h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Just add to this conversation

I managed to find it - yeah! xx

Hi Helen!!

Really sorry but i have to sneak off just now but i'll be back later!!

Thanks Purps

Helen - hope you're still around

Where do we start?!?!

What did you want to ask me again?? Sorry my memory is rubbish!!

x

Hello!

Im here, abit around and about today because of work.

I guess how did you get diagnosed? I was about to do work experince at heathrow airport and was trying on lots of clothes that didnt fit very well. Mum said she noticed then but didnt mention it before I went as she didnt want me to worry. When I came back, I looked at myself in a mirror after a shower and was pretty shocked! I was only 15 at the time and all the rest of my body was changing, so it was hard to notice at first. But once I saw my xrays, I nearly fainted! Looking back at old photographs it was so obvious, but we jsut didnt see it at the time.

In America, every teenage girl gets routinely checked for it - nobody knows about it in the UK. Strange.

I too was told I would be in a wheelchair by the time I was 30, thats only 6 years away from now - scary stuff!!

xx

Here goes!! I understand where you're coming from 100%!!

I too was about 15 when it was discovered... mum kept nagging me to sit up straight then when i eventually lost the plot & screamed I AM!! She said - go and look in the mirror... we then realised my right shoulder was sitting waaaay forward... made a docs appointment and was eventually reffered for an x-ray. I was like you sooo shocked when they said 'this is what a regular spine looks like' - 'and this is yours!!!' OMG!!! They seemed to have no idea what was wrong with me which was very worrying... i was sent for what felt like never ending tests including checks for marfan syndrome then eventually the said it was scoliosis.

I'm assuming your test & check up's were the same.... hideous for a teenage girl who's body is changing but suppose they have to be done... my surgeon/doctor was the specialist for these type of things which made me happy but also meant there would be an additional 4 guys training with him every time.... made me feel like 'hey here comes the freak show!!'

They wanted to wait til 1 had stopped growing and out of my teens but the curves were getting so severe that my ribcages were crushing my lungs so they had to operate quicker.

Ironically I had been going to the doctors for regular asthma check-ups for years, which involves them listening to your chest but on your back.... I was soooo mad that he never noticed anything!!

Even now no-one ever seems to know anything about this condition - scary!!

Sorry for the huge long post!! I'm soooo happy to finally have met someone who has gone through this

xx

It is nice - makes me feel less freaky!

Sounds like mine diagnosis was a bit easier than yours! My doctor knew straight away what it was. I showed her my sticky outy hip (where the bottom of my spine was pushing my pelvis out) and my sticky out shoulder blades (where my spine was twisting!) and she made me bend over straight away, did the test and announced I had scoliosis! I was then referred to a specialist who confirmed it etc. I too had a squahed lung which isnt very comfortable is it!?

I was very very very lucky as my parents paid for me to go private through BUPA. I saw the same surgeon from the start to the end, but apparently had a 'student' watching my op! My parents only told me the day before I went in that i was going in! Was a shock (to say the very least!)but im glad they did it as i had less time to worry about it.

Sounds like I had slightly different rods than you. They could only correct one of my curves as otherwise they way they would have had to do it would mean that I couldnt bend at all! So I have one rod going from hald the bottom of my spine down to the bottom with five rods going in between the vertabra (sp!) which we then bolted on. Apparently, he used a screwdriver (obviously a medical one!) to screw the rods in which helped to straighten my top curve a bit. My op was 8.5 hours long I had to stay in intensive care for a week as my lung collapsed and was in hospital for just over three weeks in all.

So nice to speaks to someone who understands. Do you get back ache? I do everyday but have learned to live with it. Do you find that people look at you now and say "there cant be anything wrong with you?". I hate that.

Sorry about the essay!

I know what you mean - I felt like a freak too!!

Your diagnosis might have been easier but for the op bit!! Mine was on the NHS but i went to the Princess Margaret Royal hospital in Edinburgh, my surgeon was a Mr McMaster who to me is god coz he fixed me & I feel I owe the fact that i can live a 'normal' life to him Once they reffered me there I saw him the whole way through too

My rods are attached by bits of wire which were inserted through the vertabrae then attached again to the rods at the other side (if that makes sense!) and a few whopping big screws nuts & bolts!!

My op was about 8 hours too - no complications.. they said i would be in hosp for a minimum of 14 days -------- i was out in 10 or 11!!! Broke all their records the docs were amazed & reluctant to let me out but i was as soon as possible, nearly made myself sick a few times trying to get up & about too soon but i was determined

I don't really have any pain now other than when i overdo things... then i get sciatica (sp!) and my left leg randomly gives way I know in myself what i can & can't do... i go to kickboxing twice a week & the gym a couple of times the thing that gives me most pain is being on my feet too long, walking is ok but standing is a killer! for you and for the pain!!

Yeah people have no idea what our poor badies have gone through - my spine couldn't be straightened completely as it was too badly twisted although i came out of the op 3" taller!! my big sis was ragin coz she's short!!

Sorry i'm prattling on again!! I actually feel quite emotional about all this... I feel like we know each other already (not meant in a creepy way )

Soooooooooooo much more to say!!!!

xx

I know what you mean, its such a massive thing to go through and I suppose we have just connnected because of it! I get emotional about it to, it was a hard time and (hopefully) the biggest thing we'll ever have to do. People just dont understand what we went through no matter how hard they try.

I started sixth form after my op and people just took the piss out of my brace and coz they thought I was faking it. I used to get ribbed something awful about not doing PE. I guess because people cant see it, they dont believe the severity. I hate shut a few up though by showing them my pictures of my xrays....! I only got signed off from my doctor three years ago, so all in all it has been a five year process!!

Im getting married this year and when trying on dresses experienced the worst back ache EVER! The dresses were sooooooooooo heavy, I was actually in tears where it was so painful. It's not fair that you dont get back ache much and your spine isnt fully straigtened either!!!

Do you have a wicked scar?! I absolutely love mine and dont care about showing it off. Mine goes from my belly button to just below my shower blade. Get some funny looks at the swimming pool but Im proud of it!

xxxx

I deffo know what you mean about people at school taking the mick they used to say i had bigger lumps at the back than the front & oh gods knows what else!! I did however have a really great bunch of mates around me wh made sure i kept it together!!

I was supposed to go in for my op when i was in 5th year so deliberatley took loads of modules that i could easily keep up with.... it got postponed & i didn't go in til 6th year, right in the middle of my highers i ended up dropping them all & once i was fit again i looked for my 1st job

I had a body cast (that i couldn't take off atall!!) for 6 months.... it only got changed once & that was coz i lost so much weight in hospital that the cast moved & was sitting right on my sciatic nerve OMG that hurt!!) they out another one on & that was it for 6 months!! Rank or what?!?!

I hate my scar - mine goes from the top of my spine to nearly my bum!! i did once on a night out have a girl come over & say Eeeeeeew what the hell is that?! I replied - what are you talking about & she pointed - heehee i said OMG how did that get there?! She was sooo pee'd off!! They just scraped what bone they needed from my hip bones!! Yeeech!!

xxx

P.S. I don't have internet access at home so i'm only on here mon-fri at work incase you think i'm ignoring you!!

No problem, Im not here on monday so wont be ignoring you then either!!

Getting down to details, your operation sounds really quite different to mine - your scar is in a completely different place for a start! i didnt have stiches on mine, it was 'superglued' back together so it is REALLY neat. Just looks like a white line, about 3mm thick.

My body brace was removable but only for bed and showers! I had mine on for 8 months, they had to make quite a few but just to adapt to my changing back shape! I also grew 2"!!

Thats great, dont you love tkaing the piss out of people like that! And if I had a penny for everytime someone asked me if i beeped at the airport security machine then i'd be very rich!

I actually lost a lot of my friends after my operation, no0one came to see me at all! And to this day, I dont know why - maybe they couldnt cope or something. My parents planned my operation for the summer holidays (2 days after my last GCSE!) so all my friends had been home so I think they were just mean! Certainly lets you know who your real friends are!

Ive found that it has completely changed my perspective on life. I bought a strapless dress for a friends wedding back in May and I actually CRIED as I was so amazed that I coudl wear a strapless and tight dress without looking all wonky. As you said about your doctor, I really do feel like I owe him so much for giving me a normal life. I meet him when my bf mum was in hospital in his ward about 7 years after my op and he actually came up and said hello! He said he would always remember me as I had the same name as his mum!

I'm feeling abit teary now, how silly!!!!

xx

I had soluable stitches - you know someone asked my how many stitches i had !! Just realised too i was 16 when i had the op not 17!! I know what you mean about the airport thing

That's a pity - but you are right you know who your true friends are I must say my mates were fabby.... although the guy i was seeing at the time didn't last long, he wasn't being very patient & couldn't seem to understand that what he wanted was the last thing on my mind he was well & truly ditched!! My OH now is soo sweet about it, won't let me lift things & looks after me - i swear he's psychic sometimes, i'll be doing stuff then get a twinge in my back & he'll be like right you sit down or go run me a bath!!

My shoulder still sits funny but i've kinda given up caring what other people think & wear what i want!! WOre a strapless dress for the 1st time too about 5 years ago (as bridesmaid for my best mate!) she let me choose the dresses for me & other 2 bridesmaids coz she wanted me to be cumfy!!

I'm feeling teary too!! shocking!!

P.S. my scar is about 1cm thick & still a kinda pinky colour - I still dont have full 'feeling' in the very bottom of my back - when OH touches it it's like it's been numbed if that makes sense?!

xxxx

Yeah, i do! Im really jumpy about my back and go MAD if annyone touches it. The only person that can touch it without me going mad is my bf!!

I was with a different bloke when I had my operation. I'd meet him only four weeks before my op and hadnt told home anything about it....!! But he was absolutely wonderful and waited on me hand and foot! We stayed together for another two years before we finally grew apart, we are really still good friends and he is now also engaged. My current bf is just like yours, wont let me carry anything or do anything that might hurt me! My mum is the funniest tho, she will carry all of the shopping bags and no matter how many times I say to her I can help, she just wont!! My funniest memory was when we were in a supermarket after my op and I had my brace on uder my jumper so you couldnt see it. We were at the till and I said to my mum "Mum, my shoe lace is underdine" so she promptly bent down and did it up (she obviously didnt want me tripping!) and the lady in the next queue looked at my mum as if she was mad and called me spoilt!!! Mum and I just cracked up!!

Im going now until tuesday, Im going away for the weekend! Would like to keep chatting tho if thats ok, its been so nice talking to someone who knows EXACTLY what I've been through.

Have a nice weekend xxx

I really should proof read - that is mean to say my "shoe alce was UNDONE!!" god knows where that spelling came from!! xx

Definately - this has been fab!!

Speak to you tues & have a great weekend xxx

Hi Helen!! Just thought i'd sneak in here & make sure you're still here!! I've been totally swamped at work lately so i've not been on much

Hope you're doin well & we can keep chatting away about our bionic spines!!

xx

Hi Cheeky,

Sorry I havent repleid for so long, I too have had some manic weeks!

I got made redundant a couple of weeks ago and have since started a new job where Im too busy to check the net much! Im also getting married in 67 days (not that im counting!) so am spending most of my free time either at the gym or doing organising!

I have my first dress fitting next week so am interested to see if the dress makers notices anything different with my body shape!

Hope you are well

xxxx

Hi Helen

Sorry i have taken so long to reply.... trying to be good at work & not spend too long on here... the way things are just now i don't want to been seen to be slacking at work

That's not good you got made redundant... glad you found something new so soon though - well done you!!

for the wedding news... hope the dress fitting goes well.... hope to hear from you soon hun

xxxx