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  #16  
Old 1st June 2014, 08:22 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
There's another thread talking about pedicle screw system complications 20 years down the line- At this point my brain is too exhausted to entertain all the possibilities, I just want to be out of the medical system and move on with life for as long as possible whether I've doomed myself or not. I'm sure that's a common sentiment with surgical patients! I feel like I've aged 10 years in the past few months just worrying about what might happen.
All of us want to know the facts and stress over things we cant control. Its easy to say “turn off the stress”, but in reality its what we “need to do”. We go in with horse blinders looking straight ahead with an agenda, with our positive attitudes keeping our eyes on the prize. You always need to set realistic goals, take things one day at a time and try not to worry....Always look and think forward, never look back and think “I shouldn’t have done this”. We didn’t have a choice.....

After surgery, there will be some associated surgical pain, jabs and jolts, stiffness and burning. We take our meds and eventually heal....and all through this hard period we have depression and doubts. I thought that I would never be able to reach my feet ever again, that was wrong. Now, I put ski boots on fused to the pelvis, and yes this took major patience to figure out since I cant see down well....all in all, all those worries were uncalled for, and well.....here is my video. I’m in the red.

http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=plcp

Remember that we are adaptable....You can and will figure out what you want to do and you will do it.

Try not to worry about the “Stitzel negativity” factor on the pedicle screw discussion.....its apples and oranges compounded with fear related, greed oriented, Chiropractic sales hoopla. I don’t get excited about the new flavor of the month anymore. These alternative guys like to hit below the belt when marketing their latest concepts. Its like a record that keeps skipping....and for many years now. People that are beyond like myself have heard all this before.

Best wishes on your surgery.....post when you can.

Ed
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T70 L70 double trouble
A/P T2-Pelvis BMP Jan 2008
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  #17  
Old 1st June 2014, 12:28 PM
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JayMoe JayMoe is offline
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Default Re: Introduction- Surgery in 3 days

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Originally Posted by HayleyM View Post
I'm lucky I guess- my home shower has a ledge seat (never used it- now's my chance!)

I did see on the hospital tour that the rooms have showers in them. Apparently they want me up and walking by day 2- oof, this is going to be a rough week. Like you said though, the increase in lung capacity will be worth it. I see from your profile that you're fused to T12- does it feel radically different (not that you're allowed to move much so soon after, but just in general) to have an solid upper spine? It doesn't seem to me that the upper back moves much anyway, unless you lay back on a roller or really hunch.

It's starting to feel real again (Tuesday night I was panicking too). Not just the thought of pain, but the potential future complications of the screws, radiation, loss of mobility. Aaaaaah… The panic goes in and out.
That sounds great, one thing you might want to get is a none slip mat to go in there, as your balance won't be brilliant at first.

Okay that sounds great, we dont get that luxury here :P But yes, that's what they do to everyone, i cant remember when i was first up and out, but mine was all delayed due to not being fit and awake enough when they came around and so it wouldnt of been safe to get me walking. Don't worry though, this was all down to some of my medication and so when they took me off of them I was fine. And so managed to do really well after that. I am, and i do feel pretty different, being stiff pretty much all the way down my spine, as i can feel that i have loss of movement when i do certain things like spreading butter on toast etc. But in time and when my movement restrictions are taken off, i'll learn to adapt to how my back is now. But i think that is correct that hardly any of the Thoracic spine moves, as i think most of the movement you make is done in the Lumber spine.

It will all start to feel real, and all that you're feeling is natural, but you'll have a pain pump for a short amount of time, which you press when you need some 'instant' pain relief. And also you'll probably be on some IV pain meds too, and also your normal pain tablets. And a real plus is that, if thats not enough, you have extra pain meds, which you need to ask the nurses if you can have. So you have a cocktail of drugs at you disposal to make you feel at ease with the pain they are all valid things to worry about, but dont do that now, take it all one step at a time, and tackle them when they come around. We're all there to help if these things come about in the future, which hopefully they wont

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-
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  #18  
Old 2nd June 2014, 04:35 AM
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Default Re: Introduction- Surgery in 3 days

Well today was busy! Had to get a bunch of leftover work done, then drive all the way to the hospital and back for my blood type and cross. Tomorrow morning at 7:30 it begins! O.O

I'll try to post an update when I'm able.
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  #19  
Old 2nd June 2014, 07:36 AM
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Default Re: Introduction- Surgery in 3 days

Wishing you the very best of luck for an amazing outcome Hayley
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  #20  
Old 2nd June 2014, 08:55 AM
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tonibunny tonibunny is offline
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Default Re: Introduction- Surgery in 3 days

Good luck Hayley! we are all here to help keep you cheered up as you recover 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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  #21  
Old 2nd June 2014, 09:59 AM
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bluestone bluestone is offline
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Default Re: Introduction- Surgery in 3 days

Hi Haley,
I've just caught up with this thread and felt a bit bad about putting the Clayton Stizel thread on but believe me he really is full of *b******t! I posted to see if anyone else had heard of him. Ed is right its all a 'sales hoopla' He has no proof whatsoever-I asked him three times and he couldn't provide it so what does that say? You will come across negativity all the time with this surgery, but its the same with anything-positives and negatives.

I'm still having pain issues with some screws but would I do it all over again YES I would! I know without this surgery I would be much worse off, I was almost 45 when I had it and given the enourmity of my surgery and my age I think I've done pretty well

Stay nice and positive and you will do great-all the best.
It will be over before you know it!

Sarah xx
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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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  #22  
Old 3rd June 2014, 02:27 PM
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Default Re: Introduction- Surgery in 3 days

Bit late to the party here but thinking of you! Hoping everything goes smoothly and you're back here soon

Just to echo the others in case the future is still a concern, I might be only 6 years post op but I'd do it again in a heartbeat, changed my life.

All the positive vibes for you
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  #23  
Old 9th June 2014, 03:57 PM
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Default Re: Introduction- Surgery in 3 days

Hey guys! Guess I'm exactly 1 week post op today. Still feeling extremely lethargic, and as of yet have only been able to sleep comfortrably in 1 position on my left side, which I'm not sure is a good thing. I've been forcing myself up for meals and short walks, sitting. There are a few hours between pain med doses where all I can think is "DRUUUUUGS! Gimme!!!!"

The morning of was the worst- I was so scared, and the doctor actually gave me the option to opt out! He was saying, " you know some people get to this stage and decide not to go though with it, which is totally fine." Obviousy backing out at that point wasn't an option. Anyway, next thing I remember is my sister's voice saying everything turned out great, he didn't have to fuse any extra levels or do a thoracoplasty. I think they got the curve down to around 15 degrees. Next few days were a blur, and now here I am in bed on the road to recovery...speaking of bed.......zZZZzZzZzZZz....can't......... type.......for........now
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  #24  
Old 9th June 2014, 07:35 PM
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GillyG GillyG is offline
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Default Re: Introduction- Surgery in 3 days

So pleased to hear it went well Hayley Make sure you get plenty of rest and update us when you can (between drug-induced sleeps )
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  #25  
Old 11th June 2014, 01:47 AM
Mrs. Krier Mrs. Krier is online now
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Default Re: Introduction- Surgery in 3 days

Hayley,
I am a tad late reading this, so so glad to hear your positive and doing well!! My surgery is scheduled for July 29th, t4 to L5 and i was visiting with Baylor via phone and email however ended up staying in Kansas for mine. Take care, stay strong!!!!! And ANY advice would be GREAT!!! 😀
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  #26  
Old 11th June 2014, 05:07 PM
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Default Re: Introduction- Surgery in 3 days

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Originally Posted by Mrs. Krier View Post
Hayley,
I am a tad late reading this, so so glad to hear your positive and doing well!! My surgery is scheduled for July 29th, t4 to L5 and i was visiting with Baylor via phone and email however ended up staying in Kansas for mine. Take care, stay strong!!!!! And ANY advice would be GREAT!!! 😀
Hey Mrs. Krier! Thanks for the well-wishes I actually chose Baylor due to proximity as well as reputation- it's only about 30 minutes away-lucky me! I think being close by is a good consideration in case you need to go back for frequent visits.

I guess at (9 days? 10? It's hard to keep track) post op I'm feeling great, considering all that's been done! At my last posting I was a bit dull- eyed and lethargic, but over the past couple days I've been out strolling laps in the garden, watching a few hours of TV here and there. I'm not allowed to bend at the waist, so it's weird to drop a pencil and think "Darn it! How am I going to get that back?" ( They were selling grabbers at the hospital, I didn't bother though it would probably be useful.)

We're both in our 20s, so I'd anticipate our healing rates will be similar. I guess my advice as a layman would be to supplement your diet ahead of time with protein and calcium to give your body all the fuel it needs to regenerate bone & muscle. You won't have much of an appetite for a few days and logic dictates its probably good to build up your stores ahead of time (I drank 'Premier Protein' shakes for about 2 weeks prior, and I'm a fairly avid milk drinker. If you have a sweet tooth I have a recipe for black bean brownies, which are packed with protein and easy to wolf down.) I think it really helped me- the nurses were laughing during physio because I kept picking the walker right up to move it around obstacles and corners, which apparently was a feat of strength!

I also stretched quite a lot ahead of time- laying back over foam rollers and moving up and down. There's a website on thoracic mobility (can't remember which, but you can probably google it and find some exercises right away). Then maybe try stretching forward over the back of the sofa or so some other spine-elongating things. (Gently! I'm no doctor and wouldn't want you to get hurt!) I think keeping flexible and making sure as many of your vertebrae were movable/twistable makes it easier for the doc to push it a bit further.

Anyway, couldn't be happier with the results- almost 90 degrees down to 15 was better than I expected. I know you'll do fine, and I'll be crossing my fingers for you for amazing correction & speedy recovery on the 29th!
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  #27  
Old 11th June 2014, 06:21 PM
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JayMoe JayMoe is offline
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Default Re: Introduction- Surgery in 3 days

Great to hear all went well for you Hayley and what fantastic correction you got there! I still dont know mine, but i think ill see my surgeon in 2 weeks time so I'll ask then but your doing well for nearly 2 weeks post op as when i was at that stage i was only learning to walk once more still XD Keep healing up trooper your doing fantastically
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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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  #28  
Old 12th June 2014, 09:25 PM
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HayleyM HayleyM is offline
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Default Re: Introduction- Surgery in 3 days

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Originally Posted by JayMoe View Post
Great to hear all went well for you Hayley and what fantastic correction you got there! I still dont know mine, but i think ill see my surgeon in 2 weeks time so I'll ask then but your doing well for nearly 2 weeks post op as when i was at that stage i was only learning to walk once more still XD Keep healing up trooper your doing fantastically
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.
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  #29  
Old 13th June 2014, 12:44 AM
Mrs. Krier Mrs. Krier is online now
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Default Re: Introduction- Surgery in 3 days

Hayley,
Aw thanks for the positive words!!! Okay...grabber, check!! Ill find one, and i am lactose intolerant so soy protein shakes it is!!!! Lol!! I agree 100% with staying somwhere near home, my surgeons an hour and 30 min away but Plano was like 9 hours! Eeek!!!! Very best of wishes to you sister!!!!!!!!
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  #30  
Old 13th June 2014, 01:32 AM
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Little Ali Little Ali is offline
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Default Re: Introduction- Surgery in 3 days

Hi Hayley,

I just wanted to say hi and wish you all the best with your surgery 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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