Psychological aspects of Scoliosis Surgery

Ever since my surgery I have been paranoid that my back will go back to how it was before my operation or that it will move/change in some way. I know the metalwork is strong but I can't help worrying about it.

For the first few weeks that I was home after my surgery I was constantly taking pictures of my back from different angles and I would panic if I thought that it looked slightly different from the one I took a few days before. It almost became an obsession.

Even now I still look at my back constantly, if I pass a mirror or a window I look at my back to make sure it still looks how it should do. I still take photos of my back to compare to a few months ago albeit it not as frequently now.

I do wonder if this is something that will ever go away or will I always feel this way? If so I feel like I'm living on edge, constantly worrying/thinking about my back.

My mum sees me looking at my back a lot and tells me to stop and "move on" with my life but it is hard. I think 10 years of looking a certain way which then suddenly changes overnight is a lot to deal with. I've been so used to looking at/taking photos of my back constantly before surgery that I guess old habits are hard to break.

I truly believe that the psychological part of this condition is often overlooked by doctors and yet for me it's a part I feel I suffer with the most, even after surgery.

For me, my back looks alot better than before but I don't feel I look "normal." I still don't feel comfortable in certain clothes, I still feel very self concious most of the time and I still don't like anyone seeing/touching my back.

I didn't expect to feel this way after surgery and have received no guidance on how to deal with it. I don't know if others feel this way after scoliosis surgery but for me this recovery is not just physical, it's emotional aswell.

I don't know if I should go to my GP and explain how I feel or whether this is just normal after such a huge change to my body. 

Hopefully I won't feel this way forever and will be able to have just one day without even thinking about my back.

Weekend Away

This weekend I went away to York for a few days.It reminded me that I still find travelling/weekend's away a bit of a pain, here's why:

-Train Journeys - luckily I wasn't alone but I don't think I could travel on my own with a suitcase on a train. Trains are annoying at the best of times, I could rant all day about them to be honest. 

I have to reserve a seat really as I can't stand for an entire train journey. The annoying thing about this though is that if I can't reserve a seat for some reason then because I look young/"normal" I feel as though people are judging me for sitting down say, for example, if someone older is standing nearby.

I also can't carry my case and it's virtually impossible to get through a train journey from start to finish without having to carry your case at some point, even if you have a roller case like I do. There are generally lots of stairs (why do sooo many train stations have so many stairs?!) and when you get on the train there's usually a pile of cases already in the luggage area so then you have to either struggle to lift to put it on the pile of cases or stuggle with your case through the train aisle to get to your seat, which are not wide enough to wheel your case through.

Then when you get to your seat if there's nowhere to put it next to you, you have to lift it to get it onto the overhead lugguage rack, which I can't really do.

After all this my back is generally killing and I can't wait to sit down but then the train seats aren't exactly the most comfortable and I have the usual problem that my back can't bend and mould to the seat so it's usually an uncomfortable journey.

-Walking - weekends away in a city generally involve being on your feet all day and this weekend was no exception! Although my back was a lot better than the last weekend away I had late last year and the lower back pain wasn't as bad but a long day walking round in the freezing cold (there was ALOT of snow in York and it was minus 7 at one point!!) does take its toll believe me. 

Plus I was scared of slipping as there was snow/ice all over the pavements.

I took some heels with me to wear out on the Saturday night but when it came to Saturday night it was sooo cold and slippy outside and I would have had to walk quite a bit between places and to the taxi rank that I just stayed in my flat 'snow boots.' 

I felt a bit too casual but I didn't want to slip and I knew walking round in heels would be uncomfortable aswell so that was a bit of a shame - this is why I hate the snow!!! Most girls in out that night didn't seem to care though in their skyscraper heels.... sigh.

-Taxis- We got alot of taxis because we didnt know our way round plus our hotel was just outside the city centre. This part isn't specific to weekends away but I realised this weekend that I CANNOT get in and out of those larger taxis with the slider doors. I can't bend to get in and out so it's really awkward  and because of this I managed to bang my head a couple of times in the process of trying to get in - ouch! :-(

-Hotel beds - The hotel bed was really hard, which made me appreciate how much I love my memory foam topper at home! I woke up stiff and in pain every morning and then had to walk round all day and attempt to awkwardly get in and out of taxis...

Don't get me wrong I had a really fun weekend away and I'm happy that I can do all these things but going away on the train is still not the easiest. It's not much of a problem if I'm with someone who can help with my case or not mind sitting down with me throughout the day while I rest my back. 

It's annoying sometimes as I might want to visit friends who live in another part of the country for the weekend but it would be quite difficult for me to do by myself if I had to go on the train.

Hopefully the more I do it though, the easier it will get in time.

Scoliosis Surgery Questions

For people that have just been told they need scoliosis surgery or are waiting for the surgery it can be a difficult and highly stressful time, I know because I've been there and had the panic attacks to prove it! 

I received an email last week with some questions about scoliosis surgery so I thought I would post the answers here incase they help others waiting for/deciding on surgery:

Why did you consider surgery? 

The reason I considered surgery was because I had a severe curve (over 80 degrees) and was told by my consultant that because it was so large, gravity over time could cause it to get worse by 1-2 degrees each year. 

I also had a lot of pain caused by muscle knots around my curve that were extremely sore and painful every day. 

I didn't really want the thought of it getting worse hanging over me and then having to face the surgery with an extremely large curve later in life when recovery would be much tougher. 

I know there is an argument that perhaps waiting would mean in the future surgical procedures would become more advanced and maybe it would be less invasive/there would be better techniques but I was young and fit and wanted to get it over with and move on (get a career etc as I felt my life was on hold for a while) rather than have it hanging over me.

It really is the toughest decision I have ever made though and definitely not one to consider lightly.

It's best to talk to as many as people as possible, get advice and use the forums/scoliosis surgery book that I recommend on here as it is very good for explaining everything. 

Did you try any other solutions?

I did try lots of physio to help with pain, I used to pay privately to have weekly massages to help my muscle knots but they always came back straight away and this would only provide temporary relief. 

I also tried accupuncture, heat therapy and did pilates and swimming. 

Swimming was the thing that helped me the most, I could manage my pain and muscle knots through swimming quite well and my back always felt great after a swim.

How long was the operation? 10 hours

What did you feel like when you woke up?

When I woke up I remember feeling as light as air and in no pain whatsoever - thank god for morphine eh?! I didnt really have much concept of time and kept falling asleep and waking up again and it would be hours later, it was all very surreal to be honest. I was also very thirsty, my mouth was incredibly dry. 

I could talk to my family ok, I remember talking to my dad on the phone at one point the night after my surgery as he was worried so he rang ICU to see how I was and they let him speak to me!

The next day I thought I had dreamt it and I can't remember what I said. 

It can be quite scary for your family seeing you with all your tubes etc but you will feel ok and quite comfortable when you wake up, they make sure of that.

What is the pain like?

The pain straight after surgery is well controlled with morphine and strong painkillers. The worst part for me was when I came off ICU and went into the ward, the first few days in the ward were quite tough to be honest as you get moved about, rolled over etc and it can be uncomfortable. 

The worst for me was meal times as I couldnt sit myself up to eat :( so I used to dread that. Once they get you up and about and you can go to the toilet etc, which is pretty quick to be honest, it gets alot easier.


Are there any complications?

I would advise speaking to your consultant about this as every case is different and these can depend on age/fitness etc.

From what I've read, severe complications seem very rare with this type of surgery as they are done quite frequently believe it or not! 

There is a risk of infection/reaction to anaesthetic like there is with any type of surgery.

With any type of spinal surgery there is also risk of damage to the spinal cord and in the worst case scenario, paralysis, but with scoliosis surgery the risk of this is less than 1% I've been told due to the advanced spinal monitoring equipment they now use.

If you are waiting for scoliosis surgery, you may also find my post on preparing for scoliosis surgery useful. :)

It's Snow Joke...

There are heavy snow warnings across the UK at the moment, below freezing temperatures and lots of ice. We've had a bit of snow where I live although what concerns me more are the slippy pavements - especially when they're not gritted.

I know a lot of people get excited by the snow, it looks so pretty blah blah blah.

I personally HATE the snow and dread winter every year because the cold weather does just not agree with my back. For me it feels dangerous and the cold just causes me extra pain.

Ever since I had the rods put in the cold seems to find it's way into my metalwork and my back muscles just stiffen up like a tight corset, making it difficult to walk very fast and making my pain a lot worse than usual. 

I'm also very nervous about walking on the ice since my surgery as I'm terrified of slipping over and doing damage to my fusion, damaging the metalwork and causing myself more pain. 

I know I'm stronger than I think, but I feel like a frail old lady out there on the ice, people don't realise how bad a fall could be for me though because I'm young and look "normal."


Also, I tend to tense up more when I walk on the ice now as I'm so scared of slipping, which makes it 10x worse!

It was worse last winter as I was only 6 months out of surgery and I knew that I wouldn't be fully fused yet so a bad fall could have caused serious damage.

I think I will be like this now every winter, I just dread it and wish it never snowed. Well, so long as I don't have to go out in it.

I really think I need to live somewhere hot and sunny...or get some of these, safety first!

Ice Grippers:

A Momentous Occasion...1 year 6 months post op

Last night I got into bed but then I realised I needed to turn the light off, so I sat up. 

Then I realised. I can sit up! I can actually sit straight up from lying down!! Without even thinking about it!!

This may not sound like much but for me this is a big deal.

I'm now 1 year 6 months post op and it's only really over the past couple of months or so that I'm starting to notice improvements like this. 

I'd say I've pretty much felt the same between the 1 year post op mark and 1 year 5 months or so and I was worried that I wouldn't improve much more.  That this would be it now. The best I'd ever get.

This to me though is proof that I am still improving. Proof how long this recovery actually is.

I can't help but think that all my hard work at the gym is also paying off. For the past few months I've been working really hard, going 3 times a week and focussing on core muscle work.

Last week my fitness instructor asked me to do the "Plank," which is basically lying face down on a mat, resting on your forearms and pushing off the floor so you're resting on your toes and elbows only. 

I was a bit reluctant at first as I haven't really done any exercises on the floor since surgery and I was worried about hurting my back. It was awkward getting down that low and getting back up but he was impressed with how long I could hold the exercise, he said I can hold it longer than most people he sees so my core exercises must be working! 

I'm now doing this exercise when I go to the gym, but resting on a pilates ball rather than the floor so I don't need to get down that low.

I have really noticed that my lower back pain has improved since I started all these core exercises and I'm so happy that I can now do things like sitting up in bed, like I used to before surgery, without log rolling out.

Honestly, I thought I would never do this again. I thought that maybe the rods restricted me from being able to sit up without rolling on my side but it must be weak muscles and now I'm regaining strength in my back muscles things like this are getting so much easier.

Yes, it's always in the back of my mind that what if I'm doing damage to my back/fusion/metal going to the gym all the time? This thought sometimes takes over and I'm scared to try new things but I'm getting to the point slowly where I'm realising that my back is stronger than I think.

I actually feel like I'm getting my old life back, after all this time.

Woohoo!!!

Half Woman, Half Robot

So what it is really like living with titanium in your spine? Can you feel it? Does it restrict you in any way? I know I asked myself these very questions prior to my scoliosis surgery.

I am fused with two titanium rods and 21 screws and from T3 to L3, which is most of my spine:

My back

The screws are also pretty big, as you can see from my X-ray above! So can I feel them? Yes and no. 

As I am quite slim I can feel my screws in some parts of my back if I actually touch my back but they don't cause any pain or probems. If I lean back on a hard chair it can be quite uncomfortable - some of the screws at the top of my spine can dig into certain chairs, but again it's not painful just a bit uncomfortable sometimes depending on the chair. A cushion is a must!

In everyday life though when I'm walking about I can't actually feel the metal in my spine. Straight after surgery I was very stiff and walked a bit like a robot for a while but as my recovery goes on I'm starting to feel much more "normal" each month. Maybe I'm just getting used to it but it is at last starting to feel normal for me.

I only notice it now really if I bend down to pick something up or I'm in a situation where I would usually bend my back e.g. when getting dressed, shaving my legs, tying shoelaces, getting in and out of the car etc as I can't bend the fused part of my back at all. This is sometimes awkward but on the plus side I now have thighs of steel as I have to bend by bending my legs instead. I can still do all the above things, it just takes me a bit longer now :)

If you had a shorter fusion you would probably notice this lack of flexibility much less as you mainly use the five lumbar vertebrae (L1-L5) when bending. The more of these lumbar vertebrae fused, the more your flexibilty will be affected post surgery.

A benefit of having titanium rods in my spine though is that I feel like I have an internal brace and I personally love this feeling! 

I feel supported from the inside and I can now sit for hours unsupported (e.g. on a bench or stool) and feel really comfortable, which I could never do before surgery. 

Also, because you can only sit up "straight" it gives you fantastic posture without even trying, which is a huge plus. For me, I think this is a novelty that will never wear off, especially after years of looking like I had bad posture due to my scoliosis.

I'll try and show you an example of this - the below picture is me sitting up "straight" before surgery, it looks like I'm slouching due to my "rib hump":

Posture before scoliosis surgery

I know this one is taken from a different angle but this is me now sitting on a chair sitting normally or "slouching" from the same side:

Posture sitting after scoliosis surgery

I now don't really need to lean back as the metal supports me and in fact it's actually comfier not to as my back won't bend and mould to the chair.

If you have any questions about the metal work, please contact me and I'll do my best to help! 

Louise xx