacy’and how important it is that the spirit and determination that was seen in the summer of 2012 continues. I think this photo represents this spirit and that strong, inspirational and brave women is just a small part of this legacy.

Annick Hollins

Annick was diagnosed with Hip Dysplasia aged 46.  Prior to this diagnosis, in her own words, she had “lived a text book life” with three text book pregnancies, and three text book natural births.  As a child, Annick had been a ballet and gymnastic fanatic, and then took up running in her late thirties.  In April 2008 she ran her 6th consecutive London Marathon in a personal best of 4:24.  In 2009, a consultant stunned her with the news “I know exactly what your problem is.  You have severe hip dysplasia and are looking at major surgery on both hips”.  Following surgery and recovery, she walked a marathon only a matter of months after having major reconstructive surgery on her pelvis for DDH.  In 2012, having been nominated by Dr Sophie West, Annick was selected to carry the Olympic Torch in the London 2012 Torch Relay.

Annick said “Discovering that I was Hip as well as being Dysplastic has been life changing, and whilst I wouldn’t choose to have it, it has introduced me to people that I would never have got to know, taught me things that I would never have learned about, and shown me that I am much stronger than I ever thought I was.”
‘My journey into the world of Hip Dysplasia’

Hip Dysplasia – isn’t that something that dogs get? Well, it is according to the internet!

My story so far!
I was diagnosed with Hip Dysplasia on 31st January 2009. I was 46 years old. Prior to this diagnosis, I had lived a text book life. I had 3 text book pregnancies, and three text book natural births. I had had nothing to indicate what was to come. I had, as a child, been a ballet and gymnastic fanatic, and then took up running in my late thirties.

In April of 2008 I ran my 6th consecutive London Marathon and did a personal best of 4:24. It couldn’t have gone better – a surprise as I had been ill with flu for four of the critical weeks of training, so to say I was chuffed is an understatement. It also meant I was on course for my ideal target time of a 4 hour marathon which I was hoping to achieve over the following two years.

I rested for a couple of weeks following the marathon and then started some gentle runs out cross country. I had, a couple of weeks before the marathon, tweaked what I thought was a hip flexor but it hadn’t bothered me during the marathon so I thought little of it. This started to be more noticeable when out on my runs and then when I got to about 4 miles I would also get a burning sensation in the side of my hip. I saw my sports therapist, Grant, and we started doing some rehab exercises. The burning went, but the niggle stayed, and then I began to get night time discomfort from it – a nagging spasm in the groin, which would go down my inner thigh, coming out on the outer side of my thigh into my knee and then down into my ankle. Also if I cycled, when battling hard to go up hill, I would get an almost numbing feeling down my leg and then a pain that I can only describe as being like chewing on foil with fillings. After 8 weeks of rehab there was some improvement, but it hadn’t gone, so Grant suggested I get an MRI to see what was going on.

I was referred to a consultant at Clare Park Hospital, Crondall, who said that my MRI showed that I had fluid on the psoas tendon and that a cortisone injection would do the trick. Phew! Nothing much to worry about then! A week later I went and had the injection under my first ever general anaesthetic. I was told to take it easy for three weeks and to then gradually go out running and see how it was. All was good. 6 weeks after the injection I ran as part of a team in the Jersey Marathon Relay. I took the first leg which was 4 miles and had a blast. I felt so good that I ran back with one of the other team members back to the hotel – another 4 miles. I felt great. My consultant was thrilled and said that he would look out for me on the telly the following April in the Marathon. (I had managed to secure one of the ballot places for the first time ever!) . I went out training with the girls on the Tuesday, and within the first mile I could feel my groin complaining. I happened to say to our coach that I had a funny feeling that this was going to go a lot deeper than anyone had anticipated. Little did I know just how deep!

Two more cortisone injections later and we were into January of 2009. I hadn’t run since Jersey and was starting to get really fed up. I went to see my consultant who said that they would have to release the psoas tendon. I asked about keyhole surgery and he referred me onto a consultant at St Anthony’s Hospital in Cheam. The first thing this consultant asked was whether I had had x-rays. I hadn’t (that still astounds me now, that my original consultant, supposedly a ‘hip guru’, hadn’t x-rayed me) so he sent me to get some.

Half an hour later he called me back in with the words “I know exactly what your problem is. You have severe hip dysplasia and are looking at MAJOR surgery on both hips!” I was stunned. I had gone there, in my mind, to book up some quite straightforward little op, and that I would be out running within 3 months. And now I was looking at major surgery which would take 2/3 years to properly recover from. I sat in the car for half an hour and just cried. Part of me was so angry that my original consultant hadn’t picked up on this, and to add to that, if I hadn’t asked about keyhole surgery, I would have had the operation that he’d suggested by this point, been on crutches and it would have all been a total waste of time. I had already wasted 8 months faffing around with cortisone injections for absolutely no reason!

To cut a long story short (well, as short as I can make it!), I had an MR Arthrogram and CT Scan and was referred on to Johan Witt of the London Clinic who I saw for the first time on March 9th 2009. He confirmed the diagnosis and said that he felt that even though I was 46 I would still be a suitable candidate for a Periacetabular Osteotomy. He would do an Arthroscopy on my left hip first to see the extent of the damage to the acetabulum, and would then do the PAO 4 weeks later. He would then wait a year before doing the right hip. I was booked for the Arthroscopy for April 20th, and the LPAO for May 20th.

I found it hard to understand how I could have gone all my life with this and never had any problems till now. Mr Witt’s view was that having done ballet since I was 2, gymnastics since I was 9, and always keeping myself fit, light weight (even during pregnancy), that basically my muscles had ‘held me together’!

The Arthroscopy went fine. Mr Witt said that the damage was extensive, but they had tidied it up and that he still felt I would make a good candidate. So I went into hospital on May 20th and had my LPAO. The operation went fine and my recovery was excellent, apart from hopping on my operated leg as I walked in through the front door of home, 8 days post-op and spending the evening in Guildford A & E! Luckily for me I hadn’t done any damage – only dented my pride, and found out what it feels like to pass out! I had felt so good in hospital that I had raised the idea of having my RPAO done sooner rather than later. Mr Witt agreed that if my left leg was up to it, then, yes, he would do it.

On October 25th (my 47th birthday) my husband and I walked The Great South Run. It’s 10 miles and we did it in 2 hours and 24minutes, 6 minutes faster than our goal of 2 hours and 30 minutes. We were thrilled. I was 5 months and 5 days post-op.

On October 28th, five months and 8 days post-op from my LPAO, I went in for my RPAO. The operation went well, but I woke with a very odd feeling. I couldn’t put my finger on it, but something just didn’t feel right. My hip from day one was clunking around a lot, but everyone just said that this was fine and not to worry. I was discharged after 4 days and went home (no acrobatics this time!) The next two weeks were was agony. My hip clunking was audible, and it hurt like hell. I felt like I was sitting on a cricket ball and was just in constant discomfort. Again, to cut a long story short, this was finally diagnosed three and a half months later as a stress fracture to the Inferior Pubic Ramus! No wonder I had been in so much pain!!!

I ditched my crutches on New Year’s Eve, 8 weeks post-op, and then after the snow had gone, my husband, Phil, and I started training to walk the London Marathon. I had deferred my place from 2009 and he had managed to get a Golden Bond place with STEPS. This had been my long-term plan from when I was in for my LPAO – get the other hip done and then I would have to walk, and in doing so would raise money for STEPS – it all sort of made sense. So we were off – training – walking miles and miles. It didn’t take me long to realise just how far 26.2 miles was to walk, and how long it was going to take. Walking a marathon is a damned sight harder than running one! I couldn’t thank Phil enough for doing this with me, as I realised that I would never have been able to do it on my own. Both my hips were fine until after our 21 mile training walk when I started to notice that I was waking up during the night when turning over with a pain deep in my left butt. It didn’t stop me doing anything though so I kept going.

On April 21st my husband and I completed the London Marathon in 7 hours and 5 minutes. We were delighted and were also absolutely stunned by peoples’ generosity in sponsoring us, raising £2,500 for STEPS. We even saw one of the other STEPS runners en route – Peter Morgan – which was brilliant. He had worked out roughly where we would be and had been looking out for us as we went from 13 miles and he was at 22. That was a wonderful moment for me. The atmosphere was just unbelievable and I can’t wait to do it again (running that is, not walking!).

Post marathon I felt great but decided due to this pain that I was getting in my left hip that I wouldn’t do any exercise until I saw Mr Witt in May. He assessed me and said that it was probably just an area of inflammation which he could cortisone whilst I was under anaesthetic having my screws removed in June. AND I COULD GO BACK TO RUNNING! I was thrilled.

I went out the next night with the running club girls and did some very gentle trotting – I seem to only have one gear at the moment, and that is slow. I also only have one stride length!

On the Thursday afternoon, whilst taking our youngest to get a horse riding hat, I slipped on some wet gravel and my left foot slid about 3 inches in front of me and I jarred my left hip. I thought nothing of it and carried on. The following day, while out shopping, I started to get pain, real pain, so painful that I couldn’t weight bear. So I put myself back on crutches and sent out a few messages to various and sundry people. The replies I got back were all pretty much saying the same – muscular, rest, ice, ibuprofen etc. Two weeks later I was still on crutches and heading up to town for my screw removal. Mr Witt had a good look around under x-ray and couldn’t see anything, so he didn’t cortisone. Instead he sent me for an MRI, which didn’t show much either. So no-one knew what the problem was. That weekend I turned in to Mrs Tourette’s! The pain was unbearable, when it hit I would exhale sharply and foul language would emit from my mouth. Words I didn’t even know I knew! It would hold me in a spasm for about 20 seconds and then gradually fade. It was absolutely excruciating.

I contacted Mr Witt on the Wednesday to update him. He had the MRI re-reviewed by the radiographers and the report came back that I had a stress fracture to the pelvis! No wonder I was not able to weight bear! That then also brought into consideration my bone density – so it was back up to London to have a bone density scan and a CT Scan. The bone density was fine, but the 3D CT Scan picture showed a very clear fracture on the Ischium, where one of the bone cuts is. It is also where the hamstring joins, so if my hamstring was tight it would be straining on that area of bone causing inflammation and pain, which when really put to the test when I slipped, failed miserably and broke! Hey ho! Crutches for another few weeks!

My more recent fracture has made me re-evaluate going back to running. Not that I won’t, just that I won’t do it till my legs and core stability are stronger and better prepared. Just because I can walk, doesn’t mean that I can run!
I have learnt through this journey that nothing is predictable. My journey is not at an end, there will be more things thrown at me that I will have to deal with as and when, but what I do know is that Hip Dysplasia is fixable, not terminal, and that, to me, is the most important thing that I keep in mind and tell myself when I get down about being “Hip Dysplastic”. I have been incredibly lucky that I have gone through life without any debilitating pain. (Although I do look back and certain things come to mind that I now realise probably was the dysplasia, but they were minor). I have also been incredibly lucky that actually once diagnosed my treatment happened quickly and my recovery was relatively easy. I am also lucky in that fact that this has happened now, as technology has enabled me to find a new family of hip dysplastic people via the internet, without which my journey would have been very scary. They were there at any time of night or day, giving answers to stupid questions, supporting and caring. Hip Women Yahoo Group rocks! As does the Hip Chicks site!

As for my poor family and what they have had to put up with these past two years I cannot thank them enough for doing all that they have done. Their love and support has meant the world.

Discovering that I was Hip as well as being Dysplastic has been life changing, and whilst I wouldn’t choose to have it, it has introduced me to people that I would never have got to know, taught me things that I would never have learned about, and shown me that I am much stronger than I ever thought I was.

I would like to thank my family, Mr Witt and Barbara of the London Clinic, the nurses on 6th Floor London Clinic, and all my Hip Sisters for being a part of my journey. Also a special mention to Julie Harland who walked the London Marathon with us, and to Julia Tucker, my stand-in chauffeur and Tesco’s trolley pusher!
This is what Annick wrote about her and Sophie West – “Our Story”

Sophie and I got to know each other through the Yahoo Hip Women Group – a wonderful community of support for those at various stages of the Hip Dysplasia journey. Sophie became our ‘on-line’ doctor. When Sophie and I first met up, we were both on crutches and quite a liability – we had to laugh!

When Sophie said that she would like to nominate me to carry the Olympic Torch I was really thrilled, but never, ever dreamt that I would get selected. When the announcement came at the beginning of December 2011 that I had been selected I was blown away. I walked about with a grin on my face for weeks. Still do!

Sophie had nominated me through Coca-Cola, who were absolutely extraordinary in their generosity. They set up a Facebook page so that their ‘Flames’ could get to know each other on-line, which has led to life-long friendships, as well as us organizing a Ball to celebrate the wonderful year we have had. We each received a photo of our day and a certificate to commemorate our run. And most amazingly they bought each of us our torch – when they announced that the Facebook page went mental!

I ran in Christchurch, Dorset on Saturday, July 14th at 9.32 a.m. Running with the torch was incredibly emotional – the streets were lined with hundreds of people desperate to catch a glimpse of the torch. When I alighted from the bus I was literally mobbed by people wanting their photo taken with me and the torch – it was completely mind-blowing. After my torch had been lit, I couldn’t help staring up at the flame in absolute awe. I was holding, at that very moment, THE Olympic Flame, and I was holding it because of having been diagnosed with wonky hips, as I call them. I was holding the flame because I had wanted to prove to myself, and others, that anything is possible – you just have to be determined.

Meeting up with Sophie and the ladies from the HipWomen group was humbling and inspiring. I have always considered myself as one of the lucky ones as I had got to 46 years of age before finding out that I had this condition. I had run 7 marathons; I had led a full and active life without pain; and I had given birth naturally to three healthy children. Here I was meeting face to face with ladies who have suffered pain for the majority of their lives, and sadly some who have had operations and are still in pain.

Sophie, co-author of The Adult Guide to Hip Dysplasia, has been a huge bonus to the world of Hip Dysplasia. Not only did she taken on writing a book with Denise Sutherland, in Australia, having undergone two PAO’s herself, but has become involved with STEPS Charity. The thing that I think is key for Hip Dysplasia is the fact that being a doctor and a patient, Sophie has sat on both sides of the fence, and the knowledge she has is invaluable to both consultants and patients.

I have started back to running and my goal for next year is to run a marathon for my 50th year. On top of that my husband and I are planning a motorbike trip to Machu Picchu in July. I haven’t ridden a bike for about 18 years!

Out of all of this I have come up with my own personal mottos that I live by:

“INSPIRATION FROM OTHERS, DETERMINATION FROM WITHIN”

And

“TO RUN IS NOT A GIVEN, AS MERELY TO WALK IS A GIFT”

I hope that they are of help to others.

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