heya

[Sheena]

hey im new and im unhappy about my operation. i find it hard to talk to people

[mumof5]

Hi Sheena,
Welcome to this forum. What is it that you are unhappy about?
I am sure you will find at least a few people to talk to about anything that you are feeling.
Best wishes
Cheryl

[Sheena]

im just unhappy about the whole thing. my scar looks really horrible and i still have a hump. i know i had a really bad one (it was something like 98degrees) and i know that my surgeon (Jeremy Fairbank, Oxford) said that he couldnt do anything 100%, but i just get so depressed when i look in the mirror

[Sheena]

the thing that prob bothers me the most is that ive become really dependant on other people. i am now becoming independant again, but its hard to get used to. the whole time i couldnt do things like go to school and walk etc i kept saying that i wanted to do it, and i did. i had all of my friends come to my house practically everyday and it made me want to get up and sit downstairs with them. they were all fab and if i said that i was getting uncomfortable then they didnt mind if i wanted to have a lay down.

[mumof5]

Sheena, how long ago did you have your surgery? It sounds as though you may have a type of post op depression, have you talked to your doctor about how you are feeling. The recovery period can seem like it is taking forever. Especially when you are starting to feel better but still have all these limitations.
Keep posting on here but have a talk to your doctors as well. And most importantly make sure you let your parents know how you are feeling. Because they can't help if you don't let them.
Best wishes
Cheryl

[CurvySAT05]

I know that after the surgery you know you are "better" but you still cant do the things you really want to do. Sometimes you feel "good" but you still are restricted. I would talk to your doctor and your parents. If you ever need to talk there is always someone here who would love to help you.

[Sheena]

hey everyone
the thing is tha i dont think i can talk to my parents about it. they dont understand. when i had the steri-strips on my back and my consultant told me that i could take them off, we went home and my parents said to have a shower and get them wet, and then peel all of them off straight away. i tried to explain to them that i didnt feel safe doing that. i kept thinking that the stiches would fall out or something. (i had never been in hospital before, let alone have something like this done, s i was feeling a bit insecure about it). my parents said that it was stupid but let it drop. i allowed mymum to take one strip off every day, so in total took about 12days. everytime one of my friends came round my parents made a big deal about telling them that i was scared the stitches would fall out and how i had prevented them from taking the steri-strips off my back. even now as im writing this im finding it hard because it just hurts so much that my own parents tell people and laugh and joke about what i said and did at the time.
what would i say to my doctor? i just think that if i say something then they either wont be able to do anything, or they'l llaugh at me as well, and i dont want to go on my own, but i dont want to take any of my family.
cheryl, i had my operation in august 05. the scar starts at my next and goes down to my trouser line.
thanks for your replies.
hope to hear from you soon
sheena xxxx

[marmyte]

hi sheena, sorry to hear you're feeling so down. i'm from the UK too - which hospital were you treated at? my aunts, uncles and cousins actually live near maidenhead - small world, huh?

i had surgery at RNOH, stanmore in july this year (i'm 18) and i feel a lot better now. i hope that you have a little confidence in your consultant and feel that you can talk to them about anything and not be laughed at. this is their profession and if they laugh at you for being concerned, you should run out of there as fast as you can, but i don't think that should happen. i'm sorry that you feel your parents haven't supported you in a way you wanted, and the only way to resolve that is to tell them how their behaviour has affected you.

despite the steri-strip drama, you should be feeling better by now if you had surgery in august. what are you up to at the moment and when do you see your consultant next? if you're interested, i'm an active member of a more british-based forum (there's a link at the bottom of my post) and feel free to send me a private message - i answer any questions as i'm really not shy.

[Sheena]

thanks for your kind words.
i am being treated at Oxford NOC, and my consultant is Jeremy Fairbank.
we went for a consultation on November 14th and i spoke to him briefly, but with my parents there i feel like i cant really say what i want to say...if that makes any sense.
at the moment i am not up to much, i am pretty much back to normal, its just the odd days where i get down and then i get depressed. for example the worst is after a shower or something, or also when i look at how my scar looks.
my next appointment is on the 6th february.
i will instant message you
speak soon
sheena xxx

[marmyte]

my advice then would be: write your questions down and work through the list. when i turned 16 i took over from my parents and started to "lead" the consultations, i knew then that it was my right and i had to do things my way a little. they still ask questions if they want to, but it does make me feel like a child when they do that - i'm legally entitled to be there by myself now, but i appreciate the support they've given me. i think i know somebody who sees mr fairbank on the other forums

[gerbo]

wow, 98 degree, that sounds like a lot, how long had you known you had scoliosis? Did you have any other treatment before? (brace)

Has the surgery helped a lot? Has the curve been reduced? And how much bother (beside that scar) are you getting now? Still in pain? Do you feel anything is better then it was before the operation?

It sounds that your parents are struggling a bit as well, and possibly do not know how to handle things. Maybe they are just trying to make light of things, but I am sure that inside they are as screwed up as you might feel yourself.

I usually try to be very matter of fact with my daughter (she is 12 and has a brace) although I never forget how difficult it is for her and will take her serious if she is upset (fortunately not too often anymore)

All the best

gerbo

[mumof5]

Sheena,
Maybe you could 'write' to your parents. I know that might sound a bit silly. But if you write down what you are felling and how things they have done have made you feel, like you would write in a diary. Then let them read it. If you can't give it to them just leave it lying around somewhere where they will find it. Encourage them to have a look on here. Maybe it will help them to understand what you are feeling about all the things that you are going through. Kepping a diary for yourself may be a good idea to get your feelings out even if you can't share it right now.
Your scar should fade with time and it won't be so noticable. You just have to remember that these things take time. It is not something that happens over night just cause you want it to. I know it is hard to be patient when you want to forget all that you have gone through and just move on to the next stage of your life. But it will all happen. Take each day as it comes, and try to deal with any problems when they arise. Then things won't build up to a point where you can't cope. That is all any of us can do.
I hope things start to improve for you soon. You will find happiness again within yourself, you just need to stop and look.
Best wishes
Cheryl

[Sheena]

hey everyone. thanks for your replies.i did have a look on saturday night but my internet connection kept crashing...
before my last consultation, i did put together a list of things i wanted to discuss, and it did help,although my parents insisted on sitting there and listening (which to be honest didnt annoy me),the thing that i didnt like is that they told him about the steri-strip thing, and what i was thinking about the stitches coming out, and that really hurt me.
someone on another forum also sees Mr Fairbank? thats great! ive not met another person who does see him! do you know who? what their name is???
gerbo - my parents first noticed something wrong with my back in May 04 (we were at a wedding). they kept telling me to stand up straight, etc. they wanted me to see a doctor,and ikept saying no (i was in denial about the whole thing).eventually my mum dragged me off to the doctors (in august 04). i wouldnt let me doctor have a proper look,but they still said that they thought it was scoliosis i got referred to oxford where there are specialists. my first appointment there was in jan 05 with mr fairbank. i didnt have any other treatment, that was just how it happened. in a way i do think that the surgery has helped alot,because it jhas stopped it from gradually improving. i mean for example at first the curve was in the 70s,and by a year it had gone up to 98degrees, and that is quite a bit in such a short space oftime.
iwas told that the curve was squashing my ribs on one side. i had a lung function test and that showed that my lungs were only 60% of what they shoukd be. apart from the scar, im not getting that much bother from the operation, except for the numb patches. i have quite a few, and it gets me down. i think that im glad ive had the operation because my back does look better, but its still noticiable.idont know what the degrees is now....need to find out in feb.
mumof5 - i will try and write my parents a letter. it does soundlike a good idea because it means i can say what i want without my parents interupting. thanks for that idea.
look forward to reading your replies!
hope you are all well
thanks
sheena xxxxxxxxxxx