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Kayla
19th December 2004, 02:11 AM
I was in line yesterday at a store with my friend. I had pigtails in my hair which is rare because it shows my scar so much but I wanted to be festive. So anyways the lady behind me goes excuse me I dont wanna be nosey (so dont!) but I noticed your scar and was wondering if you had scoliosis? I say yes (but really the scar she saw is from all my other surgeries but i didnt say that) and she was all OH wow you are so straight now! I have scoliosis and it hurts so much. My hips are uneven and I go yeah mine used to be too and she goes I hear that surgery with the..do you have titanium rods? I say yes and she gives me this look like OOOOH and she says I hear thats really painful are you in pan? I go no not really it only took me a couple months to get used to it and said it would probably be moe painful for her because she is older and blady blady she told me all about how much pain she gets in...then it was my turn in line to pay so ha I didnt mind answering questions it was just weird

Marti
19th December 2004, 04:57 AM
That's really weird! I would never go up to someone and ask if they have scoliosis. I wouldn't be offended or anything if someone asked me, but it's just a sorta weird thing to aks.

Amazed Jean
19th December 2004, 05:18 AM
In a heartbeat I would love someone to ask about my scoliosis instead of just stareing like I am a side show. Could be she needed a hug. Could be she hasn't found SSO or someone to talk to. It took me years to find out about the computer and the internet, and then finally SSO. Us old people need people maybe more than all you younger people. I glad she talked to you and I understand it wasn't the easiest conversation you ever had but it was probably even more difficult for her. You probably made her day - Thanks.

lindzi_11
19th December 2004, 05:48 AM
You probably inspired her lol with getting in done so young. But yah i know at the same time its weird.

Kayla
19th December 2004, 07:04 AM
OMG I never thought about telling her about SSO! *hits myself on the head!* jeeze she could have totally used this site for support! I wasnt offended by her asking me just wow

tonibunny
19th December 2004, 10:14 PM
I saw a guy with really obvious scoliosis at a party I went to back in the summer. It's quite unusual to see anyone younger than about 30 with obvious scoliosis in this country, so I took a drink over to him and got chatting. I got chatting to his friend earlier, and asked if he thought the guy would be embarrassed or upset if I asked him, and explained that I have scoliosis so it's interesting to meet other people with it. He said that the guy was really open about his condition and would appreciate me talking to him, so I did! I just went up to him and said, "Hi, I hope you dont mind me asking about this, but I noticed you have scoliosis, and well, so do I....and it's unusual to ever see anyone else with it, so I thought I'd come and introduce myself" :-) He was really happy to talk to me, and was perfectly comfy with himself and his scoliosis. I gave him the SSO address and I think he signed up, but I guess he hasnt posted cos he doesnt really need support or info, which is fair enough! :D

Joy
19th December 2004, 10:52 PM
There's a girl in one of my classes who had surgery... but she doesn't lie to tlak about her back so I haven't got her here yet. I don't talk to her much, really...

Abbi
19th December 2004, 11:09 PM
thats so werid but cool!
One time when i was working (in the chip shop) this customer was like "have u got a sore back" and i was like yea.....? how...did u no that? and he was like "well u were walking kinna bent...." (i do....a little...its bad but hey) and so i told him that i had scoliosis and what it was, and he was like aw right! he then told me his son was a Dr in the hospital i will be having my surgery in (i didnt know i would b having surgery at that time)
but wow kayla thats class.....!!!
u said u can see ur scar....is it really visable cos well....hmm i dont like scars...! is it right up to ur neck?
how long ago was ur surgery, and do u have any pics of your scar cos i'd like to see it....infact i will look on the gallery!

Kayla
20th December 2004, 04:39 AM
Well Abbi the scra she noticed really had nothing to do ti the spinal fusion it was moslty from the brain surgeries but I wanted the lady to think she was getting somewhere

Abbi
20th December 2004, 03:08 PM
Aw right....was she a young person...and do u no if she will be having surgery! Its great that you got to talk to her!
I kinna look out for scoli in ppl now...its so weird

Saw ur pics btw! Your scoli scar dnt look that bad...healed nicely! How long has it been since ur surgery?

Kayla
20th December 2004, 05:16 PM
It has been 1 and a half years and this lady was not young maybe late 40s

butterflylr
20th December 2004, 09:53 PM
I've only met like 2 other people ever in my life that had scoliosis (besides my mom). And one of them was a friend of one of my friends. I talked to her a little about it. She wore a brace when she was younger and said it stabilized her at some small curve. I don't really remember.

The other was was this boy I went to college with. He never really went into how large his curve was. It was kind of funny cause one of the first days of class we had those "getting to know you" games and I had to say one thing about myself that most people don't know and I said "I have scoliosis" and he told me "YOU DO?! SO DO I!" It was crazy. Especially cause in my college my graduating class was only about 30 students.

Abbi
20th December 2004, 11:19 PM
Thats so cool....but weird cos your class is small...and it only occurs in 1%of the population.....which is a lot....6million i make it (if my math is correct)

6Billion in the world so 1% = 6million, im i right? hmm....

Marti
21st December 2004, 01:49 AM
I think it would actually be 60 million. because 6 billion is 6,000,000,000 and to take 1% of that you just knock off two zeros which would be 60,000,000. or you can just think that there are 1000 millions in a billion... or I can just stop attempting to explain.

titch
21st December 2004, 09:30 AM
I was talking yesterday to a colleague who is leaving this week, and he mentioned the high incidence of RSI in the building, and said "You have it too, don't you?" So I said I didn't really think I was representative of anything to do with the building because there's a lot more to it with me, and told him a little about it. When he saw some xrays of curves, he said he thinks he has a slight curve, as his spine definitely isn't quite straight, but he'd never realised it was a diagnosable thing. I'm pretty sure that a colleague in my department has it too - there's a definite kink in the middle of his back, and he often has days off for back pain and has apparently had problems with his back for years.

I often wonder if the actual incidence is higher than the statistics suggest.

Tweety Pie
21st December 2004, 03:11 PM
I can relate to that woman Kayla!Perhaps it is because I am older and until very recently have not had much contact with others who have scoliosis .

Without support like this forum you are very alone and don't have the benefit
of other people's experience. Yes ,a little while ago it could have been me asking that question!

I'm not so sure that I would do it now because I know now that there are
people out there who might see it as an intrusion.

I was at a pilates class with a new teacher not so long ago and she wandered around the studio checking people's positions.I was so absorbed in what I was doing that when she spoke(and it was ever so gently) and said "You have scoiliosis don't you?" I didn't know what to think.I suppose I was surprised and some little part of me believed that in that class I was like everyone else.

Sometime ago I saw a woman in a market abroad.She looked like she had scoliosis and all I wanted to do was follow her and talk to her.Then I realised what a stupid thing it would have been to do. But I had this need to do so .I think it came from years of feeling so alone and here was someone with a
similar condition.

Isn't it funny ,part of you might want to share all and bare your soul whilst another part remains private and wants to remain unnoticed?

I'm really actually quite normal!!!!

sins
21st December 2004, 03:42 PM
Actually it was really funny.On my first meeting with Chele, we had lunch in a restaurant in Cork.A lady kept staring at us, which started to bug me a little and when I looked around I realised she was a bit"short in the trunk" and obviously had scoliosis herself.I would have loved to have spoken to her, but decided not to and settled for a conspiratorial smile instead. :-) She must have been amazed to see not one but two people with scoliosis seated across from her.I think maybe I'll get some cards printed and if someone looks like they might speak to me just pass them the card.

Joy
21st December 2004, 04:00 PM
What's RSI?

I read that up to 10 % of the population have small curves. It's just that 1% of the population have curves requiring treatment.

Blair
21st December 2004, 04:56 PM
I've been in that position too...

I was returning my soda bottles one day, shortly after I was diagnosed with scoliosis 2 yrs ago... This was before I'd found S-Life or SSO...
An older woman with pretty obvious scoliosis was at the bottle return machine one over... My gosh I was just itching to talk to her about it... But I decided it would be rude, so kept my mouth shut.

sins
21st December 2004, 05:12 PM
RSI is repetitive strain injury.it usually affects the hand and wrist, especially common in people who spend a lot of time typing.
I agree Blair, it may upset the person in question if you mention scoliosis to them.very many people refuse to confront the fact that they have spinal curvature and would be mortified it it were mentioned to them.

Ryansmum
21st December 2004, 06:46 PM
well I just had a lovely visit today with a lady who is the grandaughter of one of my late nan's neighbours! Stacy had a severe curve around waist height unnoticed til it was at 85 degrees which became worse by the time she was operated on by.......yes MR TAYLOR!!! She brought all her xrays over to show me and before and after pics and stuff and showed me and Ryan her scars which we could hardly see! She had her op 7 years ago in stanmore and spoke so highly of everyone there :D I was very impressed with 'his' handiwork LOL...and she totally amazed me by bending round all over the place. :niceone:

sins
21st December 2004, 08:18 PM
Jenny will be delighted to hear that too Dee.When is your appointment Jenny with Mr taylor?

Tweety Pie
21st December 2004, 11:54 PM
Hi Dee,
As Sinns guessed I was delighted to hear your news about Mr Taylor . How old was Stacy when she had her op?

Hi Sinns,
Seeing Mr Taylor on 20th January
Best wishes Jenny

Ryansmum
22nd December 2004, 03:51 PM
Hi Jenny! She was 15 when the ops were done..she had the ribs sorted first then the spine 7 days later,I'm no good with the technical names for the procedures :oops: I was surprised they did them seperately although the hospital stay meant it was just the once I thought the op would have been done all in one go,is this normal? Tell you what though Mr Taylors 'sewing' is so neat LOL puts mine to shame ;-)

Tweety Pie
22nd December 2004, 06:38 PM
Hi Dee,
Thanks for the info.I've met someone through SAUK who had her surgey done by Mr Taylor and she had it done in 2 stages like Stacy.
Very pleased to hear Mr T is a neat sewer!
I'm really really pleased to have this info about Mr T :niceone:

Hope you ,Ryan and all the familly have a very Happy Christmas and all the very best for 2005.

andrea
22nd December 2004, 06:49 PM
I'm hoping Mr T won't have the opportunity to operate on Erin, but it's good to know that if that's the route we have to take she'll be in good, neat hands. He really is very nice in all other ways too - seems very compassionate and caring. I think you'll like him.

titch
22nd December 2004, 07:09 PM
I've only heard good things about Mr Taylor, and was also pleasantly surprised by just how nice his secretary was - of all the ones that I've dealt with, she was the nicest and most helpful, traits which are certainly not universal among surgeons secretaries :lol:

Tweety Pie
22nd December 2004, 11:06 PM
Andrea,
Thanks for letting me know Mr T is compassionate and caring. :niceone:
I'm glad all went well with Erin's cast change.-It certainly was a long day.

Titch,
Glad to know you've only heard good things about Mr T.
I was also pleasantly surprised by how nice his secretary was when I spoke to her.

Marti
28th December 2004, 01:42 AM
I actually experienced something like this on Christmas. We were all talking and I guess one of my cousin's cousins has scoliosis. At least I think that was the connection. And my aunt has a friend who just (about a year ago) adopted two kids from China and one's nine and my aunt said that she obviously had bad scoliosis. It's always interesting how things come up.

Becky
30th December 2004, 06:39 PM
Its quite common to have a very slight curve, as my doctor told me when I was first diognosed with scoliosis, but he told me that there is very little, even less that 1% chance that the curve progresses, and assured me I would be fine!! Then on my next visit about 6 months later, he was 'surprised' that it had actually progressed!!

Joy
30th December 2004, 08:25 PM
my doctor said that it was 'extremely unlikely' that I would need surgery. I guess she was wrong.

Jonny
30th December 2004, 08:58 PM
your GP or an orthopaedic surgeon or a scoliosis surgeon?

BlueIce
30th December 2004, 09:34 PM
when my I told my PT I was planning on having the rib hump taken away she asked : they can do that?
did surprise me a bit though, I mean I know she's not a surgeon or anything but I kinda expected her to know more about it

Joy
30th December 2004, 09:59 PM
my GP.

we don't have any doctors here who just do scoliosis- they're all orthopedic surgeons.

Jonny
31st December 2004, 01:05 AM
Joy, doesn't surprise me that much then. I was worried you meant your scoliosis surgeon!

Joy
31st December 2004, 06:01 AM
no. he just didn't say anything the first time I saw him about my needin surgery or not. he just said that my curve was 45 (I don't remember the cervical measure -that's the thoracic curve) that I didn't get a brace and that I had to get an MRI done.

jfkimberly
31st December 2004, 08:59 AM
Originally posted by amazed@Dec 19 2004, 12:18 AM
Could be she needed a hug. Could be she hasn't found SSO or someone to talk to. It took me years to find out about the computer and the internet, and then finally SSO. Us old people need people maybe more than all you younger people. I glad she talked to you and I understand it wasn't the easiest conversation you ever had but it was probably even more difficult for her. You probably made her day - Thanks.
Hmm. If I encountered more people that have scoliosis, I would send them to SSO, but Kayla's experience never happens to me. I should print up cards with our address on it, though, to give to anybody who might approach me the way that woman approached Kayla. Clearly, she would benefit from talking to some of us.

I found out about the Internet ten years ago, but it never occurred to me that there were others living with severe scoliosis to be tracked down and consulted. My mother and doctors somehow convinced me that my condition was unique. Not just rare, but unique. I wouldn't even have started looking if Courtney hadn't asked all those questions and pushed me almost a year ago... and she'd already found people's pictures online and said things like "Look here... this person looks much worse than you, and look what surgery did for them!" to convince me.

Blah blah blah... this is so long. Point is, I should print some cards. Not that I would find anybody to give them to.

BlueIce
31st December 2004, 10:08 AM
never encoutered any other scoli patients either. One time I thought I did (few years ago though) but I didn't go talk to him because I really wasn't sure. Occasionaly when I go out I show my scar (kinda hard not to when it comes up so high and you're wearing a top :-)) but people don't even notice it, I think (can't see what's going on behind me :-)). I assumed that there would be lots of staring but none of that up untill now, which is actually a good thing

butterflylr
31st December 2004, 03:38 PM
I was just reminded last night of someone else in college that I knew (kind of) that had scoliosis. They had actually had surgery too. It was kind of like a friend of a friend of a friend in college. So I never got up the guts to talk to her about it cause I thought she might find it intrusive or weird. I did observe her once I knew though, just to see how the surgery affected her movement. She seemed quite normal which was relieving.

Joy
31st December 2004, 06:08 PM
Well when I first found out a had scoliosis, my mother told me a story about a girl she knew growing up who had scoliosis and ended up having sugery and was flat on her back in a plaster cast for six months. So I freaked out and said that I was NOT staying in bed for six months. Then I started doing research to inform/reassure myself and that's how I ended up in scoliosis groups. It actually took me awhile to stumble across groups because I was looking for information and it never occcured to me to look for support groups.

Abbi
1st January 2005, 11:03 PM
Originally posted by Jonny@Dec 31 2004, 01:05 AM
Joy, doesn't surprise me that much then. I was worried you meant your scoliosis surgeon!
yeah when i saw my GP in march - she was like hm.....well it does appear that u have a few curves....hmm....well now, you may have scoliosis,so I will send you for xrays!

Jonny
1st January 2005, 11:08 PM
My orthopaedic surgeon at my local general hospital, who referred me to Stanmore, said, "I'm not going to take x-rays, I'm going to let Stanmore decide if he needs them. I don't want to expose him to radiation if he doesn't need it."

Joy
1st January 2005, 11:52 PM
I read that one x-rays carries radiation to 10 minutes of unprotected sunlight. Not sure if that's right though.

Jonny
2nd January 2005, 06:22 PM
Joy, does the sun also emit x-rays then?

I've had 20 of the things in the past two years :-?

elvinwarrior
3rd January 2005, 02:34 AM
Xrays freak me out. They had to take 4 of the things just on my one side before my surgery because they weren't coming out thanks to the shadowing of the curve.