It's World Spine Day and I thought maybe it was time for an update that is the ridiculousness of my life. I've also added some fun bits throughout like a video about Scheuermann's Disease, the first time in my life where I was all SCIENCE BITCH! and some article links to general spine health related news on how vitamins and medications (like anti depressants) can affect your bone health.
For those who somehow don't know, I have Scheuermann's Disease (You can check out my blog for Rare Disease Day here on the subject). I was diagnosed officially at 14 (was misdiagnosed at 8-9 years old but was left untreated), tried a back brace, scored a shit load of bullying from literally everyone in my life (my favourite being "she'd be pretty if it wasn't for her back"), developed a nice list of mental health issues and grew up to be the ray of sunshine I am today. I was deemed unemployable because I was seen as a risk and didn't get my first actual job until 2012. The end of 2015 I thought I was looking worse than normal and saw my doctor about it. Referrals were sent out and things got worse at the beginning of 2017 and have steadily progressed since.
If unsolicited advice has taught me anything it's that most don't know how a spine works. We all know a broken spine can lead to you becoming quadraplegic at the very worst, yet this information is forgotten when it comes to advice. I've been told to get a shower chair when I mention that standing in the shower some days is hard. My legs work, it's being vertical in general that's the problem. The spine protects your spinal cord, the nerves and several of your organs. It's what helps keep you upright and functional. The spinal cord and nerve system make up your entire Nervous System. A pinched nerve anywhere in your spine can affect feeling or cause pain in your legs and arms. I've woken up a few times to a dead arm thanks to a pinched nerve and it can take a day for medication to fix it. This is also why spinal surgery is so risky - the slightest accident can leave you paralysed in numerous ways.
The spine consists of 4 regions: cervical, thoracic, lumbar, and sacral.
The neck region is the Cervical Spine. This region consists of seven vertebrae, which are abbreviated C1 through C7 (top to bottom). These vertebrae protect the brain stem and the spinal cord, support the skull, and allow for a wide range of head movement.
The first cervical vertebra (C1) is called the Atlas. The Atlas is ring-shaped and supports the skull. C2 is called the Axis. It is circular in shape with a blunt tooth-like structure (called the Odontoid Process or dens) that projects upward into the Atlas. Together, the Atlas and Axis enable the head to rotate and turn. The other cervical vertebrae (C3-C7) are shaped like boxes with small spinous processes (finger-like projections) that extend from the back of the vertebrae.
Beneath the last cervical vertebra are 12 Thoracic vertebrae abbreviated T1-T12 (top to bottom). T1 is the smallest and T12 is the largest thoracic. The thoracic vertebrae are larger than the cervical bones and have longer spinous processes.
Rib attachments add to strength and stability of the thoracic spine. The rib cage and ligaments limit range of motion and protect many vital organs.
The Lumbar Spine consists of 5 vertebrae abbreviated L1-L5. The lumbar vertebrae are the largest and carry most of the body’s weight. This region allows more range of motion than the thoracic spine, but less than the cervical. Lumbar facet joints enable significant flexion and extension movement, but limits rotation.
The Sacrum is located behind the pelvis. Five bones, abbreviated S1-S5, fused into a triangular shape, form the sacrum. The sacrum fits between the two hip bones connecting the spine to the pelvis. The last lumbar vertebra (L5) articulates (moves) with the sacrum. Immediately below the sacrum are five additional bones, fused together to form the Coccyx (tailbone).
Although not typically viewed as part of the spine, the skull and pelvis inter-relate with the spinal column and impact balance.
How The Spine Looks
Everyone's spine is curved naturally but with diseases like Scoliosis and Sheuermann's Disease our curves are more extreme or go in the wrong direction. Normally a healthy spine viewed from the front is straight up and down. Viewed from the side, a spine has four distinct curves. Curves are described as being either kyphotic or lordotic.
The MRI on the left is one of a normal spine I pinched off Google, the one on the right is mine. Another important area of the spine are the Facet Joints. These are in the back of each vertebral body and work like a hinge helping you to be able to bend, twist and extend your body in different directions.
It's some stupidly rare disease that's hard to spell. No joke it took me a good 20 years to remember how too or maybe I'm just slightly special because it took me a long time to remember how to spell my middle name too. Scheuermann's Disease effects the way our vertebrae develop in childhood. Instead of being rectangular in shape our vertebrae are wedge shaped which causes the spine's curve to exaggerate from the norm. Nobody is really sure on why it happens though. Some believe it's hereditary but a lot of us are the first in our families to have it.
The only people who have heard of it are the 2-4% who have it and about 10 doctors and whoever has been reading my blog posts in the last 2 years. Ok that's an under-exaggeration but the reality is unless they're an actual spine surgeon of some description nobody has heard of it or knows what it is and even then they aren't much help to you (refer to my last blog Surrounded By Idiots on just how great Pain Management was!). However people who have heard of it just 3 seconds after you've told them why you're in pain all of the time magically know what you're doing wrong in life and how to help you. The first rule of Fight Club is DON'T OFFER UNSOLICITED ADVICE! If you want to be helpful to a person with chronic pain/illness offer them help with shopping, lifts to the doctor, an outing to literally anywhere even that coffee shop 5 minutes from their house..things you might be good at yourself because your back works and you take it for granted. Back to the point, not everyone with Sheuermann's Disease looks the same. Our spines are kind of like fingerprints in that we all present differently. My spine is one big curve starting from my neck so it's like a large C shape. Others have a more prominent S shape. Others have a "hump" right up the top, other's might look normal standing up straight but when they bend over there's a noticeable hump in the middle of their back and others have a mix of kyphosis and scoliosis.
I found a video on Scheuermann's Disease on youtube. It's about 20 minutes long but the lecture covers quite a bit. If you don't want to watch it all the first 10 minutes is the most informative, the rest focuses on surgery. At 6:45 minutes they talk about treatment options. Now when I was 14 and seeing the specialist the guy was awful and I felt like I was being told off every visit but my 14 year old brain remembers him saying that surgery was barbaric (he literally used that word) and involved opening me up from the front and back to realign me and screwing in some rods. I never heard of anyone being opened both ways until this video and always wondered if he was just being overly dramatic to scare me but where this guy references surgery options as being Posterior correction, Anterior Correction and combined (opening front and back). The surgeon I saw in 2017 also brought up surgery but that he would never ever recommend it which was fine with me because what I knew of it at that point I wasn't keen on. He told me there's a 1 in 10,000 chance of ending up with some kind of paralysis because it's a risky surgery, for me I'd have to have the entire length of my spine fused, the surgery involves breaking your spine to correct it (in some cases they use cadaver bone in the correction), that it wouldn't help my pain because that's inflammation and it would just restrict my movement. So if it's not going to help pain I don't see the point in it at all plus being a photographer - even one who uses her camera once a month - you need to be able to get into random positions. At least that's what I thought at the time. I'm not nearly as energetic as I was but sometimes you need to get on the ground or climb on a chair to get the shot. I do always regret it later though and you can read about that on my blog Anatomy Of A Photoshoot where I discussed how a photoshoot affects me physically on the day and the days after. Surgery is considered cosmetic unless you have a curve of 75 degrees and over, constant pain, or it's life threatening - your curve is so severe it's affecting your breathing.
The video then talks about non-surgery treatment and the bottom picture is pretty close to the brace I had to wear in high school for 23 hours a day. For some reason braces are a fetish for some people and I'll never really understand why but they hurt to wear. Like ALOT. I would be in the school nurses office daily crying I wanted it off, my hips would be red from it rubbing against me. The only time I could take it off was to shower. Bracing really only works if you catch it early on. My parents were told it was too late for me because at my age I'd stopped growing but put me through it anyway. I think I wore it for about 6-7 months and it did nothing.
I'm on a Facebook group for Scheuermann's Disease which means randomly I get to see articles about spine health. Lately some interesting ones have come up in regards to medicines and vitamins affect on your bone density. For instance Vitamin D - it's important for skeletal health but like most vitamins there's no real effect by taking more than the recommended daily dose but taking a higher dose of Vitamin D can actually cause bone density loss. On the other hand being Vitamin D deficient can be a problem if you have decide to have kids. In the article Bone Condition Kyphosis Linked To Maternal Vitamin D Deficiency it means that a US research group accidentally forgot to add vitamin D to a food mix for pigs which resulted in piglets being born with kyphosis. A study was then done on 37 pigs in 3 groups: one with no Vitamin D, one with low Vitamin D and one with high Vitamin D to see what happened. After the piglets were born they were put on various diets as well. The study showed that the piglets diet had no real effect on them but the mothers diet was what caused the birth defects. The piglets born to low and high Vitamin D pigs were up to 3 kilos heavier than the piglets born to no-Vitamin D pigs. The study isn't 100% but it gives researchers more to work with on what causes kyphosis and spine deformities. Many in the facebook group themselves are Vitamin D deficient or had family that were. It got me curious about my own but I never got an answer from the relative I asked and I can't ask my mum since she's dead. I don't own a ouija board yet. I've considered asking my doctor to test me just out of curiosity but I'll wait until my next blood test since they're regular enough. Another article Medications Can Harm Bones lists the ways certain medications can harm your bone health even if you're taking them because of spine issues. Most medications have nasty side effects with prolonged use. I try to limit how often I take an anti inflammatory because they can cause stomach ulcers. The idiot at Pain Management wanted me on anti depressants (it's their answer to all chronic pain) which mixed with anti inflammatories can cause internal bleeding. This article looks at what can be damaging to your spine/general bone health. Oral Steroids are prescribed for asthma problems (been on them quite a few times) and can also be prescribed for arthritis pain relief because it's a strong anti-inflammatory medication, the downside is prolonged use of steroids over 5mg a day means boss loss. I've wondered about asking my doctor to try it out and see if it helps with pain because it would mean I'd have no asthma problems too. Two birds. One stone. Some anti depressants can cause bone density loss and increase your risk of fractures. The article also includes medications taken for diabetes, hormones and anticonvulsants.
Over the last three years I've seen a spine surgeon, two neurology teams (technically the physio attached), Pain Management, physio, exercise physio and as of August added Rheumatologist to the list. I had this dumb idea that maybe they could help me since words like arthritis, facet joint arthritis and bilateral facet arthroscopy (aka facet joint osteoarthritis) appeared on my reports so what better than to see a doctor specialising in arthritis. HOW FUCKING WRONG WAS I?! The upside was I got my money's worth in that appointment (yes I paid for the appointment for those playing at home who believe Medicare means free doctors) because I was in his office for an hour unlike the 10 minutes I was in the offices for neurology appointments. For some context at what's coming next - when I saw Pain Management she did a good job of shaming me for the entire appointment making me remove my shirt and telling me my back looks normal and EVERYONE has a curved spine, EVERYONE has kyphosis and how EVERYONE has arthritis it all means nothing. So sitting in the Rheumatologist's office it was a bit like being on trial where he'd ask a question and I had to specifically answer and not go off tangent...even if going off tangent was pointing out I have pain/stiffness in my neck and knee - my neck being the worst body part for pain. He only wanted to hear about my back which was disappointing because even my GP was wondering if I had Fibromigsomethingorother I don't know how to say or spell it but it's means you have chronic pain everywhere. He got me to half lift my shirt while he felt a couple of areas to see if it hurt or not, then rang up the hospital to get them to send through my MRI report from last year BUT he did say my pain is structural and because of the shape my spine is in. Like how can everyone see this except that idiot at Pain Management?! He had no advice for pain relief other than "lay horizontally" when I have a flare up - which I already do so it was cool to have a doctor tell me to do that unlike Pain Managements 'your lazy' attitude. Fun fact: On twitter I bitched about back pain and that I wondered if zero gravity would help since you're weightless and that I'd sign up to NASA to be an astronaut. A friend jumped on there that you shrink in space but he couldn't quite remember. I wasn't much of a fan of being shorter (I should be a foot taller but my spine had other plans) so I jumped on Google and Nasa's website has the BEST analogy for why lying down helps with back pain!!
For all the specialists I've seen not one has mentioned this but the Rheumatologist was the first to recommend it. He did refer me to a sleep clinic though because of how bad my sleep is and apparently bad sleep patterns can make your pain worse. I've always been a night owl but my insomnia kicked in when my mum died. That year my sleep patterns were really bad and it kept up. They got worse when I moved to where I am now because I'm living in a block of psychopaths. Like right now it's 5:30am and I haven't slept yet. If I'm lucky I'll get 1 or 2 hours in before I have to leave the house later. So for now I have sleeping pills (which I forgot to take tonight) until I can get into the sleep study next year.
Since then I've had some fun new developments. Like not being able to walk properly..again. This one particular day about a month ago now I went into the city to get a comic book (took over an hour to get there), back to Joondalup and spent maybe an hour at the shops, then headed home went to the food shop and walked home. In all honesty I didn't do much at all but I stupidly took it one step further by painting my tv stand at 1am. I couldn't sleep (this was before I got the sleeping pills) and figured I'd do something remotely constructive. Council cleanup was coming up in a few days so I was finishing off some stuff for that and two days later it's suddenly hurting to walk and I'm leaning on a trolley walking around Bunnings with a friend. The next day I went to walk to the shop and didn't even make it 5 minutes up the road. To be honest I didn't even make it around to the other side of my apartment block when the pain kicked in hard. I was in so much pain that I sat outside someone's house for 10 minutes before trying again. What's normally a 25 minute trip became 45 minutes. Two weeks later and I still had a couple of issues. No amount of breathing exercises and happy thoughts was making it go away. In the last week I started having hip pain after another trip to Joondalup and randomly getting sharp pain in my foot. The foot pain I'm assuming is a pinched nerve, at least I'm hoping it is, because the first thing the spine guy asked me was if I had leg pain and checked my hip out. All of this is just the joy of having Scheuermann's and osteoarthritis and I need to learn to live with it. It's really fucking hard though when you have to do everything on your own so I basically have to go back to the psychologist (exercise physio told me I needed to any way because I need to talk to someone about my pain) just so I can bitch about my spine at her. I guess it will make a change, I spent half of last year crying in her office. Now I'll just be angry all the time.
Well that's it for World Spine Day. I hope it was at least somewhat educational for everyone!