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Butterfly_8t8
02-14-2006, 02:09 PM
Hi, everybody,.. I'm so glad I found this site. I posted this same message at scoliosis-support, and they suggested I also attend this board as well. I'm 31 from Oregon and have 3 daughters. My oldest daughter, who will be 10 y/o this summer, had an appt yesterday afternoon with a Dr. who finally took me seriously that something is not right with her back. I have consulted with other Drs over the years, and none of them gave me the time of day, and worse, the last one mocked us, telling my daughter that she simply had poor posture and she needed to learn to stop slouching and stand up straight.

So, the x-rays show that she has Scoliosis, Kyphosis, AND Lordosis..... that's about all I know so far, and that we're being referred to a pediatric orthopedic surgeon in Portland. They should be calling us in the next couple of days to set up the appt. they said. They also mentioned that she'll probably get more films at other angles, and possibly an MRI, but not sure.

We don't know yet, but they also suspect a possible link between this and Neurofibromatosis because my youngest daughter & I both have it (NF, that is), and Scoliosis, etc. is common in NF. My youngest thankfully does not have it, although she does have the bilateral optic nerve gliomas which have been growing and she's being reccommended for starting chemotherapy (Sorry, off subject). Anyway, we'll be doing some genetic testing shortly also to see if there is a link to my oldest's spine curves,... goodness, she's curving in every direction.

My husband & I both had mild scoliosis as children,.. mild enough we outgrew it quickly and treatment was never required beyond a Ped. saying 'Scoliosis',.. the Dr today said that is probably what contributed to her condition being so much more than either of our's ever was, just the fact that we both had it... and then adding in the NF. Anybody know anything about this?

It doesn't seem too, too bad yet on the x-ray, but then again, I don't know anything about this... to look at her on the outside, it looks really bad. The Dr. said he was guessing maybe 15 degrees for the Scoliosis, whatever that means,.. (but I guess that's minor?) and has no idea on the Kyphosis or the Lordosis yet, but her swayback is so bad she often looks like her back is going to snap,..

Can anybody enlighten me as to how to interpret the meaning of the 'degrees'?,.. Also, how common is it to have all three regarding Scoliosis, Kyphosis, and Lordosis? Is that fairly common or not?

Can anyone suggest what types of questions I should be asking at her appt with the ped. ortho. surg.??? I'll be greatly appreciative of any suggestions and advice I can get,... I want to go loaded for bear, if I can manage it.

Thank in advance!

LindaRacine
02-14-2006, 03:03 PM
Hi Butterfly...

I wouldn't get too worried yet. Everyone has kyphosis and lordosis. They're the normal curves at the top and bottom of the spine when viewed from the spine. It only becomes a problem when they become exaggerated. And, hopefully, all of her curves are small enough to warrant no treatment. :-)

Best of luck!

Regards,
Linda

Butterfly_8t8
02-14-2006, 03:56 PM
Thanks, Linda,.. unfortunately, her Lordosis appears pretty exaggerated,.. Her Scoliosis is fairly mild, and the Kyphosis seems to be, too, although it is pretty noticeable so I guess we'll just have to wait & see what the ped. ortho, surg. says about it all, but her sway back is so bad she looks like she could snap in half sometimes,... and it's so bad it pushes her abdomin out giving her a 'pregnant tummy' look which of course is making her feel really self-conscious, as much as we try to ease that for her.

I'm not too worried,.. very concerned yes, but I'm trying not to borrow trouble before it's here. Our family really has enough as it is. Our youngest will likely be starting chemotherapy soon... Unfortunately, medical problems seem to run feral in our family.

Our Dr. did say that everyone has Kyphosis & Lordosis naturally, of course, but that they're only included as a 'diagnosis' when they are exaggerated, and he said she is very much "all of the above", and that he's pretty concerned. He was shocked that we've been passed off for the last 3-4 years now,.. but it seems to me from what I've read, that happens a lot.

I've been researching online a lot, too,... I just want to go to the ped. ortho, surg. as prepared as I can so that we can get a head start right out of the gate. I'm arming myself as best I can with information so I can ask informed questions.

Any suggestions for questions to ask are greatly appreciated from anyone willing to share them with me,.. it's impossible to think of everything all on my own with everything else I have going on. Thanks again!

LindaRacine
02-14-2006, 04:15 PM
Hi...

At this stage, I think it's best to go and listen to the specialist. If you go in with a list of questions, I suspect you'd miss a lot. If possible, take another adult with you, and be sure to take notes. It's a lot of information to digest.

I have links to a lot of basic information on scoliosis on one of my web pages:
http://www.scoliosislinks.com/References.htm

I'm really sorry to hear about all of your family's medical problems. I honestly can't imagine how you get through some days. I hope you can get to the specialist soon so that you know what you're up against for this newest problem.

Regards,
Linda

cloggerx3
02-14-2006, 07:56 PM
Hi!

Welcome to the site.
Well I'm 14 and was diagnosed with scoliosis in october. I got a SpineCor brace at the end of ocotober. my curves were 23 top and 19 bottom. They are now 20 and 17. What are your daughter's curves. I wouldnt let her scoliosis get beyond 25 without bracing. But, this also depends on her risser score is, which tells how much more to grow. Im a risser 0. which is unusual for my age. So good luck with everything

Snoopy
02-14-2006, 08:34 PM
Hi Butterfly,

I know your mind is spinning right now, but you've found a great group of people on this forum. My daughter is 14 y.o. and was diagnosed with Kyphoscoliosis (both Kyphosis and Scoliosis) in August of 2003. Like your daughter we think her Kyphoscoliosis was caused by NF or possibly Charcot-Marie-Tooth (CMT). There is no family history of NF, but there is a large part of my husband's family who have CMT. We took Jamie to a Neurologist as suggested by her Orthopedic surgeon. Although we didn't agree to DNA testing (there isn't any cure and Jamie doesn't want to know), we are pretty sure she has a mild case of NF. Her symptoms are of course the Scoliosis and Kyphosis, but she also has many large cafe au latte spots.

I know we've discussed questions to ask an orthopedic doctor somewhere on this forum. If you do a search, you should be able to find that post. If not, we'd all be happy to give you suggestions. Let us know if you can find the post.

Mary Lou

Butterfly_8t8
02-15-2006, 01:27 AM
Cloggerx3, thank you for your reply,.. I don't know my daughter's curve #'s yet or her risser score,.. we are still waiting for the appt with the pediatric orthopedic surgeon. I'll post what they are as soon as I know. The only thing I know for now is that maybe the scoli is approx a 15, and that it's the least of the curves. Thank you for the support,.. it's great to have some younger perspective so I appreciate you taking the time to respond, too. I'm so glad to hear you are doing better,.. I was reading another post on you earlier as well. Sending you (((hugs)))

Butterfly_8t8
02-15-2006, 01:42 AM
Snoopy, thanks to you, too,.. it's nice to hear from someone who also may have the NF link,.. I don't have a family history either,.. I am more than likely a genetic mutation. I didn't even know I had it until my youngest daughter was born. Even then, I didn't know about it until I finally got her diagnosed at 2 years old (neglectful pediatrician at the time).

Our newest pediatrician is the one that suggested that the other girls might very well also have NF. They've shown no signs, except Courtney's back now, although my youngest is riddled with the cafe au lait spots. I realize I'm veering a little off-topic here, but on the NF note, may I ask if your daughter is getting at least annual MRIs if you suspect NF? It's very important to monitor,.. I just thought I should ask since you said she doesn't want to know if she does have NF,.. but it's so important to catch tumors before they get out of hand, and often you won't know they're even there, let alone growing in places without regular MRIs. Perhaps you are already pretty familiar, but if not, I'd be happy to share information with you. We have a website for my youngest daughter also which provides a lot of info if you're ever interested... plus the Children's Tumor Foundation is one of the best resources (formerly the National Neurofibromatosis Foundation). (((hugs)))

Back to the main topic, LOL,.. I'll try and do a search for that list of Q's you mentioned,... I will let everyone know if I have trouble locating it, or if you happen to remember where it's at before I find it, maybe let me know? Thank you again so much,.. I look forward to getting to know everyone.

Snoopy
02-15-2006, 07:18 AM
Butterfly,

Thanks for the info. on NF. No one has ever mentioned an MRI except her orthopedic surgeon and that was before her spinal fusion. I don't know that much about NF but have talked to someone else on this forum who has experience with NF and Scoliosis.

I will try to search for the questions for you. However, two of the questions I would ask are the degree of her curves; and what Risser she is.

Mary Lou

Butterfly_8t8
02-15-2006, 02:36 PM
Thanks, Snoopy,

And, as I said, if there's anything I can be of help for you, too, on the NF side,.. please don't hesitate. You can email me through my youngest daughter's website for NF, if you want (put 'snoopy' in the subject line so I'll know it's you)... we have a lot of info there: http://4ashley.com and as I said the National Foundation is a great place and they have a great support board there, too, as well,..

I'll be sure to ask the ped. ortho. surg. about the degrees of Courtney's curves when we see him, as well as her Risser score. I'll keep everyone posted,.. still waiting for the appt. as of yet, but it's only been a few days since the referral.

Have to run,.. youngest has an appt. w/ her new oncologist today. Waiting for official news on the chemotherapy.**shiver**

(((hugs)))

Snoopy
02-15-2006, 04:35 PM
Butterfly,

I stopped by your daughter's website. I love the ladybugs!!! It's funny, I've always referred to my daughters as "my ladybugs" even before Jamie developed cafe au latte' spots.

Good luck with the chemotherapy.

Mary Lou

Butterfly_8t8
02-16-2006, 03:57 AM
Thanks,..

Still waiting to get the appt with the pediatric orthopedic surgeon scheduled,.. if they don't call by tomorrow afternoon, I'm going to call the office to make sure it doesn't get put off.

Just to comment on my youngest's appt. this afternoon, even though unrelated to why I'm here on this board,.. I haven't updated her site yet, but we didn't find much new out today. The records & films are still being transferred and everything so we're doing the usual 'wait & see' thing for another month,.. they'll get her in for another MRI, & ophthalmology, in the meantime. For now, chemotherapy is still up in the air on whether the timing is right yet. I feel like I can breathe a little while we wait out the month.

I still haven't had a chance to try to look up that other post.

Best regards to all,...

Snoopy
02-16-2006, 03:10 PM
I couldn't find the posts where we discussed questions for doctors, but I tried to remember some of questions I had in the beginning: 1)What degree is her Scoliosis and Kyphosis; 2) What is her Risser number and how much growth does she have left (at your daughter's age, she has a lot); 3) What type of brace if any would they recommend; 4) At what degree would they use a brace. I'm sure you'll have specific questions related to your daughter's situation, but my best advice is to start a list now and try to put them in an order of importance to you because you don't always have time to ask all of your questions.

Mary Lou