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Robbie
09-15-2006, 04:16 AM
Hi,

My name is Robbie, and I'm eighteen. I was diagnosed with scoliosis back in March. My mum noticed that my right shoulder blade sticks out, and she took me to our GP who referred us to a scoliosis specialist in Oxford, England. He took some x-rays and got back to us a couple of weeks later and said that I had a forty degree curve (that's all I was told, my parents probably know more) and wants me to go back in December for more x-rays to see if it has gotten any worse.

I've been thinking that I want surgery to try and correct the curve because it really bothers me. I hate the thought that my spine is like that. I know that it can never be cured, but I'd like to try and do something about it. Because we didn't find out about it until I was eighteen, I guess I'm not exactly a candidate for a brace because I've pretty much stopped growing. Is surgery often carried out for forty degree curves?

I recently got a typing job with a publishing company, and all of the time sitting at the computer typing has really made my back hurt. It takes me forever to get in a comfortable position to sleep at night, and even just standing up or walking around for a while makes my back ache a bit.

Robbie.

macky
09-15-2006, 05:55 AM
Hi Robbie and welcome. Because I had my surgery done so many years ago I cant help much with your questions. I know you will get a lot of help as the people on this forum are very caring. One thing I can do is identify with the pain you are in especially typing. Try putting a pillow between your legs at night ,that may help you sleep a little better. Also there are different thoughts on this but I have always found that heat has helped me.

I like your attitude and just want to wish you all the best.

Macky

Robbie
09-15-2006, 04:44 PM
Thanks for the reply.

My dad sometimes uses heat pads for when his back aches. He doesn't have scoliosis. I might give them a try.

Robbie.

Jen-jen
09-16-2006, 05:31 AM
Heya Robbie, I'm 16yrs old and my curves roughly 35 degrees and I'm having surgery in the UK cos thats where I am. My specialist told me that it isn't usually common practice to operate on curves under 50 degrees but he's doing mine because I can't stand feeling like this!! I know what you mean about it hurting when you sit for long times - it gets on my nerves sooooo much! You're definitely past bracing accordin to my surgeon so if you feel that surgery is best then you go for it; but if I were you I'd definitely read up on the operation!! I went for a chat with my specialist a month ago about what they actually do during the op, and well, lets just say it opened my eyes!! Hope everythin goes well for you, whateva u decide.

Jen x x

Robbie
09-16-2006, 06:36 AM
I've been doing a lot of reading about the surgery, and I know that it's a huge operation, but it hasn't changed my mind a single bit about wanting to have it done. I'm going to speak to my parents about it and see if they can speak to my doctor (I'm in the USA at the moment, I have dual-nationality) about it for me. Like I said in my first post, I'm due for more x-rays in December, but I want to have the surgery done regardless of whether it's really needed or not. I stand the thought of having to live my entire life like this. It'll drive me nuts!

Good luck with your surgery! I hope it goes well for you. Where in England are you having it? How come you had to wait so long to have it?

ScoliGal
09-16-2006, 04:58 PM
my doctor did my surgery at exactly 40 degrees so it really depends on the doctor.. see my signature

Jen-jen
09-17-2006, 07:55 AM
I'm in the NE of England in Scarborough but I'm having the op done in Leeds as that is where the specialists are. I've had to wait so long because basically our medical system is rubbish and we are really under-staffed. My op was due to go ahead in July this year but then there weren't enough theatre slots and anaesthetists around. They wanted me to hae it done in late August but I started college a week after that and I really didn't wanna have that messed up - college is scary enough even when you haven't just had a major operation!! So, now I'm settled into college I'm gonna have it done in the summer hols next year. Good you've read up on it and good, you're talking to you're parents. You're a lot more prepared than i was!! Loadsa people tried to put me off this op because they said it "wouldn't affect me seriously". But it has, I don't wanna live like this!!! So, I'll be havin it done next year. Another whole year of waitin... might just turn me into a perfect basketcase!! lol. Are you going to uni or anything?? Any hobbies?

x x

Robbie
09-17-2006, 09:31 AM
I'm planning to start college here in the USA next year. I had started Sixth Form in England, but I didn't really like it.

I thought I read in another post of yours that you were going private - I thought private healthcare in England was better than the NHS! If I do go ahead with the surgery, I'll be going private with BUPA, I think.

Jen-jen
09-17-2006, 11:26 AM
Really? What didn't you like at 6th form?? What sorta career are you headin for?? I'm doing biology, chemistry, maths and spanish and I think its pretty awesoem at the mo. And I'm also learning Italian and I'm trying out for the badminton team and doin my regular dancin. V busy lady!!! lol.
Yeah, I am going private and that is better than our normal NHS but it still doesn't quite cover everything. I got priority for X-rays, tests, appointments etc so the time-scale was pretty good but for some strange reason - BUPA can't help with the operation itself. MY doc and his crew oly do NHS operations so I've gotta wait my turn with the rest of them which I don't really mind because it would be unfair for me to jump the queue wouldnt it? I'd definitely go BUPA if you can because it speeds up the process A LOT! And it makes life nicer, the staff at the hospital were runnin a coupla mins late and they APOLOGISED for the 2 min delay. I couldn't believe it!!

x x

Robbie
09-17-2006, 01:36 PM
I haven't a clue what kind of career I want to follow, lol. I was studying English, ICT, Business, Leisure & Tourism, and Law at Sixth Form. I didn't like the atmosphere - it felt too much like being at school. Probably because it was the same school I had gone to for five years! I'm thinking of either studying Business at college here, or just doing a general Associate degree for two years and then transfer to another college to complete a Bachelor degree. That way I'll have completed all the basic courses and I'll be able to focus on the business courses.

That's strange that they don't do the operation on BUPA. I was under the impression that when you went private, EVERYTHING was private. That's how it's always worked with my dad's BUPA insurance. I went private with BUPA when I was having some trouble with depression and they were going to cover the costs of me going to a hospital for three weeks, though I didn't go in the end.

When I had my X-rays done, it took over a month for my doctor to get back to me. My doctor is based at a children's hospital, and the X-ray facilities there weren't suitable for taking my X-rays, so I had to go to another hospital (only about five minute away) to have the X-rays done there, and they obviously forgot about giving them to the doctor! It took a few phonecalls from us and the doctor for them to finally send them to him.

I don't see how it'd be unfair for you to jump the queue - you are technically paying for it.

Jen-jen
09-18-2006, 06:10 AM
You took 5 A-levels?! no wonder you felt like you were back in school!! I only do 4 so I have quite a lot of free time - for instance, right now it is 11am on a monday mornin and im at home talkin to you! im free from 10 til 2 so it dont really feel like school to me!!
I've got no idea what I'm gonna do either but it's probably gonna be maths/science related. If I get AAB in my A-levels I can qualify for 6000 in bursaries to pay for me to do a science-related degree at uni (!!!) so thats probably what im doin. lol.
I thought it was weird too... my parents weren't expectin the op to not be covered either! It took a month for your doc to get back to you?! That is pretty long!
Oh god, i hated my X-rays!! I was taken to the paediatric section cos all the others were busy so I had to stand in my lovely sexy hospital gown in a room decorated with cheesy flowers and smiley butterflies and things. Not that im complainin. lol. When i had my X-rays, they had to bend me sideways around a block to see how much flex my spine had. Did you have anythin like that?? Cos that was pretty weird, and if i hadnt been so flexible (cos im a dancer) it would probably have hurt too!!
I know im technically payin for it, but id still feel bad cos my curve isnt life-threatenin or anythin. im ok to wait my turn for a bit... as long as it doesnt take too long!! lol

x x

Robbie
09-18-2006, 08:26 PM
It was the hospital's fault. They didn't get the X-rays back to him until we bugged them about it. When I had them done, I just had to take off my trousers and stand there in my underpants and top. My doctor had already had me do all the bending stuff like twenty minutes earlier (I had the X-rays done on the same day I first saw him). How far can you bend over? I can only bend over half-way. No touching my toes for me! lol.

Jen-jen
09-19-2006, 12:26 PM
ah rite. i'm pretty flexible - I can touch my toes easy. There used to be a warm up exercise where you stand on a bench high up and see how far down you could reach... i could reach about 30cm past my toes!!! I do splits, walk overs, can bring my feet up to touch my head... the usual. lol. I can't believe I'm gonna be even MORE flexible afta this op. I'll be like an elastic band! A 6ft 2 elastic band!!! lmao.

x x

Robbie
09-20-2006, 04:52 AM
I thought I read somewhere that the surgery can take away some flexibility in your back, but I'm not sure on that. It was on a website about the surgery.

I'm a midget, lol. I think I'm like 5ft 6in or something close to that. I have a friend who's like 5ft 2in! She got me to hug her once and I had to practically kneel down. That was before I found out I had scoliosis - maybe that's why I give such crappy hugs. lol.

Jen-jen
09-20-2006, 01:23 PM
surgery takes away ur flexibility?! neva heard that 1! Oh wel, maybe im special so i get 2 b xtra-flexible. lol.
5ft 6 aint midget!!! im just from a long line of rather tall people! my m8s 5ft 2 as well n weneva we got out we luk like laurel n hardy cos ders such a height difference! lol. 5ft 6 people dnt give crappy hugs, besides, a hug is a hug. u can neva have 2 many hugs!! lol. Just make a joke of it n say u need a yellow pages. lol
im off out 2 college party 2nite in my heels so im gonna b 6ft 2... its a trial run 2 c what its gonna b like bein 6ft 2. :D Wer all gonna b like zombies 2moro at college - it dnt finish til 3! n i gotta b up for da bus at 8.30. How wil i survive? lol. nah, iv got stamina!!!

x x

Robbie
09-20-2006, 03:53 PM
lol, I meant I'm a midget compared to you. The website said that you lose some flexibility in your back because they're fusing the vertebrae together so that the curve doesn't get worse. You don't lose much, and it's obvious most people don't notice it, or people wouldn't have the surgery done! I've rather lose a bit of flexibility in my back (I'm never going to be going into gymnastics!) than have this stupid curve in my spine.

From Wikipedia:

Spinal fusion is the most widely performed surgery for scoliosis. In this procedure bone (either harvested from elsewhere on the body, or donor bone) is grafted to the vertebrae so that when it heals, they will form one solid bone mass and the vertebral column becomes rigid. This prevents worsening of the curve at the expense of spinal movement. This can be performed from the anterior (front) aspect of the spine by entering the thoracic or abdominal cavity, or performed from the back (posterior). A combination of both is used on more severe cases.

Patients with fused spines and permanent implants tend to have normal lives with unrestricted activities. They are able to participate in recreational athletics, have natural childbirth and are generally satisfied with their treatment. The most notable limitation of spinal fusions is that patients who have undergone surgery for scoliosis are ineligible for military service in the United States.

Jen-jen
09-21-2006, 12:21 PM
its amazin how many different ops ther r 2 treat scoliosis. iv talkd 2 americans, british n puerto ricans n not 1 has ad da same procedure as the otha. iv neva even herd of that op!!
what happens with me is that they attach small metal clips to the curved area then slide a rod down these clips and tighten it until the spine has been pulled reasonably straight. 1 op, small incision in the right-hand side and no bone extras needed. lol. is that the op that ur docs want u 2 av?? cos it sounds kinda harsh 2 me compared 2 mine.

x x

Robbie
09-21-2006, 11:05 PM
No decision has been made as to what operation I might have. I was under the impression that spinal fusion was the operation most commonly performed for scoliosis. A lot of people on here say that they've had their spine fused, which I took to mean that they've had spinal fusion done.

ScoliGal
09-22-2006, 07:26 AM
surgery does take away ur flexibility, well it depends on the level of fusion. i was fused from T4-L4 and thats alot because i cant even bend over half way. everything is so stiff at my waist. lol

Jen-jen
09-22-2006, 12:14 PM
seriously?! oh... i dont no y im different then. iv seen that lotsa people say they av ad a fusion but it never really registered. it sounds pretty harsh to me stil tho... im happy with what wil happen to me. i just wish it would happen sooner. its painful for me. do u get pain?

x x

Robbie
09-27-2006, 10:08 AM
My parents have booked me on an earlier flight back to England (in October) so that I can speak to my doctor in person.


surgery does take away ur flexibility, well it depends on the level of fusion. i was fused from T4-L4 and thats alot because i cant even bend over half way. everything is so stiff at my waist. lol
I can barely bend over half-way at the moment, so I really don't see what difference it'll make to me! ... Unless I won't be able to bend over at all. lol.

Jen-jen
09-27-2006, 02:08 PM
ahhh so ur comin bk ova here 4 a bit. how long u stayin?? I feel really humbled here cos my scoliosis only gives me pain n makes me luk bad n limits me v little. thats all the agro i get from it yet i stil want the surgery. how shallow am i? lol. u wont lose ur ability 2 bend ova. lol. if not, ull just av 2 b v gud at squattin. lol. hope all goes wel wid ur doc! x x

Robbie
09-27-2006, 02:26 PM
Thanks. :)

Nah, you're not shallow. It's only natural to want to have something 'negative' about your body corrected.

I don't know how long I'll be staying for - maybe permanently. I'm not sure if I like this part of the USA much. lol.

Jen-jen
09-28-2006, 12:01 PM
lol thats sum serious psychology goin on ther matey!!! wat part of da USA u in?? how cum u dnt like it?? i bet its cos dey dnt av our wonderful fish n chips!!! lol. which bit of England dya go 2?

x x

Robbie
09-28-2006, 12:45 PM
lol. Yeah, the fish and chips there are good. I'm in North Carolina at the moment. The area I'm in is really secluded, in the middle of nowhere, and just.. boring! lol. There's nothing to do. I don't drive out here so I can't get around anywhere and I'm stuck at the house all the time.

I'm going to Buckinghamshire in England. Technically my village is in Buckinghamshire, but the post code is Bedfordshire. Weird. :P I'm about half an hour away from Milton Keynes, if you've ever heard of it.

coloradogirl
09-28-2006, 06:25 PM
Hey there,
I read your entry. I highly suggest you do NOT get the surgery, because surgery does not correct scoliosis. The surgery is permanent, so that means you cannot go and undo it. My scoliosis curvatures are very severe, and surgery is not an option for me, because of a lung condition I have. The only way that I can correct my back is through yoga stretching and strengthening the muslces that way. Look into other programs: yoga or bracing, before even considering the surgery. I have some books that have disgusting pictures of what happens in the surgery and they explain what happens when the surgery is performed. I hope this helps you in some way.

gardenjen
09-28-2006, 10:01 PM
Hi Robbie!
In the end, you need to decide what's right for you and get peaceful with your decision. My daughter had a thoracoscopic surgery scheduled to correct her top curve (>45 degrees) in 2004, but she decided to cancel it right before the surgery date. She was 20 at the time and I felt that it had to be her decision, one way or the other. She's at a Schroth P.T. clinic for 2 weeks in WI, US right now, working on exercises to maintain, or at least, slow the progression of her curves. After 4 days there, and a lot of hard work - 4 hours of exercise/day (she calls it Boot Camp, lol), she is quite encouraged. There's a clinic in Suffolk, UK, called Scoliosis SOS, run by a young woman with scoliosis, that claims to offer the same treatment. You may want to check out it out at erikamaude.com.
Best wishes to you, whatever you decide!

Jen-jen
09-29-2006, 12:38 PM
Ah yeh, i no Milton Keynes! they av a big snow slope ther dnt they?? My surgeon is based in Leeds so luckily im only n hr n a half away from where I live (the coast, a strange place called Scarborough). It's a pity when you're secluded aint it? tho i bet ur prob more secluded than me! mosta my friends live a bus ride away which is handy bt i dnt no any1 in the village. weird huh?

I went to the local fair yesterday and i went on a ride that i always go on bt this time it really hurt my bk.. i couldnt go on 3 others and it seriously ticked me off!!! Big time!! how can i go from it not botherin me at all to suddenly gettin pain a lot?? n its not cos im more aware of it cos this is stil afta i found out. tho that prob doesnt help, knowin that i hav it either does it?

x x

Robbie
09-29-2006, 09:56 PM
Hey there,
I read your entry. I highly suggest you do NOT get the surgery, because surgery does not correct scoliosis. The surgery is permanent, so that means you cannot go and undo it. My scoliosis curvatures are very severe, and surgery is not an option for me, because of a lung condition I have. The only way that I can correct my back is through yoga stretching and strengthening the muslces that way. Look into other programs: yoga or bracing, before even considering the surgery. I have some books that have disgusting pictures of what happens in the surgery and they explain what happens when the surgery is performed. I hope this helps you in some way.
Hi there! I've done a lot of reading on the surgery, and seen some pretty disgusting pictures - but I haven't ever heard of any surgery that isn't disgusting. Anything with blood disgusts me! I fully understand that the surgery doesn't cure scoliosis, and that it is permanent, which is why I want to see about having it done - I don't want a temporary 'solution' to the problem. I want to do something lasting about it.


Hi Robbie!
In the end, you need to decide what's right for you and get peaceful with your decision. My daughter had a thoracoscopic surgery scheduled to correct her top curve (>45 degrees) in 2004, but she decided to cancel it right before the surgery date. She was 20 at the time and I felt that it had to be her decision, one way or the other. She's at a Schroth P.T. clinic for 2 weeks in WI, US right now, working on exercises to maintain, or at least, slow the progression of her curves. After 4 days there, and a lot of hard work - 4 hours of exercise/day (she calls it Boot Camp, lol), she is quite encouraged. There's a clinic in Suffolk, UK, called Scoliosis SOS, run by a young woman with scoliosis, that claims to offer the same treatment. You may want to check out it out at erikamaude.com.
Best wishes to you, whatever you decide!
Thank-you! :) The thing is, I don't want to maintain my curve. I want to lessen it. It really bothers me to know that there my spine is like this. I don't know why, and I know it's probably silly of me to think like this when there are many other people with worse curves who get along just fine. It's just that I have to live with this body for the rest of my life, and I want to try and get it corrected to some extent. I'm definitely not looking to fully correct it, as I know that's impossible, but I want to do something.

----

My parents have gotten me an appointment with my doctor for October 16th - four days after I land in England. lol. Things move too quickly!

I've heard of Scarborough. I don't think I've ever been there though. This place is VERY secluded - there aren't any buses! Buses only exist in the towns around here, and I'm about five miles outside of one of the smallest! Even my village in England had buses. Weird North Carolina. Maybe if I move back, I'll go to New York or somewhere better. :)

Sorry to hear you're in more pain. :\ I used to get really bad aches lying in bed - right from my right shoulder-blade to the front. It really bugged me, but I didn't know what caused it. I don't get it often now - I get an irritating ache all down my back now. It makes me feel sick sometimes.

macky
09-30-2006, 04:43 AM
Hi Robbie. Look an operation does correct scoliosis for crying out loud. What you put in one of your posts about posterior and anterior surgery is exactly what is done now ,as well as the fusion.

I agree that it is your decision and of course you have to take everything into consideration but in the long run and I had mine done 40 years ago it really is the best decision in MY OPINION anyway.

Read one of the posts by x-becki-x under the name of "Hello everyone" she had her operation not long ago and was back at school in11 days and is fine.
Of course every operation is not good to read about and to see exactly what happens to you, but at least you had the sense to do all that, and to realise that, that is what happens. You really appear to have your head on straight and dont let anyone including me let you change your mind or make you think otherwise.

Macky

Jen-jen
09-30-2006, 05:13 AM
no buses! yikes!! how on earth do u cope? lol just kiddin. I wud luv 2 visit New York!! it sounds soo... buzzin.
You're definitely gettin things moving quickly, only here 4 days and you'll already have an appointment! my next one is in December!
Yeh, i get pain wen i lie down too, i usually av 2 roll over evry coupla mins which can get very annoyin! on a day to day scale, the pain is just like a dull ache all the way down my right-hand side of my back. carryin all my science n maths folders round college leaves me feelin in slightly more pain and if i do a good ol bit of exercise then its usually time to crack open the paracteamols!! lol. It really gets to me tho cos i quit my dancin (which up until now was kinda like my second life) and i really wanna go bk but i cant. Grrr! i think im gonna investigate chiropractors - thers 1 on the road wher i walk in2 town so i mite pop in next time im free and see what they can fix me up for. Some poeple on here say they help, others say they dnt so i guess ill just av 2 find out myself n do sum snoopin.
I luv the way evry1 posts here - evry1 has a different story to tell and different bits of advice to give... it makes me feel not so alone. Like a little community. Now i feel warm and fuzzy all ova. lol. nah, scrap dat last bit of mush but i do stil find it easier to cope wen i know iv got this site and evry1 here to help each otha out.

x x

Robbie
09-30-2006, 01:13 PM
Thanks, macky. I really appreciate everyone's opinion. I don't really see how you can say surgery doesn't correct scoliosis, coloradogirl. Why would they do it otherwise?

My aunt here goes to see a chiropractor every two weeks, and he seems to help her. One of my aunt's friends doesn't seem to think much of him, though. She hurt her leg badly at work (she works at an old people's nursing home, and had to help lift them in and out of bed) and when she went to see him, he was all, "Stop being a wuss and deal with it!" Turned out she needed an operation or she could have had to have her leg amputated!

I remember carrying around a huge, heavy backpack in school before I found out I had scoliosis. I couldn't understand why my back hurt, and people always used to comment that I leaned over to the side because I only carried it on one shoulder. Does anyone else lean over to the side when they carry something in just one hand, or on just one arm?

Jen-jen
09-30-2006, 03:12 PM
omg how can he say that to ur aunt's friend?! thats just plain wrong! i av a GP like that - I had the tb jab but i had an allergic reaction to it n she just told me to stop bein a wuss!!! i think i def wil check out the chiropractor tho.

i dont no bout any1 else but i lean over to 1 side wen i carry sumthin... my bk curves to the rite so if i carry summat on my left arm i sumhow end up leanin ova even further?

x x

macky
10-01-2006, 02:04 AM
Your post Robbie of leaning over carrying something with one arm bought back a really old memory.
My dear Grand father ,god rest his sole ,used to say that because i carried a really heavy school bag ,that could have been the cause of my crooked spine.
I have learnt since being on this forum that apparently a lot of people thought that.
Jen Jen I love reading your posts honey, but find it really hard with your shorthand way of writing them as they take me ages to read them, and try and work out what you are saying. Am I just getting old?

Macky

Jen-jen
10-02-2006, 06:19 AM
Lol. Sorry Macky, I'll write things out in long-hand from now on. Nah, you're not getting old, teenagers are just getting lazier. Or illiterate! Honestly, youth of today eh? I carry my heavy school bag on one arm too. Is it proved that carrying a heavy school bag can add to your scoliosis or is it just a myth?? I know that it sure hurts more when I carry it but I don't know if that's just me looking for an excuse as to why I have this scoliosis or not. Do you know if a chiropractor helps or not?? I really want a solution for the pain instead of popping a paracetamol every time it hurts... I have a year to wait until my operation you see so I really could do with an alternative short-term solution until then. Any ideas?

x x

Robbie
10-03-2006, 05:50 PM
When I was at school, people would always have a go at us for carrying our bags on just one shoulder saying that it would affect our backs. I'm not sure how true that is, though, since my friend carried a very, very heavy bag and his back is perfectly fine.

I kind of wish I could take pills for the pain sometimes - except I can't. I absolutely cannot swallow pills for some reason. When I was in England, I usually resorted to something like Calpol, lol. I'm a little bit old for it, but hey, it works.

Have you considered not using a bag, and just carrying your books around? Do they provide lockers at your college? That might help out with the pain if the bag really hurts to carry around.

Jen-jen
10-05-2006, 01:07 PM
Hey! You're never too old for Calpol! lol. I used to have a problem with pills too. Thing is though, I don't know how long I can carry on taking them... i'll end up a hypochondriac!!
Unfortunately we don't have lockers at school and I have too many heavy books to carry around to consider that. (I do maths, biology and chemistry remember; the three hardest courses on offer!) Besides, I already tried it and by the end of the day I ended up shoving my books onto whoever would be kind (or gullible) enough to take them for me. If you lean over, can you feel it stretching or is that just me??
And I'm getting seriously ticked off because if it suddenly starts hurting when I'm out in town or something, I usually stretch or bend over to try and ease the pain out and people then look at me like I've got 2 heads. It's not like I suddenly jumped up and did the macarena and sang YMCA at the top of my voice so why stare?
I'm glad that it's becoming winter too because now I have to put more layers on so you can't see my curve as bad either. It was kinda awkward in summer when I wanted to be cool but short tops made my curve really accentuated and it got to me at times.Why do lasses have to be so vain?? It would make life a lot easier if I just went round in baggy tops every day! lol. Oh well, only 9 months to wait. Oh God. lol.

x x

x x

macky
10-08-2006, 03:53 AM
Hi guys. Thanks Jen jen for the attitude youve got, I honestly thought you may be a little crabby with me for asking you to write long hand, what a sweety you are.
Nah, carrying school bags has absolutely nothing at all to do with scoliosis except probably your back aching a bit from carrying them. Everyone has a
totally different opinion on chiroprators but this little chicky reckons that in the long term it doesnt help a lot.

I love reading both your texts Robbie and Jen so keep it up, xx

Macky

Jen-jen
10-08-2006, 01:17 PM
No problem! I find it funny that you thought I might be crabby - I actually felt a little guilty because I've got so used to writing in text form! lol. I appreciate your thoughts about chiropractors... I would go and see if they can do anything to help but the ironic thing is that its a long walk to the chiropractors which hurts my back even more. Typical! lol.

P.S i couldn't be crabby if I tried (I'm too lazy to hold a grudge!)

x x

Robbie
10-09-2006, 12:07 PM
Isn't there a bus? ;) lol.

You're studying my absolute worst courses. I was terrible at all three in school. I was much better at English and Business.

I'm not sure what you mean by feeling it stretching. Do you mean your spine? People where you live must have really boring lives if they find someone bending over strange..

Jen-jen
10-09-2006, 12:23 PM
Lol. Funnily enough, there aren't actually any buses!

I nearly screamed at one of my teachers today - in biology, we have really hard, unforgiving chairs. So, what with me being this shape and all, I kept on moving and fidgeting (because it was seriously starting to hurt again) and the teacher noticed. I told her my back was sore and that I was trying to get comfy... and she told me to stop making excuses and concentrate more!!! I was furious! And then, to top it all off, she told me that AS levels aren't easy and that I'm gonna have to work hard to get good grades because the answers aren't going to "pop out of the page" at me. Well, duh! I got 9A*s and 2A's and I don't think you can get grades like that from the answers "popping out of the page" at you. I was gonna stay behind and tell her that I wasn't making it up because I do actually have a clinically diagnosed problem but I never got the chance. Typical... again.

I don't know how to define what I feel when I say it stretches, the best way I can describe it is to say that when I bnd over, I can feel my skin stretching over the curve and I also find that sometimes, as weird as it sounds, my hip is in the way. My curve bends to the right so when I bend over to my right, my ribcage seems to meet my hip which is kinda freaky (and painful!). Maybe the stretching though, is just unique to me? Do you get pain?? Does it feel anything like what I'm on about?
Yeah, people do lead incredibly boring lives round here. We have become a town of chavs and wannabe chavs. lol. I'm at a loose end here because this pain is getting to me and I don't want to have to take pills all the time or keep on stretching and getting weird looks but I don't know what else I can do. I don't mind people staring or having to take pills but they aren't a long term solution. Grrrr! Right, the rant and rave is now over. lol. Hows you??

x x

Robbie
10-11-2006, 02:40 AM
Teachers are irritating at times.. okay, a LOT of the time. If she continues to ignores you, take a doctor's note in or something?

I'm not sure if I've ever felt anything like that. I'll see when I next stretch.. lol. I often find that my right hip sometimes feels to be in the way. It really irritates me.

My flight to England is today. It's an overnight flight. I love overnight flights. :D

Jen-jen
10-11-2006, 11:52 AM
Doctors note? I hadn't thought of that! Oh my God how stupid can i get? I really am a blonde! lol. I really should do that because I don't think they have it down on their records. I'll see if that can give me some preference for a locker maybe?
Yeah, the whole hip thing, that is what I'm on about. Ah, I feel relieved it isn't just me!
You picked a great day to fly to England - guess what? It's raining! Typical! Welcome back Robbie! lol.

x x

Christina_in_NC
10-11-2006, 02:46 PM
Hi, I've benefitted so much the past few weeks reading the messages on this forum. My daughter (13, about 1 year before first menses expected - lots of growing left) was diagnosed about 4 weeks ago - upper curve?, lower curve 29. The surgeon says just watch and wait. We are looking into other options, she has started PT and we are looking into Spinecor. Her attitude about it is great, and she really enjoys the SpineKids site.
Weighing possibilities between Montreal, Erie Shriners, and Dr. D, or Dr. Oellette in Georgia. Montreal said we could be fitted there and do follow ups elsewhere - anyone tried that?
Thanks,
Christina

christine2
10-11-2006, 08:32 PM
Hi Christina in NC

We have not tried that , we go just to Montreal. It is a 7 hour trip for us one way. My daughter is only 6 yrs so I would assume that that trip will get old and we may do the same after a couple years. I did look at 2 different Docs after making our choice to go with spinecor and must say that we saved approx. $2500.00 going to Montreal vs another which was closer. There have also been issues reported in the proper placement of the brace. Dr Colliard in Montreal is the inventor. She and Dr. Rivard are awesome!! They are truely doing it for the kids.

As for the brace itself it is so easy to wear. I have not heard 1 complaint. They say a brace is only good if the kid is compliant. My daughter does everything in it including gymnastics. You can hardly notice she is wearing it.

One last thing. I have read some very sad things about waiting and watching. it seems that alot of them are tragic. Scoliosis is so unpredictable. curves can increase dramatically over a short period of time. If you could just hold it at 29 or even get a small correction your kid would be all set.

Good luck

Christine

Christina_in_NC
10-11-2006, 09:30 PM
Thanks Christine!
I am trying to lay out all the costs now to compare with travel, etc. I know it can't totally come out to the dollars to make a decision, but I have information overload and feel like I am at the end of my rope for knowing who to turn to next to help make this decision.
Thanks!
Christina

Jen-jen
10-12-2006, 02:00 PM
Hi Christina in NC, you talk of PT and SpineCor. What are they? I've never heard of that before - is it something special to a certain country because my doctors in England have never said anything about them!

x x

Robbie
10-12-2006, 02:52 PM
Doctors note? I hadn't thought of that! Oh my God how stupid can i get? I really am a blonde! lol. I really should do that because I don't think they have it down on their records. I'll see if that can give me some preference for a locker maybe?
Yeah, the whole hip thing, that is what I'm on about. Ah, I feel relieved it isn't just me!
You picked a great day to fly to England - guess what? It's raining! Typical! Welcome back Robbie! lol.

x x

Well, I landed in England safely. Just before I was about to get on my first plane to New York, my brother sent me a text message saying, "A plane has hit a building in NY." You can imagine what was going through my head after hearing that! lol. I didn't know that it was a small private jet. I was half-tempted to not even get on the plane.

My actual flight to England was delayed for five hours and it was tipping it down in New York. We ended up sitting on the plane for three hours before we could take off. When we got to England, it was sunny and warm. Weird for October. The weather always seems to go strange when I travel - it was all stormy in NC when I went there, and now it's warm and pleasant in England. What is the world coming to? lol.

Now I've got three days of lazing around doing nothing before going to see the doctor on Monday. It feels so strange to be in England again.

I hope the school can give you something to make it easier on you. They really should do something to accommodate you. My old school installed a lift for a couple of disabled students. We already had one in the older building, but it was one of those hand operated ones.. lol. A bit old-fashioned, huh?

Christina_in_NC
10-13-2006, 07:25 AM
Hi Jen-Jen,
Pt is just physical therapy. We go for pain management (although her pain is not much more than an ache at bedtime) and to increase flexibility in her back as that should help bracing or surgery work better. It may also help hold the curve, but of course no guarantees there.
SpineCor is a flexible brace which you will see a long thread on in this message board. It has not had rigorous clinical trials and many doctors are not using it because of that. But for those who fall in the "ideal" candidate profile it may help.
Christina in NC

Jen-jen
10-13-2006, 12:15 PM
Your brother told you that?! Oh my god, that is so mean! I would have freaked out too! And a 5 hour delay sounds such fun - I bet you used your time wisely and didnt just fall asleep in the airport. lol.
It was warm and sunny? Where the hell was that? I think I missed it. :(
What are you gonna do for 3 days? Go exploring and hiking in our beautiful countryside, check out the heritage? ...... or just grab a loada fish and chips and chill? lol. I would go with the second option!
The college probably can do something but I just don't know who to go and see at the mo. I could ask if I can have a locker but that would mean kicking somebody else out of it and that would be mean. They have lifts everywhere but thankfully things aren't that bad yet. I am finding that doing stretches in the morning for my back helps slightly so I am less grumpy in the mornings now. ( Well, not that I'm ever grumpy. ;) As you know I am a ray of sunshine! lol)
Hope everything goes OK on Monday but I'll probably talk to you again before.


P.S To Cristina, thanks for filling me in on that, I'll check the threads out now.

x x

gerbo
10-13-2006, 12:34 PM
go to http://www.spinecorporation.com/English/index.htm for more info, althoughit is a canadian invention, it is actually now being manufactured in the UK. Sheffield children's hospital uses it for all their idiopatic scoliosis in young people

Jen-jen
10-14-2006, 07:58 AM
Thanks Gerbo, I've never seen a bracing system like that before and it was definitely informative. Unfortunately though, I saw that the SpineCor is usually used in the early stages of diagnosis. I was diagnosed about 18months ago now so i think it probably isn't for me. Besides, it is apparently mainly for people younger than 16 and the only girl I saw that came close was a 14year old who had to spend 6 years in it. I'm not sure I could cope with it for 6 years but once again thanks for opening my eyes to what is out there.

x x

Robbie
10-14-2006, 09:50 AM
Your brother told you that?! Oh my god, that is so mean! I would have freaked out too! And a 5 hour delay sounds such fun - I bet you used your time wisely and didnt just fall asleep in the airport. lol.
It was warm and sunny? Where the hell was that? I think I missed it. :(
What are you gonna do for 3 days? Go exploring and hiking in our beautiful countryside, check out the heritage? ...... or just grab a loada fish and chips and chill? lol. I would go with the second option!
The college probably can do something but I just don't know who to go and see at the mo. I could ask if I can have a locker but that would mean kicking somebody else out of it and that would be mean. They have lifts everywhere but thankfully things aren't that bad yet. I am finding that doing stretches in the morning for my back helps slightly so I am less grumpy in the mornings now. ( Well, not that I'm ever grumpy. ;) As you know I am a ray of sunshine! lol)
Hope everything goes OK on Monday but I'll probably talk to you again before.


P.S To Cristina, thanks for filling me in on that, I'll check the threads out now.

x x
It was warm and sunny in London at Heathrow airport. Not bad where I live, either, but it's only an hour and a half away from Heathrow. I spent three hours of the delay on the plane waiting to take off, and the other two talking to my friends on the phone. Thank goodness for cellphones. lol.

I'm just going to laze around. :D I've seen all the countryside around here in the past and it's nothing special. lol.

You care too much about other people, lol. So what if you're taking a locker away from somebody else? You're the one with the back condition. If they've got a perfectly healthy back, you're the one who needs the locker. I know that sounds mean, but if you're really in pain, you should have all the support you can get.

Jen-jen
10-14-2006, 03:38 PM
I know, I wouldn't survive without my phone either! lol.
Nothing special?! How dare you! Our muddy fields full of cows and sheep are absolutely fabulous! lol.
I'm not too nice - they got the lockers first, end of story. I am in pain but not a lot. It's just constant... that's all. lol. It's coming upto the end of the first term though so work is gonna get easier so hopefully I won't have as many books to carry.

x x

Robbie
10-15-2006, 11:53 AM
Well, that's good. Would the teachers let you keep your books in the classroom when you don't need them? They let us at sixth form. We had to carry around huge folders for Business Studies and they got a right pain to carry with all of the other books.

Mm, yes.. wonderful muddy fields. lol. I'll give England one thing though - its countryside is more interesting than the American countryside. England is more hilly - America is just flat. Where I was born in New Mexico is just desert. How exciting. lol.

I was looking at old pictures of myself today (I was very tempted to burn the lot) and I noticed that I do lean over to the side in them. I still can't understand why nobody noticed it before. I knew myself that there was something up, but I think I said in a post earlier that I just put it down to using the computer too much and not getting enough exercise. Ah well. At least we know now. I'm so nervous about my appointment tomorrow. I'm too shy.

It's probably a good thing that you're getting your back sorted out before you start driving. When I was taking driving lessons (before I found out about my scoliosis. I still haven't got my licence yet.. I'm a slacker. lol.) my back started to hurt a lot near to the end of the lesson, especially when we were practicing reversing where I had to constantly turn around in my seat and stuff.

I say "lol" too much. I don't laugh that often in real life. I'm a moody git. :D

Jen-jen
10-15-2006, 03:15 PM
Nah I cant leave my books in the room - there is no room and I already asked. Besides, they would probably get lost or chucked out the nearest window!
You were born in New Mexico? Oh wow! What was it like? Compared to here it sounds so... exotic!
Don't burn all the pictures of you! Actually, I can't really talk cos I wanna do the same with mine. I hate having pictures taken - I stand out compared to everyone else as I am so tall. lol.
Don't be worried about your appointment, things will be fine. I promise.

x x

Robbie
10-18-2006, 09:06 AM
My appointment went well on Monday. We talked for a while about having the operation done, and I probably am going to have it. He sent me over to another hospital, which was about a ten minute walk away, to have a second set of x-rays taken so he could compare them with the old set. The hospital he's based at is a children's hospital, so the facilities there aren't suitable for taking my x-rays. He said he's going to get back to us within the next week. Hopefully the dumb hospital I had the x-rays done at won't take a month to get them to him this time.

Jen-jen
10-18-2006, 11:16 AM
Heya, glad it went well. I was sent to different buildings within the hospital which took 5 mins but I've never been sent to a completely different hospital before! The X-ray room was busy when I was there so they put me in the children's one. I wasn't complaining - it had flowers all over the room! But I did have to use the other room for some of the X-rays like the one where they stretched me around a wedge. Did you have that one?
I am still as certain as ever about having this operation; true, I doubt I'll like it afterwards and I'll probably be stressin for a month (or 4) beforehand but I know that it will be better having a straight back and even hips and shoulders.

x x

Robbie
10-18-2006, 12:52 PM
Stretched you round a wedge? Doesn't sound like much fun. lol. I just had two - one of me standing to the side, and one of my back. The guy who did them was a trainiee I think, but there was someone else supervising him - she was the same lady who did my previous ones, and she remembered me. Last time I just had to take off my trousers for the x-rays, but this time they made me put on an oh-so-sexy hospital gown. lol.

I'm pretty certain I want to have the operation. I really do want my back to be straighter than it is now. My doctor said that the first couple of days I'll be pretty much out of it, and the third I'll be all "Why did I do this?!". He said it gets better after that, though. I'm not too worried about it - it'll all be worth it in the end. From what he was saying, he's looking for me to have it done before Christmas! Seems really soon, but I don't know if that's set in stone or anything. My mum has to have an operation on her bladder at the end of October, and my gran just had a hip replacement in August. lol. We're all going into hospital.

Jen-jen
10-19-2006, 12:13 PM
lol. Being bent around a wedge DEFINITELY wasn't funny! they slid a wedge slightly under the area of my curve then one doctor grabbed hold of my arms and another got my feet.... then they literally pulled me around this wedge so that my arms and feet nearly touched!! If it wasn't so uncomfortable it would've been hysterical! Apparently, it was to see how much flexibility my spine had. This was also in the oh-so-sexy hospital gown. lol.
Before Christmas! Woah, they are efficient at your place aren't they?! My doctor said the same thing about being completely out of it. But I dont mind, that is a good thing as far as I'm concerned! lol. I know that I'll probably end up wishing I hadn't had it done after - it will be a pretty big lifestyle change to go from a totally-active-never-sit-down-always-climbing-something person to a lets-sit-here-for-five-thousand-hours-and-check-out-every-single-channel-on-the-telly person. (Good description isn't it? lol).
My family is all of into hospital too - my Mum wants her feet fixed as she has bent bones or something, Dad might be having something done on his knee and I'm having my back done. We're gonna make a happy (and very able lol) bunch arent we?

x x

Robbie
12-07-2006, 12:53 PM
Wow, I haven't posted here in a long time. I've seen my doctor since my last post. He looked at the new x-rays and the curve hasn't changed any, but both he and I want to go ahead with the surgery. He said there is a chance the curve could increase, and since I'm getting pain (quite bad recently), he thinks it's best to just go ahead with it. His secretary called today and said that I would probably be having it done January 5th. I'm not really all that nervous about it - I do want it done. I think it's the best thing for me.

A few weeks ago, my Gran was visiting her physical therapist (she broke her hip a couple of months ago) and mentioned to her that the top of her back has been aching. Apparently, she has scoliosis! Her physical therapist said that it's probably become more noticeable now since her hip operation, or something like that. My Gran said, "You can blame it all on me! It's my fault!" Jokingly, of course, lol.

The Slice
12-07-2006, 03:54 PM
It's more likely that your grandmother is suffering from kyphosis rather than scoliosis, the difference is in the direction of the curve. Kyphosis is a front to back curve and is common in people as they age (more so in some than in others). Glad that you are going for the surgery. Hang tough and be patient. I hope all goes well for you (it will).

LindaRacine
12-07-2006, 04:48 PM
A few weeks ago, my Gran was visiting her physical therapist (she broke her hip a couple of months ago) and mentioned to her that the top of her back has been aching. Apparently, she has scoliosis! Her physical therapist said that it's probably become more noticeable now since her hip operation, or something like that. My Gran said, "You can blame it all on me! It's my fault!" Jokingly, of course, lol.
Actually, Gran has a better chance at her age, of having scoliosis, than of not having it. In a study from last year, it was found that 68% of a control group of 65-74 year olds had scoliosis:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15864163&query_hl=1&itool=pubmed_docsum

In addition, it's possible that she has what is termed as "functional" scoliosis, which can be the result of an injury that causes someone to change their posture to avoid pain.

--Linda

Jadey
12-08-2006, 06:24 PM
My curves are almost 40 degrees (37 to be exact) and surgery will not be an option unless the curve was larger and the curves increased rather quickly.

Robbie
12-09-2006, 02:38 PM
I know that they don't usually carry out surgery for curves under forty-five to fifty degrees, but I've talked it over with my doctor and we both want to go ahead with it. I don't like the idea of just leaving it like this. I only found out about it this year, so I don't know how much it's progressed over the last few years.

Just out of interest, whereabouts in England do you go to see your doctor? Mine is in Oxford. I'll be having the surgery at the Oxford Clinic for Specialist Surgery, located on the Nuffield Orthopaedic Centre grounds.

Jadey
12-10-2006, 05:07 PM
Yeah I hear people who have surgery have curves over 40 degrees. And I understand why you want to get it sorted.

I go to Ashford in Kent, the William Harvey Hospital.

Jen-jen
12-11-2006, 03:31 PM
My curve is between 35 - 40 degrees yet they mentioned surgery at the very first appointment when I was diagnosed with it! from everyone's comments I take it that this is unusual. But I'm definitely off ahead with it - it's affecting my breathing slightly now.

x x

Jadey
12-11-2006, 05:51 PM
But I'm definitely off ahead with it - it's affecting my breathing slightly now.

x x
That's strange, my curves are 37 degrees and my breathing is fine (when I am not having a panic attack :( )

Jen-jen
12-13-2006, 12:06 PM
I know, i thought it was strange that my curves were so small but my breathing seemed to be affected. my doc doesn't explain things - he prefers to just say: it wil be fixed. Which is stupid really cos scoliosis can never really be truly fixed! My expanation is this:
When i was younger i ad a massive growth spurt n used to get really bad pains in my ribcage and i think that wen my spine started curving it also twisted my ribcage round so that the spine would fit. Cos if you look at me from the left my ribcage slants forward but from the right its emphasised at the back. my explanation is probably way out but thats wat i tell myself. lol.

x x