Before you begin reading, this is a long post but I just need to get this out, and hopefully speak to people who are in the same position.
Hiiii...My name is Ashlie, I'm 23 years old and have had a severely damaged spine since I was 10 years old. First I had a sudden infection in my discs called Discitus. (Same as Meningitis but in the discs)
I could walk in small stages but after I had my first ever MRI scan, I came out it not being able to walk..for the next 11years!! I was told I'd never walk again by doctors, but being a stubborn as I am, I wanted to prove to myself and the doctors that they were wrong. It took me a long time but I did it! Been walking for two years now, although I do still have to use crutches quite often when I struggle to walk.
So to cut a long strong short, I spent the next 13 years being told by doctors that the constant pain I felt every second of every day was in my head.(as they had treated the initial infection when I was first admitted). But I knew this wasn't true and that the pain I was experiencing was extremely real. I refused to accept this and never stopped fighting to see doctor after doctor. Finally in March 2014, 13 years after he told me I was making it up, I saw that very same surgeon again. He didn't even examine me! He pulled all of my scans up on his computer and immediately told me exactly what was wrong with my spine. I was told that every single disc in my spine was either slipped, bulging, all are very dehydrated and some are crumbling. He then went on to tell me that I have a deformed Sacrum (which causes extreme constant pain in my legs, groin, knees & ankles) and said I have the spine of a 70 year old woman at the age of 22. He then went onto explain that as my spine was so severely damaged that no surgeon in the country would operate and that I'd have to manage on painkillers for the rest of my life. Again, I refused to accept this so I contacted my GP and asked her to refer me to another hospital. (This is the good part!!...) I received a letter a few days ago, telling me that I'd been referred and that I'd be seeing a new spinal surgeon soon! Of course I'm absolutely over the moon at the thought of this. So I'd urge you guys, if your feeling like giving up and letting your pain/condition beat you...STOP AND THINK AGAIN! You don't want to live the rest of your life like this! So please, CARRY ON FIGHTING!!
Although this new surgeon might not even be able to operate on me, I have hope until he says that, and if he does say that, I'll be straight onto my GP asking for yet ANOTHER referral. And I won't stop until something is done to manage my pain.
I'm fed up of my boyfriend having to literally carry me to the toilet, getting me dressed, and everything else he has to do when I can't move. It isn't fair on him, and it isn't fair on my mental state. So I will carry on fighting for as long as it takes. I've seen every doctor you could possibly think of in the last 13 years and I'll carry on until someone helps me.
What also comes with all of these problems are feeling sad, depressed, incredible alone, insecure, worthless, and so on.
So I'd like to say if anyone has anything like me, and is feeling alone and scared, like me, then I'm here to talk, support and help in anyway I can with a listening ear. People who don't suffer the way we do, they don't understand the exact extent of what we have to go through every second of every day. So if your in the same boat as me feel free to send a private message and I'll get back to you. I hate feeling alone in this, like I'm constantly fighting a battle I know I won't win. Luckily I have a very supportive boyfriend who is my rock and he,so and supports me through absolutely everything I'm going through. I hope all you guys have someone supportive to help you, if not I'm always here's to listen.
Sorry for essay!! Haha
Hopefully speak soon