I see dead people in my future.

I have had a bit of a time with planning my next operation. The timings all centred around Squeaky Cub and him finishing with the Spica. When we knew the Spica journey was coming to an end I contacted Johnathon Hutt at St Georges, only to find out that he was moving to University College of London Hospital to take up a position there.

This put timings out a bit and I had to think if I wanted change hospitals or surgeon.  After thinking I decided to continue with Mr Hutt and we moved hospitals and I saw him three weeks after he started in his new role.

To resolve the pain issues from the implant I am going to have a bone graft to hopefully distribute the pain that flares up and either reduces or removes it.  The pain is okay in the summer but winter it can be terrible. I ended up on my stick a couple days with a cold snap and it certainly was nagging.

This stem pain is a known side of the implant (S-Ron) and the bone graft should resolve it. If it doesn’t then I am going to lump it and chase a toddler, as the other option is a revision and I am too young for that. Neither I not Mr Hutt are keen on that option, because in his words, those replacements are hard to take out.  The graft will be donor bone, so prepare for dead people jokes and a push to donate your bits when you move on. (Tell your family.)

When I saw Mr Hutt, he was not sure what his waiting list was like and I have some plans coming up that we needed to work around. With some phone calls I sorted a date with the lovely scheduler and I have surgery on the 17th of September.  This could very interesting; the recovery shouldn’t be as long as a replacement but could be more painful to begin with. This could be interesting with a toddler!

I have had the pre-operation appointment and considering there has been no communication it is all go. Fingers crossed Squeaky is walking and we have begun planning, the logistics are a little worrisome.

Half way there.

Written a week ago...

I'm currently on a London bus with Squeaky and Mr Gin. 

We are off to the Royal London Hospital for the cast change. The end is nigh for our purple cast. It is good it is going. Squeaky is growing fast and it is obviously getting too small. His belly button was hidden when he first went in it. Now it clear of the top of the cast.

It has been a journey. It took two weeks for all of us to settle into a routine with the cast. It was not dissimilar to the first few weeks after he was born, sleepless nights and tears all round.

The shining light through those days was the check up after the operation. Ms Bijlsma was very pleased. So pleased, she waited at the door of her office to tell us it looked good. The x-ray shows the ball in a good position. The socket looks a bit shallow, so there is a possibility of a brace after. Only at night though.

The cast has been a learning experience at a very quick rate. It took a lot of nappies to sort out the right size. The swelling created issues to begin with. We also had a number of leaks. The general advice it to use a hair dryer to dry the cast. That was okay except Squeaky is terrified of noise, hysterical crying and shaking.

This has meant we have had to make do with flannels to soak most of the wee. This lead to smells and a two pronged attack of tea tree oil and a popular fabric deodorising spray. It still smells. So glad to see it go.

Later in the day:

The cast has been changed. Squeaky did well, he has very little reaction to a general anesthetic besides wanting cuddles and sleep. He is such a resilient kid, it makes me so proud. He was much better once he had some snacks.

Annoyingly the opening for his nappy was right over his bits which meant a trip to see the lovely plaster technician, Derek. He made the hole bigger but it is still awkward. Also the cast is white. Meh.

We were finished by lunch and as we had all been awake since 5 am breakfast was long ago so we headed to the restaurant. Squeaky and I shared lunch with him perched on my knee as we ate shepherd's pie. High chairs out just don't work.

We headed home, Squeaky with his pristine cast and Mr Gin and I relieved we are on the downward stretch of this journey.

Big hip, Little, cardboard box.

We have an operation date for Squeaky. The 5th of February. We have know a while but for a while it looked like we were going to have to move before the operation.

The end of October we had a consult with his Orthopedic Surgeon, Ms Bijlsma and I finally saw an x-ray. I really don't understand ultra sounds but I understood the x-ray. The left hip is obviously not in the right spot. The ball is forming slower than the right. The right is perfect thanks to the harness.

She explained the process and the slightly more extreme things that may happen. It is an open reduction, where the operate and move tendons and cartilage to coax the hip into place. One of the more extreme bits that may happen is a femoral osteotomy, which is where the femur is cut to release pressure on the hip joint. Personally I really want to avoid this as there chance of his legs being different lengths. Having grown up with a leg length difference due to a femoral osteotomy, I am very much hoping that we can avoid all this.

He will be in hospital at least one night with possibly up to four nights depending on how his pain levels are. He will be casted the same way as before, in a spica cast, waist to ankle on the left, waist to knee on the right leg. He will stay in that cast for 6 weeks, have it changed and then another 6 weeks. Squeaky will be curtailed but thankful as of this moment he is not really crawling and certainly not walking or even wanting to put weight through his legs, we are not sure if this related to the hip. Once he is out I am be wanting those little legs to working hard!

We are currently planning out what we need and how we will survive the 3 months. We have a bean bag and hopefully enough clothing to go over him and his cast. It is all starting to get real, I am doing my best to not to get nervous. We can deal with it comes but the build up is tough.

The Big Hip update, is I will be having surgery to sort mine when Squeaky is done. I have agreed that with MR Hutt.

Adventures in a Palvik Harness.

It has been eight weeks since Squeaky went into his Palvik Harness.
It has been a steep learning curve and also lessons in empathy with my mother.

We learnt early on that pee socks are important with little boys when trying avoid getting pee on a harness you are not meant to take off. We have got very good at wiping him down instead of bathing him. Although this comes more problematic when there is a nappy explosion. More so if you are getting ready to out to a party and you are in your favourite party clothes. Note if you pick up a baby have the legs their babygrow squish under your hand. Call in reinforcements and all wipes you can manage. That particular night was a two person job and taking velcro off and sponging off poo was not as fun as it sounds!
We found dresses work really well especially with the tricky nature of nappy changes, to be fair nappies have been the bigest challenge.
Squeaky himself is pretty happy, he kicks his legs like a footballer and is happy.  Holding him feels odd and you have to careful of where his legs are and we are no longer comfortable sitting in the rocking chair which is annoying.

Our first check up had been delayed a week and we arrived to a doubly busy clinic. Squeaky was scanned and it was felt that his right hip was improving but the subluxated left hip had not. This was gutting news. We took the harness of there and Squeaky was smelly, he had not had a bath for three weeks. We booked in the next consultation, feeling very sad and lots hugs given. Mr Gin and I headed home, with a smelly Squeaky, on a London bus in our own bubble of silence as we absorbed the news. On the way home one the surgeons we had spoken with rang, she had compared Squeaky's initial ultrasound with the one taken that day and said there was a small improvement. She asked that we come back in two days and get Squeaky fitted into a Harness again. We agreed.

We took him home and gave him a much needed bath. He was not all that happy as he stretched his legs out but the bath soothed his legs.  Out of the harness he felt tiny and delicate to hold.

We returned to the hospital, early in the morning, to be refitted. Squeaky was a delight, smiling and giggling and proving that he is resilient by not changing his behaviour over the next two weeks as we settled back into harness routine. We went back to the hospital in two weeks and had another check, again they felt there was minimal change but compared the ultrasounds there in the clinic.  They left in the harness and off we went, knowing that there was improvement but it was very slow and we were looking at  a possible three to five months in the harness.

We had got good at removing the harness by watching the professionals and marking the harness. This meant Squeaky got a bath once a week and when we had a poo explosion a quick wash. A little more civilised.

We went back for the seven week check last week. Again another ultrasound with minimal change. Two surgeons went off and compared the four ultrasounds. The right hip is looking like a normal hip but the left is showing minimal change. It is still subluxated. They recommended that Squeaky come out of the harness and he is booked in for a closed reduction.

The closed reduction will occur in July. They will inject a dye into the joint and manually manipulate the joint into the right position. They check if there is ligament pulling at the joint, if it is, they will cut it. Then they will put him in a spica plaster cast, that goes from his waist to the ankle on the affected side, knee on the other. This is done under general anaesthetic.

We are currently harness free and having to do another wardrobe exchange as a lot of the clothing that went over the harness swamps him now.  He is happy, chirpy self although the first night home in pain due to his legs stretching out.

It has taken me a week to write this because the escalation of Squeaky's treatment is upsetting. I am disappointed the harness didn't work, guilty that my genetics have bred so try and frightened about putting me precious little boy through this. He will be six moths old and having a general anaesthetic, scary. I really hope this works because I don't want him to end up like me and able to remember treatment because it went on so long.

Right now I am trying to focus on enjoying my delightful little boy and introducing him to his Australian grandparents. After they go, we focus on providing the best care and outcome for Squeaky, his hip and long term health.

Quilting for the win.

Mum trims the binding.

Three weeks! 

Crunchy hip was evicted with extreme prejudice by a fellow named Hutt! There is a movie in there, I am sure.

I have a couple of in depth posts in my head and have started some. So, looking forward there will be a post about the actual exercises I do,  medication adventures, packing your bag for a hip replacement , hacks for stopping your crutches falling over and hopefully a video on putting on TEDs!  

The reason for lack of real post today is my mother and I have been doing some sewing and have almost completed a patchwork quilt. When she offered to come over to help out for a month, Mum asked if there was a project I would like to do. I wanted to finish a quilt that I started three years ago. It has been waiting for this time it feels. It was pieced together, I had wadding and backing but do to not being confident, I was yet to assemble it.

Once I was feeling better and bit more mobile, Mum got us moving and taught me to put it together and then we quilted it and today the binding went on. I am very proud of it. 

The big bonus is that if I am sewing, I have to move around. Using the machine is not too bad but have to be careful with the angle I use the pedal. My mother is a master quilter and she was more than happy to help and get me moving to finish it. It is a bit of rough and ready, not really straight but prefect for a snuggle quilt and being dark, if there is a red wine spill, it will be okay.

And it is done!

There has been some eventful few days, a little recap of Thursday and Friday.

We were all up at 5:30 am and out of the house at 6:45 am to be lead along a meticulously planned journey by Mr Gin. My mother and I sort of sailed along in his wake and we embarked on the 2 hour public transport trek to Epsom.

We got there in plenty of time and played in the star trek chairs before Mr Gin and I headed up to the Pre surgery unit. There we had to answer all the questions and then meet the anaesthetist, the registrar and finally Mr Jonathan Hutt, the man of the moment.  The anaesthetist, Mr Singh was lovely, very through and then explained that they generally do an epidural instead of a General Anaesthetic.  This was a bit of a new one for me, it is not something I have done before and was feeling a little apprehensive about, I had no experience of them and frankly major surgery is not something I want to listen to. In the end he convinced me and I opted for it with heavy sedation.

There was an x-ray of the CAD program that Mr Hutt had used to plan the drawing. When Jenny the registrar came in to mark my leg, I added the smiley face to add good luck to the surgery.  Mr Hutt explained what he was going to do and that we were looking at two to three hours of surgery and possibly a blood transfusion.  The words complex and difficult were bandied about but Mr Hutt was confident and everyone I spoke to, nurses and other staff said he was very good.  When speaking with medical staff I have learnt they don’t give high praise unless it is deserved, they are more likely to say just good or okay if they are not that impressive.

I was wheeled into surgery after saying good bye to Mr Gin. In the theatre there was an array of cloth covered trolleys and a bed for me. On my side and bent into an uncomfortable position I exposed my spine (and bum) and once in position sedated. And that is it.

I woke in recovery feeling pretty good in the grand scheme of things, not the normal heavy nasty feeling after a general. The leg felt pretty good too. Very numb as they inject the area with local anaesthetic and touching your own leg and not feeling it is very strange. Mr Hutt and Jenny checked in on me. He was pleased with the outcome and there was one minor hiccup . I have a piece of wire around the femur because a crack developed. My femur is not as big as he expected.  He was very pleased with the outcome and felt it should last me 20 years!  That is great news.

The other big surprise was that he did manage to take the screws out in one piece! And I have them, my companions for thirty years and they will continue, I think the form of earrings! (Need to get my ears pierced first.)

Once I had something to eat I was taken down (or up) to the ward. I was still feeling fine, very unusual, legs a bit tingly and the dead wood feel of the local still happening. I had chosen to have a catheter for avoiding the dreaded bed pan. This is also a weird experience and one I am not sure I want to repeat again.
My Mum and Mr Gin met me on the ward, a three bed with two older ladies, E, 80 having a hip done and M, 72 having her knee done. I was given morphine and unsurprisingly that made me a little spaced and chatty. All in all I felt okay, not completely comfortable but not as uncomfortable as I thought. My leg was a remarkable red colour from the disinfectant. The wound site is covered in a water proof bandage and stuck together with glue! The bruises are amazing and continue to be so, high lighting the old scars running through them.

They left and I was exhausted and ready to settle for the night. The lights were bright and I could not get comfortable. My right knee became more and more sore. Once the lights finally did go out I desperately tried to go to sleep but just could not settle.

I rang the bell and the night nurse gave me some morphine which helped a little and I waited an hour and was almost in tears by this stage. She hooked up a paracetamol drip and I finally got some sleep, about 3 hours worth!

The day started early as they do with hospitals.  All three of us started the same routine, breakfast, and the bed baths. The amazing red disinfectant was removed and the bandage checked. The sexy TEDS (dark green stockings for stopping my legs swelling and halt blood clots forming) were applied with a bit of wrestling.  Then the physiotherapy team came in and there was in bed exercises and then there was Zimmer frames! Walking! You read that right. Up walking in about 16 hours of surgery. Not that painful as there was still local anaesthetic rattling the joint.  Although very awkward with the catheter.

The oddest bit for me is it felt all cock-eyed when I stood up. Mr Hutt had almost made me completely level. A very surreal and distinctly odd feeling. It has taken my brain a little time to catch up.
There was more physio after lunch, walking with a Zimmer frame and generally a bit of exercising and drinking all water because if you filled it enough you could get it out.

I was taken to x-ray which proved to be a difficult, I felt very much pushed around and put into an EXTREMELY uncomfortable position that upset me a bit. But I did get to see the x-ray and it looks amazing. A nurse came in and told me that Mr Hutt was pleased with the x-ray.

By Friday dinner time I was pretty over the catheter, uncomfortable and annoying and I was drinking heaps and filling it up. The Physio was happy I could walk myself to the toilet. I asked the nurse if I could get it out and she said I had to wait till morning. I was a little disappointed with that and willing to wait morning but it was driving me bonkers. The head nurse then decided to do it then and there because she felt that I would be okay. Not the most comfortable experience but very thankful for the nurse to get it out quickly and understand that I was over it.

My visitors went and I collapsed for the night it had been a long couple of days.

Nervous, nah.

Currently riding the Victoria line tube with two suitcases, my mother and Mr Gin also a percentage of London's tradesmen as they head to work. It is early, there are cheap energy drinks being clutched and gentle body sways of the people with the ability to sleep sitting up.
Today is the day. We are heading to Epsom to check in. Surgery is happening today.
I got asked at work if I was nervous a while back, the answer was no, bloody petrified but not nervous.
I've had enough operations to know what to expect, generally, I'm pretty good with general anaesthetics and I've researched the facility well enough to be comfortable they know what they are doing.
I'm petrified of the other side. The pain factor of having bone removed is unknown, the ability to bounce back is unknown and although I know the percentages of complications, they still scare me, a lot.
The threat of nerve damage and infection are looming shadows. Nerve damage, especially of the sciatic nerve worries me a lot. There is no guarantee of its location and in my case if it is not caught up in scar tissue. It is going to be stretched and nerves really dislike this, really, really. I have a friend who has periodic bouts of sciatica and to have that all the time is something I would struggle with.
Infection causes all sorts of mayhem, it may cause a revision, having to fix or put in another replacement. At my age, 41, I can not afford that. I'm only going to be able to have three possibly four replacements in my life, they last about 15 years and my grandmother lived to 93. As you can see, I really want avoid a revision.  I have had a friend who had revisions done in her 40s and the effect on her mobility is affected to a life changing extent. Again an outcome that I want to avoid at all costs.
So, here I am, an empty tummy and dry hands because no food since midnight and no moisturiser allowed.
At midday my life will change and hopefully Mr Hutt  will make it for the better. I have list of things I want to do when this is over.
So, not nervous but suitably scared of downsides to work bloody hard at avoiding them.

Slow, slow, lightening fast.

Friday afternoon was a touch stressful, I got a phone call from Central Booking at St Georges, offering me an appointment to see a consultant on Monday morning.

It seems that the email to PALS worked, but I had no idea it would be that short notice.

Sadly it is not with the surgeon I originally asked for but it is with Phillip Mitchell, he has written lots of papers on the 'nitty gritty' aspects of replacements, he also seems to have a reputation for taking on complicated cases and ones that other surgeons won't touch.  I am pleased with this, because although my hip is very odd and looks like it was built by a blind plaster, it is not a complete mess, nor shattered and not a result of other trauma. The other thing is that he does almost double the national average hip replacements. As long as he or Mr Bridle are doing the surgery, I will be happy.  (He is also younger and does a lot revision work and maybe still working when the left finally goes.)

I have a long list of questions, I am EXTREMELY nervous. I am doing this initial consultation solo. I am making sure I wear sensible underwear, because no doubt, sans trousers hobbling and scar looking will be needed.

*gulp*

Almost complete obliteration

The, the past month, five weeks has been tough.

No movement on a consultant appointment, three weeks off sick, read the x-ray report and played with lots of medication. Time for a catch up!

Things have been going down hill for a while, stress migraines popping up, lots of pain killers, still just paracetamol and ibuprofen and curtailing life in general. Jobs taking longer, rests are longer and I generally have felt pretty low. We had the Victoria tube line interrupted because of engineering work, this meant a longer, more crowded commute and having to use my cane a lot more than I would like. Work knew but really, the understanding of my commute and the knock on effects were not there. This was frustrating. The pain levels increased with the commute and my mood plummeted. Even when the commute went back it, the body didn't bounce back.

Exhausted, in pain and depressed, I took some sick leave, citing hip pain but also out of cope. I figured some better painkillers were needed. A phone call to the doctors to sort that out and in that conversation I was told the xray report. That there is almost complete obliteration of the joint space. Obliteration, not a word you want attached to your body.

That was a gut blow, I cried a lot, I cried at my supportive boyfriend, I cried into my cat's fur as they lay in a cat puddle, twisted together. The brave face cracked. I realised work was a part that had to be taken out of the equation. It was not helping in the physical management and I desperately needed head space.

After a week, I physically saw a doctor and he signed me off work for two weeks. Also told me to up my new medication,naproxen and prescribed tramadol. He also said chase the consultant appointment, because over a month was certainly enough waiting.

I did that, and spoke with two people at St George's who said they would call me back, but didn't, I did give them a week each to do this.

So, the third try it was recommended I contact PALS, which I did.  More on that outcome later.

I returned to work and had a meeting with my line manager and his manager, I explained the drugs and generally that sitting all day and the commute is killing me.  I have said the same thing to Occupational Health and they have backed me up with a report suggesting one day a week working from home.  This would break up the tube travel which I am finding increasingly difficult to deal with, it hurts to sit and stand on the tube and the sheer amount of people is nuts and they knock into you!  I have a meeting next week to see if the team can do that, if they can't I am not sure what to do.

One positive has been a sports massage that seemed to loose a lot of the muscles around the hip and in my back that has reduced my pain, a lot!  Swimming is still helping but currently shopping for slip on shoes! Such an old lady!

It is now down to choice.

I have two names, that I am trying to decide to go with.

I have selected them on their reactions to my email.  the ones, who just sectaries responded to, I have dismissed, ones that seemed this will easy, I have dismissed.

I have not looked at the surgeon statistics as a wise friend pointed out to me that, all of these top surgeons will have higher revision rates as they do lots of no standard replacements.  I have checked out their private practice, publications and general googling for stories, blogs etc.

First is Mr Briggs.

He is located at the Royal National Orthopaedic hospital.  His response indicates he may not have looked at the x-ray but I have emailed for clarification.  The hospital has very strict referral guidelines and I  have had three names, who practice there.  Mr Briggs has said that I can go to RNOH as I am a complex case.
At the moment, even without the slight confusion if I have had a replacement, I am leaning towards RNOH, because there are a lot of talented people there.

Second is Mr Bridle.

His response was the first and swift.  I am a gut person, and my gut liked his response. Measured and careful, without arrogance that comes through some times.  He is also adverse to resurfacing.  St Georges have a very good reputation and both Surgeons I contacted there were happy to see me and come up in top ten surgeon article from a few years back.

Both operate out of hospitals that could be difficult to get to but RNOH have a central London spot too.

So, who will I choose?  I will have to go to my GP at the end of the week armed with a name.  I really don't know.

The Joy of overdoing it.

Today I am at home, not at work.
Why?  Because everything was sore this morning and the thought of public transport filled me with horror.
Overdoing it meant, sitting in training on non office chairs for five hours.  Checking out some art for an hour and half and walking down a hill to the tube.  Frustrating because I could have done that easily 9 months ago.

But it is not all doom and gloom.  On Monday I spoke with a lady a decade older than me who had her hip replaced.  She is very happy with it.  The lead up to the replacement is a bit of a horror story and confirmed to me that starting now is a grand idea. I have been told, 12 month wait is not out of the question.

A member of the WI has also backed up my thoughts on a Stanmore surgeon, so I have contacted him.  Additionally I have two other surgeons contact me.  I am currently reading reviews and as much literature on the surgeons who have agreed to see me.

Then off to a GP, to get the consultation.  It is moving quite quickly!

The first bite

Today has been interesting.  I really did not expect an answer straight away from my email.
I had two this morning, that is 50%.

The first response was from a private clinic, headed by the women who replaced the Queen Mother's hip. Unfortunately, their recommendation was for a fellow at Stanmore, a hospital I would struggle to get an appointment with.  I have contacted them directly, and I will attempt to contact the suggestion just on the off chance.

The most positive response comes from Mr Simon Bridle, listed in the Daily Fails top hip surgeons. He also has a great website and does not advocate resurfacing.

His response is as follows:

I would be very happy to see you

Surgeons have done a good job and both hip joints are in right place, so joint replacement will be relatively straightforward

If you would like appointment I'm sure Diana can arrange it

Simon

I am very, very pleased with this response, it means Mr Dickens did do a good job, just as we thought, it is really nice to discover this.  I am also pleased he did not turn around and say no straight away.
I have a few more leads to chase and then I will be looking at failure rates of each of the surgeons.  Such a boring thing but needful.