Diary of a Scoliosis Dad

The End

2010-07-22T20:56:00.001+01:00

One year on from her original operation and Amy had a checkup with her surgeon this afternoon - he's totally happy with her. She's officially straightened out, fixed, discharged, signed off, etc.

Her Facebook status now reads, "It's official. I am no longer a cripple". Probably not the most politically correct thing she's ever typed, but after what she's been through I think it's allowed just this once.

The End.

Embarrassing Bodies on Channel 4oD

2010-05-18T22:06:00.008+01:00

Just watched Channel 4's Embarrassing Bodies on their (excellent) 4oD service. They've run a pretty empathic feature on Jade (aged 14) with a curve approaching 60 degrees.

Click the title above or here to view.

I warn you it's not for the faint hearted (if you click the link there are some pretty graphic rushes of the op itself). It probably wont be a good thing to watch if your daughter is about to undergo surgery.

But ... it's a real good news story and I'm staggered by how small and precise everything appears to be. The rods are tiny! No wonder they never set off the x-ray machines at Manchester Airport at Easter.

(For some reason, the link will stop working mid-June (ish) 2010 - I don't know why).

Goodbye 2009 ... !

2010-01-10T19:16:00.002Z

I know if you look at it logically it's just a date change, it happens 365 times a year, but New Year's Day 2010 is a big milestone, and for a whole heap of reasons I wont be sorry to see the back of 2009 in a hurry.

Looking back over the year, from March 2009 when Amy was first diagnosed with Scoliosis, the frantic worrying we did as parents when we were told she needed an operation, through watching her go through surgery in the summer that she faced so bravely, and her subsequent recovery, which she so typically took in her stride, we've all been through a lot.

Watching her now, it's easy to forget all this, and of course she still has some healing to do. I let her go sledging down the driveway the other day. I just forgot she wasn't supposed to be doing such physical stuff whist the bones were still still grafting.

But things are going really well, and some 10 months after diagnosis, and almost 6 months since surgery, we've got our little girl back.

5 Months Check-up

2009-12-13T12:41:00.003Z

Amy went back to see Mr Williamson today for a check-up, some 5 months after the original operation to correct her spine. The write-up from Brad's letter to our GP is as follows:

"I saw Amy again today. She is doing very well, she is a good shape and has no pain. Her back is still a little stiff but I have encouraged her to mobilise. I will see her again in six months and take a further x-ray."

2 Months On - A Quick Update

2009-09-21T15:02:00.003+01:00

I can't believe it's only been just two months since Amy's operation. Things have settled down really well. Amy is back at school, starting on time with the rest of her year a couple of weeks ago, and is apparently not suffering from any of the tiredness we were anticipating.

I wrote a letter to the school's "medical co-ordinator" (they didn't have those when I was at school) explaining what she had had done and asking that she be excused PE, be allowed to leave lessons a couple of minutes early (to avoid being jostled in the corridor), stating that she may need help carrying her books, etc. The school have been really supportive - Amy even has a special card to prove to the teachers that she had a condition that may need certain support. Amy's never really liked PE, but the novelty of being excused seems to be giving way to boredom. The teachers have got her refereeing, evaluating the other student's performance, that sort of thing, which I don't think she necessarily enjoys either.

The residual smaller curve in her upper spine seems to be straightening out all on it's own. She's walking a lot easier now (we did three miles yesterday and it didn't seem to phase her), and although she still gets in and out of the car a little gingerly, she's no longer using cushions for support, nor is she dependent upon any form of pain relief whatsoever.

3 Week Post Operation Check-up

2009-08-13T20:05:00.002+01:00

Amy went back to the hospital today for her post-operative check-up. It's been a little over three weeks since she had the operation.

Mr Williamson was pleased with her back. We'd been worried about a smaller curve towards the top of her spine that seems more obvious since the main curve was corrected (you can actually see it quite clearly on the "after" x-ray in my earlier post). Brad said this would probably correct itself over time, but that there was a 10% chance that she may have to have another operation in the future to correct the upper spine.

She still gets very tired after walking so they've taken some blood to test for anaemia (easily fixed with iron tablets). The numbness in her lower back is improving and Brad just restated that he had severed through a number of small nerves when he made the incision, this was normal, and would reduce over time. She's also all but stopped taking pain relief now, too.

Amy coughed when she was being examined so was sent for a chest x-ray to determine if the old chest infection everyone was so worried about immediately after the operation had returned. The x-ray came back clear, however.

We've got to go back in three months for another check up and more x-rays to see how things are developing. So all in all, good progress, but with some on-going worries about the smaller second curve in Amy's upper spine.

Numbness

2009-07-30T16:40:00.002+01:00

Amy mentioned she had some numbness in her lower back today. There seemed to be two small areas below and to the right and left of her scar, about the size of a tennis ball, where I could scratch her skin and she could feel nothing. I phoned Mr Williamson's office for some advice and he called back later to explain this was all normal. Otherwise things continue to progress well with her mobility, although she continues to need a strong pain killer to get her going in the morning. She's due back at the Spire for a routine check-up on 13th August.

Operation Plus 1 Week

2009-07-29T09:48:00.002+01:00

It's now been just over a week since Amy's operation and she's doing brilliantly. She's now sleeping through at night, although the big teenage sleep-ins seem to be on hold for a bit. I think she still wakes up in pain in first thing in the morning. Although this is easily ameliorated with paracetamol (or tramadol if the pain is bad), it seems to stop her getting back to sleep. The first two days she was out of hospital there was no holding her back and she was continually asking if she could go out for walks. However, she over-did it yesterday and spent a lot more time resting than she has of late - this is normal and the tiredness will continue, we're told, for a number of weeks yet. Her posture is increasingly good and she's walking with more ease as the days go by. Most of all, we've got out little girl back - her happy pre-op personality has now returned :-)

After

2009-07-26T20:54:00.003+01:00

And here's the after image ... there's clearly a lot of metalwork in Amy's body now, but you simply can't tell without an x-ray.

Looking from the outside her back is now perfectly straight, and Amy has no sense that there's a couple of titanium rods, various screws and mysterious spikey things attached to her spine. It's a huge testament to modern medicine, materials, the skills of the surgeon, Brad's team, those who cared for her, and the resilience of children.

The other really surprising thing is that we measured her when she went in for the operation on Tuesday morning, and again when she came home today (Sunday) and she's grown 35 mm (I think that's around 1.5 inches) in 5 days as a result of the operation. Amazing!

Before

2009-07-26T20:30:00.007+01:00

Here's the actual "before" x-ray picture of Amy's spine.

I'm still staggered by just how curved her spine was before the operation, and still can't believe we never noticed it before we did, or that it progressed so very quickly.

There's a really simple test you can do to spot this (just get your son/daughter to touch their toes with a bare back and a curve of this size is pretty obvious).

Amy's Out ... !

2009-07-26T20:23:00.002+01:00

Sunday. Five days after the operation and Amy was released from hospital today! She still gets tired after exercise, of course, and is dependent upon some pretty strong pain killers, which also make her drowsy, but she continues to make really good progress and is increasingly upbeat.

I'm sure we left hospital with more stuff than we bought (helium balloons, chocolate, sweets, etc.) but we packed it all into the car, surrounded Amy with pillows in the front seat, and I gingerly drove her home, carefully negotiating the myriad of speed humps and potholes in the roads around the hospital. It took forever.

Operation Plus 96 Hrs - Getting Back to Normal

2009-07-26T20:03:00.002+01:00

Today has been a good day. I had a lovely email this weekend (thanks, Heidi :-) explaining how her own daughter hadn't really come around until 4 days after the op. Up until this point I was secretly worried. Most of the time I'd personally spent with Amy since the operation she seemed more down than up, just not her usual happy self. All understandable, of course. However, this afternoon she seems to have really turned a corner and her old personality is beginning to shine through.

I was walking her up and down the main ward corridor and she was positively scurrying along, actually asking if she could go for a walk every half hour or so, seemingly relishing her re-found mobility. The ward corridor just didn't seem long enough. We'd just done another couple of circuits and one of the physiotherapists, noticing how mobile she was, called out, "Amy!". She asked Amy if she was up for trying stairs, and Amy just took it all in her stride, going up and down like nothing was wrong at all.

I left the hospital a lot happier this afternoon. Amy is still somewhat dependent upon her mum for help with washing, etc., so I wasn't due to stay with her at the hospital overnight. Later that evening, however, Amy called me and asked if I'd like to stay the night and give her mum a break, which I did.

Brad Williamson and the physiotherapist are now both happy for her to go home tomorrow, which is just the best news. The change in Amy in the last 24 hours has been incredible. We've had a really nice relaxed evening, watching "Duplicity" (Julia Roberts, Clive Owen, impossible plot) on DVD.

Wide Awake!

2009-07-25T11:57:00.003+01:00

Amy slept from 11 pm to 3 am this morning, whereupon she was wide awake, chatting happily away to her mum. She then slept from 7 am to 7.30 am. She's had the dressing changed on the main operation site as well today, and Tracey tells me the stitches look brilliant. She seems much better this morning and the staff are taking a harder line with her, insisting Amy gets out of bed and sits in the chair to eat.

Operation Plus 72 Hrs - Big Steps Forward

2009-07-24T17:06:00.002+01:00

Day 3 and Amy's progressed to walking to the end of the corridor, a distance of around 10 meters, and back, of course, which is absolutely brilliant. She's also able to move around the bed a lot easier, get in and out, and has started to sleep on her side which seems a lot more comfortable for her.

The bad news is she's still on O2 from time to time and the staff continue to worry about her chest. Amy's still sleeping an awful lot, although I suspect this is just a normal part of the recovery process, and all that walking around must take it out of her as well.

Amy's room is steadily filling with helium "get well soon" balloons (Lucy and I will have fun inhaling those when she leaves), cards and chocolate. Brad Williamson's been in and is talking about discharging her at some point soon, potentially as soon as the weekend. It's currently Friday, so a weekend discharge feels pretty quick. If I'm being honest, both Tracey and I feel happy that at the moment we have the safety net of the hospital staff there. We'll see how her chesty cough progresses over the next few days and make a decision then.

Operation Plus 48 Hrs

2009-07-23T20:59:00.002+01:00

It was eerily quiet last night at the hospital and I didn't get a lot of sleep. I was on the 1st Floor of the hospital (the same as Amy), but she's in a completely different wing, a walk and a couple of lift rides (up and down) away. I showered like a zombie, had vending machine coffee to wake me up and went off to see her in HDU around 7.45 am.

I bumped into one of the HDU nurses in the corridor going home after her night shift. She said Amy had been turned over to lay on her side in the night, which was good, and had had a comfortable night. When I arrived at HDU Amy was asleep but woke up pretty quickly and gave me the biggest smile. She said she was OK but didn't sleep that well.

The HDU staff said they were going to take all her drains, probes, etc. off this morning (which means no more epidural or morphine) and move Amy up to her room on the main ward, which is great news. The staff in HDU are superb, but it's obviously a very clinical and efficient environment and it will be nice when she's back in her own room and we can be more like a family again. Breakfast arrived and Amy had some toast which was good.

I called Tracey and assured her everything was OK. She'd slept really well and was off for physiotherapy herself later (she'd had a couple of operations on her shoulder a few weeks back and was only just beginning to recover properly, herself). She'll be in just after lunch.

Brad Williamson came in to say hello and said Amy was "tough". Then they started removing the various drains, etc. from Amy. She never made a sound, bless her. She was so brave! I saw her back for the first time since the operation and it just looked perfectly straight, no sign of her rib hump, with a thin dressing covering her main operation site. When they had finished she just looked so different without all those wires and tubes all over her. Within a hour she was back in her room, although I sensed she was very tired and not as chipper as the previous afternoon. This is normal at this stage, apparently.

The postman came and delivered a series of "Get Well Soon" cards, which we opened, and her Grandma and Granddad arrived to visit just before lunch. It was obvious within a couple of minutes that Amy's granddad was handling this about as well as I was (i.e. badly, but stiff upper lip and all that) whereas Tracey's mum just took it all in her stride.

Tracey turned up around 2.30 pm (Amy was well pleased) with more presents and card from her friends, and the correct teddy (apparently I'd bought the wrong one).

It was a big day for physiotherapy today. They got Amy stood up twice and made her take a few steps - a big milestone! I know it's all part of the recovery process and for Amy's own good, but I just wish they'd let her sleep for a couple of hours. She'd not eaten much all day and I think the second episode was just too much.

They also started getting worried about a chesty cough Amy seems to have developed, so the focus has been on getting her sat up and doing a series of breathing exercises every 15 minutes. Mr Williamson popped back in and gave Amy (and I suspect the nursing staff) strict instructions to focus on her breathing. She's also on a nebulizer (breathing moisturised O2) from time to time to try and loosen her chest. If you have a dodgy back and develop a chest infection, the need to cough can obviously be quite painful. Now the morphine and epidural have been discontinued Amy's pain is being controlled by drugs administered orally, which I suspect are not quite as effective, plus Amy's no longer got the ability to press a button to get a "hit" of on-demand pain relief.

Operation Plus 24 Hrs

2009-07-22T22:45:00.003+01:00

I picked Lucy up from her sleepover this morning, came back to the house (I really should be more organised), threw some stuff in an overnight bag (including the teddy Amy had asked for) and left again, all within the space of about 20 mins. We had a quick lunch at Loch Fynne (I bet I've spelt that wrong) in Knutsford, bought Amy a "Get Well Soon" helium balloon and set off for the hospital.

I was a bit worried about Lucy seeing her elder sister all wired up in HDU but she took it really well. Amy was actually pretty chipper and upbeat, especially since it's only been 24 hrs since the operation. She was actually quite jolly. Clearly still very very tired, but on good form :-)

Physiotherapy had already been in and got her stood up already. They don't mess about.

Tracey was absolutely shattered having spent the night in the hospital on a camp bed. She took Lucy home - my turn to stay with Amy tonight. Being alone with your daughter in HDU isn't easy. You do what you can, but at the end of the day this is limited to administering drinks through a straw and talking when Amy was up to it. You feel pretty useless. Amy drifted in and out of sleep constantly, looking so small surrounded by all that medical equipment.

Amy fell asleep at 7 pm and although she woke briefly every hour or so, was still asleep by 10 pm so I too went to bed. The hospital have been great and sorted me out with a room on an empty ward .

The Morning After

2009-07-22T08:54:00.003+01:00

I just spoke to Tracey who's been at the hospital all night. Amy's much better this morning. Most of the swelling in her face has gone down and the full oxygen mast has gone, replaced with small nasal tubes. She's still very drowsy, slipping in and out of sleep all the time. They're going to try and get her to eat some toast for breakfast (she was obviously nil-by-mouth since 8 am yesterday so hasn't eaten for 24 hours). They'll also turn her over so they can change dressings, etc. She's due to spend another couple of days in HDU before being released back to her room. I'm really looking forward to seeing her again.

Can't Sleep

2009-07-22T04:11:00.002+01:00

It's 4 am, the morning after Amy's operation, and I can't sleep. I keep thinking about Amy in HDU. Her face was quite swollen (the result of fluid retention as a result of being face down for four hours during the operation) and she had lines and wires everywhere. A drip, another one to monitor her blood pressure, one for pain relief (which she could self administer to a point by clicking a button), an epidural, a clip on her ear to measure the oxygen in her blood (this glowed red for some reason), an oxygen mask, wires to monitor her heartbeat, something to monitor her breathing (I think to detect apnea), the usual "ports" in the back of her hand to enable the staff to administer drugs, a drain for the operation site itself, a catheter, lines supplying warm water to a "Bearhugger" - some sort of jacket to keep her warm - the list goes on.

She's clearly in really good hands. Jane the HDU nurse was continually monitoring things and reassuring us every time a machine made an unusual beep. In the hour or so I was with her she made a dramatic recovery, from being initially sick and unable to speak to remembering all the banter the anaesthetists were having with her just before she was put under, having a little joke, and asking for her favourite teddy to be bought in from home. She also asked if she could go and watch "House" which a patient in a side room was watching. It's one of her favourite TV programmes about an acerbic attending physician in the US.

I left around 2130, called grandparents to update them and drove home. Lucy phoned around 11pm from her sleepover to see how her sister was (she's sweet). We'll go for lunch later, then I'll take her in to see Amy for a bit. It's my turn to stay over at the hospital tonight.

Operation Done

2009-07-21T23:12:00.003+01:00

Just got in from the hospital. A very quick post to say Amy has now had her operation to fix her curve and seems to be doing OK. Mr Williamson said everything went absolutely to plan. She's in the high dependency unit (HDU) wired up to all sorts of stuff, is slowly coming round and becoming more chatty by the hour. Too drained to blog any more. Just glad that bit's over. Off to try and sleep. More posts later.

It's Operation Day Today

2009-07-21T11:46:00.001+01:00

Well, today is the day of Amy's operation, which is scheduled for 1400 hrs. Amy seems to be the only one of us to have had a good night's sleep, describing it as 9 out of 10 (I'd be happy with a 5 right now). We were at the hospital for 0730 this morning, checked into her room, and went through the usual pre-op tests. Brad Williamson arrived shortly after we did on his push bike in full cycling gear. On the back of his cycling vests were the words, "Can You Cut It?". I seemed to be the only one to find this humorous in a dark sort of way. Shortly afterwards a nurse arrived and gave Amy a red wrist band with the word "HORSES" written on it, to go with the usual white name tag they give you in hospitals. It took a while for us to realise that a few weeks back we'd completed a pre-admission questionnaire. One of the questions asked if there was anything Amy was allergic to. The only thing we could think of was horses (their hair makes her sneeze), so we put that down. The nurse assured us all the horses had been removed from the hospital just before we arrived. I've just dropped "little" sister Lucy off at her best friend's house for the night and am off back to the hospital now to see her before they start. I'm feeling numb already :-(

Pre-Operation Consultation

2009-07-02T17:09:00.002+01:00

Amy and I went back to the Spire Manchester today for a scheduled visit in advance of her operation on 21st July. We were there for three hours.

She had a number of further x-rays taken again, followed by a session with Brad Williamson. He was very reassuring. He peered knowingly at the x-rays, drew a series of lines on them to measure the curve, and confirmed it hadn't got any worse over the last few weeks. He gave Amy a physical examination, and then explained a bit more about the procedure itself - effectively attaching two titanium rods about 20cm long to either side of Amy's spine to correct the curve. Cosmetically, we were told the curve should be unnoticeable afterwards in a t-shirt, and similarly (to the untrained eye) when Amy's on the beach. She'll have a vertical incision about 20cm long down the centre of her back. This will be nicely sewn together at the end of the operation, but the extent to which this is visible later in life will depend on how it heels over time (a function of Amy's DNA).

We were expecting an operation time of about 8 hours, but Brad hinted this would probably be less, suggesting something more like "half a day". He wouldn't commit to a precise time in hours, explaining that if he says it will take 4 hours, and for whatever reason it takes 5, he's going to have two very stressed parents pacing up and down during that final hour. Nonetheless, it's clearly major surgery and he restated the risks - post operative infection (true of all operations), blood clots and a less than 1,000/1 chance of paralysis, which if it happened would possibly not be permanent. The scary stuff done we both signed a consent form and went off to see the nurse.

The nurse (Trish) was lovely. She took Amy's blood pressure and then took a number of blood samples (the first time I'd seen Amy nervous about the whole process), did an ECG, tested the strength of her lungs by asking her to blow into a machine, and finally took a nose swab to ensure she wasn't carrying MRSA. We had a chat about what to expect on the day itself and were shown around the ward.

Trish introduced us to another patient and her mum who were due to have the same procedure on the same day. It's clearly a busy time for Brad, with most people trying to get things completed before the start of the main summer holidays. We heard someone had had the procedure a couple of days ago and was due home at the weekend, after a hospital stay of just 5-6 days.

Finally, we met the physiotherapist who explained to Amy what she would be doing to get her up and moving after the operation. It seems the hardest part is generally getting up and out of bed on the first day post-op. So, they practised the necessary "manoeuvres" (basically a managed log roll) necessary to get her out of bed a number of times, and Amy was taken through the post-op exercises she'd be doing, which to her relief was nothing more strenuous than gentle bending of her ankles and knees. The grin on Amy's face when she was told she was not to do PE at school for 6-12 months was huge.

Lots of Nice Emails

2009-06-17T19:10:00.001+01:00

I've had lots of nice emails since starting this blog. A couple in particular (you know who you are) have been especially helpful. It's really reassuring to hear from people who's daughters have been
through the same thing Amy's about to go through and come out of the other side safe and well. A big thank you to everyone who's taken the time to write so far and share their experiences. It really is a great comfort and help.

Operation Admin

2009-05-21T18:02:00.002+01:00

A pack arrived from the Spire Hospital Manchester today with all the admin details for Amy's admission for surgery in July. She's been allocated a private room and one of us will be able to stay with her at night whilst she's an inpatient, which will make things a lot easier ("as long as you don't snore too much, Dad!").

They've also made another appointment for us to see Mr Williamson on 2nd July so they can take some more X-Rays (presumably so they can assess if anything has changed and put together the detailed plan for the procedure).

Other than that, until 2nd July at least, I suspect things are going to go pretty quiet from here on in. The operation date still seems ages away but Amy remains cheerful and upbeat, which is the main thing.

On a personal note, I've had so many nice comments and emails since starting this blog, and I'd just like to say a big "thank you" for everyone who's taken the time to write.

Operation Date Confirmed - 21st July

2009-05-13T13:11:00.002+01:00

We got a confirmed date for Amy's operation today - 21st July. This is a couple of weeks later than we were originally planning for and it falls right inside the long UK school summer break. It means Amy will have less time to recover before school starts again in September, so she may miss the start of the new school year. It also gives us greater childcare challenges when it comes to Lucy (because she won't be in school when Amy is in hospital). I've booked two weeks off work, much to the dismay of my workaholic boss whose only frame of reference for scoliosis is an article he vaguely remembers reading in Takeabreak magazine in 2006.

Scoliosis Web Links

2009-05-09T13:55:00.004+01:00

Brad Williamson (Amy's consultant) has recommended a couple of websites for people interested in finding support and information on the condition. Just click on the links below:

1. The Scoliosis Research Society - an international, professional organisation made up of physicians and associated health personnel providing research and education on spinal deformities. Click here to visit their website.

2. The UK Scoliosis Society - an independent support group. Click here to visit their website.

Provisional Surgery Date - 7th July 2009

2009-05-09T11:56:00.001+01:00

Brad Williamson's secretary called today and said the likely date for surgery would be 7th July. This is just another jolt to the system. It doesn't matter how long you spend preparing mentally for something like this, it suddenly feels very real and raw when someone gives you a date. I was having lunch in Spitalfields Market when Tracey called me to tell me. For some reason being given a date for surgery was really upsetting. I've no idea what we're going to do for 8 hours when Amy finally goes down for the operation itself. I wonder if they would be prepared to anaesthetise the parents as well? Just wake us up when it's all over.

I went back to the office and booked some time off for July. That's all I could really do.

Pain

2009-05-04T11:49:00.002+01:00

Amy's condition does not seem to have troubled her at all. The advice from Mr Williamson was to continue her life as usual. Don't do anything differently at all. I'm not sure if it's related, but she is beginning to get some pain if she walks extended distances, and Tracey is beginning to worry about the upcoming school trip to Germany. They're going by coach, and the journey is about 12 hours. They'll obviously stop every few hours for a break, but we don't know how she's going to handle being sat in a seat in the same position for so long. I'll fly out and bring her back by air for the return journey if the outbound trip does end up causing her pain. I know that sounds like wrapping her in cotton wool, but that's a parent's instinct when something like this happens. You want to do everything you can to make things as easy as possible. The teachers have said they'll get one of the boys to carry her suitcase if necessary.

Brad Williamson Meeting 2 - It's Surgery

2009-04-30T11:34:00.002+01:00

Amy and Tracey were back at Manchester to see Brad today to receive his diagnosis. Her curve is at 60% (I believe that's a lot) and surgery is the only viable treatment option. The prognosis is for an excellent cosmetic result with minor scaring, but the operation is a long one - up to 8 hours.

There are risks, of course, as with any operation, but specifically with this one a 3% chance of complications through infection, and a very slight chance of paralysis. Recovery involves a couple of days in a high dependency unit (HDU), followed by a stay of 5-7 days in hospital.

Brad will try and schedule the procedure towards the end of the school year so Amy can recover during the summer holidays. I suspect she'd rather have gone ahead there and then and recovered during term time. However, she has a school trip to Germany coming up in May and we'd like her to be able to go so a July operation seems OK.

The procedure involves attaching titanium rods to the spine. Amy's only concern - will the rods set off the security scanners at airports. She's so cool!

Scheduling the surgical team required to perform the operation is going to take some time and we should expect to get a confirmed date in the next week or so.

Lucy

2009-04-25T12:45:00.006+01:00

Amy has a younger sister, Lucy (aged 12). They're very close. Lucy's extremely thoughtful and caring, and I suspect quietly worried about her sister.

The thing is, it's been Amy who's been getting all the attention of late, and that worries me. This thing affects the whole family. Parents, siblings, grandparents. I'm sure even Jess the cat knows something's up.

So, Lucy and I went shopping today, followed by lunch at TGI Fridays, then on to see Witch Mountain at the cinema. It was good therapy for us both.

That's Lucy on the right, with Amy on the left.

X-Rays and MRI Scan

2009-04-23T11:29:00.002+01:00

Amy was back at Manchester today having a series of X-Rays done on her back. She's also had a 45 minute MRI scan done. Personally, spending 45 minutes in what is effectively an enclosed tunnel would cause me to panic (they actually provide you with a panic cord), but Amy took it all in her stride. These machines are extremely noisy so they provide the patient with headphones and a choice of music to try and isolate the noise. Amy's only complaint was the music (Robbie Williams, apparently) was "very dated". I feel very old.

Brad Williamson

2009-04-17T11:21:00.005+01:00

Amy and Tracey met Brad Williamson today in Manchester. Another very nice man by all accounts. I was stuck in London so wasn't able to go and am beginning to hate myself. Mr Williamson wanted to do some X-Rays but apologised that the machine was broken. He explained all the treatment options, said he would make a further appointment for Amy to have some specialist X-Rays and an MRI scan done so he could perform a full diagnosis, and that was that.

On the way out the guy who was responsible for the broken X-Ray machine turned up, apologised again, and gave Amy a Waterstones gift voucher to apologise for the inconvenience caused.

That night Amy phoned me in London, said she didn't need the voucher, and offered it to me in exchange for cash, kindly saying she'd give half to her younger sister Lucy. I agreed to give them £20 for the voucher, only finding out later that the face value was £15. Amy explained the £5 premium was so I wouldn't have to worry about carrying cash around in London. She's a born business woman, that one.

Here's a link to Brad's biog:

http://www.drfosterhealth.co.uk/consultant-guide/Orthopaedics-and-trauma-Mr-Brad-Williamson-2640620.aspx

Being a Parent is Hard and Difficult

2009-04-07T11:19:00.000+01:00

As parents, Tracey and I are pretty upset by all this. As usual, I've buried my head in everything I can find on the web on treatment options - it's basically surgery for all but the most minor of cases (where things like pilates and yoga can help), or bracing for less serious curves. I'll ignore the plethora of alternative treatments. Neither bracing or surgery are particularly pleasant options, but Amy jokingly said she'd prefer them over a solution that requires exercise of any shape or form. She's still so relaxed about the whole thing, which helps, but the grown-ups aren't handling it at all well. I guess that's normal, but if either of us could swap places with her we would. My work commitments are keeping me in London all week, which isn't helping either, and the guilt of not being there is killing me.

Telling Grannies

2009-04-05T13:43:00.002+01:00

We told the grandparents today (Tracey's parents and my mother). We decided not to tell Amy's 90 year old Great Grandmother. People's attitudes to modern medical science and the degree of faith they are prepared to put in it vary, often with age, and we didn't want to worry her unnecessarily.

They took it pretty well. They asked loads of questions, of course, most of which we were able to answer. It seems my mum has scoliosis - I had no idea. It can be hereditary. Mum's curve is much smaller than Amy's and I remembered she'd had some surgery on her back a few years ago (which had corrected it) but I never made the connection before.

For some reason, when we first went to see the GP back in March, the doctor was more interested in Tracey's family's medical history than mine. I'm not sure why.

Consultation with Mr Dalal

2009-04-04T11:01:00.002+01:00

Mr Rakesh Dalal is a really nice bloke. We met him at the Spire Regency Hospital at Macclesfield Cheshire, on a Saturday morning. As you'd expect he had an extremely calming demeanour about him and proceeded to ask a series of diagnostic questions before performing a physical examination and confirming the diagnosis.

He described Amy as having a "fixed deformity" (which sounded horrible as a parent having your child described in such terms, but all it means is it won't get better, probably worse, unless it's treated). Mr Dalal suggested the resolution was going to require more specialist treatment than he was able to provide, and duly referred us to Mr Brad Williamson at Manchester, a specialist in this area.

At this point, then, things sound pretty serious.

Soliosis Nutty Support Group

2009-04-01T12:23:00.001+01:00

Found a nice scoliosis support group on Yahoo the other day. It has around 400 members. It's very informative and lets you share others' experiences.

http://uk.groups.yahoo.com/group/ScoliosisNutty/

Diagnosis Confirmed

2009-03-24T10:47:00.003Z

Amy has been to see her GP today who confirmed she had scoliosis.

There's a really simple test you can do for this by just getting someone to bend over slightly and just looking at their spine. The spine is obviously pretty close to the skin, there's little fat there, so any curve is really really obvious. We still can't believe we never noticed it before.

The GP referred us to Mr Rakesh Dalal, a consultant orthopaedic surgeon who practices in the North West of England. There's a brief biog of Mr Dalal below (I really must stop Google-ing people).

http://www.alexandrahospital.co.uk/consultants/mr-rakesh-dalal.htm

The appointment came through for 4th April. AXA PPP Healthcare have been typically brilliant.

What is Scoliosis?

2009-03-21T22:45:00.004Z

According to wikipedia, scoliosis is a medical condition in which a person's spine is curved from side to side. The word scoliosis actually derives from the Greek work for "crooked".

Its cause is unknown, can be hereditary, and typically affects teenage girls around the time of puberty. It affects around about 1 in 2,500 people, and it can be progressive (i.e. it gets worse) if not treated, leading to complications later in life, trouble breathing, that sort of thing.

Tracey (my wife) and I had never heard of it and were horrified. Amy just laughed at us for using wikipedia in the first place, but I've put a link to the entry below.

http://en.wikipedia.org/wiki/Scoliosis

I don't know how typically representative the graphic above is, but do know that your average spine is supposed to be straight. People with scoliosis have S or C shaped curves.

Anyway, Amy's off to the doctors as soon as we can get her in.

Something's Not Quite Right There

2009-03-21T22:20:00.001Z

We'd been shopping to the Trafford Centre in Manchester today. Amy had bought a couple of new bikinis and when we got home she went upstairs to try them on. It was then that we noticed her figure was, well, sort of uneven. She's 14, so developing into a woman, but on one side of her body her waist "cut in" at what was, as a parent, an alarming angle. She also had what appeared to be a hump on her upper back.

Amy was typically not fussed about it, said it had been like it for a while, and wasn't that bothered. I spent the next hour crawling all over last years holiday photos looking for some evidence from pictures of Amy on the beach that there was something wrong a few months ago, but I could see nothing. My next stop was the internet.

Suspecting a curved spine I eventually made my own amateur diagnosis - Amy has something called "scoliosis".