I've written, drafted and deleted many versions of this post throughout the past year or so. It never sounded right, wasn't really informative or I was worried how people would receive the post- calling it "attention-seeking" and all that jazz. But I've been pretty much stuck inside for over three weeks now and the boredom has really gotten to me. So here we are, a more personal post on my own experience with severe scoliosis.
*Just a disclaimer*; I wanted to write this post both for myself, as a form of documentation during this time of my life and for those of you who may also be suffering with scoliosis, whether you're considering having surgery or not. Please note that all mentioned within this post has been from my own personal experience (along with my twin sisters) and that I am not a medical professional- please seek help from your GP or spinal specialist. I won't be releasing the names of the various surgeons/specialists mentioned in this post (for security) but please feel free to contact me if you also have scoliosis and have a few questions! This has inevitably turned into a very, very long post so I understand if you can't be bothered reading it! This post also explains my recent absence from the blog.
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| My scoliosis in 2013- the only photo I actually have of my back. |
*Just a disclaimer*; I wanted to write this post both for myself, as a form of documentation during this time of my life and for those of you who may also be suffering with scoliosis, whether you're considering having surgery or not. Please note that all mentioned within this post has been from my own personal experience (along with my twin sisters) and that I am not a medical professional- please seek help from your GP or spinal specialist. I won't be releasing the names of the various surgeons/specialists mentioned in this post (for security) but please feel free to contact me if you also have scoliosis and have a few questions! This has inevitably turned into a very, very long post so I understand if you can't be bothered reading it! This post also explains my recent absence from the blog.
I guess starting from the beginning would make this all a lot easier... so here we go; Tayla and I were both dancers from the ages of three to fifteen. Because of this, we both had very good posture and it was difficult to determine that there was actually something wrong. One of our ballet teachers noticed that Tayla's hips were slightly out of line. She kept asking Tayla to move her rib cage over slightly but she couldn't and to her, it didn't seem like she was standing towards one side at all. Fast forward a few months and Tayla had started to get quite a bit of lower back pain. She eventually made a trip to the doctor where she was asked to get an array of x-rays done. From these x-rays it was pretty obvious that Tayla had scoliosis in her lower spine. The doctor referred her to a specialist down in a larger city (where we now live) and I was asked to get x-rays done too, (despite having no back pain) because we were twins and scoliosis can sometimes be genetic.
When we eventually had our appointment with the specialist (these surgeons have very full schedules), it was determined that I actually had scoliosis too and that it was quite a lot worse than we expected. Tayla's scoliosis was determined to be severe, with a curve in her lower spine at about 42 degrees (both specialists that I've been to have informed me that 40 degrees or more is severe) but at the moment, her curve is inoperable. Sure, Tayla's back pain could be cured by having surgery, but this would leave her unable to bend and move properly along with a range of issues with her internal organs (as the surgery would have to be done right near a bunch of those). Whilst living with back pain is very undesirable, it's definitely the better option for her right now and she may have the surgery in the future when she's quite a bit older. For now, we just need to keep an eye on her curve to make sure it doesn't dramatically increase in size.
As a dancer, I had noticed that I was very un-flexible in my spine- I was never able to bend all the way over my legs and I just assumed it was because I was un-flexible. Finding out scoliosis was the cause was a weird relief. My biggest curve (at that moment) was about 65 degrees and located right near my lungs (T1-L1). I also had a second, smaller curve of about 15 degrees (not severe) a little lower than the first. This particular surgeon then explained to me that he didn't feel comfortable operating on my spine as it was too large and the placement was too risky. As a fifteen year old who had no idea that I even HAD scoliosis until that very day... I was terrified. He then proceeded to refer me to a new doctor, one he would have his own children go to if they also had scoliosis. Needless to say, we eventually made the trip back down to meet with this second surgeon.
I'm very thankful that my first specialist referred me to my current specialist. Originally, he planned to perform a form of key-hole surgery to reduce the amount of scaring, recovery time and pain (you can read about minimally invasive spine surgery here- though this particular article is not about scoliosis, it's a similar concept) but he soon determined that procedure would be quite risky for me to undertake. After a few more x-rays (seriously, if I got paid each time I had more x-rays I would be a lot better off) and an MRI (which itself was a terrifying experience) it was decided that I would be having traditional spinal fusion surgery (which you can read about here). A traditional spinal fusion basically means that a bunch of metal bars and screws are used to pull the spine straighter before bone is used to fuse everything together. Ideally, I would have had the surgery that year, 2011, but I was a little too frightened and anxious about it.
Three years later I finally decided that it was time for me to fix my spine. The location of my scoliosis had become quite problematic and the curve had increased to about 70 degrees. There was no doubt that the curve would continue to grow, eventually leading to my spine pushing down on my lung, which obviously wouldn't be ideal. I'm actually pretty lucky that I wasn't more 'disfigured'. With the placement and severity of my curve, I should have been a lot more stooped over and twisted, I consider myself very lucky that I was able to go about my every day life with little to no attention being brought to my spine. An appointment with my surgeon was booked and within a few weeks the date was set for the fourth of November 2014.
As I'm sure you can imagine, the lead up to the operation was terrifying. I've never had to stay over night in the hospital and have never had any sort of operation in my entire life. I'm sure you all understand the complications with going through any kind of operation, especially the kind that come along with spinal surgery such as paralysis and blindness but there really wasn't anything I could do about it. Sure, I was constantly reassured by my surgeon, friends and parents but that didn't really stop the fear and there was no way I was going to back away from having the surgery again. That, mixed with the fears of what actually could happen within the operating theatre really got to me. I'm terrified of needles, blood, vomit and have the lowest pain threshold ever, though my surgeon does think I actually had grown immune to my back pain, hence why I didn't feel anything which I guess means I have a high pain threshold... you get the idea. Anyway, the two months that I had to wait for doomsday went by way, way too quickly and before I knew it I was at the hospital the night before surgery not quite sure how to feel. Needless to say, I don't think I managed to get much sleep that night.
I'm not going to lie, I've basically forced myself to forget the day of my surgery because it was all a bit too much for me and was an overall terrifying experience. I remember shaking like a leaf and the various nurses and staff that poked and prodded at me and handed me tissues even though I wasn't aware I was crying. I also remember going into the operating theatre and feeling a little specimen like as an entire team of nurses and staff loomed over me before I started getting upset again and my mum had to calm me down whilst the very kind anaesthetist put me to sleep. Then, as I'm sure you can predict, I woke up with my parents and sister nearby.
Apparently, I didn't say anything too stupid or embarrassing when waking up (can I get a hell yeah?), despite mentioning my cats a few too many times and pulling stupid faces (I'm forever grateful that electronic devices such as phones and cameras weren't allowed near me). I was told by the ICU doctor that there were no complications with my surgery and I had very minimal blood-loss and the instant relief I felt is indescribable. An x-ray also determined that the curve in my spine has come down to 9 degrees! My surgeon was very pleased with this outcome as we expected he'd only be able to get it down to about 20 degrees! It's also pretty remarkable because most people have a curve of about 10 to 15 degrees, meaning mine is now much smaller than the average persons! That's pretty much as much as I can remember because at this point I was unable to move anything other than my hands and constantly slipped in and out of consciousness. That first night was pretty terrible though. It had become very obvious that I was not reacting well with the drugs I had been given and the reactions included slight paralysis (throughout the night I could not move at all and I was so scared, though constantly reassured that it was expected), vomiting and dizziness.
To give you some perspective, I had two epidurals (very thin, straw-like needles) in my back (connected to a drip), two different drips on the inside of my left elbow (I'm not sure what those were for), one in my left hand and one on the right side of my neck, along with one of those oxygen thingos (which are really, really annoying). I also was taking various tablets every few hours. Whilst I'm not the smallest person on the planet, having that many drugs pumping through my veins really didn't settle well with me. I'm the kind of person that gets sick from taking nurofen, and I was already aware that I was allergic to a drug called amoxil (that was a discovery I made when they attempted to give me the drug back when I broke my right shoulder... oh the memories). What I didn't expect, was to be allergic to the tablets I was taking, along with the numerous different kinds that were pumping through the epidurals. Unfortunately, the epidurals (understandably) had to stay and I was forced to a few days of constant vomiting (nice) and dizziness.
Despite my allergic reaction, I was able to leave ICU the very next day! I was still pretty out of it and couldn't really do much at this point. I was transferred to a wing full of brain and spine patients and I was lucky enough to have some of the kindest nurses I've ever met. The next day I began physiotherapy. It was very difficult. All we managed to do was get me to sit up on the side of the bed which didn't go down to well and I was only sitting up for a few seconds. The next day I managed to sit up a little longer before standing up with the assistance of a frame (and physios, obviously). Then, on Friday the seventh of November, I managed to walk from my bed to the door of my room (still with the frame, there was no way I was willing to let go of that thing). That was the moment I actually decided that yeah, I could do this. I was improving every day and had managed to walk! That was also the day those lovely epidurals were removed, though because the drugs were deep in my system I was still reacting to them. Over the next five days I got better and better at manoeuvring myself around my hospital room and walking along the corridors of the ward. After what felt like months, but was really only eight days, I was finally discharged from hospital on Wednesday the twelfth of November.
I've now been home for just over two weeks. Sure, I haven't been able to do much and literally need help doing pretty much anything, but I am improving every day. Just last Saturday, I managed to go to the cinema (though I did have to go to a Gold Class cinema because I can't sit in a normal cinema seat for longer than a few minutes yet) and yesterday I walked around a shopping centre for two hours (with constant breaks, but still!). Those are really the only times I've stepped out of the house as I'm still in a considerable amount of pain and discomfort, but I'm still improving and making my way back to a normal life. I'm still numb on my back and all up one side, have a slight lazy eye (from the drugs in my system) and sleep most of the day, but I know it's all going to get better from here.
That's about it for my post about my scoliosis. Sorry it's taken me so long to write a post but I've only recently been able to sit up long enough to use my laptop! Remember, if you have scoliosis and have any questions please feel free to contact me!
Thank you for reading, love from Maddie xo
When we eventually had our appointment with the specialist (these surgeons have very full schedules), it was determined that I actually had scoliosis too and that it was quite a lot worse than we expected. Tayla's scoliosis was determined to be severe, with a curve in her lower spine at about 42 degrees (both specialists that I've been to have informed me that 40 degrees or more is severe) but at the moment, her curve is inoperable. Sure, Tayla's back pain could be cured by having surgery, but this would leave her unable to bend and move properly along with a range of issues with her internal organs (as the surgery would have to be done right near a bunch of those). Whilst living with back pain is very undesirable, it's definitely the better option for her right now and she may have the surgery in the future when she's quite a bit older. For now, we just need to keep an eye on her curve to make sure it doesn't dramatically increase in size.
As a dancer, I had noticed that I was very un-flexible in my spine- I was never able to bend all the way over my legs and I just assumed it was because I was un-flexible. Finding out scoliosis was the cause was a weird relief. My biggest curve (at that moment) was about 65 degrees and located right near my lungs (T1-L1). I also had a second, smaller curve of about 15 degrees (not severe) a little lower than the first. This particular surgeon then explained to me that he didn't feel comfortable operating on my spine as it was too large and the placement was too risky. As a fifteen year old who had no idea that I even HAD scoliosis until that very day... I was terrified. He then proceeded to refer me to a new doctor, one he would have his own children go to if they also had scoliosis. Needless to say, we eventually made the trip back down to meet with this second surgeon.
 |
| A photo from instagram- my scoliosis is pretty obvious on the left side, July 2014. |
I'm very thankful that my first specialist referred me to my current specialist. Originally, he planned to perform a form of key-hole surgery to reduce the amount of scaring, recovery time and pain (you can read about minimally invasive spine surgery here- though this particular article is not about scoliosis, it's a similar concept) but he soon determined that procedure would be quite risky for me to undertake. After a few more x-rays (seriously, if I got paid each time I had more x-rays I would be a lot better off) and an MRI (which itself was a terrifying experience) it was decided that I would be having traditional spinal fusion surgery (which you can read about here). A traditional spinal fusion basically means that a bunch of metal bars and screws are used to pull the spine straighter before bone is used to fuse everything together. Ideally, I would have had the surgery that year, 2011, but I was a little too frightened and anxious about it.
Three years later I finally decided that it was time for me to fix my spine. The location of my scoliosis had become quite problematic and the curve had increased to about 70 degrees. There was no doubt that the curve would continue to grow, eventually leading to my spine pushing down on my lung, which obviously wouldn't be ideal. I'm actually pretty lucky that I wasn't more 'disfigured'. With the placement and severity of my curve, I should have been a lot more stooped over and twisted, I consider myself very lucky that I was able to go about my every day life with little to no attention being brought to my spine. An appointment with my surgeon was booked and within a few weeks the date was set for the fourth of November 2014.
As I'm sure you can imagine, the lead up to the operation was terrifying. I've never had to stay over night in the hospital and have never had any sort of operation in my entire life. I'm sure you all understand the complications with going through any kind of operation, especially the kind that come along with spinal surgery such as paralysis and blindness but there really wasn't anything I could do about it. Sure, I was constantly reassured by my surgeon, friends and parents but that didn't really stop the fear and there was no way I was going to back away from having the surgery again. That, mixed with the fears of what actually could happen within the operating theatre really got to me. I'm terrified of needles, blood, vomit and have the lowest pain threshold ever, though my surgeon does think I actually had grown immune to my back pain, hence why I didn't feel anything which I guess means I have a high pain threshold... you get the idea. Anyway, the two months that I had to wait for doomsday went by way, way too quickly and before I knew it I was at the hospital the night before surgery not quite sure how to feel. Needless to say, I don't think I managed to get much sleep that night.
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| The beautiful flowers my lovely twin bought for me the day I got out of ICU |
Apparently, I didn't say anything too stupid or embarrassing when waking up (can I get a hell yeah?), despite mentioning my cats a few too many times and pulling stupid faces (I'm forever grateful that electronic devices such as phones and cameras weren't allowed near me). I was told by the ICU doctor that there were no complications with my surgery and I had very minimal blood-loss and the instant relief I felt is indescribable. An x-ray also determined that the curve in my spine has come down to 9 degrees! My surgeon was very pleased with this outcome as we expected he'd only be able to get it down to about 20 degrees! It's also pretty remarkable because most people have a curve of about 10 to 15 degrees, meaning mine is now much smaller than the average persons! That's pretty much as much as I can remember because at this point I was unable to move anything other than my hands and constantly slipped in and out of consciousness. That first night was pretty terrible though. It had become very obvious that I was not reacting well with the drugs I had been given and the reactions included slight paralysis (throughout the night I could not move at all and I was so scared, though constantly reassured that it was expected), vomiting and dizziness.
To give you some perspective, I had two epidurals (very thin, straw-like needles) in my back (connected to a drip), two different drips on the inside of my left elbow (I'm not sure what those were for), one in my left hand and one on the right side of my neck, along with one of those oxygen thingos (which are really, really annoying). I also was taking various tablets every few hours. Whilst I'm not the smallest person on the planet, having that many drugs pumping through my veins really didn't settle well with me. I'm the kind of person that gets sick from taking nurofen, and I was already aware that I was allergic to a drug called amoxil (that was a discovery I made when they attempted to give me the drug back when I broke my right shoulder... oh the memories). What I didn't expect, was to be allergic to the tablets I was taking, along with the numerous different kinds that were pumping through the epidurals. Unfortunately, the epidurals (understandably) had to stay and I was forced to a few days of constant vomiting (nice) and dizziness.
Despite my allergic reaction, I was able to leave ICU the very next day! I was still pretty out of it and couldn't really do much at this point. I was transferred to a wing full of brain and spine patients and I was lucky enough to have some of the kindest nurses I've ever met. The next day I began physiotherapy. It was very difficult. All we managed to do was get me to sit up on the side of the bed which didn't go down to well and I was only sitting up for a few seconds. The next day I managed to sit up a little longer before standing up with the assistance of a frame (and physios, obviously). Then, on Friday the seventh of November, I managed to walk from my bed to the door of my room (still with the frame, there was no way I was willing to let go of that thing). That was the moment I actually decided that yeah, I could do this. I was improving every day and had managed to walk! That was also the day those lovely epidurals were removed, though because the drugs were deep in my system I was still reacting to them. Over the next five days I got better and better at manoeuvring myself around my hospital room and walking along the corridors of the ward. After what felt like months, but was really only eight days, I was finally discharged from hospital on Wednesday the twelfth of November.
I've now been home for just over two weeks. Sure, I haven't been able to do much and literally need help doing pretty much anything, but I am improving every day. Just last Saturday, I managed to go to the cinema (though I did have to go to a Gold Class cinema because I can't sit in a normal cinema seat for longer than a few minutes yet) and yesterday I walked around a shopping centre for two hours (with constant breaks, but still!). Those are really the only times I've stepped out of the house as I'm still in a considerable amount of pain and discomfort, but I'm still improving and making my way back to a normal life. I'm still numb on my back and all up one side, have a slight lazy eye (from the drugs in my system) and sleep most of the day, but I know it's all going to get better from here.
That's about it for my post about my scoliosis. Sorry it's taken me so long to write a post but I've only recently been able to sit up long enough to use my laptop! Remember, if you have scoliosis and have any questions please feel free to contact me!
Thank you for reading, love from Maddie xo
I'm so glad to hear that the surgery went well Maddie, it's great to see you recovering so quickly too! I had no idea how big the curve in your spine was, that's huge D: All the best for the rest of your recovery :)
ReplyDeleteThank you Sarah! I know, I didn't think I would be able to walk within the first few days but it's brilliant! xx
DeleteAnd i thought I had it bad with a 30 degree curve! Glad to know you're recovering well! x
ReplyDeleteHey now, a 30 degree curve is still bad! You could be in a tonne of pain, never belittle your own issues! Thank you anonymous xx
DeleteThis was a brave post and I really, really appreciate you talking about it on a public platform! I really appreciate it whenever anybody (especially people who are doing things that I admire) talk openly about health issues, physical or mental - it makes me feel much less alone, having all the weird health problems that I have myself! And that is a really, really valuable thing. So thank you <3
ReplyDeleteP.s. Best of luck in your recovery! It absolutely sucks being reliant on other people to do things for you/not being able to leave the house, so I hope that's over for you soon!
Thank you Annika! It was something I had wanted to do for a long while and I finally decided to just go ahead and do it! I think health issues (physical and mental) really need to be talked about online and I'm glad I finally got the guts to discuss mine! I'm glad this post made you feel less alone, that's such a lovely thing to hear!
DeleteThank you so much Annika, I really appreciate it <3 xx
But doesn't everyone have some form of scoliosis? I don't understand why yours was so bad that you needed surgery? Couldn't you have done physio?
ReplyDeleteHey :)
DeleteWe developed Scoliosis after puberty; we grew much too quickly so our spines didn't grow correctly. Most of the time young children who have scoliosis are able to have a brace and various physio treatments in order to HELP their spines grow straight, NOT straighten it out. They are usually a preventative measure and often doesn't even help at all. In some instances a brace and physio whilst incredibly painful, can help spines GROW straight, once you reach a certain age and stop growing there is nothing a brace or physio can do. Due to the both of us developing scoliosis AFTER puberty, we were already fully grown so physio and a brace would do no good.
Maddie needed surgery due to the curve in her spine growing rapidly each year, despite her body no longer growing. The positioning of her humongous curves meant that there was a possibility that her spine could puncture and crush her lungs. She had some difficulty breathing during exercise amongst other shoulder and back issues due to her scoliosis. Hence the operation.
Everyone does have some form of scoliosis; some much more severe than others. In this instance, Maddies is extremely severe whilst mine is borderline severe. Some people have such small curves in their spine that it doesn't affect their everyday lives or they feel no pain and often don't even notice the curve. Google some pictures of people with scoliosis and you will see why the surgery was needed for Maddie- as her curve was increasing there was a chance she could end up like that.
I hope that helps :)
This is really wonderful, and such a nice read <3 _ <3 ! I adore your blogs and find it to be such a lovely corner in the seemingly infinite corners of the internet :)
ReplyDeleteI was wondering if you could recommend other beauty/similar blogs? I've perused your posts on your favourite bloggers and they are all so lovely! I'd love to discover other equally beautiful corners in the internet :)
You girls are gorgeous!
-Erika
Hey Erika!
DeleteOh my golly gosh! What a lovely thing to say. Sometimes it feels like the only people who read our blog are our close friends and no-one else, so it's nice to know someone else appreciates it!
Whilst I don't know any other blogs that have quite the mix of content that we have, my favourite blogs other than Mermaidens, The Pineneedle Collective, Scathingly Brilliant and ItsConnieYeah would be The Fashion Heist (Aicha is flawless), Arabella Golby, Shelovesdresses (Jenny is my beautiful penpal!) and Prettydressesinthelaundry!
I hope that helps! Thank you so much!
Love from Maddie xo
Maddie this is a wonderful and thoughtful post. It really shows that you never know how hard other people's battles might be and is a good reminder to be a grateful for the things you have. I hope you're feeling well now! We are only acquaintances in RL so I dont want to embarrass you (or me for finding an old blog post!) but you're my superhero for today.
ReplyDeleteYou also have a tremendous and unique literary voice too - you should keep it up!
OH MY GOSH HOW HAVE I NOT DISCOVERED THIS COMMENT UNTIL NOW? Thank you anonymous, this really means a lot to me <3 xx
Delete