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Tweety Pie
1st December 2004, 07:22 PM
Hi Everyone,

Before I post some serious 'stuff' I thought I'd first check in to say 'Hello' ! This

is a great discussion group. Lots of info ,encouragement , support and a sense

of FUN.

Jenny

tonibunny
1st December 2004, 07:25 PM
Welcome Jenny!!!! :welcome: We love newbies here :joke: Hope you enjoy the site :D

Toni xxx

Crazy16girl
1st December 2004, 07:26 PM
Hellooooo!

:welcome2:
:monkey:

Ryansmum
1st December 2004, 07:27 PM
Hi Jenny its great to meet you :welcome: This site has been a lifeline to myself and my son Ryan who has scoli.I don't know where we'd be without them all :D Dee

Jonny
1st December 2004, 07:35 PM
Welcome to the family Jenny! :-D :wave: hope you enjoy it here. I'm 16, live in England and had scoliosis surgery this summer.

butterflylr
1st December 2004, 08:10 PM
Hello!! :welcome: :welcome2: :welcome:

Amazed Jean
1st December 2004, 08:30 PM
Hi Jenny, Welcome to the site. I am the oldest (fossil) here. I'm 53 and have never had surgery or braces. (Not a good idea.) I have some big curves and I am on oxygen 24/7.

lindzi_11
1st December 2004, 08:37 PM
Hey Jenny! My name is Lindsay and I'm 15 and have recently gotten surgery! Welcome to this site!*!

Abbi
1st December 2004, 10:22 PM
Hey Welcome

Abbi
1st December 2004, 10:25 PM
Hey Welcome :welcome2:
I'm glad you found your way into our little family.....this place rocks! :rox:
As you may tell we can be a little crazy around here at times, but in the most nicest possible way of course.
well i mustn't be rude and not introduce myself....my name is Abbi, and I am 18 years old, and from Northern Ireland. I have a double curve of 80 degrees, and will be having surgery soon.You can read more of my story on: http://abbi1986.mysite.wanadoo-members.co.uk

I hope you like it here....I do, everyone is AWESOME!!! :niceone:

butterflylr
1st December 2004, 10:28 PM
Well shoot! I mustn't be rude either! :D My name is Lindsay and I am 23 years old. I have a double curve of (last I knew at age 20) of 50 and 30. I am hoping to talk to some doctors and surgeons early next year about the possibility of surgery...we'll see.

But anyway, WELCOME!! Hope to see you around here!

Tweety Pie
1st December 2004, 10:41 PM
Hi again!

Truly overwhelmed by your response.When Jonny said "Welcome to the family"
it brought a lump to my throat.

I'm so glad I'm on board !!

Jenny

Ryansmum
1st December 2004, 10:54 PM
Whereabouts in the world are you Jenny?Me and Ryan are in the UK theres a whole range of ages on here and lots of people from different countries so its great to compare notes with treatment and stuff :monkey: Ryan is 9 and has just started to wear a boston brace (we call 'him' Boris) and he's doing really well we are having an mri in a couple of weeks so not sure yet if we'll be following in a lot of the gangs footsteps down the surgery route.I am 38 by the way :oops:

elvinwarrior
1st December 2004, 11:28 PM
Hello, I'm Tesa, I'm 13 and had surgery last April. Welcome!!! :wave:

Blair
1st December 2004, 11:32 PM
Hey Jenny! I'm 21 and had surgery a year ago for a single curve of 52 degrees. Welcome!

sins
2nd December 2004, 12:37 AM
Hi Jenny and welcome to SSo :welcome: We know each other already from Scolioadults and it's great to see you here.There's a huge UK contingent here and you'll find yourself at home here very quickly.
Sins

Marti
2nd December 2004, 02:26 AM
Hey Jenny! Welcome to the sso family!

I'm 15, from Chicago, and I had surgery in july '03.

What sort of treatment have you had?

jfkimberly
2nd December 2004, 07:07 AM
Hi Jenny! I'm Kimberly, 31, with severe congenital scoliosis in the cervical/thoracic region, and mild compensatory curve and pronounced lordosis in the lumbar region. I started with plaster casts, and then had surgeries to fuse my thoracic spine without instrumentation when I was 11 months and 18 months. I'm not on 24-hour oxygen like amazed (Jean), but I do have a BiPAP machine for nocturnal hypoventilation... my lung capacity is at 30%.

Amazed Jean
2nd December 2004, 07:50 AM
Jenny where are you? How old etc. We have to catch up on all your details too.

Liv
2nd December 2004, 08:04 AM
Hi Jenny,
I'm 21 and I'm from Belgium. :D I hope you enjoy your time here and I can't wait to hear your story! Welcome to the crazy world of SSO! :niceone:

titch
2nd December 2004, 09:12 AM
I'm 31 and currently living in Wiltshire. I had a first surgery when I was just short of 21, and then a salvage surgery for flatback when I was 29, and am now fused T3-L4. :welcome2: :D

Little~shedevil~dee
2nd December 2004, 12:01 PM
Hi Jenny
my name is Dee i am 24 years old from uk
welcome to sso :welcome2:

andrea
2nd December 2004, 02:20 PM
Hi Jenny and welcome to SSO. I'm Andrea and my daughter Erin has infantile scoliosis. She is currently in a plaster jacket with the aim of correcting the curve.

Nice to see you here - looking forward to getting to know you better.

Tweety Pie
2nd December 2004, 03:23 PM
Thanks everyone for your very very warm welcome.Some names and stories
on this site are familiar .Sinns has recognised me and Amazed you''ll probably
recognise me in a minute!!!!!!!!!!

I desperately need some advice as I am very confused about whether to have
surgery or not.

I live in the UK and I feel a bit shy about my age all of a sudden .I wasn't going to
post that but everybody here seems so open and so-- young! Actually Amazed is older than me!!

Don't want this post to be tool long so willl post my story and questions in another.

Jenny

andrea
2nd December 2004, 03:27 PM
Don't be shy Jenny - age is and has always been, as far as I can tell, irrelevant. Erin is probably the youngest person on here (who posts regularly anyway - well, she doesn't, I do on her behalf) and Amazed claims she is the oldest, although I'm not sure.

Sorry to hear you're confused. It's not a nice feeling. Tell us more when you're ready.

Glad to see you're still with us crazies.

Abbi
2nd December 2004, 03:34 PM
Jenny, dont be shy about your age....just cos there is a lot of young people! How long have you had scoliosis for and what r ur curves?

sins
2nd December 2004, 04:05 PM
We look forward to hearing the full story Jenny.I'm 37 and we have a lot of adult members.There's quite a few thirtysomethings so don't be shy!
Sins

Amazed Jean
2nd December 2004, 09:05 PM
Hey can I be thirty something? 53 is thirty and something Lots of something that's all!

jfkimberly
2nd December 2004, 11:16 PM
Sure, Jean... let's just turn your age around, and you can be 35. *smile*

Amazed Jean
3rd December 2004, 01:22 AM
Ther's a saying something like "I'm much too young to feel this damn old!" Sometimes it fits and sometimes I feel much too old to go another step. I don't mind being 53 one bit I am just so done with this body. Can I get a new one please? I'll settle for a used one.... We all get fed up with all the medical messes in our lives - that's the beauty in watching little kids - they have no idea of all that they have to live through yet and they just jump into the next thing. Thank God for youth. You guys enjoy the world while your young. When you get to be a fossil its pretty much sit there and gather dust. Have I told you all that I really appreciate having this place to go to?

Tweety Pie
3rd December 2004, 03:10 PM
Well here's 'my story' in a nutshell!

I was diagnosed with idiopathic scoliosis at 12/13.I have had no treatment.
I am now 52(just!)and live in the UK.

In 1998 I saw a consultant who said it would not get worse and there would be no pain.No Xrays were taken.

In 2003 I saw Mr Hutchinson a spinal surgeon in Bristol. He guessed my curve at "50 ish" as Xrays weren't taken until after the consultation.I wrote to him asking for exact measurements and he wrote back and said I had a 75 degree C curve.

In October 2004 I saw Mr Hutchinson again, and he said he'd rather do surgery sooner rather than later as he'd get a better correction.Also that surgery would give me 30 years better quality of life;and that I didn't want to be sitting there in 20 years time regretting not having surgery.

He said curve size is not as important as rotation.He measured the curve at 70.I asked him to measure last years again and he said 70.It seems my thoracolumbar curve is somewhere in the region of 65-75.

I know that if I am going to have surgery I should not delay because of my age .But it's not as easy as that.I've decided to get some more opinions.My GP referred me to Hutchinson and he has been happy to refer me to 2 others that I've suggested.One is Mr Ben Taylor at Stanmore and the other is Mr Chan at Exeter.

Has anyone any experience or knowledge of Hutchinson,Taylor or Chan?

Enough serious stuff for now!

By the way Hutchinson has made a TV programme "Your Life in Their Hands"to be broadcast in the UK in May next year.I said I'm glad I'm not in it and he said that his producer would have loved me!(I think it had something to do with me saying that now that I've retired I'm planning to be bad!)He also called me the Felicity Kendal of scoliosis! The only resemblance I can see is that we're both a bit cheeky!!!!

Thanks for reading all this

Best wishes Jenny

andrea
3rd December 2004, 03:18 PM
Hi Jenny, and thanks for sharing your story. I know our situation is somewhat different, but Ben Taylor is our consultant at Stanmore, and I have nothing but good things to say about him. So much so in fact that I recommended him to a friend in Australia, who now flies over every 3 months to have her child casted by him privately. I don't know much about his work with older patients (anyone over 2/3 yrs) but I have always found him excellent.

Hope this helps. Unfortunately I can't offer any advice on your situation as I don't have any experience of it, but I'm sure you'll get the advice and support from the others here who have.

Take care, and again, welcome to the group.
Andrea

Crazy16girl
3rd December 2004, 03:27 PM
I was at stanmore, a couple of people on my ward had Taylor as there consultant, said he was very nice and very very good. Stanmore is one (if not the) best hospital for this sort of operation.

Im Tracy by the way, im 17. I had surgery at stanmore on the 29th august 2003. I dont really know what to say to help you im afraid...

DublinPauline
4th December 2004, 01:03 AM
Hi Jenny. welcome to SSO. My name is Pauline, I'm 38 and live in Dublin with hubby and daughter. I had a spinal fusion when I was 13 and spine seems to be stable but have lung capacity of 47%. As a result my respiratory physician is keepinga close eye on my lung function.

Abbi
4th December 2004, 01:16 AM
wow....75, I hope you can get a good correction! Thank you for sharing your story. I dont no any of those surgeons. But I hope that you pick a really nice one.....
I have heard about the programme called your life in their hands....does it show scoliosis surgery, cos it would be so cool to watch (i love surgery programmes) I watched "extreme surgery" on the discovery channel video kim (SSOer) sent me, and it was reallygood!!!
I hope your surgery goes well....I will be getting mine soon....well around September 2005 or if i am at uni May 2006.....

Abbi
4th December 2004, 01:17 AM
What is the normal lung function? and a stable lung function in a person with scoliosis?

jfkimberly
4th December 2004, 09:40 AM
Whoa. I did a little web search to find a good explanation of pulmonary function, and I found this table (http://a248.e.akamai.net/7/248/430/20031010153044/www.merck.com/mrkshared/mmanual/tables/t64_3.gif) that rates the severity of restrictive lung disease based on various results... And I just compared my most recent Pulmonary Functions Test results to the table, and I'm beyond "Very Severe."

My results are:
VC 27%
FEV1 %FVC 105

This table (http://www.merck.com/mrkshared/mmanual/tables/64tb1.jsp) shows what all the abbreviations stand for. And this page (http://www.merck.com/mrkshared/mmanual/section6/chapter64/64a.jsp) discusses pulmonary function in great technical detail.

ETA: A less technical, but more readable discussion of pulmonary function testing can be found at WebMD (http://my.webmd.com/hw/health_guide_atoz/hw5022.asp#hw5079).

BarmyArmy
5th December 2004, 08:40 PM
Hi Jenny welcome to our fun world, you're going to love this site :D

My name is Leona, I'm 28 and I live in Dundee, Scotland.

ivanleg
6th December 2004, 04:23 PM
Hi Jenny
Don't worry I'm a bit of an oldie too. I'm interested in what Mr Hutchinson said about rotation being more important than curves. So far I've had no operation but I've got two curves in the high 80s and a whole lotta rotation going on. Sometimes I worry about what will happen to me in 20 years. Hmm about time I saw some docs and got an opinion.

Amazed Jean
7th December 2004, 05:23 AM
Ivan you still haven't gone? Are you waiting for maybe a miracle? Get your butt to a doctor. Check up on your breathing - remember to use your arm span as true height. And for pete's sake do it soon. I have to know you're around here sometimes I think you are the only person that gets "it" what the hell ever "it" happens to be.Please ?

Kayla
7th December 2004, 06:00 AM
wow I am really late! I welcome you to SSO though!

Tweety Pie
8th December 2004, 01:29 PM
Hiya!

Thanks for all your very warm welcomes.Thanks Andrea and Tracy for your encouragement about Mr Taylor.

Ivan ,I'm not exactly sure what Mr Hutchinson meant about rotation but I can guess.
Like you I worry about what will happen to me in 20 years.If degeneration takes place at 1/2 degrees a year.......
Hutchinson said you don't want to be sitting there in 20 years regretting you didn't have surgery.Why haven't you had surgery?

Could the moderator change my spelling of idiopathic a few posts back please.It's in the long post I did about my story.Thanks.You'd think by now I'd know how to spell it!!

jenny

Tweety Pie
8th December 2004, 05:59 PM
Thanks for changing the spelling!

jfkimberly
9th December 2004, 01:52 AM
You can also edit your own posts by clicking on the "edit" button in the upper-right corner of your post. After you're done making changes, click on "Submit modified post" below the edit box.

(I use the Edit button a lot.)

Tweety Pie
9th December 2004, 10:35 AM
Thanks Kimberly

Abbi
9th December 2004, 08:13 PM
yep...the edit button ROCKS!!! lol when I type fast I make lots of mistakes!

Tweety Pie
17th December 2004, 02:01 PM
Hi Everyone,

When I first started posting it was with the intention of getting views on surgeons(in the UK)

My doctor ,who knows little about scoliosis, asked around and then referred me to Mr Hutchinson in Bristol.

I have 2nd and 3rd opinions due in January.One is with Mr Chan in Exeter who I heard speak at a SAUK conference.He seemed approachable and nice!
The other is with Mr Taylor at Stanmore.( I went to see someone who had her surgery with him)

I keep reading that you should reseach your surgeon well.I don't think I've done that.What do you think?

I would really appreciate your comments

Thanks
Jenny

floralgypsy
17th December 2004, 03:22 PM
Hello Jenny, my name is Charlotte and I am from England. I am 20 and had surgery two years ago for a single curve of 56+ degrees. Welcome to SSO!

titch
17th December 2004, 03:44 PM
It's definitely always good to do a bit of homework - spinal surgeries just aren't as routine as, say, hip replacements. It sounds to me like you've got a decent trio to choose between once you've seen them all though. It'll be a question of seeing them, seeing the hospitals they work out of, comparing what they say and the surgical approaches they intend to take, and then, the hardest part, weighing them up on a gut feeling. In the end it was largely that that led me to choose between the 2 surgeons I saw before my salvage surgery - of course, I'll never know if things could have been better if I'd gone with the other one, but I'm quite content that I got the best result that I could have expected :-)

I think it's easier to research docs in the US - certainly here, there's not a huge amount of sympathy for the idea of auditioning doctors, which is effectively what we're doing. The only other thought I can offer is that generally, a larger department will be better, and ideally you want someone who only does spine surgeries, not someone who splits their time between say, spine, hips and knees.

I'm sorry - reading back over this it really just isn't sounding very useful :-? Hopefully someone will come in with more sense than I seem to be able to offer :lol:

Ryansmum
17th December 2004, 06:36 PM
Hi Jenny :D I saw in your post you mentioned SAUK I am also a member and when I spoke to Pauline at the helpline she has a huge list of scoliosis surgeons there ;-) She is extremely helpful so this may be a route to finding out a bit more about your surgeons?She informed me the surgeon I have isnt a specialist in scoliosis but within our hospital trust we do have a really good one :niceone:

Tweety Pie
17th December 2004, 06:51 PM
Thank you Titch and Dee for your advice and support.
I suppose I'm getting nervous about seeing the 2 consultants as after that it will be decision time.

sins
17th December 2004, 06:57 PM
If it's any help Jenny, I would tend more towards the large specialist hospitals if possible.An important consideration is the nursing care and expertise following your surgery.I really think Stanmore would have that.Check out the homepage for Stanmore and take a look through it.
Once you talk to your prospective surgeons ask them all the same set of questions and see how you feel about their responses.personality has little to do with it, choose the one with the most expertise and the most experience of complicated cases.Also ask if there's an increased risk of non fusion because of your age.Sins
Sins

Joy
17th December 2004, 09:11 PM
Wow, I'm late... Welcome!

Tweety Pie
18th December 2004, 01:05 PM
Sinns thanks for your advice

Thaleias spirit
18th December 2004, 03:12 PM
Hi Jenny and Welcome...

I'm Michele (also known as Chele) and I'm 31 and in Ireland also (like Sins and Pauline)

I have Congenital kyphoscoliosis thats has never been monitered or treated in any way. I had my first consultation with a specialist last June and after 5 minutes he told me nothing could be done and it wouldnt get any worse.. I left without knowing the degree of my curvatures and without any xrays...

However once the new year commences I will look for a referral to another specialist, even if nothing can be done I intend on geting detailed xrays and information about my curvatures.

Best of luck with the other appointments in January. I for one will be really interested in hearing how they go.

Tweety Pie
19th December 2004, 12:35 AM
Hi Michele,

It is good that you were told that your condition would not get worse.Hope you get referred to someone who will give you more info.