Hi, I’m Jessica, and there’s nothing straight about me- particularly the two 45 degree curves

in my spine!

Which is what we’re going to be talking about today, along with showing you some of

my fun x-rays!

Occuring in about 3% of people, scoliosis is a medical condition in which a person's

spine has a sideways curve. The curve is usually an ‘S’ or ‘C’ shape and can involve

twists in various dimensions. Girls are typically more severely affected than boys and it most

commonly occurs between the ages of 10 and 20.

In some people, the degree of curve is stable, while in others, it increases over time depending

on the cause of the scoliosis. The degree of scoliosis can be very minor and typically

not cause many problems whilst severe cases can interfere with breathing. I find that

because I have hypermobile joints I can actually accidentally make mine worse by just lying

on one side for two long or being curved too much and that can effectively stop my breathing.

Which is something I now realise I shouldn’t smile whilst saying but…

What can I say, I’m full of relentless optimism, painkillers and diet coke!

During research for this video I read the line “Typically, no pain is present” and

honestly I was floored. Floored!

To show you why, here is an x-ray of a normal back. Here is an x-ray of my back. Yep. That’s

my spine. Now please, on a chart of 1 to 10 please imagine how much that hurts.

Holding that number in your head? Good. Now times it by four!

Boom. That’s how much my back hurts.

But sure, apparently most people aren’t in pain. Which is nice for them.

But ignoring those people… symptoms associated with scoliosis can include:

Pain in the back, shoulders, neck and buttocks Heart and lung problems

Constipation and pain due to stretching of stomach, intestines, etc.

Functional limited mobility Painful menstruation

Uneven musculature on one side of the spine Slow nerve action

Uneven hips, arms, or leg lengths And Rib prominence or a prominent shoulder

blade,

Much like my glorious lesbianism, my scoliosis isn’t necessarily visible unless you’re

looking hard enough.

I have an s- shaped spine and I’m very fortunate in that my two curves are about the same degree

which means that my head is pretty much exactly in alignment with my pelvis, even though my

spine does some weird things in between. So I look straight.

Which was a problem when I was dating. [beat]

Oh I’m going to keep that going all video.

So I look relatively normal- and yes, I’m going to say ‘normal’ a lot in this video

so… yes, that’s just happening. I can’t use ‘typical’ since I have to use it to

describe the most common types of scoliosis and let’s be honest- it can only be used

against us in a bad way if we let it be. I’m not ‘normal’ and that’s not a bad thing.

Keep watching and I’ll show you some close up shots in a minute...

The cause of most cases of scoliosis is unknown but is believed to involve a combination of

genetic and environmental factors. If you have someone in the family with scoliosis

you are more likely to get it. It can also occur due to another condition such as muscle

spasms, cerebral palsy, Marfan syndrome, and tumors- your spine can literally just grow

around a tumor, like a river around a rock. Mine is due to my underlying neuromuscular

problems not just… being really gay.

But whoever saw a straight rainbow…?

There are two classifications of scoliosis: structural, in which the spine is in a fixed

shape or functional in which the spine itself is normal but it has been pulled into a curve.

An estimated 10% of cases are due to a neuromuscular disease, 15% are congenital and 65% of scoliosis

cases are idiopathic- meaning with an unknown cause or apparent spontaneous origin.

I love it when the medical industry admits they don’t know everything… but also hate

it because it would be really useful if they did.

Also: top marks to whomever just worked out that only added up to 90%. The other 10% are

things like the tumours we mentioned earlier.

Congenital scoliosis- ‘congenital’ by the way means that it’s a condition present

at birth- can be for a number of reasons to do with the spine’s formation during weeks

three to six but most other types develop during adolescence. Mine started when I was

about 12, I think, as I was getting really, really bad headaches and growing a lot at

that time.

At whatever age it’s first noticed, diagnosis is confirmed with an X-ray because…

Yep.

It’s curved.

Scoliosis associated with known syndromes is subclassified as “syndromic scoliosis”

and boy are there a lot of them! To pick three out of a hat: Charcot-Marie-Tooth disease,

Ehlers-Danlos syndrome and spina bifida. And I only picked those three because I can actually

pronounce them. If you’ve got one of the myriad other syndromes that have created a

scoliosis please leave me a comment… with tips on how to pronounce it because… I…

I cannot.

Moving swiftly on.

Another form of secondary scoliosis is degenerative scoliosis- this is the type we see most in

older people. You’ll probably have seen your grandparents or people of their generation

shrinking and getting humps on their back as they age.

Unless you have those freakishly fit grandparents who like to hike up mountains at the age of

105 and can still robustly debate the ethics of the modern living wage as they do so.

Personally I intend to use my old-person privilege for such fun things as no longer being glared

at when I sit in the disabled seat on a bus.

I have a literal pass that means I’m allowed to sit here, Janet! Stop trying to set my

head on fire with your eyes!

Anyway, that’s a de, which means ‘new’, referring to the occurrence of the condition

during later life. It’s generally because your bones become weaker and the ligaments

and discs located in the spine become worn in an asymmetrical manner.

Look after your back now and it will slow the process. You have been warned. It’s

too late for me but you can still save yourself.

Is what I’d like to fool you into believing.

My mother has had a bad back since I was a little girl because yes this connective tissue

condition is inherited and also yes my brother and I were offensively large babies to carry

around for nine months. I was nine and a half pounds when I was born and he was ten and

a half.

That’s the same as a large bag of potatoes, a small microwave oven, a six-foot aluminum

step ladder a medium size bowling ball or two bottles of two-litres of Diet Coke.

Thank god I’m a lesbian and there’s another womb in this marriage.

I decided from a young age that I was going to do my utmost to protect my back and- deeply

ironically- keep it straight. And we all know how well that turned out (!)

I’d sit up ram-rod straight at all times, I wouldn’t slouch, I put my shoulders back…

And then I developed a scoliosis anyway!

I started to get terrible pains in my back especially my right shoulder-blade- the curve

at the top is to my right- to the extent that it felt as if someone had taken a boiling

hot poker and was attempting to wrench off my shoulder blade. I could feel how taught

my organs were as well, especially when I ate and it felt like someone was stabbing

me repeatedly.

The worst thing was going to school (obviously) because I had to carry a really heavy backpack

full of books and it honestly meant I was in excruciating pain all day long. I used

to lie to my mother at the end of every day telling her I’d lost my bus money or spent

it on something so she’d have to come and pick me up. I would be in such horrific pain

that looking back I honestly have no idea how I coped and I don’t think the people

around me necessarily realised, because it had been such a gradual thing…

My parents paid for me to see an osteopath every week for five years and it would feel

amazing and be really helpful for maybe a day or two afterwards- and I’d also be taller

because my spine had straightened- but it wasn’t very long term. I spent a lot of

time lying on the floor which does help my main back a bit but is really painful for

my right shoulder because it has a winged scapula (shoulder blade) which points that

way rather than to the side.

That’s because all of my ribs have twisted to match the curve. All the ribs at the top

go this way, and the ribs at the bottom go this way. So I have a little hump on my top

right and on my bottom left.

Because the degree of my scoliosis was quite severe it was suggested that I could have

had surgery but the doctors and my parents didn’t think it was a good idea because

I already had quite weak health, it’s a big surgery and I would have had to be on

bedrest for six months…

Which considering I then ended up on bed rest for two years in my late teens I always feel

we should have somehow coordinated.

Unfortunately as time went on, by the time I was able to make that decision myself it

was too late because all of my ribs had then become individually twisted meaning that they

would all have had to be broken in two places and then they’d have put the metal rods

in my spine… so great(!)

To break down my scoliosis and what it means…

I got some X-Rays taken!

Was that specifically for this video or just to fill my own curiosity…? We’ll never

know!

But they cost me money so I’m monetising this video. Although those are my boobs so

let’s cover them up to keep YouTube happy.

Perfect.

I made my friend Candice, who can actually read X-Rays, tell me what these really mean

so I’m just going to read her words out to you because they’re fancy, the mispronunciation

is obviously my own:

So this shows… a Levo convex lumbar scoliosis. Dextro convex scoliosis thoracic

Meaning my lower spine curves to the left with my vertebra rotating to the right and

my upper spine curves to the right with my vertebra rotating to the left. If you don’t

know, vertebra are the building blocks that make up your spine. You get a curve one way

with the vertebra rotating to the opposite side via mechanics called coupled motion.

Keeps you balanced I guess.

You can measure the degree of curve in the spine using a thing called the Cobb angle,

which looks like this: It’s confusing.

Because I have a hypermobility condition my back can change quite a lot- if I’ve spent

a lot of time lying down I’ll generally be taller and straighter.

Not THAT straight obviously...

On the day of my x-rays though my upper curve was 33 degrees and my lower one was 43 degrees.

Whilst we’re on the top X-ray: you can see my jaw angles to the left when it’s open.

It’s grown that way because of the curve in my spine. Wonky jaws are linked to the

neck and how a person holds their head, influencing the tone of the muscles around the top of

your neck and jaw.

I’ve suddenly realised I’m more than naked on the internet, which is… an interesting

experience but hey, you can never say I’m not open with you!

Back to the first X-ray…

The right ilium rotated backwards, left forwards. Which basically means the right side of my

pelvis has dropped backwards, making it look bigger on the x-ray, the left forwards making

it look smaller. They are in fact the same size, but due to the physics of x-rays it

looks distorted and different.

Yeah, don’t worry, it’s just the picture, it doesn’t hurt at all (!)

This third X-Ray shows my lower back from a different angle and you can see how tilted

it is as I seem to have two lines of my back but that’s just because the right hand side

is further forwards. Apparently I have an ‘Increased lumbar lordosis’. Its normal

to have a lordosis, the curve in your low back, but when its increased your centre of

gravity is shifted forward.

Which is probably why I fall over all the time. One of many reasons I fall over all

the time.

And finally… ‘Reversed normal lordosis in lower cervical spine, kyphosis C4-7’.

I don’t know what these words mean.

Can’t lie, I thought the cervical spine was going to be the part of the spine closer

to my cervix but no, it’s actually my neck. Here’s a normal neck for comparison:

Apparently it’s normal to have a curve or lordosis in the neck just like in the lower

back. But as you can see the bottom part of my neck curves in the opposite direction,

(lovely) which is called a kyphosis. This tiny curve is probably what gives me most

of my headaches and pain, as there is abnormal mechanical loading through this part, adding

pressure to the joints and muscles there to keep my head up.

Yuuuuuup.

It’s literally hard for me to keep my head on.

Traditional medical management of scoliosis is complex and is determined by the severity

of the curve and also how old you are. Conventional options for children and teenagers are observation,

bracing or surgery. I had x-rays every six months as a teenager so they could

watch the curves develop but I didn’t have a back brace… I would have happily worn

one though because Sarah Michelle Gellar wore one for her scoliosis and I would have done

anything Buffy thought was a good idea.

(Still would)

Adult scoliosis treatment focuses mainly on relieving any pain and involves lots of painkillers

if necessary.

Which it absolutely is.

Fun fact: some humans may have developed scoliosis simply because they’re humans. Scoliosis

has not been found in chimpanzees or gorillas and thus it has been hypothesized that scoliosis