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  #1  
Old 10th June 2014, 09:50 AM
indiekelly indiekelly is offline
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Unhappy New, terrified, confused, scared, UK based

Hi All
There are loads of great posts on here about people documenting their procedure which is really helping and im gutted I haven’t found this sooner!

I'm in desperate need of support or a listening ear L family are great but as others have said on here they cant really understand what im going through.

I have been a patient of the Royal Orthopedic Hospital Birmingham since I was about 21 so nearly 5 years. My scoliosis was ‘noticed’ on a routine appointment to my GP when I had a bad shoulder and I have never really had any pain.

Since seeing the specialist team on a yearly basis the top consultant Mr Marks (apparently top notch!) compared me to a similar early 20’s female and said I would only need three pins at the bottom of my spine – it’s a 45 degree curvein the shape of an ‘L’ if that makes any sense.

However the following year a member of his team said I would need two rods and they would have to open up the front by my stomach to get through – which really terrified me but I tried to take it with a pinch of salt as their ‘higher up’ had told me something different.

Anyway over the years the main question has been is there any pain and there hasn’t been until the past twelve months where I am aching a lot but I have increased my exercise to four times a week so I cant differentiate if it is that. Also my back aches a lot if I am standing all day but again thatmight happen in someone with a straight spine right?

Fast forward to last monday and as you know surgeons can be very blunt. I asked for Mr Marks but he was unavailable and I had another member of his team. As im sure you might know surgeons can be very blunt so he simiply said ‘do you want the surgery or not?’. My mum said my face went white and I did get a bit panicky. I just couldn’t brind myself to say yes??? We agreed I would see him again in 6 months.

I have become more depressed in the last year because my hips are different heights and my shoulders are different heights (although no one seems to notice until I say) so it affects what I wear. And the doctors have mentioned that I can have the surgery anytime up until 30 partially because your body will bounce back quicker and after 30 your body starts to change?

After all that waffle, to narrow it down, and please don’t take this as a moan but I’m not in pain so should I have it?
I’m just terrified of the risks involved (<1% paralysis, <5% infection so I’m told) and the pain to go through considering I’m not in pain at the moment.

Most people I read about with scoliosis needed the surgery as they were in pain but I’m struggling to relate because I am not as bad as that.

Feeling very fragile. Any advice/feedback is greatly received.

My profile pic are my pics from 2010 left and 2013 right, everyone I have seen seems to think the curve hasn’t changed but the pics seem to suggest otherwise?....
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  #2  
Old 10th June 2014, 12:21 PM
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tonibunny tonibunny is offline
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Default Re: New, terrified, confused, scared, UK based

Hi Kelly, welcome to SSO

I'm sorry that you're facing surgery but am glad that you have found us! you are in very good hands in Birmingham; Mr Marks is indeed one of the best surgeons in the country. It is normal for consultants to share work around their teams, so please don't fret if you don't always get to see Mr Marks himself - his team can give their opinions on stuff but at the end of the day, he is responsible for your care and he will decide the best approach to take. You could call Mr Marks' secretary and ask that you get to see him personally at your next appointment, because you are having to make a decision about having surgery - they should ensure that you see him, so he can answer your questions.

It is standard treatment today to have two rods inserted, one on either side of the spine, so please don't let that scare you. The instrumentation is very good, and it's great news that you will only need a short fusion. Since you have a lumbar curve, and most of our twisting and bending at the waist is done using the lumbar vertebrae, it's likely that you will feel very stiff after surgery - but please be assured that most people adapt to this and once you are healed you probably won't notice much reduction in your mobility at all. I have four out of my five lumbar vertebrae fused and can still bend down to touch my toes (on a good day haha!), I don't feel restricted at all. Some people fret that having a fusion will stop them from doing activities that they enjoy, so we have a thread at the top of this forum called "Things you CAN do with a fused spine" which gives details of all the sporting and other activities that SSO members have been happily doing since their surgeries.

Sometimes surgeries are done through the front of the body instead of, or as well as, through the back. This is because it's easier to get access to the front of the spine, where the discs are. "Anterior" surgery is a very common procedure and many people here have had it done (including myself, three times!). It isn't anything to worry about unduly.

Now, since your curve is about 45 degrees and (I assume) isn't progressing rapidly at the moment, and since you aren't in a huge amount of pain, there really isn't a need to rush into this surgery. You can take your time to learn more and decide if you want to have it done yet or not. Surgery isn't really done to help ease pain, but to prevent further progression and to straighten the curve out. As you have said, most people get some sort of back pain at some point even if they have a straight spine! Lumbar aches and pains are incredibly common. Luckily, physio exercises and activities such as swimming can help enormously with this sort of pain - so you might find it helpful to seek a referral for physiotherapy.

Surgery is definitely easier the younger you are - I've had it at 10, 18, 25, and 34 and definitely noticed a difference! Kids tend to bounce back supersonically However, you're still young and having surgery in your 20s would probably be a lot easier than if you left it until your 40s. This is probably why your surgeon recommended you have it done sooner rather than later.

I hope this helps - I'm off out now but I will be back later and Im sure there will be other members along soon to welcome you

Welcome again,
Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #3  
Old 10th June 2014, 01:01 PM
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GloomCookie GloomCookie is offline
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Default Re: New, terrified, confused, scared, UK based

Hello!

I'm afraid this is another cut and run job as I don't have time to reply properly right now but basically...

When I was your age my curve was ~35, it got 20 degrees worse in the space of a few years and I ended up having surgery at 26. I wish I'd done it when I was 21 and not waited for the pain to get bad enough to justify an A&E trip. Having said that my situation was different because I was discharged as "stable" at 21 and told there was no way my curves would progress. Ahem. If you're being monitored you can take your time to make a decision, it's your surgery and you call the shots.

I was an anterior approach (in through the side/front) and it's just my lumbar area that's fused so we sound a bit similar. I didn't *want* the surgery at all, no one wants to go through that, and putting you on the spot like that was cruel, but it wasn't really a choice as far as the surgeons were concerned and I'm very pleased I did it. Obviously I'd rather not have had scoliosis to begin with but them's the breaks!

Drop me a message if you like, you can ask any questions you want either here or privately and I'll try to answer! Most of all... You're not on your own now, we all have experience in some area of what you're going through and I'm glad you found us

Last edited by GloomCookie; 10th June 2014 at 01:03 PM. Reason: I can't type properly because I have suncream on my fingers.
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Old 10th June 2014, 01:06 PM
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GloomCookie GloomCookie is offline
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Default Re: New, terrified, confused, scared, UK based

PS your curve looking worse in photos can be due to muscles/soft tissue tightening on side and stretching on the other. Xrays are the best indication of curves but if your posture is worsening you should address it, are you having any physio or treatment? xX
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Old 11th June 2014, 12:21 PM
indiekelly indiekelly is offline
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Default Re: New, terrified, confused, scared, UK based

Hi all, many thanks for your replies, they are very comforting and I feel more supported. I'm really grateful this website exists.

Any other comments for a terrified soul are welcomed ?
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  #6  
Old 11th June 2014, 03:15 PM
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bluestone bluestone is offline
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Default Re: New, terrified, confused, scared, UK based

Hi Kelly and

My advice would be to have surgery while you are young but only if your curve is progressing.

I had my surgery done at North staffs city General just over three and a half years ago when I was 45 and my recovery has been long. I was diagnosed when I was 22 but was only seen by orthopedic drs so I kind of 'slipped through the net'.

Surgeons can be blunt sometimes, when I was told I needed surgery (my curve was 72 degrees) on my 2nd visit I saw a registrar who scared the hell out of me. He said I would be having anterior posterior with costoplasty. When I saw my surgeon again he said he would be doing posterior plus costoplasty. He believes in doing everything he can to avoid anterior (going through the front) and spent 10 hrs straightening my stiff spine to avoid it. My fusion is long and I still have pain but I'm kind of getting used to it. Thanks to the costoplasty I now have a lovely straight flat back

I think you still have time to wait if you dont feel ready especially given that you don't really have pain. Progression is the main reason for having it, anything else is a bonus.
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Thoracic 72 degrees, lumber 30 degrees. Fused aged 44, T2-L4, posterior fusion with costoplasty (8 ribs were chopped) on 3/11/10 under the care of Mr Ahmed at North Staffs Hospital.
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Old 11th June 2014, 06:19 PM
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GillyG GillyG is offline
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Default Re: New, terrified, confused, scared, UK based

Hi there

Surgery certainly tends to be easier to recover from, plus the results can be better, the younger you have it. However, with a 45 degree curve and little pain I wouldn't be rushing into anything just yet, it's not something that can be reversed if you change your mind
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Old 13th June 2014, 01:41 AM
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Little Ali Little Ali is offline
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Default Re: New, terrified, confused, scared, UK based

Hi Kelly.

Welcome to the group xx
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Born 1981 with Spina Bifida Myelomeningocele. Surgery to close lesion at birth. Anterior fusion T11-L5 aged 12. Laminectomy June 06. Posterior fusion with instrumenation T8-T11. Degenerative Disc C4/C5

Waiting for VP Shunt surgery. Under the care of Mr. Tucker who wants to fuse me T2-pelvis!
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Old 13th June 2014, 05:44 AM
Mrs. Krier Mrs. Krier is online now
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Default Re: New, terrified, confused, scared, UK based

Kelly,
I am so sorry for what you are going through and i can relate 100%!! I am 28 and in the last 3 years everythings changed, and all the sudden you do indeed feel alone, scared, fragile and did i mention scared?!
I can assure you that this place right here is a step in a positive direction. I am now scheduled for my fusion on July 29th and its all i think about, talk about and even dream about. Actually this forum has helped even my family to have a better understanding just by hearing from other going through the same thing.

Kelly i will be praying for you and i wish you the very best, i have decided to go through with my surgery because i know its coming at some point in life and i would rather tackle it young and strong and with my amazing support system i feel like now is as good time as any.
Take care, and welcome to sso!!!!
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  #10  
Old 13th June 2014, 09:25 AM
indiekelly indiekelly is offline
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Default Re: New, terrified, confused, scared, UK based

Hi everyone, thanks again so so so much for the replies. It is honestly the most supportive I have felt in the 5 years of diagnosis.

I'll try to keep everyone updated but I'm obsessed with the site now. Just have a weird 6 months of this 'should i, shouldnt i' ahead of me
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Old 13th June 2014, 11:20 AM
lozzym-may lozzym-may is offline
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Default Re: New, terrified, confused, scared, UK based

I second what everyone else has already said! If it's not hurting and it's not progressing, then don't rush into it. I know sometimes surgeons can put pressure on you to go under the knife but if you go for it, make sure it's your decision. You'll get a lot of really good balanced opinions on here that should help you build up a list of pros and cons.

I would definitely advise you to do as much research as you can and go back armed with a list of questions. It will put you in control of the decision - it's easy to feel out of control and swept away by the enormity of it all. We're all here to support you so ask us anything
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Old 14th June 2014, 04:11 PM
Izzattob Izzattob is offline
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Default Re: New, terrified, confused, scared, UK based

Hi, my son Ryan 15 has a 56 degree curve and has only slight pain occasionally. He has never yet taken painkillers. However we have taken the offer of surgery now before it progresses any more and he does get pain. Surgery is two weeks today. I feel terrified and it's still on my mind that should we be doing this if he is not suffering? However I feel as he gets older surgery will become less and less convenient with work uni etc . You just have to be positive and know that they would not suggest such invasive surgery if it wasn't necessary surely?
Most importantly I hope that you manage to make a decision that right for you.
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Old 14th June 2014, 05:58 PM
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JayMoe JayMoe is offline
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Default Re: New, terrified, confused, scared, UK based

Hi Kelly, its a bit of a late welcome from me, but WELCOME anyways

Sorry to hear that you may have to have surgery, but all of us here will be here to help with any questions you have, no matter how big or small it is and also nothing is a silly question But do take the time to think about it while you can, as you don't want to keep pushing it back and then think 2 years down the line if it gets to that, i wish i had it done sooner. I took the surgery, despite having little mainly all my muscles tensing up etc and also i had quite a large curve and didnt want it to get worse as it was 65*at last known degree and also it was long too. But i am pleased i took it all and have had it done while im young, like others have said, I'll heal better than in the years to come and also i didnt want it to impact even more than it has with studying and work etc.

Hope you continue to find 'peace' here and that you come to a conclusion in making the best decision for you

Jay
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Diagnosed at 14 in '08 and i have Neurofibromatosis Tpye 1 + Neuromuscular Kyposcoliosis in the Thoraco-lumber region (T-65* L60* if what i interpret is correct).
Had surgery 08/05/14, fused C5-T12! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
www.facebook.com/jamin.morris1-
https://twitter.com/Scoli_JayJay
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Old 16th June 2014, 10:16 AM
indiekelly indiekelly is offline
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Default Re: New, terrified, confused, scared, UK based

Good luck Mrs Krier! It’s really nice to know there are people in their 20’s going through this. Every time I go to the hospital I am surrounded by really young kids!

lozzym-may – thankyou, it does feel like an enormous thing now I am facing it but I am happy thank I am thinking about it properly rather than putting my head in the sand as I have done for the past 4 years.

Izzattob – you’re right, my consultant seems like someone who wants to avoid surgery if possible so surely he wouldn’t have given the go ahead if he didn’t think about it and he was the one who spoke about the curve changing after the age of 30. Your son sounds like he is in the same position as me and you are definitely right about uni, work getting in the way as we get older.

JayMoe – thanks so much for listening to my silly questions haha. Ive said it loads but I am so happy to have found this website.

I am definitely swaying to having it sooner rather than later, its stupid stuff like I was trying on my bridesmaid dress the other day in a bridal shop and got really sad as I thought if I was trying on wedding dresses I would hate it because of my hips being wonky L

My appointment came through for 1st December so got some time to work with.

Also, if anyone is still up for giving a bit of advice – the more I am honestly facing this and thinking about it I have noticed more in my body (which I ignored before) – did anyone get any rib pain? Because of my curve the left ribs are a touch higher than the right and they hurt sometimes. Im starting to think it is related?
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Old 16th June 2014, 02:28 PM
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JayMoe JayMoe is offline
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Default Re: New, terrified, confused, scared, UK based

Well its what this place is for, I have also for the past few years had many seemingly silly questions, but in the end turned out to actually help a few others, so ask away as it might also help others who are in your shoes Its good you've already had a think about it all. But its good to have a date in mind, as it will give you something to work to, as you said

But i did get rib pain before, and probably still will do, as mine are still prominent, and this is because your spine twists both ways with scoliosis, to the side and then rotates inwards and outwards, hence why you'll get sticky out ribs and also a shoulder blade that sticks out too. But sadly, yes it is all related, but the good thing is, thing is corrected by the surgery too, somehow, but I will stress, most of the time this wont be fully corrected with the flat out scoliosis surgery, but if you want and your surgeon is happy to go ahead with it all you can have something done which can 'flatten' them out, the name of the procedure escapes me for now, but im sure someone will be able to tell you.
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Diagnosed at 14 in '08 and i have Neurofibromatosis Tpye 1 + Neuromuscular Kyposcoliosis in the Thoraco-lumber region (T-65* L60* if what i interpret is correct).
Had surgery 08/05/14, fused C5-T12! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
www.facebook.com/jamin.morris1-
https://twitter.com/Scoli_JayJay
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