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Butterfly_8t8
14th February 2006, 07:34 AM
Hi, everybody,.. I'm so glad I found this site. I'm 31 from Oregon and have 3 daughters. My oldest daughter, who will be 10 y/o this summer, had an appt this 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 becasue 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!

sins
14th February 2006, 11:03 AM
Hi and welcome to sso.
yes, NF can have a big effect on scoliosis/kyphosis.One of our members here Joy who is from Canada has both NF and scoliosis and has had a successful corrective surgery.I'm sure she'll be happy to help.
It's really annoying to see how lightly some doctors can dismiss scoliosis/kyphosis as merely postural problems.Thankfully, you've been referred to a specialist now and you'll have some answers soon.
I guess you can expect more x rays, an MRI scan.
Then perhaps he'll discuss your options such as bracing or surgery.As she's so young he may decide to brace for a while before opting for surgery.
Many people here take digital cameras to their appointments and photograph their x rays.Make sure to ask what the cobb angles measure for each type of curve.
Hopefully your consultant surgeon is one experienced in dealing with pediatric spinal deformity.There's a list of Surgeons who belong to the scolisois research society and check if he's listed there.
Also may I recommend a US based site called www.scoliosis.org who have a large American membership as well who may be able to give some information to you.
Good luck with your appointment and please let us know how it goes.
Sins

Abbi
14th February 2006, 12:23 PM
Hi there! :welcome2:

I am glad that you have found the site, and that your daughters condition has been finally picked up!

The degrees thing - ok, you said it maybe be around 15* (this is mild, but in a growing child it may progress at a quick rate) and basically they measure it like an angle! The spine is supposed to be straight...so they sort of measure the curve from the normal straight centre of the spine, and get the degrees (I hope that made sense - it did for me)

As for questions, I'd ask for the degrees of Scoliosis, and Kyphosis....I'd ask to see the x-rays, and what treatment he reccommends.

I hope the appointment goes well.....good luck!

:squeeze:
Abbi

Butterfly_8t8
14th February 2006, 08:06 PM
Thank you so much.

The digital camera idea is awesome,.. I will definitely do that. That's a great idea for my youngest DD's MRIs, too,... I wish I had thought of that a long time ago.

The pediatrician is the one who mentioned a guess on her 'degrees',.. I did go to scoliosis.org and copied my initial message there as well, thank you for suggesting them also. From reading some of their posts, it seems I might run into Drs being more lax about using braces as soon as Drs do in the UK,.. I hope our ped. ortho. surg. will be more on the side of UK's opinion vs. waiting for her to get worse before working on preventing further damage. *Fingers Crossed*

I also saw that a few people seemed to agree that the best Dr to give you any numbers on the degrees is the ortho. ped. surg. so I am curious to see if he agrees or if it is better or worse than the pediatrician is guessing. To look at her, it sure looks bad,.. especially in her lower back. It curves inward so badly, and it causes her tummy to push out giving her that 'pregnant tummy' look,.. she already has a little extra pudge due to entering puberty so this is really making her self-conscious, and that breaks my heart.

Thanks again for the warm welcome, and for the advice,.. if you or anyone else, thinks of anything else I should be asking about before we go to the appt. I will appreciate it very much. I'm still curious, too, if it is common to have all three of Scoliosis, Kyphosis and Lordosis?

I'll keep in touch! (((hugs)))

sins
14th February 2006, 08:11 PM
the answer to the question about having scoliosis/kyphosis/lordosis wouold be that it's not as common to have all three curves although if you ask Phil and zerodegrees in kyphosis room here, they would have had all three types of curvature, the scoliosis being the mildest type of curve.
Sins

Gadget
14th February 2006, 08:56 PM
Welcome to the board, I'm sure you will find lots of help and support here. I certainly have they are great people here.
G x

Butterfly_8t8
14th February 2006, 09:18 PM
Thanks, I will watch the Kyphosis room, too, and maybe I'll meet up with those guys so I can ask more questions about that as well. The Scoliosis looks to me to be the least of her curves, too,.. You can see the Kyphosis, but the most dominant that stands out really obviously is the Lordosis,... her sway back is jaw dropping,.. well, I should say at least to us it is (as a parent I suppose I'm more prone to thinking everything could be worse than it is, but she does look very bad.) so I am anxious for the ped. ortho. surg.'s opinion... I am so surprised that her low back isn't just killing her, but she has no pain from it.

You guys are wonderful,.. glad I'm here, and thanks for having me, even though I'm a Yank, LOL. (((hugs)))

Thaleias spirit
14th February 2006, 09:33 PM
Hi & Welcome to SSo ...

Unfortuneatly many doctors (and not just those in the US) have that opinion of scoliosis, and don't warrant how much harm it can cause.

However, as you've been diong your research and are being quite proactive in enuring your daughter gets the help she needs and deserves which is always great ..

I'm afraid I know little to nothing about NF .. but I do know how exasperating all this trying to get help can be .. so I wish you the best of luck with it all.

and if there is anything we can do to hellp you with all this then we will.

chele

mark
14th February 2006, 09:53 PM
Hello Butterfly

I have kyphosis (scheuremann's) along with scoliosis and lordosis. With the kyphosis being the worst. I was seen at an early age and got much the same response "stand up straight" "stop slouching" "shoulders back" all that useless rubbish so my curves have been left to progress over the years. I only got back into looking for a solution when i met these lot on line a few years ago.

I have posted a lot of articles in the kyphosis forum so i will go look through those for you and see what i can come up with. I also posted a thread recently in the general forum on examination of the back it has a lot of pictures and text thats easy to understand i will bump it to the top of the page for you

Unfortunately the medics are never all that quick in anything they do so you may have to wait but don't give up just keep coming back here where all here to support you.

Should you want to ask any questions just post away here the kyphosis forum or pm me if you want i will do my best to answer your questions or try find the answers for you. I hope you take a little hope from some of these posts once again where all here for you

Take care

Mark

mark
14th February 2006, 10:01 PM
Its in the examination of the spine thread

mark

newgirl
14th February 2006, 10:55 PM
Hi and welcome to SSO.
I am glad to hear that you have been listened to and that you have been referred on to a specialist. My daughter has scoliosis so i am afraid that I can't offer any advice on the kyphosis or lordosis.
Are you based in Portland? We were there for 4 months last year and had a wonderful time. I did some research on docs when I was over there although we did not have to see anybody whilst we were there. The Shriners hospitals were recommended highly and as far as I can remember it was not the one in Portland that specialised in Scoliosis, but there was one close by and I think one in Seattle. I wil try and look it up for you later.
Hope the weather is nice there at the moment,
Take care
Nicola

Joy
15th February 2006, 11:34 PM
Hi, I'm Joy. I have NF too. I had surgery three years ago and got very good correction. I still have some pain issues, but am glad I had the surgery. You can PM me any questions, or just post them here and I will get back to you!

Butterfly_8t8
16th February 2006, 10:02 AM
To everyone, THANK YOU,.. You guys are all so great. I'm really glad I came across this board. The other one is being of benefit too, so I appreciate that reccommendation as well.

I haven't had time to look up much on the other info yet,.. too many other things going on this week, and with my youngest's oncology appt, too. That's all still up in the air right now,.. didn't learn anything new,.. more 'wait & see' for another month.

Mark, it's late now so I'm going to keep this short until another time, but I will definitely be asking you questions, LOL.

Joy, I will most definitely have Qs for you, too. It will be great to be able to talk to someone who has the NF link as well, even though we don't know yet if my oldest has it, too, yet, or if it's just an unrelated coincidence. We'll be doing genetic testing soon. I did meet another person on the other board who's daughter has both the scoliosis and NF, too. I think it will do me a lot of good to learn as much from other's personal experiences as possible. Thank you for being so open to me asking questions.

We're still waiting for the appt. w/ the ped. ortho. surg., but if they don't call by tomorrow afternoon I'm going to call the office and make sure it doesn't get delayed.

Newgirl, thanks for your insight on Shriner's. We have a Shriner's up at OHSU in Portland, and perhaps that is the one that you were referring to? I would totally be willing to drive all the way to Seattle if it meant getting the best specialized care,.. it's about a 4-5 hour drive, but we have family & friends in that area we could stay over with. My youngest goes to Doernbecher's now for her NF,.. we just got Kaiser Permanente Ins. so I'm still waiting to learn who & where we go to see for all these various different Drs. I don't know who the pediatric orthopedic surgeon is yet that they are referring my oldest to, but I do know they're sending us to Portland. Oh, you asked if we were based in Portland,.. we actually aren't too far,.. an hour away in the Salem area. I've had to make lost of trips to Portland & back for my youngest daughter over the last couple of years. All the specialists are there... I don't mind an hour, and I've done it on average every 2-8 weeks. I wouldn't mind Seattle either if it meant better specialized care. Thank you for looking up that info for me, too, btw,.. I'll appreciate receiving that.

Well, I'm exhausted,.. it's been a long, long day so I'd better get myself off to bed. So much for me keeping this post short, huh?... Oops! Anyway, I really appreciate you all being so supportive and welcoming,... I can really use it!
(((BIG HUGS)))

Little Ali
16th February 2006, 09:03 PM
Hi there! :welcome2: Hope you find this site helpful!

I'm Ali, 24 and have Spina Bifida and Kyphoscoliosis. I'm afraid I don't know much about Lordosis but there are loads of lovely people here who will help you out.

Glad you found us here! :niceone:

Butterfly_8t8
20th February 2006, 11:25 PM
Joy, I do have a question for you,.. how does NF show up as far as your x-rays go for the scoliosis? Why I ask, is the peditrician said that they "didn't see any signs of NF in her x-ray",.. Is that something you can tell by x-ray?? We've always had to do MRIs to check for the tumors, and so I'm just curious if you know? I'm wondering if NF can legitimately be seen in an x-ray checking for scoliosis, or if this is another crackpot answer from this doctor??? :???:

PS- We are scheduled to do the genetic testing on all of us Thursday morning up in Portland.