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jojo
12-19-2003, 04:59 AM
my 7 yo daughter is developing scoliosis. this is no surprise because she is a carbon copy of me. I have severe scoliosis my self and had surgery at 11 year old. i have rods that span the entire length of my back. I am optimistic though because you would never know by looking at me that i have this condition. I have had children (cannot have epidural though had to go naturaly). If any one has any questions i would be happy to answer them. I am scared for what this means to my child i was 9 when they discverd mine and she is 7. I don't yet know if my experience is an asset for her or me yet. It was scary and painful for me. :confused:

Carmell
12-19-2003, 12:56 PM
Hi,

I wanted to welcome you to the site. It's a great place to share experiences and ask for help.

It sounds like you have plenty of personal experience (sorry to say) with scoliosis. I hope your daughter will be able to benefit from medical technology and avoid fusion at such a young age. There are new advances that I hope you consider for her.

Does she have any other medical issues that would complicate her scoliosis? Does she have any bone malformations (congenital)? I'm assuming she has idiopathic scoliosis and is under the care of a pediatric orthopedist who specializes in scoliosis (ideal scenario).

Two of my three children have scoliosis - one has adolescent idiopathic scoliosis and the other was born with severe congenital scoliosis. I know that it's much harder to be the parent than the patient - we don't want our children to go through any medical intervention. It's hard, but they are strong and have so much support and love to offer. Keep in touch - let us know how she's doing and if you have any other advice for us, or questions too. Take care!

jojo
12-19-2003, 03:42 PM
the pediatrician we see just spoted a 10*to 12* curve and refered me to a orthopeadic specialtist. the soonest i could get an apt was the end of feb 04. so we'll see what our options are then I guess. The girl on the phone tried to tell me to wait until june for an apt. she knows nothing.
thanks for your reply this is a very bumpy road. when i had my surgery there was very little info. thanks for such a great medium.

psmet
02-05-2004, 11:43 PM
HI I have a 7 year old who was diagnosed at 5 -- she was observed for about 10 mos, and then braced for almost a year now. She's been holding steady and we are hoping the brace will be all she needs. She does hate it !!! She's very thin and it does make it difficult to eat (she gets nauseuous very easily)

We caught her so young because my husband's sister has a curve discovered at around 11 and had surgery by 13. She's 34 now with 2 kids. She does have some problems with her back (due to the rod and a car accident when she was around 20).

The interesting thing is my doctor said that this type of scoliosis is more common in England ... he didn't know that in fact my husband's family is from there.

How is your daughter doing now?? are they watching her for now?? Does anyone else in your family have severe curves??

jojo
02-07-2004, 06:04 AM
she is being treated at the shriner's hospital and they are doing a genetic test for a disorder called Marfan syndrome. The tested me for that when i was a child but were limited because they could only base their test on symptoms. Just in the past ten years they have been able to isolate the gene that causes this condition. This gene is responsible for makeing the fibrillin in your body. fibrillin is responsible for all of the connective tissue in your body ( joints and such). The must noted person suspected of possibly having marfan syndrome is Abrham Lincoln. some of the symptoms are Longer arm length than body, concaved or extroverted rib cage, hyber flexability, heart issue and such.
i'll update you further when we get the testing in a few weeks. she is not being braced yet but from what i have read about marfan it wouldn't do much for her. She does have the hyperflexability and concaved chest which is a major issue in itself
so we are still waiting for more info. Does your daughter have any other bone issues?

psmet
02-07-2004, 08:23 AM
No my daughter doesn't have any other bone issues that I know about. She's had the MRI to rule out anything on her spine -- and everything has checked out OK. In all other ways she seems to be very healthy (knock on wood). She's considered to have idopathic scoliosis - which means there is no known cause. Is your scoliosis or your daughter's of a different type?? Does she have pain or discomfort?

Why they are doing genetic testing?? Do you have Marfan syndrome or any otrher health issues?

I ask because my sister in-law (with the Harrington Rod) has had a lot of health issues which have always appeared to be unrelated (ie. she recently was diagnosed with lupus), and I think they've diagnosed her with fibromyalgis (sp?) and does have lots of digestive problems (that are undiagnosed). I think she's always thought that her scoliosis was idiopathic too -- it would be strange to find out if it was all related.

Khaleesi
02-07-2004, 10:50 PM
I know what you mean about having scoliosis maybe not being an asset. My daughter is 10 1/2 and was diagnosed with a 10 degree thorasic curve this past monday. My scoilosis was found when I was 11 and I had corrective surgery when I was 13. She's SO scared. She knows how horrible it was for me and she sees the pain I still have every day. I don't know what to do.

Mary Lou
02-08-2004, 07:56 AM
Hi. I'm sorry to hear about your daughter, especially at such a young age. My 12 year old daughter was diagnosed in August with Kyphoscoliosis. Her Scoliosis is 34 degrees and we've just switched doctors. The previous doctor gave us two options and believe it or not, surgery was the best sounding option! We are still considering surgery and my question for you is what type of problems do you have since your surgery? My daugher's future is a major concern to me and I feel only an adult who's been there can answer that for us. Thank you and good luck with your daughter.

jojo
02-08-2004, 08:34 AM
i have no issues i have had to have both of my children naturaly but other than that and a scar you would never know i ever had scoliosis and at the time mine was so severe i had to fly to the university of chicago because no body was confident enough to perform the surgery to the exetent that i needed it. recovery was hard but we got a dog a little before wich helped because no one wants to play with someone who can't move very much. I actually have a great body and am about 5'7" to 5'8". wore a bikini in my teens and early twenties. Unless I pionted it out you couldn't even see my scar.

jojo
02-08-2004, 08:55 AM
My mother was told that mine was idiopathic. The doctors who are treating my daughter suggest because I have it and she has it there is definitly an underlying issue.

In my own personal research I have found that most conditions that cause Scoliosis are possibly dominant genes. I personally feel idiopathic is really associated with the teenage onset due to rapid growth at puberty. Early onset has to have a cause, And due to the fact that to date no one has found a gene that actually causes Scoliosis only genes that cause conditions of which scoliosis is a symptom, such as marfans, I feel early onset scoliosis has a cause that one day could be identified as early as pregnancy. By definition idiopathic means "no known cause" so it is still an appropriate term for now.

I also feel that the intoeing (which my daughter and i both have) is a factor in our scoliosis. since bones react and grow base on use and when you intoe each foot put pressure on your body at a different angel and with each passing step you get a gradual mis-alignment. None of this has been proven so don't go to the doctor with this as fact.

My daughters doctors asked if i had ever been tested for marfan and i was checked it was neither confirmed nor ruled out. I did get an echocardiogram a few years back since the major issue with marfan syndrome is a rupture of the aorta. I am fine so far but not a lot of doctors are comfortable with marfan sydrome because it is very rare.

Khaleesi
02-08-2004, 11:12 PM
Hi Mary Lou. I had to wear a underarm to hip body cast for 6 months after my surgery (1983) which I'm not sure they still make people do. I healed very nicely. I still had back pain after my surgery, but I could do everything ( just about) that anyone else could do. I lived a normal life. I watched how I lifted things, of course. I would fell some strange poking pains when I turned in certain ways...from the harware I assume. I didn't really any problems until I was about 30. I'd had the Harrington Rod (one only) in for 17 years at that piont. I started having a lot of pain at the top and bottom of the rod. The "hook" sire the doctors said. Nothing we did made the pain any better and after several months of intense pain I had the rod removed. I'm still not sure if that was the best thing to do or not, but that pain did go away. Given everything, I'd still have to say the surgery was the way to go. I was totally noncompliant when it came to wearing my brace. my mom didn't make me wear it and I didn't. I'd have been crippled and probably dead by now according to the doctors if I hadn't had the surgery.

Mary Lou
02-09-2004, 06:41 AM
Thank you. I know surgery is a very scary and very, very serious operation. No parent ever wants their child to have surgery, but like you, not wanting to be a cripple, I feel the same way about my daughter! She is young, healthy and active and I want her to be as active as she can. Why not do the surgery now, when she will heal quicker? We have started the process of making the Boston brace for her, but I still haven't given up planning surgery for the "near future". I sent for a book that many people on this site have recommended called, "Scoliosis Surgery: The Definitive Patients' Referernce." I will try my best between now and April when we see the doctor again to make my daughter wear her brace, but I don't think she will be too co-operative. Besides, she wants the surgery! She says do the surgery, restrict me for up to a year and let me get on with my life! Thank you.

psmet
02-09-2004, 10:55 AM
Hi !!
My daughter is only 7 and has been wearing the brace for a year now - and her curve has been holding steady. -- I understand it is SO MUCH different for a 12 year old to have to wear a brace and feel self conscious than a 7 year old..... but give it a try!!

The first weekend we had the brace I took my daughter out shopping for new clothes -- she was so frustrated and really angry!!!! She was used to wearing cute dresses and tank tops etc. I had all I could do to not cry in front of her !!! I wanted to rip the brace off and throw it in the trash myself!!

Then I came home and my sister-in law came over and she convinced me that bracing would be so much better long term. (Believe me - I didn't really want to listen to her at the time) She said she wished they had caught it sooner for her!!(it was already too curvy to brace when they found it for her) She had the Harrington Rod surgery at 12 or 13 -- and then the casting. (which was hard - she wore a brides-maid dress for her sister's wedding over the cast) Then all she had was the scar. But then she had a car accident at 19 (fairly mild one) and she just started having more and more back pain. She has two beautiful kids (had to be c- section). She's 34 now and it looks like one of the disks is degenerating - where the rod is fused. She's had some kind of epidural shots. She may eventually need to get surgery to have the rod removed - then who knows?

At first, I looked at it like you -- all those years of bracing (for us it could be 8 or ten more years) vs. a quck surgery over and done with and everything will probably be fine. But you can't predict how surgery will go -- and if the bracing works -- then it may be over and done with with no real worries past the teen years!! Bracing REALLY may be the short term solution!!

Give it a try -- the year has not been easy - we have had battles - she still hates it -- but once it is a routine there are many days she doesn't complain at all. Maybe try getting to know someone who wears one. I thought that it might be hard to find - but we ran into a "cool" teenager at the hospital who was probably 14 or 15 -- she was great - she explained how she only has a little while left to go and how it really wasn't that bad. That was a great boost!! And then there's a ten year old we just met who wears it 23 hours a day and is holding steady too....

I still keep fast forwarding to junior high and dances and dresses and it breaks my heart but you just have to take it one day at a time!! We've got our fingers crossed ... and maybe she'll need the surgery eventually ....but I think we've just got to give it a chance......

It's not easy either way.........

Good luck!!

darkhall2003
02-13-2004, 06:33 AM
is having a operation the best thing to go about or not i need to know please

Mary Lou
02-13-2004, 07:49 AM
Hi Ben. I've been reading your posts all over this forum and you sound VERY scared. That's okay. I'm 36 years old and have to make the decision whether or not to let my daughter have surgery and I am very scared! My best advice to you is that for some people surgery is the only answer; for some it is the best personal decision; and still for others, it would be crazy to have surgery. Trust yourself, your doctor and keep asking questions. None of us here can answer all your questions since we aren't doctors, but we can all offer support. Have you tried to set up a consultation with your doctor before your appointment in April? You can drive yourself crazy worrying about this until then. Set up an appointment and take your Mom or someone with you, to help remember all the information, and find out exactly what degree your curve is and exactly what they plan on doing to do. Make a list of questions to take with you. I take a list of questions with us to the doctors everytime we go! Good luck.:cool:

darkhall2003
02-13-2004, 08:00 AM
thanks and yer the sooner i have this operation the better that means i wont be in pain anymore