Looking back...

Hip surgery 3 years on...

Its hard to believe it was 3 years ago today I had my surgery, 3 years is not that long but seems like forever when I think about what has taken place since. And now my open hip surgery for labral pathology and FAI has now become an arthroscopic procedure that my surgeon performs (and Jess knows that only too well lol).

I can still remember waking up early that morning and eating fruit salad for breakfast before my NPO status started, still remember the butterfly feeling being driven to the hospital and all the nurses questions and conversation and everything, still remember my relief when my surgeon assured me I wouldnt need a catheter (though this turn out to be false hope lol)...I think the whole thing made quite an impression on me-it was after all my first ever surgery and was a big deal.
Back then I had goals that included things as simple as being able to tie my own shoe laces again and cut my toenails myself, and slighter harder ones that included being able to walk and then finally run. I celebrated the day I could put my socks on, shoes on, tie my laces, paint my toenails, walk without any crutches (finally), dance, ride my bicycle and a whole heap of other things too but one thing I have never really got on board is the running thing-and for a while now I've kinda thought of it as not important anymore. CRPS has kinda changed priorities in that regard.

But 3 years on, my hip is pretty damn good. It flexes (sometimes past 90 degrees if I work on it...yes yes I know bad bad physio student), it externally rotates to the envy of all in my little ballet class, and its not the body part limiting my walking any more lol. And gasp gasp, in just the last few days I've finally been able to lay on that side without it protesting (but to be truthful I think that is more limited by the crps pain from the incision site).
Its been an interesting teaching tool for my classmates at times due to the limited range and grinding sounds it makes and if the last imaging I had done is anything to go by I'm headed for an early hip replacement. But I dont care lol, at least I'm walking now and apart from the bolts of pain I get from stupid positions... its perfect...

So I think I'm going to say "Happy birthday" born again hip!

Its one of those days...

...those days when I feel overwhelmed by everything. But at the same time so ashamed that I feel like this, after so long, so much education, so much knowledge and I still end up at the bottom.

I have cried in frustration, pain and exhaustion (can I blame hormones you think? periods suck...). Where is that magic wand when you need it?

I'm going through withdrawal coming off tramadol, despite coming off it the way I got told but I managed to survive the 6 hour bus trip without succumbing and being tempted to take some. Its funny but at least this is just because of physical dependence (quite different from addiction) and my body has to adjust in its own time. I'm not sleeping, I feel crappy and teary and had the 'jitterbugs' lol. Pain has increased and not only in my crps areas but also in my wrist, abdomen and also my 'fixed' hip (and its just like pre surgery pain). I think this revelation has me slightly gutted because I thought after 2.5 years things were finished with it for now. I know that I still have impingement that wasn't able to be removed and the beginnings of OA and I have been pushing it lately but still. Why did it have to join in now? lol and I still have the gabapentin to decrease yet too, what will that bring?

I asked the dr what are we going to do if coming off the meds doesnt change anything as far as the nausea/puking is concerned (bad on my part because that is just negative thinking), he said we will decide if/when that happens. I just feel like all this is bad timing, why now when I have 6 weeks left and then big exams?

I'm doing ok really, just being human and wishing things happened instantly rather than you having to have patience and wait and hope. If I learn nothing else through this I have to learn patience with myself or I will not get through. Things will get better and for what ever reason I am supposed to be walking this road just now and what I have to focus on is doing my best and showing I will do my part in the getting better thing-not at all easy when it involves things that make you feel worse in the short term but I am persevering.

My Aunt always says that you are never given more to cope with than you can handle, you just have to realise that plans are meant to be broken and not to have unrealistic expectations.

So, today is my 'write-off' day and tommorrow I will start the day with a smile (and breakfast) and hope it goes better than today.

If wishes were horses, beggars would ride...

How I wish that I could stop feeling sick. Nausea sucks...

nausea+random pain+crps pain+exam stress=too much.

I'm being worn down by having to deal with all this, despite the fact I have actively stopped stressing about exams, I know subconsciously I still am. But I have been through exams with crps before and I didn't make myself physically sick so I'm inclined to think that there is more going on.
Also the nausea started over a month ago, way before even the hint of exam pressure was dawning.

I feel worse once I have eaten, which is making life difficult as you cant just stop eating (or at least I cant afford to).

I have figured out that a piece of toast in the morning (minus the bottom crust) and a glass of juice to take my meds, will stay down. Any more and I have trouble stopping it come back up. Lunch time I can eat a few crackers and an apple or a yoghurt if I'm lucky...
Dinner mostly I'm eating almost 2/3rds of what I had been and feel pretty sick but can keep it down if I stay still.
If I try eating any more than that then watch out my stomach will not like it and it wont stay down.
I'm sipping water throughout the day so I'm keeping hydrated.

Last night I had a piece of chocolate cake a bit after dinner and boy did I regret it afterwards but it did taste nice :)

I'm not sleeping due to the tummy pain and nausea, feeling pretty tired due to the lack of sleep, end of semester and probably lack of food.
Starting to get pretty upset with myself because I'm not able to spend the time I know I should be and need to studying. I have to lay curled up a lot because that's the best position to keep from puking and you cant study like that (not when you feel rotten anyway).

I'm starting to notice subtle signs that I'm losing weight, which is something I am very aware I need to stop because I don't have reserves to loose.
A friend suggested I just become anorexic to solve the problem!!!which is terrible advice, there is no way I can afford to even get myself into that way of thinking.

I have a Dr's appointment tomorrow to get a medical certificate to go with my special consideration application and I really hope that this guy will be able to suggest something to help me feel better.
Because its been suggest this is related to crps I don't really know what to think about it. I cant wait for my pain specialist appointment next month to ask him his opinion, because I guess he is my specialist and will hopefully give me some direction on what could be going on. I don't like the thought this actually could be crps, I don't deal well with nausea and if I cant get it under control there is no way I am going to be able to get through the rest of the year with clinical placements etc. I just don't see it possible...crps is hard enough without adding daily nausea to it.

I'm just so tired of no relief and no end in sight, what could possibly be causing all this to be happening?

Happy 2nd birthday!

Its strange how time has just flown by...2 years ago today I was nervously waiting in the hospital for my first ever surgery. I was about to let a surgeon cut me up and dislocate my hip (and mess about) in the hope that his work would allow me to walk again. Just walk again...I wasn't worried about being able to run or skate or bike or dance (ok well I was a hoping a little about dancing), just the thought that I might be able to walk normally and be able to keep up with my friends and not be in so much pain.

2 years on, I am walking mostly without a limp (and when I do its has nothing to do with my hip), I can ride my bike, run a little and dance too! My hip is pretty good, I've not had the pre-surgery pain come back ever and I am still amazed each time I go to tie my shoe laces or try and paint my toenails that I can actually do it.

I do have residual issues from the surgery itself, I still have visible swelling around the incision site, I also have quite a bit of pain all round the incision too so when I bump it (or someone bumps into me) it is rather painful.
I don't have amazing ROM but that is because I haven't worked hard to improve it, I feel safer know that it cant go too far (I still have some impingement so was told to be careful anyway).

But despite these surgical issues, I would do it again in a heart beat...being 21 at the time and not able to do so much and being in constant pain because of a FIXable problem was horrible.
I only wish that my surgeon had been right when he said that my fixing my hip would also deal with the pain issue of my foot (now known to be CRPS). Had I known then, what I know now I wouldn't have been so optimistic. But at least my hip got fixed so I am able to do so much more than I had been able to do then-it was worth all the hard work and more.

So Happy 2nd Birthday remodeled right hip!

Progress

Its the best thing in the world to be told that someone is really pleased with your progress...it makes all your hard work worth it and sometimes in this journey that is crps, hard work seems like a waste of time.

My Mum drove me out for physio the other day, every time we say that we went to Kaiapoi for physio people look at us strangely and my auntie commented that it was rather a long way to go from Dunedin hehe-at least my Mum didn't have to drive all that way! But it is worth it, I haven't found anyone else who works the way she does and she has a totally different approach from the sports/rehab/manual physio's who are the norm.

She totally understands people in chronic pain, never makes you feel like you somehow brought it on yourself and makes you feel more in control of everything.

I am coping much better overall on the new med combination and combined with the tens and mirroring I get through most days. I have my days (as you all know) when despite all this I do not cope well but this is no miracle cure, just a management plan. I am getting out and about more and have a bit more confidence in myself though I still have a long way to go on this.

She has tweaked my balance program a bit so that I am able to do it without constant flaring (I have been very slack in doing it because of the immediate painflare) so hopefully that means I start progressing with this too.

She seemed a bit concerned about the fact that I still have quite prominent swelling from my hip surgery (last surgery was June 07), I asked her about the pain along my incision and she thinks some will be due to all the swelling. So now I have to see if I can wear some fitting leggings and see if the light pressure helps at all and go ahead and get a steroid injection but to get my pain doc to do it rather than my ortho surgeon.

I also have weak hip external rotators probably also left over from surgery and the fact I never make this leg do anything. And you know she said it was pointless to specifically try and strengthen them, that it is functional movements that will help this muscle so I need to concentrate on standing up better initially and I am doing mirror movements-apparently it is proven that mirror movements will strengthen a muscle on the other side by 30%!

When I come back home after exams in November she is going to take me to the pool and give me a hydrotherapy program!
So all in all, a very productive visit.

Dratted Hip...

So, we have been doing 'hips' in classes the last 2 weeks, anatomy is fine-I knew quite a lot already lol. Lectures are interesting, I was especially happy to hear labral tears were big enough to be mentioned as possible hip pathology-no FAI but at least its a start right?
But when it came to practical labs I started having problems...
Last week I let my partner have my left (supposedly good un-operated hip) hip to practice on, it wasn't too happy and the quadrant test was the last straw. It still hurts a week later.
So this week I thought I would give it a rest and let my partner use my right (surgically now 'good' hip) hip instead. First comes me being embarrassed over how little ROM I have, both passive and active (um like not even 90 degrees active flexion...) so I mutter something about having to get back to work on it. Then she does some lateral transverse glide accessory movements and I begin to wonder on the wisdom of letting anybody touch it after all. Trade-in anyone?

This probably sounds trivial, but for a while now I've been getting really stiff as the day goes on, and start getting pain round my right hip joint and down my anterior/medial thigh to my knee. This seems different from the hyperalgesic patch but I've haven't really taken much notice. It is also slightly different from the FAI pain-well at least that is what I'm telling myself.

Is this the osteoarthritis that was noted, coming to catch me already? Or just a case of paranoid physio student diagnosing self with the pathology of the day syndrome-lol!

The road to surgery and beyond...Part 7...Beyond...

It’s the next step that is the hardest part by far and I have to say that 9 months out I am still recovering, still making progress and still have post op goals I want to meet.

Even though my surgeon told me that it can take a full year to recover to a certain point, even though I had others tell me the same I really didn’t believe that it was that big a deal, surely how hard can this recovery thing be? Now I have experience, now I know better, rehab is the hardest most rewarding experience in my life to date.

Another thing-if anyone had told me that I would be up and walking on crutches less than 12 hours post op I would have laughed in their face, even now I think back in awe of the physio, she must have been one tough cookie because I sure as hell wasn’t thinking about even moving a muscle and the next thing I was standing up out of bed being handed my crutches and told to walk across the room! It amazing how that makes you feel, even though you have tears running down your face because of the pain, you feel shocked and full of motivation and determination-I can do this!

There have been numerous milestones/goals so far in my recovery. Each one bringing joy and restores the motivation/determination as sometimes you feel like it all gets too much and is way too hard.

I weaned off one crutch, was able to put my own socks on, walk around the mall with one crutch, cook dinner for my family, had to relearn how to walk properly (this is much harder than it sounds), regain balance and be able to stand on one foot, finally get rid of the other crutch, TIE MY LACES for the first time in years! Walk without the funny penguin waddle gait. Walk several miles without surgical pain, run for a little on the treadmill, start using weights in the gym to strengthen my weak muscles just to name a few, there have been so many I cant remember them and there are still a few to go-I would like to be able to get my foot in a good position so I can cut my own toenails and even put on some nail varnish would be nice!

I have since had my hardware removed (just recently) so I am back to strengthening my muscles and building up to running again but all in good time, it’s the hard work that makes you appreciate the small things and I for one will never take for granted the ability to walk in a “normal” fashion. Every now and then I reach a new goal and celebrate the achievement, there are still celebrations ahead!

BUT the single best thing about all this? The pain I lived with constantly before was gone when I woke up after surgery and has never returned-EVER, thank you so much for giving me my life back!

The road to Surgery...Part 6 - Surgery!!!!

Surgery is the easy part (just forget the freaking out beforehand) you get a date, prepare for that date, arrive and get quizzed by the admitting nurse, have your surgeon arrow and sign "the body part", wait half a day and then finally they come and whisk you away. The anaesthetist puts as many holes in you as it takes to get the IV in and the final "what side are we operating on" gets asked and then, only then do you start to feel like its really going to happen. But its easy really, you get "put under" they slice you open, chop your bone, dislocate your hip, have fun monkeying about in there “fixing” things and then when they are done screw you back together and sew you back up. All the while you know nothing till you gain consciousness and then the surgery is all over, piece of cake – who am I kidding, this is when all the hard work starts! I don’t remember being in recovery, I was there a good few hours and so was my Mum! She had spent the whole day at the hospital with me leaving the rest of my family to fend for themselves and when I was in recovery the nurses got her to be with me. I had a bit of a hard time, was really sick and they had trouble getting my pain under control because I’m allergic to NSAID’s-oh the joys. My Mum informed me that I didn’t say anything random (in fact I didn’t say much at all) but several of the people who came and went while I was there were “interesting” hmm…

The road to Surgery...Part 5 - Meeting the Surgeon

So now I wait to see the surgeon, all the time wondering whether or not he is going to think that what is wrong with my hip warrants surgery (should it really affect me this much? Am I just making a big deal about nothing, should I just be able to deal with it?). I cant take all this stress-I worry way too much.

But the weeks of waiting weren’t in vain; I got hold of my MRI report and find that it showed something more than the doc told me about. I ring up and ask what they think this sentence means and got told “oh that could mean anything we don’t take any notice of that” so curiosity sets in and I start searching online for some answers.

I find something I don’t really want to know, don’t really know if I have understood right since it wasn’t mentioned to me before and therefore cant understand why they wouldn’t have known the implications it creates. But at least now I am aware that this may be more than we originally thought. That what “could” be wrong with my hip may not be just the quick fix arthroscopic surgery I have been informed of. Yay more to worry about but at least now I have some inkling that this is just the beginning of understanding what is going on. Until I get to see the specialist surgeon all this is just speculation so I try and tell myself I am making too much of it, after all I’m no doctor…

My Mum took me to my appointment and we were early, I was so nervous that I made her sit in the car till just before my appointment time as there way no way I was going to sit in his waiting room! I made her come so she could write down everything he said since my memory is so shocking.
First impressions-I have no idea what he first thought of me, he asked me what the problem was and I just sat there frozen! Thank goodness my Mum was with me and she explained I had a head injury and then started explaining what was going on!
After that not so good start, things went on much better, we pulled my films out and my original so called “normal” x-ray came out. Not so "normal" surprise surprise-he could see perfectly where my problem was! The relief was immense at the same time I felt angry that all this time there was a reason but no-body had seen it.
He did a small physical exam, nothing compared to what others had put me though, he decided not to carry on as he could see quite plainly that I had some issues and didn’t see any point in putting me through more pain than was necessary.

Then he looked at my MRI films and discussed options, (needless to say the extra findings on the report I didn’t get told about had a big bearing on surgical intervention).

The official diagnosis-anterior superior labral tear with bony impingement on the Femoral head or CAM FAI (Femoroacetabular Impingement).

So instead, the arthroscopic surgery I was led to believe was the answer to my problems basically turned into (in his words) “not an option” I needed major hip surgery!
I was so glad I had done my own research and had already prepared myself for this senario otherwise I think I would have properly freaked out at the thought of more intense surgery!

My impression of him? I love him!!!! He spent lots of time explaining everything, treated me like a human being and because I have some knowledge of anatomy etc he explained things on my level using terminology I understood and even gave me the journal article of the surgical technique! He provided information on how he learned the surgical technique (as it is a relatively new surgery and not many surgeons have this expertise) and really gave me lots of info so I could make an informed decision and didn’t rush me through all my questions. All we had to do now was wait for surgical approval and then schedule a date.

The road to surgery and beyond...Part 4 - Test results

Test results

So finally the tests were done and I was waiting for the results, I hate waiting! It kills me the not knowing part, all the time you are waiting, someone knows what your results say and that someone is not you. All the time you are waiting, thoughts are spinning round your head:

What if they don’t find a labral tear?

What if it really is arthritis and there is nothing they want to do about it yet?

What if I need a hip replacement?

And my worst nightmare…what if nothing showed up - what will they think of me then?-I swear I am not making this hell up.

Thank goodness I didn’t have to wait long to find out, the doc rang me up to schedule an appointment-I was finally going to find out for myself.

So it goes like this, chit chat – how are you feeling today? …I'm ok thank you (anxious as hell, I just want to know what they said-cant you tell?)

Your walking is a bit better today. …I haven’t been up to much lately that’s all (please don’t decide just because I’m walking better that I'm ok cos really I'm not)

How’s everything else going since I saw you last? …Sorry? (Ok enough already, I NEED TO KNOW what my results say….NOW)

Ok then so he put me out of my misery and relieved my worries – something showed up on my MRI’s, SOMETHING SHOWED UP-I want to run and jump and scream and shout! I don’t know how to explain how I felt except immense relief and also excitement. This was the first time I had proof that there was something wrong with my hip and the necessary information to go on to the next step what ever that was going to be.

At this point all I was told (and shown on my films which was kinda neat) was a labral tear in my hip, apparently an unusual diagnosis as not many doctors are aware of this pathology in this point in time, never mind my fantastic physio had already come to that conclusion! He explained the anatomy of the hip detailing what the labrum and capsule etc was (needless to say I have since found out through my anatomy lecturer he was slighty wrong but never mind, he tried).

Next step was to be referred to an ortho surgeon who specialised in…yup you guessed it – labral tears in the hip!

The road to surgery and beyond...Part 3 - Tests

Waiting for Tests

This gave the doc some time to reflect on my hip “issues”. It is a well known fact that hip pain can be referred back pain, that’s fine I understand but please don’t forget that I have very limited passive movement in my hip joint. Surely that has got to count for something even if you aren’t totally convinced by my “my back is fine it’s my hip damit!”
It all came down to cost (the reason he had to reflect), whether I just got a hip MRI or if I got my lumbar spine done at the same time. They don’t like having to pay out lots of money for tests and MRIs aren’t the cheapest things in the world.
The good doc reflected and decided that both were warranted (I felt so special), and to make me even happier he informed me that I would need dye injected into my hip joint prior to the MRI-WHAAAAAAT? The cartilage in the hip joint needs dye so that it will show up properly in the images.

I had a bad experience with a previous MRI so I was freaking out about that and then freaking out about the intra-articular injection and also freaking out that the MRI would show nothing and then what would I do? Can you see I was worrying way way too much?

The test itself went well; the guy who did the injection into my hip (not the most wonderful thing to go through but certainly not undoable) was really nice and made me feel as relaxed as possible. The lady doing the MRI kept me calm and talked me through everything and all through the scan let me know that I was doing great and how far we were through and that she was getting good images etc and I felt so proud that I made it through the hour and a half-when you put your mind to something you can do it.
And then it was over, now all I had to do was wait for the results to come through…. And did I mention-they put some local anaesthetic in my hip and for the first time in so long I could tie my laces without that awful pain-amazing!

To be continued…

The road to surgery and beyond...Part 2 - Diagnosis

...so after that fall down the stairs I was now desperate for an answer to my problems and some relief but it wasn't an easy task...

Diagnosis

This was the second hardest part, the fun part. How to get someone to believe that there is SOMETHING WRONG with you. Do you know just how hard it is to get someone to actually give you some credit when you are in pain?

Just because I am young doesn't mean there is nothing wrong.

Just because x-rays were "normal" doesn't mean you discredit your patient, x-rays are not the be-all and end-all.

Just because you deal with attention seekers doesn't mean you get to label me as one of them, hell I took over 2 years to finally decide to get checked out (does that spell attention to you?).

Just because you don't have any idea what is going on doesn't mean you fob me off with some nonsense (I would admire you if you admitted you didn't really know but were willing to help me find out or send me on to someone who might).

And lastly just because you are a doctor doesn't mean you can't listen to another healthcare professional occasionally when they have an idea of the cause but are not able to order the diagnostic tests required!

A physio saved my hip and my sanity; he treated me with credibility and gave me the strength to persevere when I wanted to give up - HE ACTUALLY BELIEVED ME! He even tried to talk to a doctor for me and explain what tests needed to be done but no, the doc knew better. But thanks to Steve I soldiered on and finally found a doc who listened to my story, did a good exam and cared enough to help me find the cause of all my pain (thank you Doc, between you, Steve and my wonderful surgeon I am now looking forward to "being normal"!)

This was just the beginning of a diagnosis though, tests needed to be decided on, ordered and then the waiting game for them to be done!

To be continued…

The road to surgery and beyond...Part 1 - Symptoms

There is so much more to surgery than the actual procedure - symptoms, diagnosis, surgery and rehab. In fact in my case the actual surgery was the quickest and easiest part by far!

Symptoms

First things first, It is not the greatest idea to pretend that you are fine and dandy when your body is telling you you're not. I thought I was fine, I can deal with this, I could still carry on most of my activities, study, active job, dancing, tennis, table tennis, running etc (albeit in pain), it was just things like putting on socks and shoes, standing still, sitting down comfortably, sleeping, climbing stairs and anything that involved hip flexion that was the killer. It took 2 years of 'dealing' before I told a doctor about it, she did an exam, checked my ROM and then ordered an x-ray while at the same time telling me that I was too young for arthritis and she didn't expect that there was anything wrong with it really. 2 months later I got my x-rays and sure enough the results were "perfectly normal films" her next suggestion was a steroid injection into my hip without even knowing what was wrong so I ran a mile and decided to just carry on and deal. Fast forward 6 months and I could no longer 'deal', was living maxed out on pain meds that barely helped and I walked like an old woman and just to make things even better - I tripped down some steps-the perfect answer to all my worries!

To be continued...