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  #31  
Old 13th June 2014, 09:22 AM
indiekelly indiekelly is offline
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Default Re: Introduction- Surgery in 3 days

Hi Hayley,

I am new to the site. As a newbie facing surgery, I have been obessed with your post. It's awesome to hear you doing so well and thank you for being very informative throughout! All the best.

Kel
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  #32  
Old 14th June 2014, 03:08 AM
Rod Stewart Rod Stewart is offline
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Default Re: Introduction- Surgery in 3 days

Hayley,

I just wanted to say congratulations.....hope you are adapting ok....

Ed
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T70 L70 double trouble
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  #33  
Old 14th June 2014, 12:05 PM
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JayMoe JayMoe is offline
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Default Re: Introduction- Surgery in 3 days

Quote:
Originally Posted by HayleyM View Post
Thanks Jay! I've been trying to put in at least half an hour of pacing a day (not all at once) but i'm definitely on the mend. My parents are actually throwing a huge shindig for me on Saturday with lots of people who want to hear all about it- I strangely feel up to it.

It sound like you've really been through the ringer these past weeks! I was following your other surgery- so sorry you have to go through all this. At least you have a comeback for anyone who complains to you about anything, ever. "Let me tell you about the time I had two massive spine surgeries in a month!"

Hope your recovery continues to speed along. All the best.
Great stuff to hear thats the best way to get walking again, and then trying to increase it every time But that'll be fun, hope that it doesn't wear you out to much, I went out at 3 weeks and felt fine, but the next day felt pretty tired. But you go for it all, you will rock it im sure

But I sure have, and I feel it all as well, but in no time I'll be back to myself hopefully but yes this is something to elt people know about if they ever complain about things :P But thanks very much and i hope the same goes to 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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  #34  
Old 15th June 2014, 05:05 PM
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HayleyM HayleyM is offline
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Default Re: Introduction- Surgery in 3 days

Hey all- first of all thanks for the well-wishes! Things are still clicking along well- the days have consisted of relaxing (binge-watching Mad Men on Netflix, drinking tea and strolling around the house & garden)

I'm weaning myself off the pain meds- I'm a bit stiff at the end of the day, but beyond that I haven't really had any severe pains. The party yesterday went well - lasted 4 or 5 hours. It felt good to be social again, even if I needed 20-minute lie downs here and there. I was pretty weary after the fact though! Couldnt wait to sink into bed at the end of the day. Today I'm planning to take it easy & polish off what's left of my "recovery cake". Another nice thing about surgery is you kind of have to stuff your face afterwards! "I need a fifth slice. Doctor's orders."

I guess the fact that things are going so smoothly brings out the irrational fears in me- I'm a bit paranoid that the hardware will spontaneously fail, or that I'll sleep in the wrong position and mess up the fusion process somehow. I'm also a tad worried about the incision & possible wound infections, spreading, all that jazz. So far no evidence of these issues- I'm just a worrywort! I'm meeting with my GP tomorrow to inspect the incision, so hopefully that'll put my mind at ease.

I'm also having quite a few nightmares these days- It seems like every night I dream that I haven't been wheeled in yet & am freaking out. I guess it goes to show that the anticipation was more frightening than the surgery itself! I also dreamt that my mother died of a heart attack. Not sure if this is all due to vestigial stress.

Anyway, all in all, at just under 2 weeks post-op, all is well. My mom measured me the other day- I gained a little under 2 inches, which is pretty crazy. I jumped from 5'5 and 3/4" to 5'7 and 1/2", all while losing about 7 pounds- I look alarmingly skinny! Hence the need for extra cake.

@Little Ali
Thanks so much- I'd say it went pretty well!

@Rod_Stewart
Doing well Ed! Every day I'm feeling better & more mobile. You guys really put my mind at ease about the whole process. It's great to see how normal & active a life you can lead after fusion!

@indiekelly
It's a great feeling to be able to help all you pre-ops! That really was the worst part for me, the waiting and not knowing what to expect. Even at my most sore post- op (which really wasn't terrible in my case!) I was really relieved to have it over and done with.

@JayMoe
Oof yeah I was a bit tired after the party! It was nice to rejoin society briefly though. I'm going to take it super easy today. Do a bit of walking, eat some cake, watch some TV. You'll probably be having a similar day- your latest surgery was pretty close to mine!
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  #35  
Old 16th June 2014, 04:20 AM
Rod Stewart Rod Stewart is offline
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Default Re: Introduction- Surgery in 3 days

Worry and stress are counterproductive and harmful things......You shouldn’t worry about things that are not real....don’t anticipate bad things happening, anticipate positive things happening. Pretty soon things will get better, you know that.

I have always kept scoliosis and other perplexing problems in a small icon in my lower right hand corner knowing all along that the issues are there, while concentrating on my goals. Horse blinders are on and I’m staring straight ahead with a purpose but I want to know what’s on the sidelines. Knowledge is bliss.

If you are going to worry, worry about the cake. The sugar and the fat! Man-o-man!

Ed
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  #36  
Old 16th June 2014, 10:01 AM
indiekelly indiekelly is offline
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Default Re: Introduction- Surgery in 3 days

Thanks Hayley! I've suddenly got a right craving for cake....
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  #37  
Old 16th June 2014, 02:40 PM
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JayMoe JayMoe is offline
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Default Re: Introduction- Surgery in 3 days

Yep, you might feel it for the next day or two after it all, but taking it easy is a good plan, and also a good excuse for taking a few lay downs or even a nap and yep, i have many days like that, as mine was on the same week as yours.
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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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  #38  
Old 21st June 2014, 06:48 PM
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HayleyM HayleyM is offline
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Default Re: Introduction- Surgery in 3 days

Quote:
Originally Posted by Rod Stewart View Post
Worry and stress are counterproductive and harmful things......You shouldn’t worry about things that are not real....don’t anticipate bad things happening, anticipate positive things happening. Pretty soon things will get better, you know that.

I have always kept scoliosis and other perplexing problems in a small icon in my lower right hand corner knowing all along that the issues are there, while concentrating on my goals. Horse blinders are on and I’m staring straight ahead with a purpose but I want to know what’s on the sidelines. Knowledge is bliss.

If you are going to worry, worry about the cake. The sugar and the fat! Man-o-man!

Ed
You are wise, Ed! I need to learn to do that-it would be ironic to worry myself to death about my health. I feel like I have too much time alone with my thoughts these days- I'm the kind of person who likes to be doing a bunch of different things at once and now I'm just hanging out, being leisurely!

I haven't posted in a few days because not much has happened- I feel like I have an extremely boring recovery story Not that I'm complaining, mind you, plus I know boring is probably comforting to people who haven't gone under the knife yet.
My main goals right now are getting more comfortable in chairs (right now i need a lot of pillows for prolonged sitting) and weaning off the meds. I've been making pretty good progress on both- I'm down to half a Norco and a teaspoon of children's liquid tylenol every 6 or 7 hours. I'd feel pretty comfortable stopping the pills in the next few days. I'll wait a little longer before cutting the muscle relaxer just in case I get some withdrawal symptoms from ditching everything at once.

My family doctor said the incision is fine, though she only checked the very top of it. She said I'd know if it was infected.

Just thought I'd post a little update. In a nutshell, this has been a week of chilling out Hope everyone else is doing well & keeping back-conscious! I lunged at a fly the other day and had to scold myself, even though I didn't do any damage- that's the problem with feeling better, sometimes you forget to take it easy! I was joking with my dad that I should get the insurance company to fund a hot tub for continued spine health as I get older.

P.S. Is it socially acceptable to post your X-rays on Facebook, or would that be creepy? I'm a bit proud of my hardware- makes me feel tough!
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  #39  
Old 21st June 2014, 07:20 PM
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tonibunny tonibunny is offline
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Default Re: Introduction- Surgery in 3 days

I agree with Ed, he is indeed wise stress is bad for anyone so if you can manage to avoid worry then that can only do you good.

Loads of people have their x-rays on FB (myself included)! Not creepy at all. You've been through a big surgery, you should totally show them off if you want to or, you can post them here for us to admire at SSO - there's a helpful guide to posting pics at the top of the Common Room forum.
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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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  #40  
Old 22nd June 2014, 04:12 PM
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HayleyM HayleyM is offline
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Default Re: Introduction- Surgery in 3 days

Quote:
Originally Posted by tonibunny View Post
I agree with Ed, he is indeed wise stress is bad for anyone so if you can manage to avoid worry then that can only do you good.

Loads of people have their x-rays on FB (myself included)! Not creepy at all. You've been through a big surgery, you should totally show them off if you want to or, you can post them here for us to admire at SSO - there's a helpful guide to posting pics at the top of the Common Room forum.
Oh I'll definitely share them with you guys! I should be seeing them on the 3rd of July, so I'll try to get copies. The only reason I ask about Facebook is I know people can get a bit weird about medical photos/animal abuse pics. I always find people's scoliosis X-rays pretty awesome though.
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  #41  
Old 22nd June 2014, 04:53 PM
Rod Stewart Rod Stewart is offline
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Default Re: Introduction- Surgery in 3 days

Aw-shucks.....Most of my wisdom didn’t come from being a Rhodes scholar, it came from watching Hee-Haw all those years.....
http://www.youtube.com/watch?v=eMv4fle6ZVo

Amazing how Archie Campbell would take the good and the bad and switch each scenario the way he wanted. It’s a trait that is useful, a sort of short dwell on the bad, instantly flipped to the good, always ending on a positive note. If you can do this, you will stay a happy person.

Remember to get permission from your surgeon before falling out of the airplane!

Ed
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A/P T2-Pelvis BMP Jan 2008
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  #42  
Old 22nd June 2014, 05:45 PM
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HayleyM HayleyM is offline
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Default Re: Introduction- Surgery in 3 days

Quote:
Originally Posted by Rod Stewart View Post
Aw-shucks.....Most of my wisdom didn’t come from being a Rhodes scholar, it came from watching Hee-Haw all those years.....
http://www.youtube.com/watch?v=eMv4fle6ZVo

Amazing how Archie Campbell would take the good and the bad and switch each scenario the way he wanted. It’s a trait that is useful, a sort of short dwell on the bad, instantly flipped to the good, always ending on a positive note. If you can do this, you will stay a happy person.

Remember to get permission from your surgeon before falling out of the airplane!

Ed
Haha- I've never seen Hee Haw. May have to check it out if only for this guy.

Alas, I think I'm restricted from skydiving and bungee jumping for life- my dad is delighted…Not that I'd have the guts to do either anyway!
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  #43  
Old 23rd June 2014, 09:27 PM
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GloomCookie GloomCookie is offline
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Default Re: Introduction- Surgery in 3 days

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Originally Posted by HayleyM View Post
Haha- I've never seen Hee Haw. May have to check it out if only for this guy.

Alas, I think I'm restricted from skydiving and bungee jumping for life- my dad is delighted…Not that I'd have the guts to do either anyway!
Just saying... Not all surgeons impost those bans. Just sayin'



Seriously, those things and trampolining are terrible for anyone's spine but I had those three things given to me as Do Nots by Mr Harrison then rescinded by Mr Gibson, so if you ever really, really, really need to skydive just double check if your man was being extra cautious first!

Really pleased to see such a fabulous recovery
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  #44  
Old 24th June 2014, 03:23 AM
Rod Stewart Rod Stewart is offline
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Default Re: Introduction- Surgery in 3 days

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Originally Posted by HayleyM View Post
Not that I'd have the guts to do either anyway!
You talking about something like this?

http://www.youtube.com/watch?v=8ige-atxPKI

We already jumped off that cliff you know, that was when we walked in.

Ed
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55 yr old male
T70 L70 double trouble
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  #45  
Old 24th June 2014, 04:00 PM
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HayleyM HayleyM is offline
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Default Re: Introduction- Surgery in 3 days

Quote:
Originally Posted by GloomCookie View Post
Just saying... Not all surgeons impost those bans. Just sayin'



Seriously, those things and trampolining are terrible for anyone's spine but I had those three things given to me as Do Nots by Mr Harrison then rescinded by Mr Gibson, so if you ever really, really, really need to skydive just double check if your man was being extra cautious first!

Really pleased to see such a fabulous recovery
I've been wary of trampolines for awhile- I don't see myself trying one for the next few years at least! It's amazing how as a kid you can bounce around, do backflips, cartwheels without a care in the world, then somewhere along the way something changes and you start thinking "I'll break my neck!!!!"

Thanks! And thanks for the wonderful support along the way- this site has been such a comfort.

Quote:
You talking about something like this?

http://www.youtube.com/watch?v=8ige-atxPKI

We already jumped off that cliff you know, that was when we walked in.

Ed
Ooh Jeb Corliss- he was on The Colbert Report a few years back. Honestly flying around in that wingsuit looks like the most fun a person could have. I'd love to if given the opportunity! Something tells me I'd chicken out big time though. My legs would freeze up on the side of the cliff and everyone would laugh
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