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I’m Still Quite Alive…

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Well… I’m really not sure how to begin this post! It’s been an extremely long time since I’ve blogged here, and so I feel like I should write a quick update to prove that I’m alive. Honestly, the only slightly valid reason I can give for not posting in so long is that I’ve been so busy, and felt so well, that I’ve kept on forgetting. It’s a pretty lame excuse, but it really is the truth.

I know that many of you who are subscribed to this blog know me in real life. This post probably won’t contain anything that you don’t know already, so don’t feel like you have to read it if you’d rather not. However, I have had a number of people comment on here in the last few months, saying that they’ve come across my blog because they themselves are facing scoliosis surgery and would like to know how I’m doing this far on. So this post is really for those people – I hope it helps at least some of you!

It’s crazy how quickly time seems to have passed since I had my surgery. I’m almost 2 1/2 years post-op, which seems like a bit of a milestone! Honestly, at this stage, I feel absolutely back to normal, and I rarely consciously notice that my back is different to how it used to be. Although I still maintain that I had a relatively quick recovery, when I look back over this blog and various draft posts that I started I’m reminded that it did actually take a long time for me to completely feel back to normal again.

My correction was and still is absolutely amazing.  However, my posture is not not perfect. I still have a slightly uneven waist and shoulders, but I honestly couldn’t care less about that now.  I’m so thankful for how straight my back is again, and especially for the absence of that awful rib hump. And I think my scar is amazing! It’s faded perfectly (not that I’m desperate for it to be invisible – far from it), despite the fact that I’ve never used anything like Bio Oil or scar cream on it. Looking back, I’ve just noticed that I never did post any pictures of it, so I guess I’ll put a few up now that will hopefully show how it’s healed over time. The last one isn’t very good quality, sorry, but if I wait to take a better photo I’ll never get this posted!

scar

I think the scariest thing for anyone facing this surgery (or any surgery, really) is the thought that they might end up in more pain than before. Obviously everybody can experience different things, but in my case I now have no pain to speak of. Since I came off pain-killers about three weeks after surgery, I can count on my fingers the number of times I’ve had to take panadol because of my back.That’s not to say that I never experience any pain; however I never get achy or sore for no reason. The only things that seem to sometimes cause me a little pain are uncomfortable seats (as in seats that are really low or have hard, awkwardly sloping backs) or bad posture (such as slouching over my laptop or a book). The bad posture is something that I try to avoid, and to be honest, most seats are fine for me. The church pews, however, are awful. 😛 Cushions are marvellous inventions! Overall, however, I really don’t experience back pain, for which I am truly thankful.

Earlier in this post I mentioned that I now feel back to normal. Well, “normal” is quite a relative term, and I don’t wish to give off the false impression that I feel exactly the same as I did before surgery, because that really isn’t true. The main difference is obviously that now I can’t bend my back at all, apart from at the hips (like a hinge…).  The reason this doesn’t affect my feeling “normal” is that it doesn’t prevent me from doing anything I need to do in everyday life. I can’t touch my toes or tie up my shoelaces without kneeling down first, for example, but really, that doesn’t affect my quality of living! I suspect that my sense of balance is slightly worse than it was pre-surgery, just because my spine has to move in one direction all at once and can’t really adjust as quickly as before, but it’s not a huge deal. When I was six months post-op I wrote down that “I definitely feel stiffer than before surgery, and it’s not like I ever forget that my back isn’t flexible, because it does affect everything I do”.  Well, my back feels perfectly normal to me now, not abnormally stiff, and I rarely remember that my lack of flexibility is affecting the way I do things. It just goes to show that adjusting to things like this can take time!

The only thing that is still annoying me a bit is the numbness Istill  have on my back.  I have two fairly large patches of almostly completely numb skin on either side of my scar – one just below my shoulder-blade and the other around where my rib-hump was. It sounds silly to be bothered by it, but I do find it irritating. Even though the skin is numb, I still sometimes experience a kind of itch which feels like it’s below the skin, and it drives me absolutely insane because I can’t make it go away. I think the itch is just the nerves healing (they can take a very long time to regrow), but that fact doesn’t really make it more pleasant! The only way I can think to describe how the numbness feels is that it’s kind of like when you stand up after your foot or leg has fallen asleep for ages: you know it’s there, but you can’t properly feel what’s happening to it. I asked my surgeon about the numbness at my last check-up, and he said that it’s still possible that it will eventually go away, and these things just take time. So I’m trying to think of this as a test of my patience. 😛

The only other thing that I can think to say that might be of slight interest is that if I press on it, I can feel the top of a hook near the top of my scar. It makes my mother squeamish when I bring it up, but I think it’s pretty awesome. 😛

Well. I apologise that this was rather long and rambly! Like I said at the beginning, I’ve been so busy with life that I haven’t really been thinking about my back that much. I hope that that is perhaps comforting for some of you who are facing surgery in the nearish future. I genuinely do remember how absolutely stressful and scary the whole surgery thing seemed at the time, but now I’m so, so glad that I went through with it – it’s one of the best things I’ve ever done. I’m not saying that the initial part wasn’t unpleasant and painful, because it definitely was at times, but it truly did pass by so quickly, and for me, the end result has been more than worth it.

Also, if you are undergoing treatment for scoliosis, I’d definitely encourage you to keep a record of it all, either through a blog or YouTube series, or even just a diary or photo-album. I’m so thankful to have a record of everything that has happened, especially as I really don’t remember a lot about the earlier days of recovery. Mum took a million photos in the hospital which I don’t think I’ve ever shown to anyone outside my family (just trust me, they’re stunning!), and although I didn’t really feel like it at the time I’m so glad she did take them. There’s something very helpful about being able to look back and see how far you’ve come. And blogging can be helpful for others as well – I’ve been able to talk to a lot of people about this surgery through this blog. I just checked the stats, and it’s had over 20,000 views since I started it over two years ago. I know that I found reading other people’s stories or watching videos they’d put together extremely helpful before I had surgery, and I’m so glad that even just a few people have been helped through reading my blog.

I don’t know when I’ll post again – I’m keen to update this occasionally, but I guess it will just depend on how busy life gets! This year has been full of big changes, the biggest being moving away from home for uni. I am absolutely loving uni, but I have discovered that I basically have no free time during semester (I’m majoring in piano performance, so any time between lectures/assignments is spent in a practice room). However, if you have questions about surgery/recovery please do comment and let me know, as I’m more than happy to reply either on here or via email. 🙂

A Post About Toast (and other things).

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I’m feeling so much better today, and Mum said that it was my turn to do a post. 🙂 So, here it is!

I don’t remember a huge amount from the first couple of days, and, due to the morphine pump, I really didn’t have too much pain. I’ve found it very hard to get used to sitting and standing up, though, and for a while I couldn’t sit up without becoming very light-headed and nauseated. But that’s all pretty much passed now, and I’ve gone for a few walks down the hallway and sat in a big chair for a while without feeling too bad.

I was taken off my morphine pump last night. This didn’t make me particularly happy, and I’ve found it a little difficult to adjust to taking my medications before I need them, as opposed to being able to press the button for instant pain-relief whenever I want. It’s all getting sorted, though, and I’m feeling fairly comfortable now. At the moment I’m on regular doses of Panadol, ibuprofen, slow-release Tramadol, as well as a morphine pill if I feel I need one.

my looooong bandage

I’ve had a number of visitors over the last couple of days, which has been really nice. I apologise if you came and I didn’t interact much – some of my memories of the last few days are quite blurred! I’ve also started eating real food again, which has been amazing. There’s a limit to how many clear liquids one can partake of before it all gets a bit much. The first thing I ate was a piece of toast with Marmite… and I’ve never tasted better.

I had some xrays taken yesterday (when I was able to stand up for long enough) and Mum says they look pretty amazing. My surgeon said that he was very pleased with them too, and so I can’t wait to finally see what my spine looks like now! One of the doctors said he’d email the xrays through sometime soon, and so I’ll post a “Before & After” set of photos.

Mum and Lizzie helping me walk down the hallway. Observe my great height...

That’s pretty much it! Dad and the girls have gone back home for the weekend, as I’m probably going to be discharged on either Monday or Tuesday. So Mum and I are up here with crosswords, internet and cups of tea. Everything’s going well!

I’ll leave you with the view from my room’s window at night….

Drugs are great

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I will try again – the computer seems to have eaten my post!

 

Sorry for the delay in updating things here; once Ruth was out of surgery last night, things were very busy, and then we didn’t have access to the internet until this morning.

As soon as he had finished operating (it took about 6 hours), the surgeon rang us to say that he was very pleased with the way everything had gone from his point of view.  We weren’t able to see Ruth for quite a while, as her blood pressure was very low when she got to the Recovery Room, and there was concern about some unexplained bleeding from her kidneys.  However, she is OK, and this seems to be resolving.  She did lose a considerable amount of blood during the surgery, which was not unexpected;  this particular operation involves a lot of gore.  (Sorry if this is too graphic – I am trying to be as polite as possible 🙂  Some of this blood was replaced at the time.  So far she has not had a blood transfusion, but it is quite likely that she will within the next day or two.  As you can imagine, she is very pale and tired, but in good spirits.

Ruth now has about 16 screws, 3 hooks and two straight rods attached to her spine.  We are all looking forward to seeing the Xrays they will take when she is able to stand up in a few days’ time!

She is particularly fond of the “Patient Controlled Analgesia” button, which gives her an instant burst of Morphine any time she presses it.  It makes her smile.  And then she falls asleep for a little while.  She says she “Loves, loves, loves” it.

She had a good night, back in her own room, and slept on and off in between all the frequent interruptions and close observations.  She has been sipping water and sucking on ice blocks, and thanks everybody for them – she is a great girl!

This morning, the physiotherapist came to help her sit up briefly on the side of the bed, which was quite a feat.  She asked Ruth if she would like to sit out on a chair, but was politely declined 🙂  She is coming back this afternoon for another session.

We can’t tell you how much it means to all of us to read your comments, and to know that so many of you are praying for Ruth, asking God to take care of her.  He certainly is.

Despite being tired, pale, sore and attached to lots of equipment, Ruth is her usual, calm, capable self.  She got the laptop organised this morning, through the bedrails, and Skyped her sister Miriam in London.  And then drifted off to sleep again.  Those drugs …

It’s all happening

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This is a quick note from Jill (Ruth’s Mum, for those who don’t know us personally) to let all Ruth’s readers know the latest.

Ruth had a reasonable night’s sleep; she wasn’t worried, just woken by the lights and noises on the ward. Prior to going off to theatre this morning, we had some very welcome news.  The surgeon has decided, after looking carefully at the traction Xrays from last Friday, that he is not going to do an anterior release as he had originally planned.  He feels that he will be able to get a good result without this, and so he is only (“only” being a relative term, and a bit of an understatement) doing a posterior fusion.  This means that the surgery will be some hours shorter than originally expected (still 5 – 6 hours), and will not involve any of the scary things associated with entering her chest cavity.  We are so grateful to God for this, as is Ruth.  I didn’t get a photo of her face when he said this, but it was very happy.

David, Becky and Abby are in luxury accommodation at Ronald MacDonald House, Grafton Mews, just off the hospital precinct, but about 15 minutes’ walk away.  We are all so blessed, to be living in a time and place where all this is possible.  God is so good to us.

We will try to update this later today, when we have some more news.  Thank you to all who are praying for Ruth, for us and for the surgeons and anaesthetists.  It means so much.