Counting Down To Broken Bones

I've never broken a bone in my life, so it's such a crazy thought that, in under a week’s time, I'm going to have a broken pelvis in three places and a broken femur. This is without doubt the scariest thing I've ever had to go through.  At the same time, being free of this relentless hip pain will be the best gift I could ever wish for! It really is true that some things just have to get worse before they get better. This surgery is probably the only time you can say to someone, "Break a leg," in a figurative sense - and it will have a literal meaning too.

Since receiving the date for surgery, the days have been slowly dragging along, while the weeks have been speeding by! My condition is definitely deteriorating day by day and I’m slightly concerned that my right hip has now become arthritic - I sometimes seriously feel like a 24-year old stuck in the body of an 80-year-old! It’s scary to think what I would be going through if I still hadn’t been diagnosed with any of this.

The results of the EMG test came through last week, and I can now add ‘carpal tunnel syndrome’ to my long list of issues. Not the best timing when I’m going to be on crutches for a while; but at least I now know what’s up with my hands and wrists…

Lately I've been having a real hard time getting any decent sleep & I’m waking up several times each night; as well as having some really peculiar dreams and unwelcome nightmares! One dream in particular comes to mind regularly in which I was flying in the cockpit of a plane and Mr Witt (UCLH consultant) was the pilot: we needed to make an emergency landing and he ‘aced’ it!  Others are much more random and frightening than that; involving train crashes, Nigel Farage and science museums… I have decided to put it all down to pre-op anxiety!

My pre-operative assessment was last Monday. Visiting a different hospital department in that is unfamiliar to me, brought reality to the fore. That distinct hospital smell; more nurses wandering around and hospital beds strewn in random places along corridors... I had my blood pressure and blood taken again and was asked a few questions about my overall health.

I was also asked to change in to a gown for an ECG (a test that assesses the function of the heart). When the nurse came back into the room she told me to pull the top half down to expose my chest, so she could connect the electrodes near my heart. I’m not sure why she left the room for me to change in the first place! It’s fair to say that lying there with my chest exposed to someone I’d only just met caused my dignity to come crashing down in one fell swoop, and the realisation that I’m probably not going to get it back for quite a while sank in as I quietly swallowed my pride. Thankfully I was deemed fit for surgery.

I was told about the blood-thinning injections I’ll have to have in my stomach that apparently cause lots of bruising, and the stockings I’ll have to wear for about 6 weeks, but in the scheme of things that’s nothing to worry about. I also realised the other day that I’m not going to be able to pick up George (my lovely little cat) for a while and I’m pretty sad about that! I’m not looking forward to being away from him for a week or so either, but I know his healing purrs will be waiting for me when I get back from hospital.

  

Typically I'm a very last minute Christmas shopper, but this year I felt I’ve had to be a lot more organised as I’m still going to be very dependent on people when the 25th comes around. It feels quite odd to be all wrapped and prepared in November, but I’m sure there are plenty of things I’ve forgotten about!

When all of this hip ‘stuff’ is over, it's my dream to get back in the saddle and just gallop for miles on some majestic beach - the wind in my hair, without a care in the world. In a realistic world, it will also be amazing just to be able to sit comfortably in a restaurant, a cinema, or anywhere else for that matter! I hope to write some updates of my time in hospital next week, but as I’ll be heavily ‘out of it’ for most of my stay, I’m not sure how that will go down just yet… 

See you on the other side! 

It's A Date!

After weeks spent checking the postbox with a pounding heart, I finally have a date. Four weeks today, on Monday 30th November I am set to have my first lot of hip operations (right Triple Pelvic Osteotomy & right Femoral Osteotomy).

I am absolutely terrified, yet truly excited. I'm trying to keep myself busy (quite a task when you can't do much at all), but it's really hard not to think about it a lot. I can't imagine what it's going to be like having a 'new hip' and a 'new leg', having so many restrictions and things like having to lie on my back for so long and not being able to carry myself a cup of tea. I'm also one of those people who has to look away anytime I see anything slightly gory, so how I'm going to handle seeing any of my incisions, I do not know. Even thinking about it right now is making my stomach turn!

I spoke to somebody online who's also had both of these operations done together and she has no regrets, but she did tell me to expect a very long recovery. It will be around a year until I have full strength again (& then there's the left side to do). I've read many on the hip groups say that it's called being a 'patient' for a reason, because that's apparently one of the most difficult things to do during a recovery like this.

To prepare myself for surgery I'm going to do my best to eat a healthy balanced diet, drink lots of water to stay well hydrated, strengthen my legs, arms & core as much as I'm able to without causing anymore pain or injuries and try to keep a positive outlook. All of which are easier said than done! I recently bought myself a pull buoy (a float that sits in between your legs), which makes swimming a lot easier for me as I don't have to move my hips at all and can use just my arms to swim. It's a great solution as I love being in the water, although the bus journey to & from the swimming baths unfortunately leaves me very sore. I can not actually wait to be able to sit down in comfort!

I'm certainly going to make the most of taking hot baths, making my own cups of tea, baking on a whim and putting my own socks on before Nov 30th comes around. I also need to remind myself to buy some extra big knickers for post-op - apparently they're a must.

 

The Old Smoke, The New Laura

My appointment to see Mr Witt at the University College London Hospital crept up on me rather more quickly than I had anticipated. I found myself really dreading the trip, because as I've mentioned, travelling and I don't mix well. Mr Witt has such a great reputation with hip preservation surgery (particularly PAO's) amongst the UK 'hippies', so hearing his opinion was crucial for me in going forward with the planned Triple Pelvic Osteotomy & Femoral Osteotomy at my local hospital in Birmingham under Mr Politis. 

I was expecting to have to wait for a reasonable amount of time - don't get me wrong - but I really didn't think they would make me wait for nearly 3 hours. My poor hips are not built for this kind of thing, man! After the first long, sore hour, I heard my name being called for the clinic waiting area. Mr Witt's door was in view, but it remained closed. I turned around to see another doctor, someone I hadn't gone all of this way to see - and frustration flooded through me. I explained to him that I was told if I waited until October, I could see Mr Witt; if I didn't want to wait I'd have see somebody else. I'd opted to wait until October, as his personal opinion was really important for me to hear. 

The ladies at the reception desk were (thankfully) happy to help me out (I heard other people after me having the same problem and they were told they weren't able to see Mr Witt, so I felt rather lucky on that front). I let them know about the sitting situation and they were really positive, promising that I would be the next to be seen. A further hour and a half, and a few other patients later, I was called in by Mr Witt…

I'd heard so much about him and had seen a video of him explaining the PAO procedure; it felt comparable to meeting someone I already knew well combined with meeting a celebrity. His presence was very calming and, like my surgeon Mr Politis, he seemed really composed and placid. Perhaps these are the typical characteristics required when you cut up people's bone up for a living!

Mr Witt checked out my scans, asked a few questions and examined me. I always feel like a bouncing ball of frustrated energy when attending hospital appointments; akin to a pressure cooker ready to explode - with all the information about all of the pain I'm feeling; but Mr Witt's energy was somewhat a soothing experience. (That's until he tried to internally rotate my legs, which caused me to jerk and shriek in pain!)

Thankfully, his opinion confirmed that I need both pelvic and femoral alterations (on both sides), which came with huge relief.  (A 'huge weight off my shoulders' sort-of relief.) I now feel like I can move forward with the confidence that I'm doing the right thing - and that is certainly a great feeling. 

I received this write up of my appointment a few days later -

I am also really proud to write that I have managed to quit smoking over the past few weeks! Something I really didn't think I would be writing. It's inevitably been very tough and I don't think I could have done it without Mr Politis threatening to postpone my surgery date if I couldn't give up on time - I definitely was not going to let that happen! This surgery is so huge and significant; I feel it's so important to do whatever is in my power to help it go as smoothly as possible. 

It's not very common knowledge, but it's not just the smoking part that can interfere with healing. Nicotine is a vasoconstrictor (narrows the blood vessels) and is proven to play a big part in slowing down the recovery process. It can even cause the cells to die off, meaning I would end up needing a bone graft - that was enough information to help me kick my bad habit!

So, with my newfound super-strong sense of smell - and a second opinion in agreement to the first, I'm feeling pretty good!

Waiting & Wondering

It's been a little while since I last posted here, mainly because it's taken this long to get any developments – and it has to be said, the waiting has been somewhat testing! I was told that I would have to wait two weeks for a verdict from the MDT (multidisciplinary team meeting), unfortunately this turned into a couple of months. Luckily though, being well-acquainted with the unreliability of the NHS waiting times, this came with little surprise.

Meanwhile, I received this letter which explains the options of two surgical plans and describes some of my angles of retroversion.

Yeah, I'm just as baffled about all of those measurements, too. As my surgeon said, it's difficult enough for an experienced orthopedic surgeon to get their head around all of it, let alone a complete novice. I have joined a couple of ‘hip groups’ on Facebook - full of excellent knowledge, support and advice. They’ve been immensely helpful to me and I no longer feel as ‘alone’ and abandoned! Reading daily about people all over the world with similar issues as mine, at different points in their recovery; hearing success stories, not-so-good stories and solutions to problems, has been a fantastic insight into this ‘hip journey’ as a whole – in addition to increasing my medical know-how!

When my appointment did finally come round, my parents decided to travel down to join me for the scary verdict. They stayed here for a couple of nights and it was the best few days I’ve had for a long time! The only niggle was, my case still hadn't been discussed at the time of my appointment, as some members of the MDT were on holiday... But, it did give my parents a chance to meet my surgeon and discuss my situation with him in good detail.

I also got a quick photo of my x-ray while I was there. My crossover signs are definitely very obvious (meaning that from this view, the front of the socket crosses over with the back of the socket, demonstrating that both are facing backwards). Typically, I believe that with normal hips from this view, (without the femurs in place) you would be able to see into the ‘cup’ of the acetabular; with mine you wouldn’t.

Last week I finally had another appointment with Mr Politis. Simultaneously shaking and sweating, I was at last told that the decision had been made. ‘Plan B’ (aka ‘The BIG one’) is the route they want to take with me. Their judgement is that I need pelvic alterations anyway, so it is better to do both osteotomies at the same time due to their significant recoveries. 

Even after all of the waiting and contemplating, this information hit me quite hard and in a beleaguered, heavy cloud of overwhelming emotion, I embarrassingly let out a couple of tears in front of my surgeon. Apologising too much, I pointed and asked for a tissue and he went to pass me my coffee cup… I really hope there aren’t any mix-ups like that when I’m in theatre!

So I am now on the waiting list for a right Derotational Femoral Osteotomy (DFO) and a right Triple Pelvic Osteotomy (TPO), leaving the option of an arthroscopy until later if it’s necessary. Apparently, the waiting list is about 2 and half months long, but we’ll see. I’ll be in hospital for around 5-7 days, initially staying in the HDU (high dependency unit) for the first day or so. I’m not sure if that means I won’t be able to see any visitors whilst I’m in there, or not.

I was taken upstairs straight after my appointment for some pre-op assessments; had my measurements, blood pressure and blood taken, and was given a little information pack about anesthesia.  Risks include nerve damage, non-unions and there’s a chance I might need a blood transfusion. I’ll be left with a 10-12in scar down my thigh, one around 5in on my groin and a smaller one at the back of the pelvis.

It’s definitely going to be tough being on crutches for such a long period of time; I’m really quite apprehensive about it! I’ve recently started getting nerve pains in my arms and hands, which I reckon must be the discs in my neck now playing up. I have had an EMG nerve test, but I’m still waiting on those results. Having EDS also means my wrists bend back too far and shoulders click in and out of place (damaging and stretching the ligaments beyond their limit), so no doubt they’ll be complaining at me more when I’ll be relying on them constantly. My left hip is slowly being more problematic as well, so I don’t know how it will stand up to the responsibilities it’ll be given in a couple of months’ time.

It’s quite mad to think back to a few months ago; I had absolutely no idea about the details of my hip condition, or that people even have these conditions. I hadn’t even heard of an acetabular. All I knew was that, for a very long time it had been causing me a relentlessly overwhelming amount of pain and something really wasn’t right. It may sound a little odd, but I actually feel like the severity of these procedures is equivalent to the severity of pain I have been dealing with for the last few years. I’m so looking forward to not having my hips on my mind at all!

This Friday I’ll be venturing to London to get a second opinion from Mr Witt at the UCLH. Should be fun…

To The Man On The Train

An open letter. 

This time last week I was gearing myself up for a long (& inevitably painful) journey. It'd been months since I'd been up north to see my mum & dad; I missed them so much. Travelling with this condition is a big deal and it severely aggravates my pain, so making the trek from Birmingham to Durham is always a lot for me to even think about. Man, sometimes just going to water my plants in the garden is all too much. Unfortunately, going anywhere is made yet more difficult when the general public perceive me as being 'normal'. 

What you did the day I met you though - I do not ever want anyone else to experience.

After recently finding out that I require multiple, major surgeries on my hips, I'd had a long, sleepless week. Desperation had set in & the urge to visit my parents was overwhelming. I was trying my best to stay strong, to act as if this whole situation wasn't terrifying me as much as it really was, but at a time like this, all I wanted was that warm, loving embrace & to be told that everything was going to be alright. 

Consequently, last Tuesday I decided to pack my bag, put on an extra thick layer of ibuprofen gel, wrapped myself up with my back & knee supports and set off on my way. That walk to the station was almost too much itself. The extra weight of my backpack, the sharp burning sensation in my lower back & hip, and the added nuisance of clicking and cracking with every step, was almost enough for me to turn around and head home after the first 100m. I didn't. As much as I understood how awful the next few hours were going to be, I needed to see my parents. I just wish you hadn't been there to turn this testing journey into a nightmare.

I made it to town on one train and just before I boarded the 4.30 train from Birmingham for a 3.15hr journey north, I spoke to the conductor. I had walked the length of the train & noticed people standing in each carriage (other than first class), due to it being so busy. As pained as I am with sitting, standing in the same spot for me is also impossible. I explained my problems to the conductor clarifying that I needed a double seat to be able to move around a lot, because of chronic pain. Her only option was for me to pay to sit in first class (even though the guy who sold me my tickets assured me I'd get the help I needed from the conductor - & I'm presuming he meant for free!) 

After already spending £70 on my ticket, the idea of paying anymore was really off-putting and not really possible for me. "It's not my fault I'm like this," I thought to myself as she was midway through her checking the price of the upgrade, "Why should I have to pay extra to be able to sit in semi-comfort for a journey I've already paid too much for?" Before she'd finished, I told her I'd leave it and would just sit on the floor until a double seat became available. She told me that the next stop, Derby, usually empties out, so I was hopeful I wouldn't be down there for too long. Looking back now, I really wish I had paid, if it meant I was able to avoid your outraged, diminishing presence.  

I set myself up on the filthy carpet, exhausted and in agony just from getting to this spot.  I tucked an old pillow that I’d brought along behind my back and stocked up on painkillers. Derby came & went, with little change in busyness. Separate single seats were here & there, but with my condition I need the space and to able to switch position in an instant - I can't stretch my legs across a stranger, or sit cross- legged with my knees prodding into someone. So I stayed on the floor; moving & stretching when necessary. Aware that every time I touched the floor to support myself and then scratched my face, I was spreading a delightful array of germs all over myself… Lovely.

Sheffield was up next. To my relief, this seemed to be a popular destination for many & I could see the seats beginning to empty out a bit. I was so excited when I saw an empty double seat right on the other side of the door! I picked up my belongings and got the space that I needed. The padded cushioning of the seat was such a welcoming change for my sore joints. I even began to feel positive and at ease about the rest of the journey (probably the codeine kicking in, ha), but not for long... 

You boarded the train in Sheffield. A mere 20-30 seconds for me in that spot and you immediately stopped by me on your way onto the train. Which is okay, I guess, just very unlucky for me. There were plenty of other empty seats right by us & you chose the one right next to me! With three bags, you asked me to move my stuff so you could sit down. I calmly explained, stupidly thinking you would easily understand, that I have a disability that prevents me from sitting properly so I needed the extra space, that I'd just got to these seats after spending over an hour on the floor, and that there were lots of other empty seats up ahead. 

Little did you care, bellowing down to me shamelessly, in a tone I can't forget, "You can not dictate where I sit!" 

Those few words have rung with me quite a lot since. Questioning & analysing just how I would have to look, in order for me to actually be able to dictate where you sat. 

How about if I had a cane or crutches by my side, would I have been able to dictate where you sat then? What if I was heavily pregnant, would that have made a difference? If I was double my age, would you have put up the front you did, or would you have quietly moved on? 

It is one thing living with a disability that happens to be invisible, but it's a whole different story when you have to open up to a stranger about it and they either couldn't give a shit, or don't believe you. Just because their perception of a disabled person is far from what is in front of them.

Attempting to hide my hurt by this comment, I tried to explain to you that I have something called Ehlers- Danlos Syndrome, which affects my joints; 3 slipped discs in my back and that I was awaiting surgery for my hips. I told you that if you were to sit down, I would need to move back to the floor because of the restricted space. Your twisted response? "Go and sit on the floor then."

What a joker. At this point, I'd had enough. I picked up my stuff and wanted to get out of the situation as quickly as possible. Flight mode had rapidly kicked in and I needed to get out of that carriage, quick time. With a tear in my eye, angry & confused as to how someone can treat a stranger in this way, I made my way through 3 sliding doors to get away from you.

Just when I thought I'd escaped your toxic ignorance, you decided to get up out of your newly found seat, open back up the door of your carriage and shout down at me (now quite a distance away) in an incredibly belittling manner, "If you had just one slipped disc, you wouldn't be able to walk!"

The stray tear turned into a flood and I struggled to catch my breath. I have been living with degenerative disc disease for almost 8 years now and the amount of pain I have suffered because of it is indescribable. Your obliviousness and harsh attitude was met with huge bewilderment. Why would anyone lie about having the problems I have? Did you really believe I was making it up, just so I could keep the seat? Why did you feel the need to end our already awful encounter (in which you ended up better off), with such a bitterly cruel and disloyal taunt?

Your hostility that afternoon was unfathomable and I sincerely hope that you never treat anybody in that way again. Living with such a crippling condition is difficult enough, without judgmental strangers like you passing purely ignorant and hurtful comments in our direction. I think I can speak for others in my position when I say that all we want is for our invisible disabilities and pain to be accepted & acknowledged, that is all. As an alternative, you decided to use what I told you against me, purely because I have the ability to walk.

Therefore, the next time you see someone who ‘doesn’t look sick’, drive into a disabled parking space and hop out like nothing is wrong, hold back the judgement. This could be a day out for them they haven’t had for months.

The next time someone who ‘looks strong’, asks you for help with their bags, do not just dismiss them because you can’t see past the ideology of someone in need. Your help could really mean the world to an individual.

And the next time somebody tells you that they have a disability, but you can not see it, do not belittle them. Believe them and accept it. Do unto others as you would have done to you. Manners maketh man…

Asshole. 

Halfway To A Plan Of Action

So I had my appointment with Mr Politis this morning. Hurting so bad after all of that sitting down. Apparently they had booked 4 people in for the same 10am slot, which meant I had over an hour of waiting to do. Not great for someone who struggles to sit properly for 10 mins! (I'm sure there's irony in there somewhere) I had a little mooch around the hospital & grabbed a coffee, all of the time getting more and more nervous for the serious conversation that was about to come. It really didn't help seeing loads of people hobbling about on their crutches, knowing it will be my turn soon.

 
I decided to pop into hydrotherapy to see if I could quickly have a word with my old PT - she knows a lot about my condition so I wanted to give her a quick update & ask her about Mr Politis, I can't seem to find much about him on the internet. She kindly spared a few minutes and reassured me by telling me that my consultant is a good one & he regularly works with Mr McBryde, whom I have heard great things about.

Before the appointment I was given a questionnaire to fill out on my hips. 

"In the past 48 hours how have you found sitting?"

After torturing me with your hour and a quarter wait, I would say 'Extreme'! Now let me get off my ass and go and see the doctor... 

I was finally called to his office. I slumped myself cross-legged on the bed, pleased I managed to avoid another chair. It's nice having someone who totally gets my 'not being able to sit down properly' problem! He asked about the steroid injection & I told him it didn't do half as good as I was expecting, that I only had one day of good relief & even walked around the park twice, but after that it has pretty much been its usual, painful self. 

He wasn't concerned about the lack of effect & said as long as I felt at least a tiny bit of relief, that is a sign that my pain is very much hip related. Oh, how I wish the last 6 weeks had been the bliss I had heard about with steroid injections, but it's good to know it wasn't completely pointless.

He then started showing me my scans & this is where it all started to get rather complicated. There were all sorts of angles he was measuring and showing to me (I can't remember any of them now!) Some were pretty far off 'normal' and some were worse on my right side compared to my left, which he explained might be why I am having more of a problematic time with my right side - I am starting to feel more aggravation in my left side which is certainly getting stronger, but compared to the screaming right hip pain it's manageable at the moment. 

Apparently my case is quite complex, which is not the best news. He is still unsure which exact route to take from here, but he did explain a couple of options and stated that I will perhaps need 3 different types of surgery... Oh my.

My femur is retroverted (the ball part of my hip joint is facing in the wrong direction), so I was told that I 100% need a femoral osteotomy (FO). Cue the biting of fingernails and tight curl of the toes as he began to explain the cutting, maneuvering & plating of my femur- a whole lot to take in after only recently learning about all of this - and not the only thing that needs doing either. This is going to be a really long journey and that makes me scared.

An arthroscopy is also on the cards as I have bone spurs growing on the side of my acetabulum that need shaving off (the hip socket has extra growth which isn't supposed to be there, this causes friction in the joint) I believe this is called pincer impingement. He mentioned perhaps reusing the bone for the FO, economic! I also need the labral tear (cartilage damage) and the cam impingement (femur head deformity) to be repaired.

Then he spoke of the possibility of doing a Triple Pelvic Osteotomy (TPO), which is from what I gather, kinda like my hospitals version of the Periacetabular Osteotomy (PAO). All I know about that is that they cut the pelvis in three different places and then adjust the position of the acetabular, using screws to keep it in place. He said he was unsure if this is what I need at the moment, and that he can't know for sure, but perhaps doing the first two options together might fix my problem. A little confused by this, because from my (brief) research, the gist I get is that the acetabular needs correcting in order for alignment to be right. He also mentioned that preforming all three at the same time would make it a significantly long surgical procedure.

I'm in for a tough couple of years. Urgh.

I also got into the discussion about whether this is classed as hip dysplasia or not. He is adamant that this is not, but UCLH told me last week that my x-rays show hip dysplasia. So the confusion on that front continues. I queried if any of my hip problems could be posture related. I've had back problems since I was 17, so my posture can't be too great with the 3 slipped discs that I now have. He told me that this is entirely bone related and is either something I was born with or have developed as a child. He did say that maybe my hips could have been causing my back problems all along, but it's not definite.

He will now discuss my case with other consultants on Friday and get back to me in a couple of weeks. I really hope the wait isn't too long.

I now feel like a have a little bit of a plan coming together, even if it is just in pencil atm. There are steps that can be taken to give me a normal life in the future & for that I am grateful. The thought of battling with this forever is a nightmare.

I have a hell of a lot to prepare myself for, both mentally & physically, but this will not beat me!

How Good It Feels To Be Believed

Along with my back problem and the other random aches & pains that come along with EDS, I've been suffering with serious & 'mysterious' hip & groin pain for the past 2-3 years. It has only got worse & worse, so it came as very bittersweet news to find out that I actually have some pretty serious problems going on with both of my hips. Whether it is anything to do with my EDS or related to my back problem I am yet to find out, but hopefully I will know more soon. 

The agonising wait has been a long & painful journey. I've been unable to walk very far, stand up for long, sit down comfortably (any longer than 10 minutes is too much!), lie on my right hand side or do many other 'normal' things for far too long now & it is very frustrating. Something just really doesn't feel right in my hips. It was even more frustrating when it felt like nobody was taking my hip problems very seriously and I was constantly being dismissed. 

I know those close to me found it difficult to understand just how much pain I've been in. Invisible disabilities suck. I had a physio telling me it was psychological, a specialist saying he thought I was traumatised - and trying to get me to think back to the day when my back problem started (he believed that all of my pain could be stemming from some sort of stress back then). To be told that something so painful and limiting is all in your head is so confusing and petrifying! 

When my podiatrist wanted to take an MRI to examine the arthritis in my big toe, I finally got round to convincing somebody into taking an MRI of my hip. Although the appointment had nothing to do with my hip, I think he must have been able to see the pain in my eyes and gave in to my pleas!

The MRI came back that I have an extended labral tear. I've since seen a hip specialist at the Royal Orthopedic in Birmingham who requested x-rays & a CT scan. I am yet to receive the CT results, but from the x-ray results I've been told that I have all the signs of acetabular retroversion and possible femoral retroversion, pincer over-coverage of the femoral head and some small cam deformity. Needless to say all of these terms are very new to me and I've just had to look them up myself for the minute until I have my next appointment on the 7th. Unfortunately, it appears most of these are slightly uncommon as there's not a lot of info out there.

Six weeks ago I had an x-ray guided right hip injection as a diagnostic tool. I was expecting to be walking on clouds, but the results were pretty dim. I had around one day of good relief a week later and then a few weeks with very slightly reduced pain, but it's still been really uncomfortable!

I'm also slightly confused as UCLH took their own x-rays when I was there for my EDS diagnosis. The lady I saw back in Feb rang me last week & told me that I have hip dysplasia & that Mr Witt would like to see my CT's - upon doing a little research this appears to be different to the retroversion? It seems I still have a lot to learn about what is actually going on with my hips!

After discussing in detail what it all meant, it has become very clear that I am going to be undergoing some sort of hip surgery in the near future & she did mention possible PAO which I have had to get my head around. 

I was linked to this video which is a pretty good explanation of what that's all about and it's fair to say that it's a daunting prospect! Especially when I can feel my other hip starting to go...

I now at least feel that I am on the right track with my hip and hopefully from here I can move forward towards getting my mobility back!

I go back to my hip specialist on Tues, so will give an update of what he has to say. 

It would be great to hear from you if you have knowledge of, or can relate to anything I'm talking about. Drop me a comment :)