The Clicky Hip That The Doctor Missed
Once upon a time, there was a girl, and this girl lived in a land of infrequent and inconsistent health care. As the girl grew, she slipped through the gaps -Being told treatment was too late, there were other issues at play, she was "wonky" and they weren't qualified to help... Just beyond this place, in various reaches of the further land, many children with similar issues, and many adults too, were receiving regular health care. Surgeries, rehab facilities and specialists galore. They lived quite a different life because of this... It was only at the age of 30 that the girl finally realised the truth. The truth being: National healthcare was a lie; her circumstances had resulted from her address.
I have always had hip dysplasia. Always. Doctors may have thought I was a dumb child, so referred to it as being "wonky", or being "slanted". Many hear of it and comment "Oh yeah, clicky hip I think it used to be called?" and generally follow that up with how it's no big deal, loads of babies get it... etc., etc., and this can be the case. When found at birth or shortly after, a harness is usually fitted. Annoying for the parents and child, but extremely vital for the child's correct growth. The issue is that the hip, usually either in the womb or at some stage during the birth, comes loose of it's socket. Generally treatment begins straight away -with a harness, regular check ups and x-rays and possibly surgery starting around 2 years of age, sometimes before, depending on the patient. Some don't need any surgery or just one surgery, others need several surgeries, throughout their life spam. These surgeries are to help the hip be more stable, to save the hip from replacement for as long as possible. This can include strengthening the joint and deepening the socket so the hip will sit better in place. Now, without this treatment -as in my case (as the doctors refused to even look at me until I was older and walking funny/ limping)- the body creates
its own sort of new, shallow socket for the dislocated hip to sit in... sounds absolutely shit crazy to me, and I am amazed at how our bodies can adapt. Sometimes I read in doctor notes: "untreated and UN-DIAGNOSED hip dysplasia". I hate seeing that! I was untreated, yes, but certainly NOT un-diagnosed. I have always had hip dysplasia.
As I said, when older and walking, they started to take notice. Unfortunately, from what I gather, surgery works best when occurring by 2 years of age. This didn't happen. I had some very painful physio instead and continued with my life, being reassured that the pain was being made worse by added growing pains and that my hip, back and legs would feel better once I stopped growing. Once I was an adult, I would be in less pain, I would have better mobility... I remember mentioning this to a doctor when I eventually went as an adult (of course by now, disliking doctors and avoiding them as much as possible for years) and he just looked at me... feeling bad that I had been told this and I had mostly believed it.
It was only the start of pain and injury. The issue being (of course, through common sense when you actually think about, like I hadn't at the time) that when you are "wonky", you walk wonky, thus putting strain on all areas of the body. The new socket my own body had created obviously wasn't inline with the other hip, resulting in a (unnoticeable most of the time, I think) leg length discrepancy. Over time, this caused strain on the longer leg and I am now knock kneed. My feet have also taken a beaten, as years of placing pressure on them incorrectly have made them extremely flat and achy. I since have received (only couple years ago) shoe insoles to aid both the flat feet and lift the shorter leg. I had these as a child, but as I said -was not aware that I would still have issues as an adult. Unfortunately, these insoles are too little too late in a lot of respects.
Twice in my adult life I have been sent to physio by concerned doctors who didn't know what else to do, and twice I have been told (after strength and balance tests) that not only is physio not a treatment for hip dyplasia, but I simply do not have the strength for it. I have no balance, core strength or centre of gravity. They would be afraid to ask me to do any of the exercises... Both said that of course, if I ever get surgery that I would need physio afterwards. But surgery is the only thing that can help. First sign on a fragmented health system -One specialist not realising how their colleagues work within another field. Why suggest surgery to someone, unless you don't realise that it isn't generally done for adults in Ireland. Or at least, in this part of Ireland... I kind of wish I had turned around and said something at the time. It was an unintentional sting on the physiotherapists' part, but don't dangle the idea of surgery in front of me, in my grasp, like it's a probable possibility.
By the time I was a teenager, my mobility was declining and I couldn't run very well. Fell often. Began noticing quite a lot of dizziness and sometimes actual fainting (which I know now is caused by low BP, dysautonomia). Gradually, in my early adulthood, I couldn't run anymore at all. I missed running. I still really do. I didn't think it could be worse, but as the last few years have shown, now my walking is slowing. My body becomes stiff, my muscles spasm and become tight, my limbs can be numb. Sometimes with pain, sometimes not, I have to pace myself, can't walk for long or when I can, I pay for it in pain and restriction of movement later... I pine for the days in which I was only missing the ability to run. There are many days now that I wish I could walk.
...When I completed my cancer treatment, I was of course delighted. Not because of the obvious, but because I could get back to being on the orthopedic waiting list, in the hope that I may finally make progress towards having the hip surgery that I have needed since birth. With everything happening during chemotherapy and radiotherapy, I had been taken off the list and so had to begin the process again. During treatment, in order to acquire a medical card, I had to change doctors. So it was off to my new doctor to request my referral back to the orthopedic waiting list. I barely knew this man but he was frank with me -He told me he had done a placement in orthopedics himself and was pretty certain that they would never give me surgery. I was taken aback. I knew that some people had went privately themselves to England (from talking on online groups), but I honestly thought they had just got sick of waiting... I thought I would eventually get at least one of the necessary surgeries to save the hip, if not a hip replacement (realistically this is what I actually need, but any surgery would prevent further damage).
I was a bit thrown back by this, naturally upset... he said they would give me pain injections but probably wouldn't do much else. It's not treated much in Ireland and "especially not this part of the country, Lourdes definitely won't do that". He wasn't trying to be cruel, he really felt bad for me, and in the long run I am glad of his honesty. I would still like to meet with the ortho and inquire about how much I need to save to go to England for surgery, and so I am currently now back on the list. Still no appointment date, it could be another couple of years before I hear anything.
Before anyone asks, yes there is a policy by the Irish government that the HSE must provide medical care to an Irish citizen somewhere within the EU, and pay for this, if the required medical treatment is not available in Ireland -However, I gather this is near impossible to obtain, like, you have to literally be dying. The way they look at me is sure, I could just use a wheelchair for days I can't walk. Not a great solution, especially when I hear of people in my situation having hip replacements at 30 and running marathons a year later. That's the story I hear a lot from English people on online forums. If it wasn't for knowing that I could possibly be somewhat, possibly even a lot-lot better, then I probably would just get a chair and let it be.
Now, of course there is a massive question on whether or not all my issues are from the hip/ birth defects, or have I developed a further disease or condition over the years. However, I still believe if I fix the hip it would be a massive change in how my body works. Maybe I'm wrong in this, but I'm prepared to put my money on it.
From chatting with my GP I was reminded of a previous occasion -when I got my PICC line fitted in Dublin. My treatment was in Drogheda but the surgeon there broke his arm. When they asked me what hospital I was getting treated at, and I said Drogheda, the nurse went off and came back with a bag of goodies -bandages, syringes to flush out the line, etc. because they, quote: "won't have these quality of items, if at all, in Lourdes". I felt the nurses back at home would feel a bit put down by this gesture but they were honestly delighted to get this bag of treats... It was a very bizarre thing to witness. I really felt for them. As hard as it might be knowing that I get less health care because of where I live, they are less able to do the work they want to do than their colleagues in other hospitals. Can't be easy working in conditions like that.
But this time, with my new GP, was the first time I had really noticed a doctor commenting on the fragmented state of Irish healthcare. Obviously, England is a completely different story, but I did also notice from online groups that some people with the same issues as me were having a completely different experience where they lived in Ireland, a better story had unfolded for them. But this was the first time that I had really thought about it. The accident of my address, in a relatively tiny country, had influenced how healthy I am at 30 years of age and ultimately my quality of life.
Like a Fish Outa Water
Muscle spasms have always been troublesome. In my adulthood particularly, they became the norm for me. The worst part is when the spasms cause the muscle to lock -tighten and tighten. The first couple of times this happened to my calf was scary, I thought my leg was going to burst.
Sleeping Kitty wakes up From Martyrdom
With pain comes fatigue. They go hand-in-hand. I may know sweet f-all about my own conditions, about medicine in general, but I do know that. So I never overly questioned it or discussed it much with my GP's or the neurologist. It goes without saying, I guess I thought. During bad days I can be exhausted, have to nap, can't do much at all. This has increased over time as the pain has increased, and the long-term effects of chemotherapy haven't helped I'm sure -fatigue being massively debilitating to some cancer survivors for years after finishing treatment.