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  #31  
Old 15th June 2014, 03:43 PM
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Default Re: More surgery Thursday!

Yeah, my curve was pretty high and long before, so thats why thats the case. But yay for being a rarity I pretty much found my 'fusion twin' on twitter, as they had the same ops as i have had and also to pretty much the same place, but to C4 instead, and they also have NF XD

My scar has changed within the last week or so, as it has now changed colour to being a purple colour, but its all closed and with no oozing, so im sure thats okay. But there is a slight 'dimple' in it that runs down in places, but that has gone down since it's all happen, so i'm sure it'll be the case with the rest.

will get others of my new ones when i get the strips taken off either tomorrow, or next monday, dependant on what the GP nurse decided to do.
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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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  #32  
Old 15th June 2014, 04:03 PM
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Default Re: More surgery Thursday!

Looking fab Jay! Did you gain a lot of height? I gained about 2 inches (lost 7 pounds, gained 2 inches- I look like a wraith!)
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  #33  
Old 15th June 2014, 04:29 PM
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Default Re: More surgery Thursday!

I did, yes, not sure how much though, but a small amount i also lost some weight, but again not sure how much, but i also looked like death shaken up due to it all and also because of the lack of sun light for nearly 3 weeks!
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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, 04:52 PM
Rod Stewart Rod Stewart is offline
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Default Re: More surgery Thursday!

I would still watch out on the darker colors even if there is no oozing......always best to have your doctor inspect these things when in doubt. Scars eventually turn a light color, mine are almost completely faded now....I walk around without a shirt and I’m not worried about it at all. You really have to look hard to see them.

Since this (infection poster) posted last week I have been reading about this topic. There are a few things to know about.

Necrosis
http://en.wikipedia.org/wiki/Necrosis

Infarction
http://en.wikipedia.org/wiki/Infarction

The methods that surgeons use when sewing us back up is important. There are some very informative sites on this subject.....If your interested, I will post. I just find it interesting to know exactly what happened in my surgeries......and others surgeries.

If only you guys knew what I went through battling scoliosis through the years....the stacked pain, would kill an elephant. Your skipping all of this....I had a lot of extremely painful periods before my surgeries.

Keep smiling

Ed
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  #35  
Old 15th June 2014, 06:02 PM
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Default Re: More surgery Thursday!

Okay, thanks ed, while this isnt the best photo ever, it shows what i mean about it getting to a purple colour... but as i said im seeing the nurse tomorrow and next week and so if there could be an issue, i'll bring it up with them when i see them. But i do remember some scars going this colour and not having issues with them, but with this, its a bit more vital to know if something is wrong, as an infection in my spine is something i dont want!
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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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  #36  
Old 15th June 2014, 06:36 PM
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Default Re: More surgery Thursday!

Wow, looking good Jay That purlpey colour is perfectly normal, mine went that colour and is now a barely visible silvery-white line
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  #37  
Old 15th June 2014, 08:40 PM
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Default Re: More surgery Thursday!

Okay, thanks Gilly good to now all is normal Bio Oil will be called for then :P but at least in the years to come it'll fade also
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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 16th June 2014, 03:16 AM
Rod Stewart Rod Stewart is offline
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Default Re: More surgery Thursday!

Jay, it looks good.....

It not often that posters post about problems that set off alarm bells, and it took about 4 posters to convey “If I were you, I would go to the emergency room, right away”. Staph infections are like wildfire and can be dangerous. Naturally, I get a little jumpy about these sorts of things.....Scar healing and integrity is important.

Also, one of our locals had multiple highly invasive debridement surgeries....which is in the heavy duty department if you know what I mean. This is a rare thing but better to be informed.

Ed
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  #39  
Old 16th June 2014, 07:40 AM
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Default Re: More surgery Thursday!

I've never actually used Bio Oil, mine just faded naturally
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  #40  
Old 16th June 2014, 02:04 PM
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Default Re: More surgery Thursday!

Okay thanks Ed for all the info but its something i kind of worry about, but as you say, if there is a worry about it the ER is the best place to go to just in case.

And okay Gilly, my parents bought me some anyway, so I'll use that, but after that i think I'll let nature do it thing


And on another note, had my scars checked today, by the nurse, and she was really pleased with how they look, very neat once again, and they only look like scratches! Which is amazing, considering what I was put through! Have a dressing on again, just to protect it when I'm sleeping so that i dont damage it when sleeping and i have a scratch at them... But that will come off in a few days, and so then it will be open and healing Photos to follow oh and i notice i didnt include my pelvis scars on the last photo, so I'll pop them up at the same time
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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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  #41  
Old 17th June 2014, 01:08 PM
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Default Re: More surgery Thursday!

So good to hear how well you are doing Jay I had a bone graft taken from my hip too, but that was years ago. it's rarely done these days so you are a rarity there too!
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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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  #42  
Old 17th June 2014, 02:39 PM
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Default Re: More surgery Thursday!

It hurts soo much sometimes! But thats just the muscles, but i can see why they don't do it often, as it really does hamper your walking, and im only just getting to walking properly unassissted now, which im pleased about as i think that using the crutch is giving me some back ache which i really don't want to be having right now. But Yay again for being a rare case :P think this bring the rarity rating of my surgery to pretty darn rare! haha
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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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  #43  
Old 17th June 2014, 06:26 PM
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Default Re: More surgery Thursday!

I've had grafts taken from both my hips, left for the original surgery and right for the revision! I was given the option of BMP for the revision but declined and Mr Cole agreed with me that there's nothing like your own bone!! It isn't as wodely used nowadays because some people have ongoing pain at the graft site, but we knew that hadn't been a problem for me before so I preferred to take the chance with the revision. Hope your discomfort settles down soon Jay
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  #44  
Old 18th June 2014, 02:29 AM
Rod Stewart Rod Stewart is offline
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Default Re: More surgery Thursday!

Jay

I have noticed that you added “strut graft” to your signature......This is also a very rare thing, what you had done was very specialized.

It like the Indians in the Northwestern United States who would not cut a tree down for the lumbar they needed for a canoe. They would saw out only what they needed and would leave the tree standing with half a trunk....When I learned that, I thought that was commendable.

I had no bone used whatsoever in my surgeries....None. How these surgeons determine selection of grafting material, I don’t know, I was done with BMP in my Lumbar through an ALIF, (Only FDA approved usage) and synthetic bone pastes.

Try to hang in there and take it easy......it will get better in time....

Ed
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  #45  
Old 18th June 2014, 12:17 PM
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Default Re: More surgery Thursday!

Jay, I just want to say how proud of yourself you should be, you have been through so much yet remain so positive which is great

I'm sure you must hurt like hell but in time it will all settle, it just all take time, frustrating for you I know but its surprising how quickly time passes. Look at how quickly its gone since your surgery. I can't believe I'm 3 years 8 months post op-that's how quickly it goes!

Take care xx
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