View Full Version : New here

24th April 2005, 09:07 PM
I'm new here my daughter was just diagnosed with Acute Progressive Scoliosis I have no idea what type she has we will be having an MRI Tuesday and seeing a specialist at a Navy hospital in VA my husband is in the Air Force. So we have to go thruogh military options before we can see a civilian not fun. They are also checking for possible tumors on her spine as they can feel a lump where she's been complianing about hurting she's only 2 and half. I joined the Cast Yahoo group a few days ago. I see from there so many different things can be going on and not all are candiates for Casting. What's the difference in the different Scoliosis? Any help would be greatly appreciated. Thanks Cathy

24th April 2005, 09:27 PM
Hi Cathy

Welcome to SSO. My daughter is also 2 and a half and was diagnosed last June with a 62 degree curve. She is being treated with serial plaster jackets and is due to have her 5th cast applied on Tuesday. Casting is the treatment of choice by doctors here, but that certainly isn't the case in the US.

There are generally 2 types of infantile scoliosis - congenital and ideopathic. Those with ideopathic, caught early, have a good chance of improvement with casting, although it's generally acknowledged that it has little impact on congenital curves.

The MRI is the first step for you to determine which type your daughter has, and it's great that this is being done so quickly for you. Once you have all the facts you can move forward with finding the best treatment.

There are lots of people here who have lived with scoliosis a long time and who have a great amount of experience with it. They'll be able to answer your questions in more detail I hope. I feel like I'm still learning to a certain extent.

Welcome once again. Any time you feel like complaining or getting something off your chest, we'll be here for you.

Take care

24th April 2005, 09:44 PM
Hi there Cathy, I'm so glad you've found us. My name's Toni and I was diagnosed with infantile idiopathic scoliosis when I was a baby. I'm 29 now and can assure you that there are brilliant treatments out there for children with scoliosis. My curves were quite large for a 6 month old baby (60+ degrees and about 40+ degrees) and although my notes state that I was a difficult case with potentially very agressive and progressive scoliosis, they managed to halt the progression of my curves for years using casts and braces.

"Idiopathic" scoliosis means "of no known cause" - ie they can't tell what caused it. "Congenital" scoliosis is caused by vertebrae not developing properly in the womb - you might, for instance, get two vertebrae that are fused together that pull the spine out of alignment.

Scoliosis can also be classed as "Neurological" - whereby it is caused by neurological problems, for instance if nerve weakness causes stronger muscles on the other side to pull on the spine.

Right now it's most important that your daughter has her MRI so they can work out what's going on, so I am very pleased to hear that she'll be having her scan so quickly. Once you have the results we should be able to help you more, as the doctors will have an idea of how they wish to treat her.

Good luck! hopefully hear from you again soon :D

Toni xx

Amazed Jean
24th April 2005, 09:47 PM
momofalotofrugrats, Welcome. Welcome. You have found the right place to get some support. No matter what we can at least help you get answers and more importantlly we can keep you sane. Lots of people here with all types of scoliosis. I am 53 years old, and have Idiopathic Juvenile Scoliosis and Kypho Scoliois -They think. Whatever they acall it I have huge curves and never had a blessed thing done. (Which I DO NOT RECCOMEND!) I now have much trouble breathing and sleeping and have a fair aamount of pain. But today there are some amazing success stories please check out the photo gallery. Its not the end of the world. You and daughter and whole family are going to be fine. Just read some stories here and you'll see. I talk too much - Welcome! Jean

24th April 2005, 09:54 PM
Hi Andrea

Thanks for the welcome, The specialist who hasn't even seen her records or x-rays said he thinks in congential not sure how he came to that conclusion but she had a lot of Blood test run On Friday for Leukemia and other infections they said it doesn't rule out possible tumors. Her Doctor wanted her admited right a way for an MRI since we had been in the office only two weeks earlier cause of her complaining about her back hurting and they saw no visual signs of scoliosis. Then again last week because she was still complaining this time the doctor freaked out and said how could I have missed that the week before it was visual to the eye. She's worried that it's progressing very rapidly. Since we are dealing with two different branches of service it's hard to make one do what the other wants. They went back and forth for hours then the Navy guy who is supposably a ortho specialist made the decision without ever seeing her it;s pretty scarey to say the least. Cathy

24th April 2005, 09:59 PM
Thanks Toni

That make me feel a lot better about what is going on. I just wish it was Tuesday already I will be sure to let everyone know what I find out and I'm sure I'll have lots and lots of questions. I saw your pictures you look great I would of never thought you had Scolosis. Cathy

24th April 2005, 10:00 PM
Jean thanks

I will keep you'll informed and I'm sure will have many questions to come Cathy

24th April 2005, 10:18 PM
Hi cathy and welcome.
I had infantile scoliosis too and had very inadequate treatment and my curves are 110/60. Andrea has pretty much said it all, until the MRI scan is done they really can't make a full diagnosis and plan any treatment.
A good orthopaedic surgeon can very often tell if it's congential by feeling the shape of the vertebrae and detecting any abnormality.I presume they've done x rays and that would clearly show it.
Usually in a very progressive congenital curve, surgery is still a popular choice.there are also other newer experimental options so when you find out exactly what type of scoliosis it is and what they propose to do, you can start checking out alternatives then. Check out the titanium rib thread here on sso.JFkimberly is also a military dependant and has not had any difficulty being referred to civilian specialists when required.

24th April 2005, 10:54 PM
Thanks Sins

The only person who's looked at her and her x-rays is her peds doctor. As for getting referred to a civilian it depends on the military fauitlies in the area I'm in an area that they have many which makes it very hard to justify being referred out but due to her young age I may have better luck is what her doctor said as they haven't seen many infantile cases. But again it's a wait and see I'm not one to take no for an answer if I think it's in the best interest of my children all 5 of them LOL. Thanks again I guess it'll all depend on what they find and tell us Tuesday. I just hope we get the results from the MRI right away. Cathy

Amazed Jean
25th April 2005, 02:52 AM
momofalotofrugrats I forgot my Mantra - Get a notebook and write down every question and anything else you think of and always take it with you. You'll be amazed how much good this will be.

25th April 2005, 02:02 PM
Hee hee Jean - that made me laugh. I did actually think it odd that you hadn't mentioned a notebook, and then you came back with it :D

Such good advice though, it deserves a mention every time. I'll be at my appointment tomorrow with file in hand!

25th April 2005, 02:25 PM
Good luck to both of you tomorrow.Hope you both get some good news.

25th April 2005, 02:34 PM
Thanks I will be sure to bring a notebook. I wish it was tomorrow already. I hope today goes by quickly and unadventful lol. I will let you'll know what we find out soon as I can. I just got off the phone with her doctor here and she wanted me to understand this could be an all day thing so bring enough daipers and snacks what fun. We'll have to have our littlest one with us also. Talk to you'll soon Thanks again for all the advise. Cathy

25th April 2005, 02:38 PM
Good luck tomorrow Cathy. Will they be sedating her or giving her a general anaesthetic? I don't know many 2 year olds who will stay still for that long. Perhaps that's why it will be an all day thing?

Do let us know how you get on.

25th April 2005, 05:23 PM
Hi Yes they said they will have to sedate her. I just spoke to my husband and he said we will be seeing the doctor first then going for the MRI. I'll just be glad to get at least hopefully some of my questions answered. Cathy