Week 8 & 9

The last couple of weeks have been a little eventful – hence the lack of blog post. The NHS have gone way down in my estimations, we’ve received a section 21 notice from our estate agents, and it looks likely that I’ll be on statutory sick pay for 6 months. In other news I am no longer taking medication, I can officially look after myself now, and I had a mini holiday up North.

Surely after having major surgery you’d be a physiotherapy priority right? Apparently not. I was discharged 9 weeks ago and after a few tedious conversations with certain NHS folk, it looks likely that I will ‘physio’ myself from here on out. You may recall that I requested to be referred straight to hydrotherapy following hospital and after three sessions, Deborah attempted to refer me for NHS physio. I say attempted as when she contacted Kingston hospital (which I live next to), they claimed to only accept GP referrals. - Very strange considering Deborah knows more about my recovery than any GP. Nevertheless, appointment made, referral requested and was told it could be up to 6-weeks. A few weeks later I missed a call from Tolworth hospital and listened to the voicemail requesting a call back. Instead, I called my surgery to explain the doctor had made a mistake and could they re-refer me to the correct hospital. Unfortunately the receptionist couldn’t comply and insisted I make another GP appointment to arrange this. I did as she wanted and wasted a doctor’s precious time in doing so. The GP seemed to understand and agreed to contact Kingston. A few weeks passed and I received another call from Tolworth, only this time, I regrettably answered it.  I can honestly say the woman at the other end was the most obnoxious, uncouth and condescending person I’ve ever spoken with. Somehow I remained calm and polite throughout so her demeanour was in no way justified. In the midst of her rudeness she explained that Kingston hospital physiotherapy department don’t accept orthopaedic outpatients and that Tolworth hospital (which is 3 miles down the road) is my only option. This lady (who I believe was the head physio) then told me I needed the correct referral from my surgeon as my GP isn’t aware of my progress. I tried to agree with her on the GP front but she seemed to have an inability to listen and presumed I was at fault. I explained that my surgeon isn’t fully aware either and if anyone would know it would be Deborah but that was shot down too. This physio kept referring to ‘my hip replacement’ so I asked if she knew what surgery I’d had and if she had seen any PAO patients herself. I’m not exaggerating when I say she couldn’t pronounce periacetabular osteotomy and confessed Tolworth hospital see maybe one PAO patient a year. I believe at one point her words were: “I don’t mean to sound condescending but as if I’m going to take your word for what you’ve been doing.” If she’s not willing to find out what I’ve been doing from Deborah or myself, and isn’t too familiar with PAO patients, then I would be foolish to put my recovery in her hands. I decided then that there is no way I will even contemplate having physio there and will continue it alone. All the treatment I’ve had post discharge I’ve paid for privately and I’m not made of money so it will soon stop. In earlier blog posts I discussed budgeting money for treatment but that included the anticipation of NHS physio so I see no alternative to flying solo with my recovery. At this moment I feel helpless and rather let down by the NHS as they’ve performed this surgery without ensuring the aftercare is sufficient and attainable. My main concern however is for other PAO patients who have experienced similar NHS downfalls and don’t have any rehabilitation knowledge. Mine is limited, but let’s hope it’s enough to make a fully recovery.

The NHS rollercoaster of fun is nothing compared to our living arrangement upheaval. Our landlord obviously likes a game of “hide and no seek” as our estate agents find it impossible to contact him. Due to an ongoing damp issue within the flat, it has now been deemed ‘unfit to live in’ and so a section 21 equates to our tenancy not being renewed come the end of March. Definitely an inconvenience but on the very small plus side, I should be able to assist in the move as I’ll be off crutches. The big question is do we move elsewhere with only one income, or move into separate family homes to save money until I’m earning again. Andy needs to be near London for work, and I will require daily assistance again after my next op. It’s a tough call. Suggestions on a postcard please.

Then there’s my lack of income; until I’m 100% fit and healthy it is nigh on impossible to fulfil my previously active job role. Unfortunately there appears to be no desk-based work available and so it looks likely that I’ll be off work until June 2013 at the earliest. That is if I’m still sane by then. I have returned to knitting (still only scarves) but feel I need a new hobby to keep my occupied until June.

I knew this double hip surgery would be my toughest experience but I’m not even half way through and life is still throwing a lot of curve balls in my/our direction. We’ll just have to see how much longer I can withstand them and discover if everything really does happen for a reason.

 

In other news:

It could be bone-growing pains or the cold weather, or a combination of the two, but this last week has been more painful than usual. I stopped taking the morphine soon after seeing Banksey and thankfully my sleeping patterns returned to normal. During the day I weaned myself off all medication too and it was fine for the first week. Despite feeling more aches and pains recently, I’ve still refrained from taking medication as I want to truly gauge it on a daily basis. It is hard to know whether new or different pains are normal or not and I guess there’s always a worry that it’s something more serious. The worst part is trying to convey the level of pain you’re in. - Especially when you’re a ‘hypochondriac’ or you’ve been fine for a few weeks. There is such a thing as regression so it’s helpful for those around you to be understanding and patient. Before jumping to conclusions, it's not my 'self-physio-ing' that caused it either as I haven't tried anything different yet. 

I’ve also just returned from a long weekend in Newcastle to see family and the five-hour journey there and back didn’t bother my hip at all. It's just the 'walking' that hurts my hip and I feel it first thing in the morning which I never used to. My aunty taught me a thing or two about knitting which was great, except she really highlighted how efficient and advanced she is, compared to a little novice knitter like myself. On returning from the North East I have been left to my own devices and my dad has returned to Reading. So far so good and the only downside is not having any company throughout the day. 

I couldn’t leave you without a picture update either…

 

The infection has gone now but it left behind a big hole which I noticed before hydro two weeks ago. Luckily the hydro clinic gave me plenty of waterproof dressings to wear daily until it stopped weeping. It looks a lot nicer now as the skin has almost healed completely, so it’ll be back to the Bio-Oil next week in an attempt to reduce all scarring. I’m not holding my breath mind.

Week 7

The long awaited six and a half week check-up with Banksey was fast approaching and I couldn’t wait to hear something along of the lines of “you can wean yourself off the crutches now.” But this wasn’t the case. The X-rays showed that my pelvis is yet to reconnect; the hip socket reconstruction was so severe that the bone still has an inch to grow until contact is made.

If you look closely you can see the cuts above (where the screws are) and to the right of the femoral head (ball part of joint), which freed the socket from the pelvis. This enabled the socket to be rotated anticlockwise so the socket covers the femoral head. My left hip dysplasia isn’t as bad as the right was but you can still see that the femoral head is partially uncovered and the socket slopes upwards instead of flattening out.

Unfortunately, as adult hip dysplasia and PAOs are relatively new, many doctors and consultants misdiagnose the hip pain even when a dysplastic X-ray is staring them in the face. If you’ve had ongoing hip pain which hurts to walk through at times, heard your hip(s) click and clunk during day-to-day activities, or experienced your hip giving way whilst walking, you may have dysplasia. Request an X-ray and ask to see it. Watch out for sloping, shallow hip sockets and mention dysplasia if need be. I suffered pain for a year before I sought help and then only had to wait three months for the correct diagnosis/bombshell news. Luckily the first consultant I met (Dr Ward at Kingston hospital) knew exactly what he was looking for on the X-ray and referred me to Banksey for surgery. I’ve read and heard a variety of stories about women seeing many consultants and waiting years for accurate news let alone surgery. My hip twin for instance was passed around the houses and suffered for five years until a Doc finally identified the issue and referred her to Banksey. Diagnosing dysplasia isn’t the only tricky bit but finding an experienced surgeon who alleviates the problem and doesn’t make it worse is the next task. Banksey specialised in orthopaedics for 5-6 years, then specialised in PAO for another 5-6 years so he really is the crème de la crème of performing PAO’s in Britain. For more information about dysplasia visit his website: http://www.bankes.com/hipsurgery_2011/hip-dysplasia-and-PAO.html

The downside to the disjointed finding is that I am to remain on crutches for another six weeks. 50% weight bearing for three and then 80% for three to encourage blood circulation and stimulate bone growth. So close but yet so far from the complete independence I desperately want and thought was imminent. Thankfully my dad has agreed to stay with us for the next couple of weeks to continue helping me out. On the plus side, Banksey did reassure me that the screws haven’t bent, the infection is on it’s way out and it’s normal to still be taking morphine at night. He also explained that I can attempt some hip rotational movements and can lie on my right side now. – It’s been tried and tested and I’m pleased to report no pain or problems this time round.

Before surgery I knew that certain bodily changes would occur such as: my leg muscles getting smaller (atrophying), arms getting toned and bigger (hypertrophying) due to the use of crutches, and possibly weight gain with Christmas on the horizon and an inability to exercise. My predictions were accurate on all accounts… My hockey thighs are no more; I could be mistaken for a boxer with my upper body; and my weight temporarily fluctuated. However I wasn’t aware that I would be 2cm taller, have a bigger hip and tonnes more back pain. As my right hip socket has been rotated it has pushed my femur (leg) down and out. The leg length discrepancy is pretty obvious to me when I stand or walk as my hips are noticeably wonky and I have to stand with my feet a foot apart to level my hips out. It shouldn’t cause too many problems (other than affect my back) and I’ll have to put up with it until my left hip is corrected. My slightly bigger right hip is visible on the X-ray if you look at where the greater trochanter (the knobbly bit to the left of the femoral head) is in vertical comparison to the iliac crest (upper rounded part of my pelvis), and then compare it to my left hip (right of the X-ray). The increased back pain is largely down to crutches so regular physio treatments will have to do until I’m off the sticks. So ladies, if you want to be that little bit taller, I’d recommend double PAO ;)

Aside from seeing Banksey, I was really looking forward to my check-up so I could see my hip twin Natalia again. We're still in regular contact so were aware of each other’s check-up date and time. It was so good to see her and Tom and we had a good catch-up in the hospital. She’s progressing really well and is ready to slowly come off the crutches. Natalia also had a visible stitch poking out of her wound but unlike me, decided to leave it. Banksey removed it at the check-up and I immediately regretted cutting mine. The infection has caused my wound to be very red and dry but whilst showering, I still notice a slight opening and what looks like either a stitch or a scab at the top of my wound. I wished I had mentioned this to Banksey and had him investigate but I missed my opportunity. During my shower the following day, I was virtually 100% sure that it was the stitch I could see and decided it was time. Andy sterilised the tweezers and watched as I pinched the white thing. It was a massive relief when this came out…

I’m a little envious of Natalia’s wound as it looks very clean and tidy still. My tiny line of a scar is very much long gone as you can see in the picture. With the stitch finally out, my skin can close up and hopefully heal properly. I wondered whether this partially caused the infection, but who knows. At least I’ve completed the course of vile antibiotics and nipped the infection in the bud.

In six weeks I have another check-up with Banksey to discover if the bone has grown and my pelvis is reconnected again, and he’s put me on the three-month waiting list for my left hip. This is later than initially thought and unfortunately can’t happen sooner as I’m not able to fully weight bear yet and I need one functional leg to rehab the other. I only have six weeks on crutches, then six weeks off crutches to increase my right-sided strength in preparation for the next surgery, and now that I’ve been given the green light to up the reps and sets of my hip, leg and abdominal exercises, I’ll be ready for it!

Lastly, I have had a few enquiries about how I’m keeping busy with my abundance of spare time as I haven’t really talked about it in a while. I’m afraid to say that 2013 hasn’t seen any knitting thus far after my failed attempt at a hat turned me into an angry knitter again. I plan to recommence this week however. I’ve been sucked into watching more day time television but no more Jeremy Kyle don’t worry. Sorting my tax return and temporary benefit money is quite time-consuming, and I’m working my way through a couple of boxsets; The O.C. and Homeland. Two months off work is not fun at all, and knowing that I'll be doing it all again in April means I need to think of more things to keep busy. Suggestions are welcome. TTFN

Week 5 & 6

2013 so far...

Do you want the good news or bad news? Well, the good news is that I’ve progressed to using an exercise bike (with no resistance) and subsequently hip extension is getting easier and less painful. The tricky bit is lifting myself onto the saddle without putting weight through the operating side, but once on, it’s great. Pedalling doesn’t cause pain and I attempt at least five minutes every other day. The great news is that since using the bike, I’ve finally seen more progression since getting in the hydro pool for the first time. I was getting fairly frustrated and inpatient that no new developments had occurred in the last four weeks but luckily, the six week mark was the turning point. I can climb in and out of bed much easier, I’m not in pain when I wriggle around on the sofa or in bed, I’m sleeping better, I don’t feel pain while ‘walking’ and, I can even hop now without shooting pains down my bad side. I think it’s fair to say that I’m almost ready to look after myself and therefore, Andy and my dad will be grateful to hear that their dutiful duties are coming to an end.

The bad news is that my wound is infected. You may recall in my last post that I would seek help if it worsened. Well it did. The infected part is just below half way down the scar so it’s not the same area, but it came out of nowhere. I woke on Thursday to find a small red and inflamed patch of skin that hurt if you pressed the surrounding area. During the day, an opening appeared immediately to the right of the scar with a tiny pocket of puss below.

Throughout the day it worsened so I attempted to cover it. I only had plasters available so I cut the two sticky side lengths off the plaster and placed it perpendicular to the wound. I called the surgery to book an appointment for the following day to have it assessed. That evening, I removed the plaster to discover the plaster had soaked up a lot of puss. After airing the wound, when I saw the nurse and doc it had scabbed over but the inflammation was still prominent. They agreed that it was infected and immediately prescribed me strong antibiotics. I've hypothesised that the infection was caused due to clothes and waistbands rubbing but I guess we may not know. A dressing was applied, the prescription and a load of dressings were bought, and then it was onto hydro. I applied a waterproof dressing and had a good session.

I wasn’t surprised about the infection as that was my diagnosis, but I was surprised that I would encounter this issue after five and half weeks, and how it was half way down the scar and not at either end where I’ve had previous problems. At least I caught it early and it would disappear just as quickly… Wrong. From the moment I took the antibiotics I didn’t feel well. Very nauseous, abdominal pains and a toilet related problem that rhymes with gonorrhoea. Not only that but the wound continued to worsen over the weekend, so first thing Monday, it was back to the surgery. The inflammation was very visible but the pussing has stopped again.

The Doc gave me a swab to take home so I could capture some puss for a lab analysis to ensure it wasn’t anything more serious. I was given a choice to start a different course of antibiotics to avoid the side-effects but then all the blood sweat and tears would’ve been for nothing, so I decided to see the course through.

There were a lot of differing opinions as to whether the wound needed dressing or letting it breathe so as usual, I decided to do my own thing. I discovered that every time I put a dressing on (to put clothes on and go out, or for hydro) it would open and puss again, but if I aired it (hard to achieve when you’re in a room with your dad), it would scab over. With this in mind I was airing it until I woke on Tuesday to find the infection was more inflamed and it felt like it needed to be drained. I showered and put an air-tight dressing on which did the trick. When I took the dressing off that evening, the lump was less than half the size and lot of puss had been successfully drained.

In the midst of all this, I did attempt to contact Banksey (who is obviously very busy rearranging people’s hips), but had little luck. My check-up is Friday so I’ll get his opinion then and in the meantime, I have my fingers crossed that the wound is on the mend again.

Apologies to the squeamish folk as there was no prior warning and the content was kind of messy ;)

Stay tuned to find out Banksey’s feedback. Peace out.

Week 3 & 4

Week 3 and 4 out of Hospital – Initial paragraph isn’t suitable for the squeamish.

Sorry for the lack of blogging – a little something known as Christmas and New Year kind of got in the way. Thankfully my self-ministered, anti-DVT injections have finally ceased and contrary to my early belief, I was still no pro towards the end. In fact, three of my last six injections somehow went wrong and I managed to get the needle stuck so I still had lots of bruised dots on my belly until Boxing Day. Four days before Christmas, I also had a bad encounter with my ‘dissolvable’ stitches. Whilst massaging my scar with bio-oil, what I thought was just a scab at the top of the wound, began to unravel and a thread appeared. I tugged it a couple of times to see if there was any movement and nothing happened and it wasn’t painful. Now, not only did I want to cut the thread to deter fiddling with it, but my thinking was that if I carefully cut the thread, my skin would just grow over the stitches and they would dissolve. So that’s what I did. However, I think I made it worse because I would tug at my skin to try and get a good look at what I had done, so when I woke the next day and looked (tugging once again), there was a teeny tiny amount of blood and puss. We were back in Reigate with Andy’s family, so luckily Eli was on hand to rescue the situation. The next step involved TCP, tweezers and a final waterproof dressing from the hospital allowance. Eli believed I shouldn’t have cut the thread and instead pulled it out (or sought assistance in doing so), so if there’s a next time, I will bear that in mind. I was having hydro on Christmas Eve so I planned to leave the dressing on until then. For the next three days I was petrified that I had caused an infection but luckily, when the dressing was removed, this is how it looked:

The top of the wound  (bottom of the pic as I took it) is in line with your average trouser/legging waist band, so I’m afraid to say, it’s a little red and scabbed again since taking this picture. It doesn’t hurt and I’m sure it will go down so if it worsens then I’ll seek help.

Before driving home for Christmas I had my first land-based physio since discharge and I was in desperate need. The outside of my thigh (IT band) was extremely sore and tight (even though I still had no feeling there, it was painful and causing knee pain), and my entire back was just agony. My back is quite lordotic and years of hockey have caused havoc so it wasn’t too surprising; especially having to rely a lot on my upper body while I’m on crutches. So I had some soft tissue and trigger point manipulation which helped massively. This will be a weekly occurrence after Christmas as the pain soon returns a few days after treatment.

Without a doubt, the most inconvenient and tiresome effect of this surgery has been sleep deprivation. I’m only really taking the morphine pills before bed to allow the potential for a good night’s sleep, but four weeks after surgery, I thought it would be time to wind down on the pill-popping. 15mg to 10mg was fine while in my own bed in Kingston, but the change of bed when we went to Andy’s house was hard to adjust to. Increasing back up to 15mg didn’t make a difference and with only having disturbed sleep of 5-6 hours (when in Kingston I would have 11), I was forced to make an adult decision… sod the pills and crack on with the alcohol consumption. It was Christmas Eve after all! The exact words relating to morphine and alcohol intake are: High risk of death. Don’t worry; I’m not an avid gambler. It was virtually 24 hours since my last morphine dose and with a little of Andy’s family’s encouragement I had my first sip of a vodka concoction. I didn’t feel entirely myself shall we say, so after half a glass, I left it there for the evening. I can confirm that my actions were probably not my cleverest and I did indeed have my worst night’s sleep ever. I found myself on some Father Christmas website watching where in the world he and his reindeers were. (If you suffered with insomnia on Christmas Eve, you would have done the same I bet). Having said that, my first official ‘bad’ day was Christmas Eve, so another possible reason I was wide awake could arguably been due to stress. I was getting upset during and after hydro that one of my exercises (hip extension) wasn’t getting easier, and moaning to myself that I would have a rubbish Christmas. Don’t ask me why it would have affected it. I was just over-emotional as I was just generally fed up and inpatient with my progress.

In actual fact, it was probably the best Christmas I’ve had. I stayed off medication and got merry on wine and champagne. We had a house-full of people consisting of three generations, the food was immense and we played loads of games. The alcohol was a great pain reliever for the most part, but I did do something stupid whilst not able to sleep on Christmas Eve. Prior to discharge, I was told not to lie on my front or on my operated side until at least week six. Now, if you’re struggling to sleep, it’s fairly normal to roll around and try a different position. Having only a choice of two was proving difficult so I thought I would try lying on my right with my knees bent… I allowed my legs to drop to the right slowly, and it felt fine. I let them drop even more, and still nothing. As they neared the bed, I shifted my left hip up and onto my right hip; so I wasn’t rotating my leg at the joint. Everything felt ok for about 30 seconds and then a surge of pain prompted me to lie flat on my back again. The pain didn’t subside. A few hours later and I was still very much in a lot of pain. It was a horrible vicious circle as no sleep equals more stress and more stress equals no sleep. You throw pain into that equation and you don’t even want to know what it equals. Either sheer tiredness worked it’s magic, or the fact that a sleep deprived post-surgery online forum recommended raising my head with more pillows did the trick as soon after 5.30am I fell asleep. I was in a lot of pain for the next four days, but this coincided with my alcohol-over-medicine mentality so it’s hard to know if I did any damage or was just lacking proper pain relief. I’m pleased to report that I’m now off the alcohol (minus two sips of champers on New Year’s Eve), back on the meds, and using two pillows, and have returned to sleeping for 11 hours. I am still very apprehensive about decreasing the morphine again, but I’ll wait and make a decision after my check-up.

My six week check-up with Banksey is next Friday so I’m looking forward to receiving some reassurance that everything is alright. I will have some X-rays taken to see if it’s healing properly (and hopefully not bent my screws) so that will be a relief. My biggest concern is how hard I find my hip extension exercise (standing tall and extending my leg behind me). The sciatica isn’t as bad, but I still can’t push my leg behind without experiencing a lot of pain. I’ve seen no improvements whatsoever and even in the hydro pool it’s tough and painful. All the other exercises have progressively got easier: I can lie on my back and flex my hip unaided (lift my leg up through bending at the knee whilst keeping my foot down); I can abduct and adduct my leg whilst lying in bed (open my leg out to the side and back); and I can sit/lie/sleep comfortably either on my back or on my left now with no pain and no pillow between my legs. – I completely believe that my progress is thanks to hydrotherapy so don’t dither over whether to have it post-surgery. As mentioned previously, minor concerns of mine are that I’ve damaged the bone healing process after laying on my right, and my incision healing process was affected with slight fiddling. - Two regrettable incidences that I know not to do second time around.

Natalia and I have been conversing over the holidays and I’m pleased that she’s doing well. She has also had a couple of incidences which is another reason why I haven’t panicked too much. It’s so great to have someone there to talk to about hip-related issues and find out if you’re recovery is on track. Obviously people recover at different rates, but it’s still great to gauge.

A month back, I thought New Year’s would be below average too, but once again I was wrong. Andy’s pal Matt and his girlfriend Helen offered to come over and we had the best time. Andy and Helen cooked up a storm in the kitchen and we had an amazing three-course meal consisting of seared scallops, pancetta, pea and mint purée and quails eggs for starter, mediterranean chicken en croȗte for main, and lemon, lime and passion fruit pavlova for dessert. Amazing wouldn't you say?

It was the perfect way to complete an amazing 2012! - Despite all the hip pain prior to and post-surgery, I would hands down say that 2012 was probably the best year of my life! 2013 is obviously getting off to a rocky start, but I'm still looking forward to what the year holds when these hip operations are over!

Xmas Day with my darling Andrew