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sai
01-30-2007, 05:09 PM
hey

noticed the majority of people on here are from America...which is fine but i think they have different procedures from the surgeons here.

Anyway it would be cool to start our own thread.

Sai

mouna
01-31-2007, 01:53 AM
Hi Sai
I'm originally from London but now living in Paris, and I'll have my surgery here - so I guess I don't count!

the optimist
01-31-2007, 10:14 AM
yep i am from london and use the nuffield centre (oxford), i have been ignoring my scoliosis til recently what are you doing and where are you being treated ?

let me know a bit about what you are doing/ going through and ill do the same if you wanna have a virtual chat

Robbie
01-31-2007, 01:22 PM
I live in the USA (I'm in England at the moment), but I was treated at the Nuffield Centre in Oxford, England.

sai
01-31-2007, 01:26 PM
yay i got replies lol


Hiya Mouna-when is your surgery due? how long have you lived in paris?

hey optimist-how old are you and how long have you been ignoring it?

I found out i had it after breaking my leg at 15 and the specialist then said that it wasnt too severe and i should be ok without an operation because it was extremely risky. I wasnt in severe pain then so just got on with my life. Obviously i had to be careful doing certain things, not carrying anything heavy etc but i pretty much got on with it up till about 3 years (im 26 now)ago whern the pain was just too much for me to ignore.

It started affecting my day to day life and was getting depressed-thats whne i refered myself to the royal national in stanmore because the specialist at the local hospital was a twat and just wanted to see me every 6 months but not do anything about it-well anyway to cut a long story short-i had my op august of 2006 and im doing great but have my off days where im down-im still in recovery and just wanted to give suport to people that havent been through it yet or the ones that have.

sorry for babbling on!!
;)
sai

mouna
01-31-2007, 01:34 PM
Hi Sai

I'm 47 and my op is scheduled for feb 14 - er, soon! I've lived in Paris for the last 13 years - feels like yesterday..

sai
01-31-2007, 01:37 PM
hi Robbie

did you have surgery? how did it go? how long ago was that?

Mouna-i know what you will be going through now. it really seems so much worse before the op. if you want to chat im here

Robbie
02-01-2007, 06:26 AM
hi Robbie

did you have surgery? how did it go? how long ago was that?

Mouna-i know what you will be going through now. it really seems so much worse before the op. if you want to chat im here

Hi,

Yes, I had surgery on the 5th of January, 2007. Not that long ago. It went very well. My surgeon was Dr. Gavin Bowden.

kazyn
02-01-2007, 12:36 PM
Hi Sai,

I'm from the uk. I had anterior sugery done by Mr Harrison and his team at RNOH (Royal National Orthopaedic Hospital) in Stanmore, Middlesex, two weeks ago today.

Where did you have yours?

Karen x

sai
02-01-2007, 01:33 PM
Robbie-im so glad to hear it all went well. how are you feeling about it all at the moment? its still very new i know
ive heard of Dr.bowden when i was doing my research pre-op-all good reviews
how are you finding it with the brace?

hi karen-i had mine at the same place. how are you feeling now? mine was posterior so slightly different but i made good friends with a girl that had kyfosis-think thats how its spelt!! who had the same op as you in the ward.

nice to hear from people i can relate to more :)

kazyn
02-01-2007, 01:54 PM
Hi

I made friends with a girl who had the same op as me too. I was on Jackson Burrows ward. I saw the bunnies design. I opted for the flesh coloured one. Boring I know lol.

It is so good to hear that you are recovering so well. It really makes me feel better. I have been feeling like I will be like this forever. I know I won't. I am just trying to stay positive, and hopefully I will recover quickly and be back to myself soon.

sai
02-01-2007, 02:00 PM
I was on the same ward!!

I thought the same as you but really-everyday i could notice a little difference. little things that other people wouldnt have thought about twice.

i kept a diary from the day before my op and now when i look back at it-i know how much ive come on and it will be the same for you too.

Stay positive, dont push yourself but do what you can. Are you getting any help? you know that there are certain benefits and help with self care if needed.

Robbie
02-01-2007, 03:57 PM
Robbie-im so glad to hear it all went well. how are you feeling about it all at the moment? its still very new i know
ive heard of Dr.bowden when i was doing my research pre-op-all good reviews
how are you finding it with the brace?
Thanks!

I feel fantastic at the moment. I haven't had any pain for the last four or five days, and I haven't been taking any of the pain medication I was given. I found Dr. Bowden to be a fantastic doctor. I have my first post-op appointment with him on the 19th of February.

I wasn't given a brace to wear.

sai
02-01-2007, 05:05 PM
Really? thats ace (i know such an 80's word lol)

im too atched to my brace now so might have been better for me not to have one from the beginning.

its great not having any pain after all those years of constant pain,isnt it?

i feel like ive got a new lease of life and i want to do things that i wouldnt have if i hadnt of had the op.

Make sure you write down questions as you think of them so you dont forget once you go to see him. Do you have any pre/post op pictures? ive got my pre and post op xrays but cant upload them here :( if you send me an email address i can forward as atachments for you

the optimist
02-02-2007, 04:53 AM
hey sai
i am 24 and havent been to see anyone about my back since i was about 16, as it didnt cause me any pain and my doctor said that scoliosis is PURELY COSMETIC!!!!! I wasnt to worried. About a month ago i stated getting a twinge in my bottom right rib (have quite an obvious rotation, on the sticking out right side) which has since gone but still feeling kinda stiff, probably not helped by the fact i am now freelance and sit in front of a screen for about 8 hours a day!! so going swimming in a minute as it always makes me feel amazing afterwards even if i have to bulild up courage to show off my back in a swimming cossy :(

hey robbie
how come you had your surgery at nufffield and not in the states? really glad it all went well, i am really scared about going back and I have to book my referal today too!
will update everyone when my first appointment in years is later agghhhhh!

thank you sai for starting this brit thread it is great to hear from locals hehe
cheers
sam (the optinist) x

Robbie
02-02-2007, 05:25 AM
I hold dual-nationality between the United States and United Kingdom, so I can live and work in whichever I choose. I had the surgery done in England because it was covered by my father's health insurance provided by his work. There was absolutely no way I could have afforded it over in the States. Plus my parents live over here, so it was nice to be with them through it. It just made more sense to have it done here. Depending on if my doctor will let me, I'm hoping to return to the USA in April.

I only have a post-op x-ray, which you can see at http://www.robbieshields.net/x-ray.JPG.

I'm jealous of you for being about to swim! I can... er... sink? lol. I've never been taught how to swim. I really should learn.

I hope your appointment goes well, Sam/the_optimist.

the optimist
02-02-2007, 08:13 AM
looks great (dont think i have ever said that about someones insides before!)
yeah i have booked my first appointment for the 15th of march arrgghhhh! think i am more prepared now i have dicovered this forum

you are so lucky having dual nationality, i lived in new york for 4 months and really wanted to stay longer and cant wait to go back there!

did you have the op cause you where in alot of pain?

i have just recently started feeling a bit achy but there isn't that much pain at all (standing around for ages can make my hips ache)

carry on healing well and enjoy the untimely sunny weather

how come you dont have a brace it seems like everyone on here has had one after the op ?

Robbie
02-02-2007, 08:26 AM
I'm not sure why I wasn't given a brace. My doctor just said to be careful. I seem to be getting along fine without one.

I mainly had the operation because the thought of my spine being curved like it was really bothered me. I did have some pretty bad pain at times. Standing around for long periods of time made my lower back ache.

I'd love to go to New York, especially New York City. It looks like such an amazing city. I live in North Carolina in the USA. I originally come from New Mexico, but I was only there for like a month. I'm going to go back and see where I was born someday.

Good luck with your appointment. Who is your doctor? Let us all know how it goes.

bonjour
02-02-2007, 09:13 AM
toc-toc not just us,hello i am dual english french (more french )and i am at 6 weeks from my scoliose op in paris fused from d7 to s1 ,i m 40 .what do you do with yourselves during the day?so much to do here and not alowed ti do anything getting booring,and difficult.i still have big moments off pain where i have to stay flat on my back.
bye

Jen-jen
02-02-2007, 09:28 AM
Hey, I'm in the UK but unlike all you people being treated in London I'm up at Jimmys Teaching Hospital in Leeds! Due for surgery in July when I manage to actually get a call through to my surgeon. lol. I was told scoliosis operations were purely cosmetic too but he then contradicted himself a bit and called it my DEFORMITY. Now I know it is a deformity really but it was a bit harsh on my first diagnosis as a shy 13 year old lass. lol

x x

the optimist
02-02-2007, 10:19 AM
yeah i think it is all way to much to take on board when you are told in you early teens, so are you (jen jen ) a nurse (or training to be one)? I worked with a few student nurses who told me that they saw a video of the operation, Have you seen one ? apparently its a bit scary so maybe best not too! ;)

good luck with the op in july, keep us all posted on your thoughts and feeling before the big day

sam / the optimist

Jen-jen
02-02-2007, 12:18 PM
Hi, I haven't seen a video of the op and I'm not sure I want to actually SEE what they're gonna do to me! lol. I'm not a nurse (or even a student nurse), I'm merely a student although I wouldn't mind a career in medicine. I like your name by the way, very..... optimistic. lol x x

sai
02-02-2007, 03:06 PM
hello bonjour (congrats with the op)and jenjen(im originally from near leeds)

optimist-It is so not "purely cosmetic". My main pains started a 3 years ago with a twinge aswell and after that it was downhill with regards to the pain and affect on my life. i hope it isnt the same for you but im glad your getting it looked at again. Are you seeing a local ortho specialist? if you are and you are not happy with what he/she says please look into refering yourself to a scoliosis specific specialist.
I also had an office job but my work were quite good and got me a chair that was moulded to my back so really uncomfortable for everyone apart from me due to the right shoulder blade sticking out.

Swimmimg is excellent for you but unfortunately im with Robbie...i am planning on learning once im fully recovered tho.
Good luck with the appointment-if you want to know the type of messages i first asked let me know-maybe something inthere that you can use.

Robbie-Your xray looks fantastic.

Heres the piccies for you

Jen-jen
02-05-2007, 12:27 PM
Thats what i thought when my doc said it was cosmetic. He also said "scoliosis will in no way affect your future". Wrong! After a few months I started getting pain too. Only a dull ache at the end of a long day but now it can be quite painful doing normal things like lying on my back or walkin round college. Sitting is the worst cos the chairs are not very forgiving on a twisty back. lol. I wish my college would get me a chair like the one your work got you!
Those pictures are great by the way, what was your original curve size cos if you can get that much correction then I'm gonna be one seriously happy lass after the op! lol x x

sai
02-06-2007, 03:11 PM
"scoliosis will in no way affect your future" What a load of S@%& (pardon my french). I dont wish scoliosis on anyone but if he/she actually knew what the pain was like to live with they would never say this.

Yeah i must say my chair was fantastic...and pink!!! lol but no good to me when i go back now because in 'normal' woo hoo (still feels great to say that).

My main curve was 49 degrees. when is your op due jen-jen?

My friend has just been round after a month, to see me, and she said in that month i have progressed so much. so even if it seems like you cant do anything straight after the op-everyday you can do a little more.

Just to give an update im exactly 6 months post op and today was my 1st full day without the brace!!!! it feels fantastic and i feel realy light without it-can start showing off my new clothes now :D

Jen-jen
02-07-2007, 10:27 AM
Sounds like you're doing great!! I can't wait til I get to say that I'm "normal" again. Then again I dont ever think I was that normal before! lol. Pink chair?! Ace!!!!
My op was due for June last year. then they wouldn't give me a date.... so it kept going on and on and on until eventually it got to mid august and i couldnt really have the op after that cos i was starting college 2 weeks after. So now my op has been pencilled in for july this year. However, my doc is extremely hard to get hold of. I was supposed to have an appointment in Dec: didnt come through. I have tried ringing him: never an answer. Typical!
The doc that told me scoliosis would never affect me was only a consultant so i got referred to a different doc (thank god!). This new doc still thinks scoliosis isnt painful. Yeah right! Honestly, they may perform miracles (like straightening me out) but they have no idea! lol.

x x

sai
02-07-2007, 12:47 PM
dont feel dis-heartened, my op was cancled a few times (the worst was an hour before i was supposed to have the op!!) but we got there eventually.

Good look for it Jen-jen.just make sure you are as fit as possible before you go in for the surgery to help with your recovery. As soon as i found out i needed an op i stopped drinking and smoking. Even though the specialist didnt mention this to me , i have since read some reports where they think it is best to stop.

If youve got any questions then id be happy to chat.

Sai

Jen-jen
02-07-2007, 02:57 PM
An hour before?!?!?!?! Chuffin hell!
Don't worry, Im kinda a fitness freak anyway. lol. So this was your first day without the brace since the op. Is it usual to keep it on 6months??? x x

sai
02-07-2007, 03:57 PM
Yeah it was a bit of a heaf f%@k. i prepared myself for it then it wasnt going to happen. i didnt know wether i was relieved or if i just wanted it over with.

The bracing depends on the surgeon you have but also up to you.

One of the girls i met at hospital took it off after 3 cos she hated it-i think her surgeon told her to keep on a bit longer

My surgeon told me to start taking off at 6 months but some dont like their patients to have on for so long...and i know why..you get too used to it and then difficult to feel comfortable without it...but i got there in the end.

So how old are you Jen-jen and where are you based?

Marty
02-07-2007, 09:02 PM
Well done sai, getting that brace off must be a releif. So are you out and about, oh yeah and can you walk after the op or do you need a wheel chair?

sai
02-08-2007, 09:13 AM
Thanks. im more out and about than before.

i didnt need a wheelchair before the op or after. started walking in the hospital about 2 days after the op as soon as my brace was fitted.

could only walk a few steps initially but was walking properly after few days.

Jen-jen
02-08-2007, 11:18 AM
I tell you what, you're definitely putting me at ease about this op: walking after 2 days... thank god! I couldnt put up with being still for longer! lol.
I think Ill keep the brace on for a bit longer than 3 months, just grin and bear it. I know this is the 18+ section but I'm 17 and Im in Scarborough but being treated at Jimmys in Leeds. You?

x x

sai
02-08-2007, 11:59 AM
yeah they try and get u up and about asap.

im 27...today :( i know im an old bag he he he-in london

Robbie
02-08-2007, 12:20 PM
Happy birthday, sai! :)

sai
02-08-2007, 12:33 PM
Thanks Robbie

1st bday being straight :)

Marty
02-08-2007, 01:21 PM
Happy birthday from me too, Sai!

sai
02-08-2007, 01:39 PM
thanks marty

:D

RoundTheTwist
02-08-2007, 02:15 PM
I'm from the UK too,

I mostly post in the revision part of this forum cos thats where I am in regards to my Scoli, and missed this thread.

I had my op 3 months ago at the RNOH with Mr Harrison, I'm so pleased to have finally found someone else out there who has had surgery by him!

I have a brace on too at the moment, looking at the telltale signs ;) on your x-rays Sai, I think we have the same sort of brace, mine is starting to drive me insane!

I think your before and after pics are amazing, you got such excellent correction, so much better than I got with my first surgery in 1991.

If you want to chat more, let me know :)

Kat

Ps I have PM'd you

sai
02-09-2007, 11:12 AM
Hiya Kat

Nice to hear from you.

My surgeon was Mr.Harrison but at the time of my surgery he injured his arm so i had Dr.Lehovsky instead. I do know a lady that had surgery with him though and he is very good. I still have to see Harrison for my post op appointments though.

Do you have any before or afters? would be interesting to see.

Im out of my brace now but i miss the bunnies....lol.

How are you getting on after the op? progressing well?

Sai

sai
02-09-2007, 11:32 AM
hiya guys

Roundthe twist informed me of this site:
http://www.scoliosis-support.org/modules/ipboard/
its a uk based scoli site.

i havent had time to check it out yet but i will.

Sai

RoundTheTwist
02-10-2007, 08:18 AM
Yeah I know about Mr H being out of action for a while, he had carpel tunnel syndrome, I didn't realise Mr Lehovsky had taken on his surgeries though. I was meant to see him years ago but he refused b/c I was pregnant at the time.

Mr Harrison did actually do my surgery, he's one of the few that is practised in revision surgeries and I trust him a lot.
I chose 'urban combat' for my brace, I'm not a 'girly girl' and didn't fancy bunnies or teddy bears or pink for that matter either!

I have before and afters of my first op on the UK site, but I haven't got the before of my current op yet, though I have got a couple of after x-ray pics.
I'll probably post them on the UK site though as I'm more active there.

Revision recovery seems to be worse than First surgery in my experience, maybe its just cos I'm older now (31)

I still have 'issues' I need to take up with the hospital, but I had my first op 16 years ago now, so you lucky lot don't have to worry about all that!
Surgery has changed so much in 16 years it is unbelieveable, part of me wishes I had waited, but then again my curves were progressing so fast I didn't really have the option to wait.....nevermind,

Kat

sai
02-10-2007, 02:04 PM
Hi

I dont think he took on all his patients-but because they messed me around quite a lot-the outpatients manager managed to get me a quick slot with Lehovsky.

Im not really a girly girl either but got the bunnies for my nieces sakes who were terrified of me when they saw me on the ward so it made it slightly easier for them.

Sai

sai
03-01-2007, 03:23 PM
Hi everyone

havent heard from the 'uk posse' in a while, just wondered how you are all getting on.

Hope your all well

Sai

UKMum
03-01-2007, 03:47 PM
Hi Sai,
I've been following your posts - thanks for sharing your post surgery experiences. I don't really belong in this part of the forum as daughter-with-scoli (Annie, 61T, 41L) is 14, but let me say hello anyway. Annie's surgery is on March 23rd in Birmingham. Wish us luck.

It's kind of odd but we have never met anyone in real life who has been through this experience, so this forum is the next best thing!

All the best
UKMum.

Robbie
03-04-2007, 01:00 PM
Hi everyone

havent heard from the 'uk posse' in a while, just wondered how you are all getting on.

Hope your all well

Sai
I'm not doing too badly. I'm completely off my medication now. I went to see my surgeon for my six week post-op appointment in February. He said he's "delighted with my progress." He wants to see me again in three months time to have some x-rays taken.

sai
03-05-2007, 03:01 PM
Hi Sai,
I've been following your posts - thanks for sharing your post surgery experiences. I don't really belong in this part of the forum as daughter-with-scoli (Annie, 61T, 41L) is 14, but let me say hello anyway. Annie's surgery is on March 23rd in Birmingham. Wish us luck.

It's kind of odd but we have never met anyone in real life who has been through this experience, so this forum is the next best thing!



hi ukmum

good luck with the surgery-i know what she will be going through but she is young so recovery should be even quicker-she will be up and about in no time trust me.

I hadnt met anyone in real life either untill i went to hospital-and of course all the guys on here.

Hiya robbie-nice to hear your getting better-yeah i had xrays at 3 months aswell and next ones due end of this month which should be 6 month post op appointment but is actually closer to 8 months.(take picture on your phone when he shows you, thats what i did)

im pretty much back to normal now.

the optimist
03-16-2007, 07:55 AM
hey uk guys
so i had the check up after 13 years and i have found out everything i have been wondering about all that time. I found that i have an 80 degree curve and that my surgeon is now a professor, Has anyone had prof Fairbanks operate on them, he is so confident and matter of fact that i just felt straight at ease. He actually asked me what he could do for me ..... it was great making the decision and not having it made for me (like when i was 15)
so he said that there wouldnt be much correction but he would get rid of the rib hump :D
i have written more on the thread about long fusions (as they will fuse between T3 - L3 on me)
anyhow i feel that i am finally facing my fear and that feels good, much better than the unknown
this forum and especially you uk posse have made me feel great and i have gone from crying every night to smileing most of the time as i have finally excepted the operation
THANK YOU
sam/ the optimist

sai
03-21-2007, 04:40 PM
hi sam

its great to read that your appointment went well and you are feeling positive about it all. i am still to read your longer post about it but you sound a lot happier.

keep us informed of how all goes

sai

the optimist
03-22-2007, 05:36 PM
i just chatted to my friend from university who had scoliosis and had it operated on the year before we went to uni. I was telling him about how i was set on having surgery and in a way kinda excited about it and he said he had t3 - L3 fused and he had prof fairbanks ...... SO WIERD THE SAME SURGEON AND THE SAME FUSION!!! It's really cool to know that a year before i meet him he was laid up and that now he is still lifting things and making sculpture like me(i was scared i would never be able to lift !)
he also said he never noticed my rib hum ! which is great coming from someone who knows what to look for

really happy i spoke to him and feel x100000 better now i can talk (on this forum and to him :D )

thanks for all the advice

sam/the optimist