#fused spine

[vellichorvaults]

About 8 ish years ago, I went to my mum and asked her to do some research on the long term quality of life for people with fused spines.

I had looked for anything, any research at all, on people like me, living independently, having families, being happy. There was nothing. No papers, no focus groups, not even a pamphlet. No one was asking us what it was like to live with almost the whole length of your spine fused together.

Today, I watched her present one of several papers we have written, at the RCN conference. It was only a small part of the overall project but it was providing an evidence base for pain in adolescent idiopathic scoliosis. Proof that despite the clinical belief that scoliosis isn't painful, many of us experience it. I got to tell a room of medical professionals that I experience pain, that it was a 5 with painkillers and 7 without. And they listened. One lady told us she would go back to her team and adjust the way the talked to AIS patients.

If that's all we achieve with this work, I'll be happy. Because I sat there, listening as our experience was explained, was listened to, feeling overwhelming grateful and proud.

We're working on more papers, more studies, we are trying to get our work in front of clinicians, surgeons, gp's, so people newly diagnosed can make truly informed decisions about their care.

[groovyspinewitch]

I really hate having to forgo a workout tonight so that I can make sure I’m not in too much pain to enjoy my weekend with my partner. 

[groovyspinewitch]

Is now a good time to talk about how attendance policies are ableist? Is this the right time... should I come back? 

[no--tiene-sentido]

it’s incredible, because everyone of my class, every person of my age cares about if their crush notice her/him or if they talk to them, but not me. Why? Because I have to care if my back hurts, if I do any wrong movement, if i will need another surgery in the future, etc. No one can understand me. 

[disabilityuserboxes]

this user has a fused spine

[chronic-pain-in-my-ass]

I finally know now that I was fused T1-L3

[doevina]

#worldballetday this is a video of me in class (I’m the one with the weird back and knee supports) before I get any hate I have suffered with severe scoliosis for most of my life and my spine is now fused:)

[doevina]

Its Scoliosis Awareness Month

As it is June which is National Scoliosis Awareness Month and I am a Scoliosis Survivor and have had it since childhood, I'd liked to share some symptoms of Scoliosis to raise awareness of the disorder and helpful things to cure/treat symptoms,

Symptoms:

Uneven shoulders, one shoulder is lower than the other or is sticking out the side irregularly

Lump on one shoulder or weird fold (allot of people call this angel wings)

Noticeable loss of flexibility of your back, a example is no longer being able to touch your toes

Stiffness of back

When bending over one rib sticks out and looks like a large mass

One side of your back sticks out more than the rest when standing

When lying on your back, one side of your body sticks out irregularly making the stomach look twisted

Skewed Hips

One leg being longer then the other

Back Ache

Nerve Pain or burning sensation when doing day to day activities

Belly Button is not in aliment

Not being able to tilt your head backwards (you cant make the back or your head touch the lower part of your neck) 

If you have any of these please to go your local GP or Doctor, it may be nothing but you could have mild or severe Scoliosis and the sooner you find it the more manageable it can be.

Treatment:

There are many Scoliosis Treatments depending on how bad the curve is. It is better from my experiences to try the non surgical and non bracing treatments first, as bracing can be really hard to cope with physical and mentally and Spinal Fusion should only be a last resort because it is irreversible and can cause a lot of problems for some people after surgery.

Some of the top methods of non surgical treatment is

Thereflex: this is basically a hand held machine that massages the back and strengthens the back mussels to correct the curve

Schroth Method: This is a series of exercises you can do at home or at a centre that help with pain relief and correct the curve

Yoga and Pilates: This is also good for pain relief and strengthening the back mussels 

Spine Core Brace: This isn't a plastic or metal brace that is horrible, it is a soft fabric elasticated brace that is good at correcting curves and is like wearing a cotton vest

Practising Good Posture: This may seem impossible and is painful for the first week but forcing yourself to have good posture by pushing your shoulders back really helps your back mussels and reduces pain and makes it less noticeable

.The pain of it can be really horrible so being through it all and basically still going through it i have some tips i hope are helpful

Always take pain relief like Paracetamol if you are in pain

Pain relief creams are good for burning nerve pain

Hot baths are amazing

Freezing cold baths are good also because it numbs everything

lying on flat surfaces like the floor when in bad pain (sounds weird but it works)

STRETCHING do it when ever, its better to get weird looks from you stretching in a public place like a cafe then be in pain all day

For really bad pain ask for stronger pain relief (if doctors say no demand it)

If the pain is too much let yourself cry it makes the pain go

Distract yourself with non painful activity's like making loom bands

Tell yourself your not in pain (this works you trick your mind into thinking your comfortable)

Also here's some helpful links for more information on Scoliosis

http://www.nhs.uk/conditions/scoliosis/pages/introduction.aspx

http://www.sauk.org.uk/

http://www.scoliosisinlondon.co.uk/

http://www.backcare-clinic.com/Treatment/Theraflex

http://www.spinecor.com/Home.aspx

Also the Tumblr community is amazing and is really supportive is your having a tough time coping with Scoliosis. And just a last reminder that so many people have Scoliosis and it doesn't make your a freak or and ugly person it makes you a unique and strong individual and every back is beautiful and you shouldn't put yourself down because of it

Feel free to message me about Scoliosis and any questions you have on it like going through surgery and post surgery because I've been though it all :)