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dawndd
03-04-2005, 09:39 AM
Yesterday we found out that our 13 year old son likely has congenital kyphosis (a bridge/bar of 4 vertebrae on the anterior or front side). We have an appt. at Shriners Hospital in Greenville, SC on March 23. I have more questions than I can think of to ask but I am compiling a list of questions to ask the doctor at the first appt. Can anyone give my ideas of what I should be asking. Also, if anyone has a child that has congenital kyphosis with a bridge/bar of vertebrae, please email me about your experience. Thanks so much. This is all pretty scary right now.

Carmell
03-04-2005, 12:06 PM
Hi dawndd,

I can imagine how scary this is for you and your family. Being 13 is hard enough in a best-case situation. I'm sure your son has lots of worries too.

Two of my three children have scoliosis. My daughter (18) has adolescent idiopathic scoliosis, diagnosed on her 13th b-day. Her curve is a lumbar (lower spine) curve with an upper compensatory curve. Her spine has stabilized over the past few years, so no surgical intervention for her.

My 9yr old son, Braydon, was born with severe congenital scoliosis in the thoracic spine. He has had both fusion surgery and adjustable rod placement surgery. He is doing very well.

I don't have direct kyphosis experience, but I do know several parents who do. Kyphosis is a bit trickier to treat since the problem with the bone structure of the spine is on the inside, near the lungs and heart. If the kyphosis gets too severe, it can cause problems with the function of the internal organs.

Some questions I would ask include what is the degree of kyphosis (everyone has a natural kyphosis, but if its more than 20-ish degrees, then its considered something to document). Also, I would ask about his growth - what is is Risser score? This measures how much bone growth the patient still has. A Risser score of 5 means the bone growth in the body is complete. A Risser score of 0 (zero) means the patient hasn't begun reaching skeletal maturity and there is a lot of growth remaining.

I would also ask if your son has Scheuermann's Kyphosis. This probably doesn't change any treatment recommendations, but it will give you some medical guidelines and other things to watch for that may be common in Scheuermann's cases. Here is just one of many websites that talk about this condition. http://www.spineuniversity.com/public/spinesub.asp?id=48

Good luck with meeting with the orthos - I hope you find answers to your questions and they will give you good recommendations for your son. Keep us posted.

nikyergen
03-04-2005, 12:59 PM
Dawnd:
I have three daughters that all have back issues. My 16 year old, Crystal has Scheuermann's Kyphosis/Scoliosis, scheduled for surgery on March 15, 2005, at Shriner's Hospital in Portland, OR. She will be having Posterior surgery. My middle daughter, 14, Liz, has mild scoliosis, and is a wait and watch. My youngest daughter, 13, Michelle has Scheuermann's Kyphosis and wears a brace. All diagnosed on October 13, 2004.

What I have found is that there are plenty of people out there with Kyphosis, but there isn't a lot of information. So, we just rattle on, keep searching, etc. I guess at this point, 11 days before surgery, I have just turned it all over to God. Kyphosis is trickier to treat and sometimes has to be a posterior and anterior surgery. Crystal's doctor feels that posterior only will work for her.

When we get back from surgery, I'll catch up with you and let you know what they did and how it went.

Ask every question you can think of. Even if you think it might sound a little silly. If you thought of it to ask, it is worth asking.

The docs and nurses are great at our Shriner's Hospital, so assume they are everywhere.

I'll keep you posted.

'til later,
Nikki

dawndd
03-04-2005, 02:20 PM
Thank you Nikki and Carmell and Mary Lou. It really helps to hear from people who have been down the road before.

Justin
04-05-2005, 04:28 AM
Hello dawndd,

Well, i have congenintal kyphosis and scoliosis. My scoliosis consist in the thoracolumbar curve at t7-t11 measuring about 47 degrees.

My kyphosis is mostly in the lumbar area rather than the thoracolumbar area.
I was born with a what they call Hemivertebra with Contralateral Bar.
http://www.scoliosis-assoc.org/default.tpl?PageID=55&cart=11126041886423189&PageName=TYPES%20OF%20SCOLIOSIS&sec_id=55&sec_status=main
go there for details about congenital malformations

mine basically consist of a wedge vertebrate in the l4-l5 failure to form/divide with the failure of segmentation thingy your son has.
i also have spondylolithesis in that area. it means the vertebrate has been shifted like a rock on the end of a lever instead of the middle. i think its due to sports like baseball, basketball, tennis, badminton, heavylifting where the spine get hyperextended.
fusion rate is not good for this surgery due to my spondylolithesis should be more than 75 % if your son does not smoke. im thinking your son's 4 bars need to be fixed if your son's kyphosis is near that region and is being affected by it.

Mary Lou
04-05-2005, 05:32 AM
Hi Dawn,

How was your son's appointment?

My 13 y.o. daughter had surgery for her Kyphoscoliosis almost four months ago and is doing great! Her Kyphosis and Scoliosis are both ideopathic (no known cause). Like Justin, she also has spondylolithesis in her lumbar region (which was not fused) which we also have no cause for it. We know it isn't from playing sports, because she was never an athletic person. Jamie's main curve Scol. curve at the time of surgery was about 46* and corrected to about 13* and her Kyphosis was about 72* and corrected to about 13*. Jamie is fused from T3-L2 and her doctor says she should have great success. Any further questions, please feel free to ask.

Mary Lou

Littleone1016
04-05-2005, 01:38 PM
I also was diagnosed with Scoliosis/Kyphosis at the age of 8. My Kyphosis curve was severe enough that the doctors felt that I couldnt wait longer than the age of 10 for surgery because I was crushing my heart and lungs. Having Scoliosis and Kyphosis makes things a little more diffucult for the patient and the surgeon. My suggestions for you Dr visit would be to bring a pad of paper and pen to write down some of the information. When the doctor goes though it, we are sometimes all in shock and don't comprehend as well. If it's written down then you can go back to it to answer some questions that you might have forgotten. Also, don't be afraid to ask as many questions a possible, make sure you and your son understand what the options are. Nothing is stupid or trivial! Good luck with your appointment! Feel free to e-mail if you have any specific questions I might be able to awnser since I've been though it :-P

javaboy
07-12-2005, 11:12 PM
Hi Dawn,
just found this post - sorry to take a good three months find it! (I usually lurk on the adult side of the forums).

I am 28 and have a very similar deformity to your son - a congential fusion on the anterior side of T9-T11. The only real difference by the looks is that your son has one more vertebra involved, and has been diagnosed much earlier than I was. Mine wasn't formally detected until I was 27.

As a result, I have gone without surgery. I believe my curve is about 43 degrees, so it's borderline for surgery anyway. That combined with my age basically rules me out.

To give you an idea of what would be to come for your son if things are just left alone...
By about age 15, I started getting some thumping migraine-style headaches. It was blamed on various things over the years (sinus headaches, pure migraines etc.).
By my early twenties, I was waking with some form of headache or referred neck pain on a daily basis. Goodness knows how I got through study/work each day, but I managed. There were a few years there where I can remember eventually expecting to get only a handful of pain-free days every twelve months. And I'd probably get a migraine that rendered me useless for half a day maybe once every fortnight.
I also had very decreased muscle development, particularly in the upper back and shoulders. I probably couldn't lift a tin of dog food in each hand above my shoulders without struggling.

I'm now going through physical therapy to get my muscles where they should be, which is helping. It's improving my posture, which in turn decreases the pain and incidence of headaches. There's probably some nerve pinching or damage in there too, which is referring the pain and headaches, but we'll deal with that once the muscles are OK.

So while I can't tell you whether surgery is a good idea or not (it's highly individual and I certainly haven't even been through a discussion of it), I can definately give you a few other tips:
- Find a good physio who understands the problems, and have them implement a physical therapy program if necessary. Not sure if your son's back muscles will need it or not yet at age 13, but it would definately help him to ensure that his back is strong and balanced as he continues to grow. I am on a Pilates program for this, and it is awesome. :)
- Get as much info as is humanely possible on the exact diagnosis and the different treatment options, and make sure he knows about the whole heap of it. Living with what I had for as long as I did, I knew that something was different and that it was limiting me, but not knowing what it is can make you think that it's just your own lack of ability and nothing more. I find that being informed heads off the depression of having not much to blame other than yourself.
- Don't let him stop doing what he does. My back muscles are all over the shop, but I have never stopped playing sport, working long shifts on my feet, and all the other things that pay out on my back. I may suffer for it afterwards, but I enjoy it, and I can still take part in life. Limiting myself just because I'm going to feel lousy for a while afterwards just means that I'll miss out on things in life!

Basically, we're blessed that we aren't quite as physically knackered as some other people. It's possible to have Type-II congenital kyphosis and live a decent life. At least, I try to! :D

Please let me know how your son and your family are doing... as has been noted by the other guys above, there seems to be a definate lack of information around Type-II sufferers. It's nice to even find another person going through the same things.

Ta,
Martin Hughes

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