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  #1  
Old 25th December 2010, 10:37 PM
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Collette Collette is offline
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Default Hypokyphosis

I had my first appointment with Mr Gardner on the 25th of November and yesterday (24th of December) I received a copy of the letter he sent to my GP. In it he said that I also have hypokyphosis, I wasn't told this at my appointment so it came as rather a shock. Not knowing anything about the condition, I looked it up on the internet. I read that it can have a profound effect on the pulmonary system and that surgery can make the condition worse (and cause that condition if it's not already present).
I'd really appreciate any information and advice from those of you that know about the condition, as it's really scared and upset me. Thank you! xxx
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Diagnosed at 12 now 29. 63 degree thoracolumbar scoliosis, from T9 to L4. I also have hypokyphosis and a syrinx which is under investigation. I also have low-lying cerebellum tonsils.
Currently under Mr Gardner, at ROH, Birmingham. Previously seen by Mr Sell (Leicester), Mr Hutchinson (Bristol) & Mr Grevitt (Nottingham).
No surgery...yet!
http://www.facebook.com/Co11ette
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  #2  
Old 25th December 2010, 10:49 PM
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Little Ali Little Ali is offline
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Default Re: Hypokyphosis

Hi Collette,

Merry Christmas. Sorry to hear this. I'm going to have a look and let you know what I find out.

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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  #3  
Old 25th December 2010, 10:50 PM
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Default Re: Hypokyphosis

RELAX Pretty much everyone with scoliosis will also have some degree of hypokyphosis. It usually just means a lack of the normal outwards curve in the top part of your spine, so it's flatter than it should be (despite any rib hump).

The sort of hypokyphosis that is a worry is the very, very severe type where your spine actually curves forwards where it should curve back. This would mean that you have a much smaller chest cavity than you ought to, and it would restrict your lungs and possibly impact your heart etc etc.
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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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  #4  
Old 25th December 2010, 10:57 PM
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Default Re: Hypokyphosis

Thanks Ali and Merry Christmas to you too. I hope you've had a lovely day!!
Same to you Toni!! xxx

The thing that really worries me though, is that surgery can apparently make the problem worse! Is this accurate?
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Diagnosed at 12 now 29. 63 degree thoracolumbar scoliosis, from T9 to L4. I also have hypokyphosis and a syrinx which is under investigation. I also have low-lying cerebellum tonsils.
Currently under Mr Gardner, at ROH, Birmingham. Previously seen by Mr Sell (Leicester), Mr Hutchinson (Bristol) & Mr Grevitt (Nottingham).
No surgery...yet!
http://www.facebook.com/Co11ette
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  #5  
Old 25th December 2010, 11:03 PM
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Default Re: Hypokyphosis

Hmm, well i'd say that the hypokyphosis, which is lack of kyphotic curve in thoracic spine, is probably part of your scoliosis rather than it be a condition on its own. Because scoliosis is a three dimensional condition involving rotation of the vertebrae, I think it often affects sagittal balance as well as coronal. I have no thoracic kyphosis whatsoever (in fact, it tips slightly into lordosis) but i've always understood it to be just part of the overall scoliosis picture. I don't really know how the pulmonary system can be affected by it, but I guess it would be in the same way that severe thoracic scoliosis can affect lung function. All i'll say is try not to worry about this - you can scare yourself silly by what you read on the internet! Of course you want to inform yourself about things, i've done it many times. But i've learned that you really can tie yourself up in knots over things that may not be that prominent in the scheme of things. Basically, if Mr Gardner thought that fusing your spine would put your heart or lungs at risk, he wouldn't do it. Definitely ask him about it at your next appointment though, so that he can reassure you about your particular case.

Hope this helps!
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I'm Sally, 31, and I have congenital kyphoscoliosis in association with Spina Bifida, Diastematomyelia and tethered cord. Surgery to detether spinal cord and remove bone spur at Addenbrooke's in 1984 aged 3. Developed 'pes cavus' and weakness in legs, various foot surgeries between '92 and '94. Decompression of spinal cord, hemivertebrectomy and fusion L2-L4 with instrumentation by Mr Crawford and Mr Laing (neurosurgeon) in 1998 aged 17. Had two stage anterior-posterior T10 to pelvis fusion surgery on 27th February 2012 at NNUH by Mr Crawford and Mr Lutchman. Fused well but now curving over top of fusion, so facing fusion extension up to T1. Trying a brace first in order to put off surgery til next year
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  #6  
Old 25th December 2010, 11:07 PM
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Default Re: Hypokyphosis

Those things you're reading will be referring to the severe type of hypokyphosis Collette, not the type you're likely to have. If you actually had severe, thoracic-spine-curves-forwards-instead-of-back type of kyphosis then there is no way any surgeon would have put you forward for surgery. Also, it would be obvious on your x-rays.

The reason surgery can make things worse for people with that condition is probably because it will have already had a very negative effect on their breathing.

Pretty much all of us have hypokyphosis along with our scoliosis. Try not to worry, just ask your surgeon to clarify things for you if you need to.
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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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  #7  
Old 25th December 2010, 11:18 PM
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Default Re: Hypokyphosis

What about causing it in an otherwise non-hypokyphotic spine?

This is what I read: "Some of our traditional and current ways of treating scoliosis can create or exacerbate abnormal sagittal curvature."


I know Sally, I've told myself off for looking things up on the net before, but I had such little knowledge about it I just had to.
And yes, I does help! I need to keep reminding myself that no surgeon would suggest surgery if there's a likelihood of making things worse!

I have an MRI on the 30th and a nuclear bone scan on the 6th of Jan, so I'm hoping that my next appointment with Mr Gardner isn't that far off. I'm going to start to make a list of all the things I want to ask him, as my mind just goes completely blank until just after I've left the hospital! So frustrating!
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Diagnosed at 12 now 29. 63 degree thoracolumbar scoliosis, from T9 to L4. I also have hypokyphosis and a syrinx which is under investigation. I also have low-lying cerebellum tonsils.
Currently under Mr Gardner, at ROH, Birmingham. Previously seen by Mr Sell (Leicester), Mr Hutchinson (Bristol) & Mr Grevitt (Nottingham).
No surgery...yet!
http://www.facebook.com/Co11ette
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  #8  
Old 25th December 2010, 11:32 PM
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Default Re: Hypokyphosis

This is the paragraph you're looking at (from Clinical Biomechanics of Orthotic Treatment in AIS, published in the journal of The American Academy of Orthotists and Prothetists). All of the below therefore refers to BRACING rather than surgery; it's already known that bracing does usually flatten out the normal thoracic kyphosis and lordosis to some extent, and this isn't anything to worry about.


SAGITTAL CURVATURE
Many children with significant scoliosis also have abnormal spine curvature in the sagittal plane. These abnormal curvatures occur in a spectrum of patterns. The ends of the spectrum are two very different types of curvature. What the author calls Type I (Figure 4, left) is characterized by a relatively vertical sacrum and all sagittal curves at a reduced magnitude. Figure 4 (right) is Type II or what Dr. Blount (WP Blount, Medical College of Wisconsin, personal communications, 1980) referred to as the "horizontal sacrum" cases. These have an abnormally long lumbar lordosis extending well into the thoracic spine. The thoracic kyphosis typically is reduced in magnitude and displaced cephalad, often extending well into the cervical spine. Cervical lordosis is also reduced, or it may be nonexistent. Thoracic hypokyphosis is worth noting and studying because it can be nearly as cosmetically disturbing as the asymmetrical manifestations of scoliosis. In addition, it is one of the important factors in thoracic distortion and volume reduction that, in extreme cases, lead to cardiopulmonary compromise. Some of our traditional and current ways of treating scoliosis can create or exacerbate abnormal sagittal curvature.
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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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  #9  
Old 25th December 2010, 11:36 PM
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Default Re: Hypokyphosis

You see I just used the 'find' tool and didn't bother to read anything else, including what site I was on...thank God for Toni!!!

Okay you can all ignore this thread now!! Sorry for being an unattentive dope!
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Diagnosed at 12 now 29. 63 degree thoracolumbar scoliosis, from T9 to L4. I also have hypokyphosis and a syrinx which is under investigation. I also have low-lying cerebellum tonsils.
Currently under Mr Gardner, at ROH, Birmingham. Previously seen by Mr Sell (Leicester), Mr Hutchinson (Bristol) & Mr Grevitt (Nottingham).
No surgery...yet!
http://www.facebook.com/Co11ette
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  #10  
Old 25th December 2010, 11:40 PM
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Default Re: Hypokyphosis

Don't worry Colletty. DO write down this stuff to ask your surgeon about though, so you are absolutely sure about things
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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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  #11  
Old 25th December 2010, 11:44 PM
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Default Re: Hypokyphosis

Will do Toni, and thank you! xxx
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Diagnosed at 12 now 29. 63 degree thoracolumbar scoliosis, from T9 to L4. I also have hypokyphosis and a syrinx which is under investigation. I also have low-lying cerebellum tonsils.
Currently under Mr Gardner, at ROH, Birmingham. Previously seen by Mr Sell (Leicester), Mr Hutchinson (Bristol) & Mr Grevitt (Nottingham).
No surgery...yet!
http://www.facebook.com/Co11ette
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  #12  
Old 27th December 2010, 10:19 PM
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Default Re: Hypokyphosis

Oh Collette, I'm so sorry, I never wished you good luck for your appointment in November, unfortunately it coincided with me being in a pretty bad way myself (which is still on-going ), so I lost track of things I'm afraid. Anyway, glad to hear all went ahead as planned and that Toni has now set your mind at ease regarding the written report. Did he give you any idea of what happens next, timescale-wise?
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  #13  
Old 28th December 2010, 12:39 AM
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Default Re: Hypokyphosis

Thank you Gilly, there's no need to apologies!I know what you're going through and I really hope things start to get better for you soon!

Yeah, I'm no longer worried that the surgery may increase the hypokyphosis but it does still worry me; I had no idea that I had hypokyphosis until Christmas Eve!
Mr Gardner didn't give me much information at all during my consultation really and I have to admit that I didn't feel that comfortable with him. So it's still all up in the air at the moment; I have scans scheduled but no word on how long I may have to wait to have surgery. Mr Gardner did say that surgery will more than likely be cancelled at least once, if not twice though!
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Diagnosed at 12 now 29. 63 degree thoracolumbar scoliosis, from T9 to L4. I also have hypokyphosis and a syrinx which is under investigation. I also have low-lying cerebellum tonsils.
Currently under Mr Gardner, at ROH, Birmingham. Previously seen by Mr Sell (Leicester), Mr Hutchinson (Bristol) & Mr Grevitt (Nottingham).
No surgery...yet!
http://www.facebook.com/Co11ette
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  #14  
Old 28th December 2010, 06:50 PM
Angela Angela is offline
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Default Re: Hypokyphosis

Hi Collette.
On my daughters french notes she has written thoracic lordosis which I think is the same sort of thing.
I suppose the severity of it varies like the cobb angles, my daughters back does dip in between her shoulder blades slightly and when I get her to curl up in a ball, I run my fingers along the ridges of her spine and there are a few vertebrae which are too deep to feel.

Our doctor does pay particular attention to this when looking at the x rays so I would discuss it further at your next visit if anything just for peace of mind.

Angela
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Daughter diagnosed with scoliosis in 2008 age 11. Thoracic curve 40, lumber curve 30. Wore a brace at night for 18 months. Growth now complete.
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  #15  
Old 29th December 2010, 05:24 PM
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Default Re: Hypokyphosis

Collette, if you don't feel comfortable with mr Gardner, you could always asked to be transferred to one of the other consultants lists instead. I personally think it's an important part of the process to be under the care of someone you feel you can talk easily to, and after the experience you had before, I think it's even more important for you. There are quite a few other scoliosis specialists at the ROH, so it shouldn't be a problem.
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