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Siobhan
3rd September 2004, 01:39 PM
Hi,

I'm new to this site and am interested in talking to others in a similar position i.e middle-aged awaiting surgery! My curve is 63 degrees and has never given me much trouble, however, in the last year my ribs have decided to rotate further, and my Consultant says it will get worse so I've decided to go for surgery next summer. I've also had a lot of lower back pain for the last 5 years...anyone out there with similar experiences?

sins
3rd September 2004, 02:14 PM
Hi Siobhan,
:welcome: There are plenty of middle aged members here although I refer to myself as facing impending maturity!! :-D Some have not had surgery and plan to avoid it all costs and some have had revision surgery.I'm sorry your curve had started to progress but I honestly believe you're better off facing surgery now in middle age than having had it twenty odd years ago.There is so much newer instrumentation out there and a wealth of surgical expertise available to you.Also your hospital stay will be short compared to the 6-9 months many of us older people faced in the seventies and eighties.
We'll be delighted to support you through your surgery and try to answer any questions you might have.Can I also recommend that you join another group in addition to ours called Scolioadults? It's in Yahoo groups and is in the form of a mailing list from adult surgical patients.
I take it you've made up your mind to have the surgery?Are you UK based?
Sinead.

Jessica*
3rd September 2004, 02:52 PM
Hey and welcome to the site. You most probably wouldn't find me to be of as much help as other members as I am only a wee-17-years old. But welcome to the site anywho, I hope you get the advice you hope for.

lindzi_11
3rd September 2004, 03:34 PM
Welcome welcome. My name is Lindsay and i'm 15 and i'm having surgeory on November 10th. My curves are 57 and 31.

andrea
3rd September 2004, 04:35 PM
Hi Siobhan

Welcome to the site. I'm afraid I can't help you as I have a daughter with scoliosis, so my experiences are very different to your own. Just wanted to welcome you though.

Andrea

BlueIce
3rd September 2004, 04:43 PM
Hiya! I can't really help you, as I've just reached the age of 20. I did have surgery about two months ago. What part of the world are you from? I'm from Belgium.

tonibunny
3rd September 2004, 07:35 PM
Hi Siobhan, I'm 28 and was born with a 60+/40+ double idiopathic curve. Sins is right - surgery for scoliosis is brilliant now, so if you choose to go down that route, you're likely to get great results.....much better than 20 years ago. I had my first surgery in 1986, at the age of 10, and they only managed to correct my top curve (then at 75 degrees) down to about 45. I'm pleased with this, but I know they can do a lot better than that now! :-) Another of our members, Jonny, had a 60+ degree lumbar curve which has all but disappeared following his recent surgery.

Whereabouts in the world are you? We have members from all over the place here! I am in London, England.

DublinPauline
3rd September 2004, 11:25 PM
Welcome Siobhan. :welcome2: I'm really ancient (38) and had a spinal fusion 25 years ago. I live in Dublin with my husband and four year old daughter.

Just noticed from your profile.....

Location: London
Interests: Music, football (Arsenal), food and being pain free!

BarmyArmy
3rd September 2004, 11:29 PM
Hi Siobhan, welcome to the family :wave:

I'm afraid I can't offer any advice since I've never had surgery but I wanted to say hi. :D It's great to see that our site is growing and I look forward to seeing you around the site.

BTW my name is Leona, I'm 28 and I'm from Dundee.

jfkimberly
4th September 2004, 01:04 AM
Hi Siobhan,

I'm about to be 31, and I was born with severe congenital scoliosis. I was fused without instrumentation at a very early age (11 months), and have only been monitored since age 2. Now I'm seeking consultation for revision surgery (*crossing my fingers*). I don't have a time frame, yet, as my first consult with the orthopedist is in a week and a half. Maybe we can go through this together.

-kimberly

Little~shedevil~dee
4th September 2004, 01:25 AM
Hi Siobhan welcome to sso i am 24 from uk i am waiting to see a doctor i havent had any surgery yet

tonibunny
4th September 2004, 02:36 AM
Er actually I am 29!!!! :oops: I just had my birthday :D

Joy
4th September 2004, 06:57 AM
:welcome2: Hi! I probably can't help you much as I'm only 15 but I had surgery 19 months ago and they corrected one of my curves from 90ish degress down to 50ish degrees. I'm fused from T2 to L1 and have CD instrumentation. I'm really quite pleased with the correction that I got. I'm from Canada, by the way, I live in Edmonton.

Toni- I thought you moved to Sheffield?

tonibunny
4th September 2004, 08:41 AM
No Joy, I just changed GPs so I could see one in Sheffield rather than London, cos the NHS service where I live (Tower Hamlets, a very poor borough of London) is absolute rubbish - it took over a year to get a breast lump checked, over 3 years to get them to let me have the Costoplasty that Mr Edgar was all prepped and ready to do at a minute's notice, and I had been waiting over 3 years for physiotherapy which never materialised. In the end I just gave up as it was having a terrible effect on my health - I've had to pay to go private out of my own pocket for things such as the Sleep Study I needed to check for Nocturnal Hypoventilation, as my GP wanted to sign me off work for well over eight months while I waited to get one on the NHS, and I couldn't afford to miss that much work! So, I've signed up with a Sheffield Practice instead; I've given a friend's address in Sheffield and am paying Council Tax there so everything is above board.

Whereabouts in London are you Siobhan? I *really* do hope you're having better luck with your local health service than I have done in Tower Hamlets!!!

Joy
4th September 2004, 06:07 PM
Siobhan, do you know when you're having your surgery yet? Or are you still on a waiting list?

Toni - that's awful. How could they make you wait so long when your surgeon was ready to do it right away? And not even giving you physio!! Stupid beuracratic people!

Oops I'm getting off topic again. Sorry.

Kayla
4th September 2004, 07:43 PM
sorry im late but welcome to sso! my ribs rotated a lot up by wher my shoulder blade is!

floralgypsy
4th September 2004, 10:46 PM
Hello Siobhan, my name is Charlotte. I had surgery nearly two years ago when I was 18, so I doubt I can offer much advice other than to stick with us and gain as much support as you can. Surgery is really advanced nowadays and I am sure you will have a wonderful result. I hope you find all the information that you are looking for and that we get the chance to know you better.

Amazed Jean
5th September 2004, 09:18 PM
I'm also old but new here. I am also new to chatting with a computer - this took me four days to figure out. I have some big curves (over 140) and I have lousy lung capacity. Now on full time oxygen. Going to Twin City Spine Center in a few weeks anybody know anything about them?

Kayla
5th September 2004, 09:48 PM
welcome amazed! wow your curves are big! i hope twin city helps you out!

Lieve
5th September 2004, 09:55 PM
Welcome to sso Siobhan and Amazed! I'm 31 years old and living in Belgium. I haven't had surgery.
Amazed do I read really curves over 140? :-o

sins
5th September 2004, 10:33 PM
Hi amazed,
that's a fine curve!
I don't know anything about the hospital you're attending, but there's a few of us here who have 100+ curves and have poor lung capacity.
There's myself, Pauline and you can read Natasha's posts as she has just had a 155 degree curve corrected satisfactorily a few weeks ago.If there's anything at all we can do to help you through your surgery and share experiences with you please ask.Perhaps some of our American members can tell you about the hospital where you're having your surgery.

Carly
5th September 2004, 10:53 PM
Welcome to the both of u! My name is Carly, I am 16. I havent had surgury... Good Luck!

Kaja
5th September 2004, 10:56 PM
Wow, you must be really brave, Amazed! Welcome you two, btw :D I'm 15 in a week, and had surgery a year ago.

jfkimberly
6th September 2004, 08:50 AM
Originally posted by amazed@Sep 5 2004, 02:18 PM
I'm also old but new here. I am also new to chatting with a computer - this took me four days to figure out. I have some big curves (over 140) and I have lousy lung capacity. Now on full time oxygen. Going to Twin City Spine Center in a few weeks anybody know anything about them?
I don't know much about them that I didn't just learn by searching for them online (click HERE (http://www.tcspine.com/default.asp) for their website, which includes bios on each of the clinic's physicians). They certainly look like they're worth your time to consult.

How old are you? When was your scoliosis first diagnosed? Have you had surgery before? When was your last follow-up? I'm sorry... I have a million questions.

My curve isn't nearly so severe, but I had fusion (without instrumentation) at 11 months, so my lung capacity is quite restricted. I just started on nocturnal BiPAP (so recently that I'm still not adjusted to sleeping with the mask on), but I've got a consultation with a scoliosis specialist on September 14th, and I'm hoping to be told that I am a candidate for revision surgery which will make the BiPAP unnecessary.

Siobhan
6th September 2004, 02:29 PM
WOW! Thank you all for your support and replies. I live in London and am at the Middlesex. I was under Mr Edgar but he's retired now so I'm being looked after by a Mr Etherington. No date for surgery, but it'll have to be after the footy season ends!! For anyone facing surgery imminently, best of luck. Will drop by again soon..have to do SOME work whilst I'm here!!

Joy
6th September 2004, 08:42 PM
I think some people here know Mr. Edgar.

floralgypsy
6th September 2004, 08:49 PM
Originally posted by Joy@Sep 6 2004, 07:42 PM
I think some people here know Mr. Edgar.
Toni springs to mind...I think :spin:

Pikey
8th September 2004, 05:45 PM
Another Arsenal fan thats what I like to hear .Hi Siobhan and welcome along , I guess i'm one of the oldest here but still young of mind or is that heart . I used to live in Beckenham but moved to Walderslade about 4 years ago .I had surgery back in 1976 and further surgery to my neck earlier this year .The new procedures are a lot better than they were in my day and I'm sure you will be pleased once the Op is all over .Chat soon ,Pikey

ivanleg
8th September 2004, 05:58 PM
Yes Mr Edgar was Tonibunny's surgeon.

Liv
8th September 2004, 06:09 PM
Yup, click here for Toni's medical history (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&act=ST&f=1&t=5&st=0#entry71) (and other stories). Good luck, Siobhan! :niceone:

gabrielle
13th September 2004, 01:18 AM
Siobhan-
I'm a newer newbie myself, but wanted to say Hi and Welcome anyhow! I am 42 years old and have an 80 degree lumbar curve. Yep, my ribs are rotating too. Lots of pain from where my left ribcage is mashing into my pelvis, along with my lower back screaming louder with each passing year! :welcome:

tonibunny
13th September 2004, 01:57 PM
Siobhan, I did indeed have Mr Edgar as my surgeon! He treated me for 25 years :o and I was one of his first patients as a scoliosis consultant. I was the worst case of infantile scoliosis he'd seen up until then, and he told me a few years ago that I really scared him because he could see that my curves had the potential for being extremely dangerous.....but well, he sorted me out brilliantly!!! The man is a complete star.

Amazed Jean
13th September 2004, 11:59 PM
Doesn't it make you feel kinda strange when a doctor says"Geez, I've not seen a curve like this before!" What am I supposed to say,"Sorry, or Oh Goody"? I have been kinds vague about my curves forever and its just recently I've even looked at the numbers. Today I got out a bunch of my records I've been amassing at home to take with me to my appointment on the 21st. and I read through them. My latest says three curves 140+, 88, 50. Yesterday I looked at my xrays for the first time. I mean really looked at them for longer than a sec. Okay now I want to throw up. It scares the beejeezers out of me. Aren't spines supposed to be straight! I want a new one! This one isn't fun! I don't want to be on O2, I want to be taller than 4'8" (I haven't measured in awhile, I think I'll let that one wait ahile.) and I want to be straight! Deep Breath! I CAN handle this. I CAN. Just please don't let that grandkid we are so looking forward to have this damn scoliosis!

sins
14th September 2004, 12:14 AM
My appointment with a new consultant is this Wednesday and like you I've been putting together my medical reports and x rays.I've got this sinking feeling in the pit of my stomach and no matter how I try I can't stop thinking about what his reaction will be.I detest looking at my x ray.
For many years in my teens I only saw part of the main curve on the x rays and last year I had a full spine x ray done and I got such a shock that all questions that I'd prepared disappeared into thin air and I came away with more questions than I'd went in with.
I know and have accepted that I'm never going to be tall and have a straight spine as I've already had my spine fused and taking down the old fusion would not be worth the risk.However you have never had surgery so you have some chance of improvement.
You can handle it because you know some of us here are going through exactly the same thing at the same time and we can encourage and push each other to get through it.(then we can find some humour in it all and laugh).
I know you're so anxious about your grandchild! I'm sure the obs/gyn will check out the spine during the scans and even if the baby should have scoliosis you can be secure in the knowledge that scoliosis is now a very treatable condition and no child will end up with curves like ours.chances are that all will be fine.
Sinead.

Amazed Jean
14th September 2004, 02:50 AM
Thanks sins. Boy,I needed to say that.