Physio, bracing and the never ending saga of the hips
I continued with my local physio briefly, but we have naturally reached the end of the road. Although I know she is available any time I need to contact her for advice.
I was yet again denied surgery for my hip -this time by a consultant in Beaumont. On arrival neither the locum nor the consultant had heard of Ehlers-Danlos syndrome, but of course, as always, ten minutes later (after I told them what it was), they were experts. Spouted off rubbish about how the surgeries to help preserve my hip may make me worse, due to my EDS, in that more than likely/ in most cases the surgeries are unsuccessful. No stats, no real information. This contradicts what I know from other EDS/ hip dysplasia patients who are living their life to a much higher level of mobility (hip wise, at least) than they were before. While this is all anecdotal, clearly, at least I had anecdotes. These doctors had no information. There are indeed some issues with EDS patients having surgeries -for one, we take longer to heal. Major surgeries need to take certain criteria into consideration (for say, the likes of surgery for Chairi Malformation). These were not the issues they brought up however, in fact they just rambled.
On entering the orthopaedic clinic I first met with the locom who discussed my X-ray and noted how I didn't yet have arthritis. Those of you with similar conditions will know how consultants and doctors alike hate using the word "arthritis". They think it will send patients into uncontrollable hysterics, that we will demand action. Especially women. We will become so hysterical our vaginas will fall off and we will wither and die with the shock *clutches my pearls*. At my age, with untreated hip dysplasia, I would be extremely lucky to not have some arthritis. I'm often told I have "damage", indeed apparently I have more "damage" on the healthy hip rather than the dysplastic one. Either way it's a non issue -I have much more pressing issues that the natural occurrence of arthritis! Plus I am on painkillers and medications that may be used to treat arthritis anyway, so a sub diagnoses of such I pretty irrelevant.
So the consultant enters, babbles on about why I can't have the surgeries to save my hip -We would make you worse, they aren't good surgeries, your EDS, your EDS, your EDS... When they realised both their lack of knowledge of EDS and even recalling the names of the hip surgeries were showing, the consultant decided to play another hand. "You have arthritis so can't have surgery". Wow, what a game changer, after twenty minutes of trying to work one angle lets just go with this instead. My eyes darted to the locom as I spoke, "Oh really, it's just I've been told I don't have arthritis". "Yes, you have arthritis" the consultant repeated, proud as punch with his decision to whip out the A word as it suited him. This isn't my first surgery rodeo, so while I understand that yes, bad arthritis makes a joint unsuitable for surgery, that simply is not the case here. I have quite mild arthritis/ "damage" I gather from previous X-rays, and my healthy hip is greater effected than the hip that actually needs surgery. Certainly not enough to impede any needed surgery.