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Old 1st July 2014, 07:57 PM
mamy1024 mamy1024 is offline
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Join Date: Jun 2014
Location: Macon, Ga.
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Default Upcoming Surgery, so many questions

Hello all! I've been lurching on this site for days, finally just had my account validated so now I can post. I am so happy I found you guys!
I am a 30 year old female, and like most here I've suffered with scoliosis for nearly 20 years, with back and neck pain so sharp I couldn't breathe or even move. I've tried for years to overcome my horrible self image because I've always felt like a twisted hunchback.
About 20 years ago my older sister had a 70 degree double curve at the age of 12 and had spinal fusion surgery but at the time I only had a 30 degree curve, so my mother didn't really worry about me. But the curve progressed, it's now at 50 degrees and the pain is worse everyday. Luckily, I'll have spinal fusion surgery in a few months. The day the doctor told me it was necessary and that he was going to perform the surgery was the happiest day of my life. I've wanted this for so long, I just didn't know that they performed surgery on someone my age. I thought it was just for kids, whose bodies were still growing.

So that's my bio, but I have so many questions. My surgeon mentioned several things that I don't quite understand and was hoping someone here might have some experience with it. He said my bones are more rigid than a 13 year old so my curve may not be able to be corrected as much. I was confused because I have seen xrays of people 20-30 years older than me with curves worse than mine and after the surgery they seemed very straight. I know that everyone is different, I was just wondering if anyone else had heard the same thing from their doctors. I do know that he said I will need a lot of levels fused, maybe something like T2-L4 or the other way around (I should have been taking notes, huh?). I'm trying to find a way to show my xrays.

He also said there was a procedure he could do before the spinal fusion that could, I don't know, this is the part I didn't understand, loosen my bones up? I want to say he mentioned sticking a needle in my side to do this. I've since been on the web looking for what it could be and it might be a thoracic release or it could be that he intends to do an anterior-posterior fusion. Has anyone ever had anything like this done for similar reasons, for stiff bones. What was it like? Was it done on the same day as your surgery? Was it painful? Is there an additional scar?
And my other main question is about the thoracoplasty. I have a pronounced rib hump (that I hate) and the doc said he may perform one if he thinks I won't be happy with the results from the fusion only. Most people seem to say that this procedure is hell to recover from. What are your experiences? Can only children get great results from spinal fusion only, without a thoracoplasty? Does it increase recovery time?

I'm a professional photographer and I've only got a short window of time to recover from surgery between photo shoots that I'm already committed to. I don't know how I will mentally survive 3-4 months without picking up my camera but I'm looking forward to this surgery and finally having some relief of back pain. Thank you for any feedback!
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  #2  
Old 1st July 2014, 08:15 PM
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JayMoe JayMoe is online now
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Location: South London
Posts: 913
Default Re: Upcoming Surgery, so many questions

Hello and welcome!

In answer to your questions, you remembered the levels correctly, the spine goes C-T-L-S (Cervical- neck, T- Thoracic, L-Lumbar, S (dont know) But dont worry about being stiffer than normal, not sure what causes this though. Many of us here also have long fusions, and if i remember correctly, someone here is fused at the levels your surgeon proposes to fuse you at.

But the procedure your surgeon most likely will be Halo Traction, this, as horrible as it sounds, is when they attach a a carbon halo to your head and then attach weights to it, and this gradually pulls the curve straigh over an elect amount of time and then after that they will perform the fusion (i had this done so do feel free to ask more questions and also i have photos of me in it if you want to see more.) As i also had stiff curves and so it was better to have this done to help in bringing things straight again. Its different for everyone, i wont lie, it hurt for me, mainly becuase one of the pins was located directly next to a nerve. But the pain killers they give work a treat and will take this away, they will even give you Local anesthetic at the sites if the pain gets to unbearable.

The mental aspect is difficult, but you'll be able to find ways of coping. You might not be able to pick up a DSLR during the first few months, as your unable to pick up much, i struggled to pick up a bottle of water if it was filled to much. But if you have a point and shoot, that might be more viable at the 2 month mark or so.

Hope this helps and welcome again.

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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  #3  
Old 1st July 2014, 08:39 PM
Angeceilien Angeceilien is offline
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Default Re: Upcoming Surgery, so many questions

Hi,


I was 25when I had the surgery so close to your age. They tend to underestimate the correction so that u don't get your hopes up. I had anterior posterior but not loosening and got brilliant correction. It is dependant on alot of factors.

Its a serious surgery especially for an adult. Without sugar coating the recovery is rough. I tried to go back to work around 4weeks. I still struggle quite abit though. It varies from case to case. There are people on here that really can do amazing things after the surgery.

Hope it all goes well for u

Ange
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Old 1st July 2014, 11:28 PM
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bluestone bluestone is offline
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Location: west midlands
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Default Re: Upcoming Surgery, so many questions

Hi and

I had my surgery 3 years, 8 months ago when I was 45-I was fused T2-L4 with a thoraplasty. I wasn't 'loosened up' I had a posterior fusion on a very stiff spine and I am straight Your surgeon is probably erring on the side of caution regarding how much correction you will have because until your on the table they don't really know. I was told there was a chance I would need the anterior release but my surgeon spent 10 hours on my stiff spine to avoid it and for that I'm truly grateful. The effects of a thoraplasty are amazing, I had mine done at the same time so I'm not really sure how painful it was because everything was hurting but the ribs do heal pretty quick and I've heard that the immediate severe pain is pretty short lived. I get a little tenderness there and I have some ongoing pain from protruding metalwork but it was worth it and I'd do it again because its great having a straight strong feeling back

Its a very tough surgery to go through and its important to have a positive state of mind as its a very up and down recovery for an adult. Going back to work times can vary a lot, unfortunately its not something you can put a date on because you don't really know how you will feel.

If you have anymore questions just ask away.
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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. Now nice and straight
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Old 5th July 2014, 10:17 PM
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kezpet kezpet is offline
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Location: Reading
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Default Re: Upcoming Surgery, so many questions

Hi
I had 2 stage surgery in jan13,
The first op, anterior release was to loosen the spine, they went in through my right side removed 4 discs & ribs to loosen the curve, and then a week later they put me back together so to speak putting the metalwork in.
Sound worse than it worse, it was tough, but sooo worth it!!!
My spine isn't totally straight as you can see from my profile pic, but I also had a costoplasty during the 1st stage so my rib hump is virtually gone thank god!
I'm not perfect but I am a million times better than I was, and most importantly I'm fixed and the happiest I've ever been
Good luck with you journey
Kerry x
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34 year old, diagnosed @ 15 with 75* curve, progressed to double curve 110* and 60* by time of surgery.
2stage surgery under Mr Lehovsky @ Stanmore aged 32- Anterior 16th Jan 2013 and Posterior 22nd Jan 2013. Came home 30th Jan 2013. Fused t1-t12.
I am very thankful to Mr Lehovsky, Hanny registrar, Dr Inyaki and the rest of guys at RNOH Stanmore for taking such good care of me and giving me a chance to improve my life.
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  #6  
Old 6th July 2014, 06:21 AM
Rod Stewart Rod Stewart is offline
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Posts: 217
Default Re: Upcoming Surgery, so many questions

Quote:
Originally Posted by mamy1024 View Post
He also said there was a procedure he could do before the spinal fusion that could, I don't know, this is the part I didn't understand, loosen my bones up? I want to say he mentioned sticking a needle in my side to do this.
After reading this, it sounds like he wants to do an XLIF. This is where the go through your side working through tubes or portals. This is considered a minimally invasive anterior procedure since it is usually two small holes or slits around 1 in length. They will remove your disc or discs through these tubes and insert a cage or a spacer. Of course this fuses into solid bone over time. The posterior portion usually comes after, in the same day or staged a few days. Fusing from the front adds integrity to your fusion. XLIF is also not used for the lowest 2 lumbar levels so it looks like your not going to be fused to the sacrum or pelvis. It is a form of anterior release. Think of this releasing as relating to soft tissues and not bone. Its also not a complete release since anterior patients can be staged a few weeks before their posterior procedures.

http://www.spine-health.com/video/la...ion-xlif-video

Thoracoplasty has become a rare thing in the US.... The modern spinal systems correct vertebral rotation with pedicle screws, and most rib humps are reduced significantly. Thorocoplasty involves a thoracotomy and yes I have read they hurt. I have also read that this is probably THE most painful surgical procedure that is done, so you should ask about this. They cut under your arm pit to gain access.

You have some heavy duty scolis posting here on your thread....the toughest of the tough.

Welcome to the forum

Ed
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55 yr old male
T70 L70 double trouble
A/P T2-Pelvis BMP Jan 2008
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