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  #61  
Old 11th May 2014, 09:16 PM
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tonibunny tonibunny is offline
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Default Re: The all official 'Good luck JayMoe' thread!

Brilliant Jay, well done! Hope you have a comfy night 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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  #62  
Old 12th May 2014, 01:52 PM
lozzym-may lozzym-may is offline
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Default Re: The all official 'Good luck JayMoe' thread!

Glad to hear you got through surgery ok. Sounds like you're getting on really well - great news that you've been standing up already! Hope you continue well with your recovery. Keep those spirits up
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  #63  
Old 14th May 2014, 09:26 PM
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Default Re: The all official 'Good luck JayMoe' thread!

Feel good today, well now haha as I know have an air mattress which feels amazing now Feeling perkier and I'm even chattier as well walked to the window which is a bed down from when I am. But it was difficult ad I was a bit uneasy on my feet bit had the physios there to support me
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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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  #64  
Old 14th May 2014, 09:53 PM
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Default Re: The all official 'Good luck JayMoe' thread!

Glad to hear everything went smoothly and that you are bouncing back from surgery
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Stella
Sep 2012 (aged 15.5): Curves measured at 33T and 23L
Mar 2013 (aged 16.0): Curves measured at 35T and 23L
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  #65  
Old 15th May 2014, 05:00 AM
Rod Stewart Rod Stewart is offline
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Default Re: The all official 'Good luck JayMoe' thread!

Very nice....

Pretty soon Jay, you will get to take your 1st shower. That will make you feel 10X better....

One day at a time.....

Ed
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  #66  
Old 15th May 2014, 10:20 AM
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Default Re: The all official 'Good luck JayMoe' thread!

Yeah can't wait for that day ed, as this is the beginning of the 3rd week of it not being washed. Might dry shampoo it at some point. Anyone know how it works?
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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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  #67  
Old 16th May 2014, 12:15 AM
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Default Re: The all official 'Good luck JayMoe' thread!

One thing I haven't told you lot yet is the marvelous job Mr Bernard did to me! 8ish hour op with *drum roll* about 50% correct, which to me I now have about a 35į curve! Shoulders look even not sure about my ribs but it is more than I could ever of wished for, the guy did good! But had to go from C5 as my bone at C6/7 wasnt good enough. Not sure where he went to though all I know is its about T12! So its some fusion I now have.

Really odd laying and even more standing an breathing but in die course I'll get used to it all

So one very happy chappy here :')
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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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  #68  
Old 16th May 2014, 03:12 AM
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tonibunny tonibunny is offline
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Default Re: The all official 'Good luck JayMoe' thread!

That is fantastic Jay! Do you know what your Pre-op curve was?

Hope you're only tonight
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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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  #69  
Old 16th May 2014, 09:57 AM
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Default Re: The all official 'Good luck JayMoe' thread!

Last time I knew it was 65 but I'm sure it progressed will as later to see and will update
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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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  #70  
Old 18th May 2014, 09:06 AM
Rod Stewart Rod Stewart is offline
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Default Re: The all official 'Good luck JayMoe' thread!

Jay

How are things? How are the walks going?

Ed
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  #71  
Old 18th May 2014, 11:32 AM
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Default Re: The all official 'Good luck JayMoe' thread!

Walking is fine, really exhausting though and puts a lot of strain on my right shoulder :/ but can walk in assisted now
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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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  #72  
Old 18th May 2014, 06:57 PM
Rod Stewart Rod Stewart is offline
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Default Re: The all official 'Good luck JayMoe' thread!

I remember walking with all the hot nurses......He he....It was almost like the Benny Hill show. You let out a little ooohhh, or an ahhhh, and they grab hold, you know? I miss that......I wouldnít mind trading places with you for a little bit. The Docs, they donít tell you this stuff.

I walked with a walker, but never really leaned into it, and basically just used it as a safety measure in case of a fall. Try not to be too dependent on it.

We need to walk like models, head up looking straight ahead, examples of perfect posture. Imagine balancing a book up there, donít let it fall off. Your on the runway now. Your also healing fast as heck right now and that takes a lot of energy.

Focus on the goal and remember that no matter how hard and difficult things might seem right now, things will get better slowly. You will heal and adapt one day at a time. Try to think beyond the pain.....looking way ahead.

Any ideas when you will be able to go home? Are all the hoses pulled? I hated the hoses....especially the NG tube.

Ed
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T70 L70 double trouble
A/P T2-Pelvis BMP Jan 2008
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  #73  
Old 19th May 2014, 01:33 AM
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JayMoe JayMoe is offline
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Default Re: The all official 'Good luck JayMoe' thread!

Yeah I know how you mean about the hot physios and nurses :P but yeah its going to take a while to get back to normal.

One major thing I'm concerned about though is pain relief... As they have started weaning me off of Tramadol already, at just over a week post op Down to 3 a day, plus more if I really need it. Will I be given completely new meds for when I go home? But saying that I can get by with out it, but wake with major pain. And also the took my diazapam away completely which I really need as my muscles are now on the move...

But seeing the pain team and my surgical team tomorrow so I guess I should bring these all up...
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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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  #74  
Old 19th May 2014, 03:04 AM
Rod Stewart Rod Stewart is offline
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Default Re: The all official 'Good luck JayMoe' thread!

Jay, I cant answer the question on changing medications. I do know that I was on Oxycodone after I came home, and it wasnít cutting the mustard. My surgeon switched me to Percoset, which is the same only with Tylenol. It helped a little. I never took tramadol, and never took diazepam or valium. Keep notes when taking medications after you get home. Write everything down, meds, food, BMís, walking......

The 1st couple of weeks are hard.....I think the main thing with me was that fact that I couldnít sleep. The foam topper helped quite a bit with that. Learning all the ergonomics and movements was also hard. You will perfect your log roll, I would incorporate a full leg swing, roll, and lift all in a single movement. My walker was right by the bed, and I would stand there upon rising for around 5 minutes before walking. I didnít want to fall, thatís against the rules...

Getting into bed was also a challenge if I was positioned too close to the headboard. I would lay down and my head would hit the wood. I would then have to log roll out at a different angle to recover and try again. It seemed that once the hips were set down that was it. There was no adjusting the body away from the headboard unless I rolled completely out of bed.

I took many hot soaks in a large tub. Very hot water actually works well with nerve pain. It was 15 seconds to pain relief. I would drink plenty of water doing this. I took 5 hot soaks per day for 3 months. I would measure the water with a spa thermometer, at 106 degreesF or 41.1C

You will need super soft pillows. I was mentioning down until I was informed about the cruelty that happens in the down industry, but these are the best pillows.

Medication management is tricky business.....and each of us is so different. I do know that opoid constipation is just about guaranteed while taking opoids, so managing your lower GI tract becomes a science. You donít want to have opoid constipation, it hurts like hell. Having a bottle of magnesium citrate around can prevent a trip to the hospital.

Walking and doing short walks many times during the day help considerably. There is no doubt that the leg muscles are connected to the back....you feel this, and its so sore moving things especially after scoliosis surgery. As time passes, things heal and toughen up.

How long can you sleep? Can you make it 3 hours?

Ed
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T70 L70 double trouble
A/P T2-Pelvis BMP Jan 2008
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  #75  
Old 19th May 2014, 10:10 AM
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JayMoe JayMoe is offline
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Default Re: The all official 'Good luck JayMoe' thread!

Okay thanks for that Ed pain management is pretty good now, as in not getting as sore and am not missing the Tramadol they took away much, just need a little extra after laying down sometimes. And I can now sleep all night through, some nights wake but not because of pain. Have managed to sus out the air mattress and is not soft enough so I don't wake in seveir pain (well forblast night it was the case, hopefully it'll be the same for the rest if my stay
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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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