I was asked on a Hip Replacement support group to post my ‘story’ today as I posted a picture of me with my leg length difference and they wanted to see if my story was like theirs. I wrote it out in full and got thinking that I honestly forgot most of what went on until I sat to write it out. I decided I’d like to repeat my story here in an open way in case it can help anyone else going through similar issues…so here goes.
I have rheumatoid arthritis triggered we think by measles jab when I was 16 months – first joints affected were neck and knees but I don’t remember any of that time or the 6 months it took my parents to get a diagnosis.
I ended up under a Juvenile Chronic Arthritis specialists in the Canadian Red Cross Memorial Hospital in Taplow in Buckinghamshire, Dr Barbara Ansel, as local Drs near Liverpool wiped their hands of me when parents couldn’t get a diagnosis. I don;t think I realised how lucky I was to be treated by her and her team. I managed to live a more or less normal life just with 6 monthly visits to Drs, aspirin moving to Naproxen for treatment when I had a ‘flare’ which was 2 to 3 times a year and a long stay and intensive physio in hospital 200 miles from home at 7. I think it was 9 weeks and it was both huge fun and really hard as I was away from my family for most of that time.
I never had full rotation of my right leg – I remember being told to cross my legs when sat on the floor at school but it just didn’t bend that way so right leg always stuck out straight. From I think around 11 I used to have my right leg give way on me regularly with a moment of pain but nothing really debilitating. My neck was the joint which caused me most issues and I used to wear a collar when it was bad. Then from early 20s my left elbow became the most troublesome joint and I lost full use of it and couldn’t straighten it anymore. It was always a pain with one leg not rotating and one arm not straightening as it made it really hard to reach my right foot properly.!!!
I met my husband at Uni and married and had kids quickly as I was always worried about when I might get bad with the arthritis – it was a case o let’s go for it now while I am ok – both kids were c-sections which was a relief as I was dreading child birth with an immobile hip – then with running round after kids my hip got a lot more painful and I had crutches to help but with the elbow issue – left elbow – right hip – it made it difficult. I remember a trip to Disneyland Paris with the kids where we hired a wheelchair otherwise I could not have kept going for 3 days solid. If I had an active day I needed a few days rest to compensate.
The Rheumatologist I was put under when I moved to Northampton was lovely and suggested hip replacement and supported me in approaching the surgeon when I was aged 35 and at 36 in 2007 I had my surgery after 6 months on the waiting list. Those 6 months were actually the most pain free I had been in ages but I had to think abotout how I was on my worst days and go ahead with the operation and I am so glad I did.
There was never any mention of leg length discrepancy but when I was recovering from the operation I noticed my right knee stuck out further then my left. They also broke my femur during the operation as I was too brittle – I guess it’s from having active arthritis so young when I was growing it just never grew properly – so I couldn;t weight bare for 3 months after the operation – more crutches which was a real pain. At my 6 week check, I challenged the surgeon and he showed me the xrays and said the hip was in the correct place but my pelvis internally was twisted and physio would fix it.
3 free visits to physio on NHS and they signed me off with exercises that did nothing. My parents helped me out with money and for 2 years I saw an excellent physio and acupuncturist and he tried everything but after the treatment, I’d feel straight and then on the car drive home it’s like my muscles went back to where they were comfy. In the end the guy admitted defeat and I just wanted to get on with my life and not keep obsessing about the leg length difference.
I sang in choirs and found standing still for a concert really hard so I’d put a book under my left foot which made it much easier. In the end the NHS gave me an insert for my left shoe and they built up some sandals for me. The surgeon had said that was a bad idea as it means my back is weak where my spine meets my back due to the twist but enough was enough.
Now in the last few years I don’t really have an arthritis flares and I hardly need the Naproxen which I’d been on for 30 odd years. I now drink aloe vera every day, take a bunch of supplements, from Forever Living and more recently moved to a keto diet which means I don’t eat foods likely to cause inflammation and 14 years post op I am just hoping to prolong the lifetime of my hip and reduce the chances of other joints being a problem. I walk 4 miles at least every day, I have an elliptical standing bike, I do pilates and I eat home cooked meals – I work for myself and make sure I have a good work life balance and I’ve just given up hope of ever being straight. I now weigh 3.5 stone less than when I had the operation though – Keto really suits me !
Once at a networking meeting a guy who did bone/muscle type manipulations saw me as a challenge and was determined to help me – in the meeting he made me move in a way that made my hip crack really loudly and I couldn’t weight bare without pain for a couple of days – that scared the bejeesus our of me and made no difference so I am just living with my twisted body and enjoying each day and sod it !!!
So that’s my story, or how I remember it now at 50.