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Old 10th April 2014, 03:10 PM
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JayMoe JayMoe is offline
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Default 3 Week count down!

So in 3 weeks, if its not cancelled I'll be having my surgery as you know. I'm quite anxious about it all. More than i have been before, and even when i was about a week away from having it! But i know its usual to be as its a massive thing to be having done.

What i am needing to know really is what to take to hospital and also what kind of PJs i should get, a button up one is the obvious choice to go with, but what kind, the flanel type cotton or normal cotton like a T-Shirt? And is there anything else I'd need post op?
Thanks,
Jay
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Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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Old 10th April 2014, 05:29 PM
KMaxwell KMaxwell is offline
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Default Re: 3 Week count down!

Hi Jay,

I hear ya about being anxious - it really hit me the other day when I realized surgery is less than 2 weeks away now and I almost had a panic attack. :P I'm getting so anxious that it's keeping me from sleeping. I realize that's a bad thing so I've been trying to meditate and I have a CD I listen to nightly that's supposed to prepare you mentally for surgery (can't say if it's working yet but it does help me get to sleep...) It's going to be okay though, you have even more reasons for having this surgery done than I do and you're going to get through it just fine.

I've seen a couple threads here online about what to take with you to the hospital - the main things I noted were some type of chapstick or vaseline because apparently your lips get really dry. Someone else mentioned taking Gatorade as a better choice than just the water and juice the hospital gives. I saved one of the lists I found - here's a copy of that:

Hospital Packing List

• PJs/nighties (nighties are a lot easier because of the catheter tube etc, but you can always just wear hospital gowns! Silky/Satin PJs make moving about in the bed a whole lot easier as well ) Pants!
• An outfit to come home in (trackies to fit over/under the brace if you're wearing one and a small tshirt to go under it as well as a shirt or fleece to wear over it
• Shower gel
• Facewipes
• Baby wipes/body wipes
• Lip balm (Vaseline is best as you can put it on your nose as well if it gets dry from the oxygen mask)
• Moisturiser
• Body lotion (I used Lush Dream Cream, very moisturising and good for the skin, and in a big tub as you’ll
• use a lot of it!)
• Toothbrush/toothpaste
• Brushaways toothwipes or similar
• Sanitary towels (general anaesthetic apparently nearly always brings on your period, lucky us eh?)
• Dry shampoo
• Hair brush
• Scrunchies/hair clips
• Eye drops/Optrex (for some reason the oxygen made my eyes all dry, most odd)
• Rescue remedy
• Arnica (if you take it for a week before and right up to surgery it reduces bleeding and bruising and helps
• you heal faster)
• Straws
• Plastic cups
• Fruit squash
• Cartons of juice
• Ipod/walkman
• Books/magazines/portable DVD player
• Mobile phone
• USB key to take xrays home on when you thieve them from your surgeon
• Some money for newspaper & snack trolley in the ward
• Paperwork (hospital letters)


Hang in there, Jay - we'll be post-op before you know it.
__________________
- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
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  #3  
Old 10th April 2014, 05:49 PM
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GillyG GillyG is offline
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Default Re: 3 Week count down!

Ooo Jay, not long now! Have you checked out the hospital thread? I know it might be a bit female-orientated, but there should still be some tips in here for you

http://www.scoliosis-support.org/showthread.php?t=6342
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  #4  
Old 10th April 2014, 08:26 PM
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JayMoe JayMoe is offline
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Default Re: 3 Week count down!

Quote:
Originally Posted by KMaxwell View Post
Hi Jay,

I hear ya about being anxious - it really hit me the other day when I realized surgery is less than 2 weeks away now and I almost had a panic attack. :P I'm getting so anxious that it's keeping me from sleeping. I realize that's a bad thing so I've been trying to meditate and I have a CD I listen to nightly that's supposed to prepare you mentally for surgery (can't say if it's working yet but it does help me get to sleep...) It's going to be okay though, you have even more reasons for having this surgery done than I do and you're going to get through it just fine.

I've seen a couple threads here online about what to take with you to the hospital - the main things I noted were some type of chapstick or vaseline because apparently your lips get really dry. Someone else mentioned taking Gatorade as a better choice than just the water and juice the hospital gives. I saved one of the lists I found - here's a copy of that:

Hospital Packing List

• PJs/nighties (nighties are a lot easier because of the catheter tube etc, but you can always just wear hospital gowns! Silky/Satin PJs make moving about in the bed a whole lot easier as well ) Pants!
• An outfit to come home in (trackies to fit over/under the brace if you're wearing one and a small tshirt to go under it as well as a shirt or fleece to wear over it
• Shower gel
• Facewipes
• Baby wipes/body wipes
• Lip balm (Vaseline is best as you can put it on your nose as well if it gets dry from the oxygen mask)
• Moisturiser
• Body lotion (I used Lush Dream Cream, very moisturising and good for the skin, and in a big tub as you’ll
• use a lot of it!)
• Toothbrush/toothpaste
• Brushaways toothwipes or similar
• Sanitary towels (general anaesthetic apparently nearly always brings on your period, lucky us eh?)
• Dry shampoo
• Hair brush
• Scrunchies/hair clips
• Eye drops/Optrex (for some reason the oxygen made my eyes all dry, most odd)
• Rescue remedy
• Arnica (if you take it for a week before and right up to surgery it reduces bleeding and bruising and helps
• you heal faster)
• Straws
• Plastic cups
• Fruit squash
• Cartons of juice
• Ipod/walkman
• Books/magazines/portable DVD player
• Mobile phone
• USB key to take xrays home on when you thieve them from your surgeon
• Some money for newspaper & snack trolley in the ward
• Paperwork (hospital letters)


Hang in there, Jay - we'll be post-op before you know it.
Thanks for all the info and support Kay, it really does help to try and get things thought out etc it hit me to, but the good thing is, i dont suffer from panic attacks, but i do get down at times like this. I have also seen my anxiety change my sleeping in a way, as i can't sleep till late so i just go into 'zen' mode and listen to music and read at night till im feeling tired and then take a while to get off to sleep so its normally about 2.30-3 am until im asleep and so as a result i cant get up at 9.45 so i sleep till 11 am and so as a knock on i cant sleep till late XD. But the good thing is its getting me to read more again, as i rarely do right now. But whats making it worse i think is that the school I help out at is on the Easter Holidays for 3 weeks (Private school perks.. Yay, if you dont have surgery the week after they go back...) and so i dont have anything to go to and distract myself from everything.

But i should really get some then as mine do get dry easily if im not hydrated properly. But I'm not a huge drinker of Lucozade (UK Gatorade) so that wont be much point, mainly drink either water or coffee :P (good thing theres several cafes in the hospital and also a Cafe Nero nearby as well :P)

Thanks for the list of things has given me a good idea on what i need to take. As i only had 6 things haha, pjs, clothes for going home, computer/ phone, ipod and something to read XD, but I'll need more books as at the rate im reading right now I'll of finished what i have haha. But I'll probably get my parents to take my computer away every night so it doesnt go missing... But I'll probably keep my phone with me, so that i have something to or use to talk to people/ update here if im feeling up to doing so.

How long is the Catheter generally in for? As i could just get my parents to bring my stuff the day it comes out, just so i dont have stuff laying around for ages. Everything is a tad confusing, but im sure I'll get my head around it all at some point.

But the thing I'm most worried about is pain when I'm at home and doing things fine and not screwing things up, when i dont have the assistance of those who know what they are doing.

But yeah, come 3 weeks time, and we'll both be on the path to recovery
__________________
Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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  #5  
Old 10th April 2014, 08:28 PM
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JayMoe JayMoe is offline
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Default Re: 3 Week count down!

Quote:
Originally Posted by GillyG View Post
Ooo Jay, not long now! Have you checked out the hospital thread? I know it might be a bit female-orientated, but there should still be some tips in here for you

http://www.scoliosis-support.org/showthread.php?t=6342
I haven't as i forgot about them, but thanks anyways, I'll just cut out the female things from it haha but the one Kay sent me is very useful, but will also have a look through the one you sent me and see if i need to add anything to the list.
__________________
Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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Old 10th April 2014, 08:44 PM
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tonibunny tonibunny is offline
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Default Re: 3 Week count down!

Not long now Jay! Try to focus on how fab your lovely straight new back will be - it helps

We're all here with you every step of the way!
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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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Old 11th April 2014, 12:17 AM
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JayMoe JayMoe is offline
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Default Re: 3 Week count down!

Quote:
Originally Posted by tonibunny View Post
Not long now Jay! Try to focus on how fab your lovely straight new back will be - it helps

We're all here with you every step of the way!
Yep, just to think that in 3 weeks time I'll be waking up probably with a lovely straight spine. I'll try and focus on the positives about it, but isn't easy ad I look to the bad as well :S

Thanks, this place has been an amazing place to cone to with my worries and questions over the past year and a half, really can't see what I'd do with out it!
__________________
Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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  #8  
Old 11th April 2014, 01:35 AM
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KaraNicole1992 KaraNicole1992 is offline
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Default Re: 3 Week count down!

Good luck
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22 years old
Boston Brace 2005-2006 and surgery 2010"
Foot Surgery 2014
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  #9  
Old 11th April 2014, 07:27 PM
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JayMoe JayMoe is offline
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Default Re: 3 Week count down!

Quote:
Originally Posted by KaraNicole1992 View Post
Good luck
Thanks Kara
__________________
Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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Old 12th April 2014, 03:15 PM
Jonny Jonny is offline
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Default Re: 3 Week count down!

The food isn't horrific but I imagine you'll want some snacks from outside - I recommend a cheeky Tooting biryani or pizza from the high street! Bring some headphones so you have the choice of your own music or the radio from the bedside entertainment units.

You'll probably also get to spend the first night in the Holdsworth overnight intensive recovery unit/HDU, which is run by the general intensive care unit but is tiny, with three beds, up on the 5th floor so you'll get a nice view with plenty of daylight, lots of peace and quiet and the nurses' undivided attention.

The catheter will be out as soon as you're ready to use a bottle or get up and use the loo. In the meantime, it's a nice excuse to not have to get up...
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Old 12th April 2014, 04:16 PM
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JayMoe JayMoe is offline
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Default Re: 3 Week count down!

Quote:
Originally Posted by Jonny View Post
The food isn't horrific but I imagine you'll want some snacks from outside - I recommend a cheeky Tooting biryani or pizza from the high street! Bring some headphones so you have the choice of your own music or the radio from the bedside entertainment units.

You'll probably also get to spend the first night in the Holdsworth overnight intensive recovery unit/HDU, which is run by the general intensive care unit but is tiny, with three beds, up on the 5th floor so you'll get a nice view with plenty of daylight, lots of peace and quiet and the nurses' undivided attention.

The catheter will be out as soon as you're ready to use a bottle or get up and use the loo. In the meantime, it's a nice excuse to not have to get up...
The one curry place that springs to mind is the Sree Krishna, which is really nice Yeah i was planning on doing so as i have music on nearly all day haha and so I'll have my ipod and also my phone with spotify :P but i wasnt aware of there being things there i could listen too.

Thats the place that you took me up to when we met up for a coffee way back in August? But no wonder there has been cancelations then if its that small, as i forgot it was tiny! (if it is the place im thinking of) Ah okay, i thought it was a set day that they made you have it out by. Do you have an idea of what kind of time scale that people normally have it out by. Would say by day 3/4 be really optamistic to look at it coming out by? But yeah, im one for liking to stay in bed, and having an actual reason to is brill. haha :P

Thanks for the info anyway Jonny
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Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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Old 14th April 2014, 05:08 PM
lozzym-may lozzym-may is offline
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Default Re: 3 Week count down!

Wow, that's so close now Jay. Good luck! You're going to be just fine and we all look forward to hearing from you when you're out the other side

The things I found most useful when I was in was lip balm (the dry lips are no exaggeration!), a squeezy drinks bottle (ids recommended it to me rather than straws coz you can grab it with one hand with no spills etc.) and a dressing gown (because backless gowns = no modesty!). I had people bring in things as and when I needed them, like going home clothes, coz I didn't want to clutter up the bedside. (In the end I didn't use half of the stuff I took with me as I slept most of the time!!)

I had my catheter in for ages because i was a 2 stager and because I was too weak to get out of bed for a while after the 2nd op. It came out the day I got discharged but it would normally be a day or two before this. It really depends how you're doing I think. Once you are able to easily get to the toilet yourself, basically.
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Old 15th April 2014, 12:13 AM
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JayMoe JayMoe is offline
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Default Re: 3 Week count down!

Quote:
Originally Posted by lozzym-may View Post
Wow, that's so close now Jay. Good luck! You're going to be just fine and we all look forward to hearing from you when you're out the other side

The things I found most useful when I was in was lip balm (the dry lips are no exaggeration!), a squeezy drinks bottle (ids recommended it to me rather than straws coz you can grab it with one hand with no spills etc.) and a dressing gown (because backless gowns = no modesty!). I had people bring in things as and when I needed them, like going home clothes, coz I didn't want to clutter up the bedside. (In the end I didn't use half of the stuff I took with me as I slept most of the time!!)

I had my catheter in for ages because i was a 2 stager and because I was too weak to get out of bed for a while after the 2nd op. It came out the day I got discharged but it would normally be a day or two before this. It really depends how you're doing I think. Once you are able to easily get to the toilet yourself, basically.
Yeah, only 17 days to go now (very nearly 16 :P) Nervous, but excited at the same time. And glad im going away for the easter weekend as that'll help take my mind off of it all I'll probably give short updates, as I'll most likely only have my phone that can get onto the internet. My lips do tend to go dry so will pop that on my list to definately get i was deffo going to get a squezey bottle of some sort, as i cant be clumsy with drinks, without the aid of drugs of who knows what I'll be like with them. XD Okay, i only have a winter one though, and there wont be a point really getting a summer one as i rarely use them as i get dressed when i get up normally. But I'll probably be to out of it to care haha. Sounds like the thing to do then, and it'll mean im less likely to lose things that way as well.

I'm on the 1 stop train to straight spine land :P so i hope it wont be in long. But I'll just take each step as they come and try and not get to frustrated with not being able to do things i was able to 10 hours before the surgery took place.
__________________
Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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Old 15th April 2014, 11:44 AM
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GillyG GillyG is offline
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Default Re: 3 Week count down!

The hospital will usually provide you with a 'sippy cup' for drinking tea or coffee so you don't spill a hot drink down yourself when you're laid on your back! It's a bit weird, going back to being treated like a baby, but by that time you'll find you just don't care!
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Old 15th April 2014, 02:26 PM
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JayMoe JayMoe is offline
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Default Re: 3 Week count down!

Quote:
Originally Posted by GillyG View Post
The hospital will usually provide you with a 'sippy cup' for drinking tea or coffee so you don't spill a hot drink down yourself when you're laid on your back! It's a bit weird, going back to being treated like a baby, but by that time you'll find you just don't care!
Okay, i normally end up drinking coffee cold, as im busy doing stuff to remember about it. But it seems like it is a common trend with thing that happens post op, you just dont care how you look etc
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Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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