Its alot to handle.

[Sheena729]

I was first diagnosed with scoliosis in Oxford in January 2005. (well that was actually my first appointment with a specialist consultant). As soon as he started talking about 'scoliosis' and 'back curvatures' and 'fusions' i just felt totally lost and confused. From here i just refused to discuss it with my family and friends and basically pretended like it wasn't happening.
At all my further appointments i just wasn't interested. On the car journeys down, i sat there listening to music and reading a book so i could get lost in my own little world. I felt like i was alone, and that i had noone. As i am not especally close with anyone in my family anymore, i didn't feel comfortable. With friends at school i felt that they just didn't understand.
When it came to the day of the operation (17th August 2005) it felt like a dream. A horrible dream. And that i was some onlooker that was just watching. Even being wheeled to theatre i was expecting someone to jump out and tell me it was a joke and that i can go home. But of course, this never happened.
My stay in hospital wasn't the most pleasant of experiences. I was quite depressed, refused to get out of bed, and was horrible to all the nurses because i was frustrated at not being able to go to the toilet on my own, etc. Also being a private patient wasn't the best idea because it meant i was the youngest person in the ward and was stuck in my own room with no interaction apart from visitors.
When i started walking again i realised something wasn't right with my leg. I was having strong pains in the back of my left thigh which was worrying me. So when i approached my consultant, he dismissed it saying it would get better. It didn't.
Since then, at all appointments i have stressed how much it hurts and my consultant has looked and said that there is nothing wrong with it. Then he said i was fine and took me off his patient list. (April 2006)
My leg has been aching consistantly since the operation, and in November 2006 i started having shoulder pains which were really bad. This scared me because i thought that the fusion may have been unsuccessful, so i went to the doctors and got referred back to my consultant.
I had the appointment on Monday (5th February 2007) and got told that the pains were due to one of two reasons. Firstly, the bolts in my back from the operation may be 'rattling' causing them to rub against nerves, resulting in the pains. Or secondly, that i have an infection in my rods. He also said that having another operation to remove the rods will stop the pains.
This has scared me enormously. I didn't get upset on Monday until i got told about having a blood test (i am VERY scared of needles) so i started crying and all the informaton i had been told started to be overwhelming.
My parents didn't say anything to make me feel better, and instead thanked the consultant and the nurses and we went home.
We haven't discussed what we're going to do at home, but since i will be 18 this year i know that its my choice to make, unlike the last time. It's a really hard choice to make because i don't know if i could handle the pain if it gets worse, or if i'd be able to have the operation on private health care in a few years.
All i know is that i'm going to need all of my friends more now then ever before.

Sorry for going on about all this, its just so hard for me because i don't really have anyone to talk to about all this and noone really understands because they haven't gone through what i have.

[Spencer's Dad]

Hang in there

Sheena,

Sounds like you have a lot going on right now and have some hard decisions to make. Hang in there. You can make it through this.

I'm sorry you dont feel you have anyone close to you to talk with about what is going on. I know sometimes it's hard for parents to talk about difficult things with their children, but I'm sure they are concerned about you and want the best for you. Have you tried posting on spinekids.com? There are a lot of kids of all ages there that have had a lot of experiences with scoliosis.

Hope you find some relief from your pain and some peace of mind. Keep us posted.

[The Slice]

Hang in there girl! I know it's tough, but remember this the scariest thing is the unknown. I've had so many needles in my life, that I've long since lost count. Even to this day, at the age of 50 I'm still kind of scared of needles, and then I remember that what I'm really scare of is whether or not it will hurt. I remind myself that even if it does hurt, I've felt things ALOT worse, and that as unpleasant as it may get, it'll be over soon. If you turn 18 before a decision is made about further surgery, yes, you will be the one to make the decision as you will legally be an adult, but it doesn't mean that you have to make the decision alone. Get the help of your family and or friends especially if you have a "significant other". I'm sure that they would appreciate your getting them involved and getting their feedback. What I would do now is to get further testing done (if warranted) to find out whether or not there is in fact an infection as you don't want to let that go too far. The first thing to do is see what the results of the blood test are to see if you do have an infection, then take it from there. What you may want to do is get a second opinion as to what may be going on before making a decision. Also check with your parents as to what their medical insurance coverage for you is. You may be covered under their insurance until you are 21.

[Sheena729]

Aww thank you both for replying to that. I think i will be finding out the results from my blood test at the end of this week, and like you said it might not be accurate so i will probably have a second one done just to be sure. My consultant did say that even if i do have an infection it might not show up on the results..which is just a road i'll have to take when it comes.

I did sign up to spinekids.com its really similar to this one!! Hopefully on there i'll be able to discuss what i'm going through with more people in a similar position. I don't know why, but talking about my scoliosis on here is so much more easier than talking to my friends and family because they don't really understand what i (and those in a similar position) have been/are going through.

Thanks again, much appreciated

xxxxx