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Old 13th December 2013, 07:47 AM
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jamieelizabeth jamieelizabeth is offline
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Default Well, here is my story. Please read, I'm a newbie. =)

Hi all! I have been following this site since I was 13 years old, and am now almost 23. Finally I have decided to join!

My Story:
My name is Jamie, i'm from California and I was diagnosed at the age of 12, in June 2003 at my middle school from the school nurse's awkward, 'bend forward' test. I was referred to go to my doctor, my first XRay. It was determined that I had, and I quote, "dextroscoliosis of the thoracic segments convex to the right with the apex at T8, approximately 5 degrees of curvature". The doctor told me not to worry about it.
Meanwhile, growing up I had a lot of migraines, neck pain and everyday headaches. This is when I went through my rebellious years as a teen. Because of the amount of pain, my hormones, rebellious-ness, and frustration I made my voice heard that all I wanted was to have drugs to numb the pain. I was sick of doing 'physical therapy' that didn't help. This lead to my doctors thinking that I was a pill junkie, or whatever. Eventually someone listened, and I was sent for another XRay.

Now, in February 2008, 5 years after my 5degree curve, I measured, "approximately 35 degrees, centered at T8-T9", and my ribs are asymmetric because of the scoliosis, if that is important. Now I had their attention, and was ordered a CT scan of my head that came back normal.

So then they sent me to Shriner's Hospital for Children. If you've ever been to such a place, I, with my 35 degree curve looked completely healthy and they honestly didn't look twice at me because of the amount of extreme medical cases they see everyday. Everytime I'd follow up with Shriner's, it seemed my curve continually worsened, at one point I believe I was told I was at 45. Mind you, they would tell me each time I went that I would not worsen. After receiving no treatment, they decided to boot me out of their network at the age of 18, rightfully.

So as a young adult I start experiencing worse and worse back pain, unexplained neck pain, etc. Finally it was discovered that my neck is backwards. I've heard it called 'cervical lordosis', and 'whiplash neck'. But everyone doubted that it was caused by the curvature in my spine. Unhappy with the answers that I would recieve from normal primary care physicians, I always argued with them. I always had this horrible attitude that they didn't really know, and looking back, honestly they didn't.

So as of late, I went to my HMO's designated network, saw a specialist at Mercy Medical at the Orthopedic Dept, and the doctor just honestly didn't care to help me. He wrote on his notes that I am "about 38 degrees from T5-T12, right thoracic, with a lesser lumbar compensatory curve".

So most recently I was referred to UC Davis, where I surprisingly saw a doctor that I had previously seen at Shriner's as a kid. Being 22 years of age, the doctors want to make sure I understand the risks of the surgery, so the first meeting was just to scare me I believe. The doctor sent me for an MRI of my whole body, and asked me to come back after. Of course, I did, and everything is fine. So now I had to find a way to convince the doctor to give me the surgery.

So I tell him, you know, honestly I can tell you all the medical reasons that I have as to why I want the surgery, but you'll counter them all. I'm sick of playing games, this is my life, my body, that I'm not comfortable in. If no other reason is valid, then argue the fact that I don't feel normal, happy, beautiful and I don't want to feel this way my entire life.

After a long consulation, I now have a Surgery Date scheduled for February 3, 2014.

Now the reality of it all settles in, and to be honest I am scared to death. I hate needles, blood, etc. I know that there are small children who have done it and I know I can and will, but I feel so, well, I don't know how to feel.

Please give me some general tips, support, etc?

Everyone in my life that I talk to tells me to worry about it when it's sooner, but I can't seem to do that.

Thank you all for being my inspiration for writing this, by the way. Your stories have touched me and helped me, but now I feel I need the individualized support.

-jamieelizabeth-
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  #2  
Old 13th December 2013, 09:21 AM
twistedme twistedme is offline
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Join Date: Aug 2013
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

Hi Jamie and welcome to SSO,

I'm sorry to know you had to go through such a rough time for so many years, but hopefully it's all gonna fall into place now. I know how it feels to want the surgery this bad and then freak out when the time comes. I myself had to wait for 7 years before they decided I was ready and in need of surgery. I'm not really aware of cervical lordosis, but someone from this forum will come along and explain.

All I can tell you is getting into this track is like putting a lot of things in your life aside for a while. The pain is bad and if your physically able to do everything now, post surgery will get your emotions high. Small individual tasks like brushing or bathing will seem challenging and crazy. But it's all a matter of time and before you know it, you'll be through it all.

As for the surgery itself, yes, it's crazy and I literally felt like I went through hell the first 3-4 days, but I promise the rest goes fine. Your medications keeps your pain controlled and everyday gets better. Knowing what your getting into and knowing that things will get better soon helps you recover way better!! It helped me too!

Stay strong and stay positive! ♥
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I'm 23 years old female.
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  #3  
Old 13th December 2013, 04:56 PM
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christinab20 christinab20 is offline
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Join Date: Nov 2013
Location: Tennessee
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

Hello Jamie! Welcome to the forums!

Know that you are not alone in this! Some doctors can be butts and not know what it feels like to go through what you are going through. This is a big surgery and your body, don't be afraid to get a 2nd, 3rd, or 4th opinion if you want to, to feel more comfortable. I know it might be scary, but do as much research as you can about this surgery, look on YouTube for patients who had the surgery, it's touching and inspiring. The more you know, the more you will be prepared for this surgery and recovery will go a lot easier. I hope you keep us updated on your progress throughout this journey, I haven't had my surgery yet, mine will most likely fall on May 2014, but I am curious to know if the correction takes away your headaches, because I have been having constant headaches for a couple years now. So I hope you keep us updated! Most of these members can tell you how much medicine has evolved and it's a lot safer! Best wishes to you Jamie!
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Old 13th December 2013, 08:14 PM
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jamieelizabeth jamieelizabeth is offline
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Location: California
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

Thank you twistedme, It's comforting to know that I'm not the only one who had to wait for the surgery, and then freak when it's actually offered. I appreciate all of your advice.

christinab, thank you for the advice to look into as much as possible, I always felt like a weirdo for doing so much research about it all. I will definitely be posting my progress on here, as I feel that you guys on here are the biggest support I will receive. Have you had an xray of your neck christina? For years I've had doctors tell me that my neck&back pains aren't related until I saw an actual surgeon,and he affirmed that they are linked, so maybe like me, you have a 'wrong' neck? haha

I take a small muscle relaxer at night because my neck doesn't sit right with my pillows, so my muscles aren't all tense the next morning. It feels like I didn't a million sit-ups the wrong way and strained my neck, leading to the headaches. Let me know if you want more info on this, if it sounds familiar?

ALSO
I would like to ask, my surgeon was in a rush to get onto the next patient or whatever, so we didn't go over which procedure he is going to do, like, he didn't give me a gameplan. Like, most people on here are fused at a certain vertebrae, but he didn't mention anything like that. Is that normal? Will I learn that kinda stuff on my pre-op appointment? And are there different rods/techniques?
Will someone explain the procedure? They don't cut my spine apart, because that would paralyze me.. so they just like, push it straight?

I'm also very worried about the medicine making me puke. I don't know why this bugs me so much, but I feel that the medicine will obviously make me feel woozy and I'll need to puke which will hurt me as I move around? Or will I sleep through
it?


I appreciate you guys so very much.
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  #5  
Old 13th December 2013, 09:55 PM
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BeckyH BeckyH is offline
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Location: sunny Sussex by the sea
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

hi jamie a lot of people find it useful to gather up all of their questions and write them down prior to an appointment, so that they don't forget anything when they're in that often-intimidating atmosphere. it can also be really helpful to take someone else with you (these days, many doctors will also let you record the conversation you have on your phone - just make sure you ask their permission first) so that they too can listen and help you out afterwards.

surgeons will generally have a rough idea of which levels they will aim to fuse, but there can be unforseen circumstances when they open you up and things may change slightly. in terms of technique, there's really just the one (keyhole surgeries have been tried and are still being adapted - these aren't widely used at all at the moment as they're still very much in development): you'll be opened up, the surgeons will manipulate your spine straight (carefully, as you pointed out!) and will use bone graft/artificial bone to pack the spaces between your vertebrae. They'll attach a combination of hooks, screws and rods to your spine (which will be contoured to the shape of your spine - the rods aren't 100% straight, contrary to popular belief, because the spine does need to curve in a certain way) and then put you back together! The instrumentation is only technically there whilst the fusion takes hold - once the bone graft has solidified, the instrumentation becomes redundant (after about 6 months to 1 year).

many people are concerned about feeling sick - narcotics can do this to you, so ask what kind of pain control will be available to you (some hospitals prefer to use epidurals, which have the benefit of being a nerve block rather than entering your bloodstream, so don't make you nauseous) and how this will be managed. i had a conversation with the pharmacist at my hospital when i was admitted, and she was happy to supply me with anti-emetics (drugs which stop you feeling sick) alongside my painkillers, and i was able to take a lot of morphine very happily!

i hope this helps - don't be afraid to ask your surgeon questions, and don't let them rush you next time. it's important that you know everything you want to know and that you're comfortable. because this surgery is second nature to these guys, they often don't explain fully unless pushed (plus some people don't want to know what's going on!).
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Diagnosed in March 2001 by family GP after my mum noticed an asymmetry in my spine. Referred to a consultant at the RNOH, Stanmore and started attending consultations for x-rays twice a year. Prescribed a TLSO brace to be worn 16 hours per day. Began with double major curves at approx 48 degrees. Offered surgery in 2003 aged 16 and declined to continue with school. Requested surgery in 2005 instead. Had T11-L3 fused on 16th July 2005 and haven't looked back! Released for all activities in March 2006, having been driving and riding horses with consultant's permission since 7 weeks post op.
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Old 14th December 2013, 06:52 AM
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jamieelizabeth jamieelizabeth is offline
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

Becky- Thank you for explaining to me that once the doctors open me up that things may be different, and that they will have a generalized game plan until they actually get in there. That really alleviated some of the stress that I've had.

I wonder about the bone graft thing, would they take the bone graft from me at the time of surgery while i'm asleep or would that be a separate appointment, or is it more common to use cadaver bones or fake materials?

Also, Becky, you said "The instrumentation is only technically there whilst the fusion takes hold - once the bone graft has solidified, the instrumentation becomes redundant (after about 6 months to 1 year)".
To my understanding, they don't take the instrumentation out later, do they? I have been set upon the idea that I will be, as you say, 'bionic' forever.

I was very grateful to have your explanation of anti-emetics, because I had taken a quarter of a pill form of morphine once, and I was so incredibly sick.

I will definitely be making a list for my surgeons, by the way =)
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Old 14th December 2013, 10:03 PM
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GillyG GillyG is offline
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

Hi Jamie, I'm glad you decided to post after all these years!

The bone graft material tends to depend on the preferred method of the surgeon. There is usually quite a bit available from the procedure itself, especially if they are also doing a costoplasty, where part of the ribs are removed to reduce any rib hump you might have. If further graft material is required then it is sometimes harvested from the Iliad crest, although this method isn't quite so common now, or a synthetic bone substitute may be used.

You are quite right in thinking that the metalwork is usually left in place for life. Not because it is needed once the spine is fully fused, but simply because it isn't necessary to go through further surgery to remove it, unless the patient happens to be having problems with it of course
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  #8  
Old 15th December 2013, 05:53 AM
twistedme twistedme is offline
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

I think the bone graft for me was taken from the bone bank. :$
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I'm 23 years old female.
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On the road to recovery .
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  #9  
Old 20th December 2013, 09:24 PM
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JayMoe JayMoe is offline
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

I very nearly got you mixed up with someone else i think! (just read things without posting as ive been very busy) But its good to hear that you finally managed to get surgery and i hope that it all goes well for you.

But with the needles dont worry about it there are many people out there in the same position as you but the doctors will have different ways of using needles without making you all panicky.

So i hope you continue to find the forums useful!

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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  #10  
Old 20th December 2013, 10:55 PM
rob0225 rob0225 is offline
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

Doctors can certainly be very frustrating. I honestly don't understand the resistance to surgery. Especially in today's modern times and techniques.

I really liked the statement you gave the doctor to argue against. I wish some of these doctors could go through what we go through so they could better understand the pain and mental aspects associated with a crooked spine.
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  #11  
Old 25th December 2013, 09:41 PM
jennywren jennywren is offline
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

Happy Christmas Jamie. Sorry to hear that the doctors gave you such a bad time. It is a big thing to go through but it really will be worth it. I had surgery 23 yrs ago at age of 36, when my son was 3 and it is still the best thing I ever did for my health and quality of life. I teach the violin and have continued to do so since the op. I know I would not have been able to as I would be bent over by now.
I was diagnosed at 14 and they gave me some physio but as I didn't have much pain I wasn't good at regularly doing exercises. One day about age 20 I pulled myself up onto a wall and felt a nasty pain. The next morning I couldn't move without pain, so somehow I got taken to an osteopath who crunched a few bones and it improved almost immediately. Went to several chiropractors and then a lovely Private Physio who recommended seeing a consultant at Kings in London, my husband couldn't believe how wonky I was and unfortunately I have not got those X-rays. Long and short of it was I had to wait 3 years before surgery as no sooner had I seen the Consultant than I got pregnant, so it was on hold for a while.
On the day of the op at Royal National Orthopaedic in Stanmore I was wearing flip flops and slipped going to the shower, I pulled a muscle in my neck!!
I woke in ICU but had voltarol and very good care. My parents came to live at our house and drove an hour to visit nearly every day with our little son. That was hard seeing them all go home. I had two ops, one on the side and one on the mid back with Harrington rods and had a bone graft from a rib plus 4 discs removed. In hospital for 3 weeks and on my back for 2. Getting upright was scary and trying to walk for the first time really tiring.
I wore a removal plastic jacket which I could take off at night and for bathing!! After 6 weeks at home I was feeling nearly normal and able to drive [wearing the jacket].
Sorry to write such a lot -I got carried away. I did write a diary and had plenty of support from home and Physios.
Do hope you go through with it - I never have regretted it for a minute.
Take care. Jennyxx
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Old 29th December 2013, 03:50 AM
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KaraNicole1992 KaraNicole1992 is offline
Kara
 
Join Date: Oct 2010
Location: Ukiah California
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Default Re: Well, here is my story. Please read, I'm a newbie. =)

Hello Jamie welcome I'm kara I'm also from California. I was a shriners patient as well from birth to 17 years of age. I'm currently under the care of dr Munish Gupta who just fantastic at what he did for me
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