Meet and Greet

[Nat1972]

My name is Natalie, I'm 39, 3 kids under 10 that I love dearly. I'm now separated from husband as he couldn't deal with my issues day to day. He's much more tolerant now that he can leave when it suits him. I'm happier cos I don't have to pretend everything is fine now. It's great to hear all the great outcomes. I was diagnosed at 6mths but havent had surgery, as it was originally scrapped when I was 15 and xrays showed natural bone fusion. It was presumed, I think, that the bone fusing itself in my teens would prevent further problems (so much for that). I'm now in incredible pain, can no longer work at all and almost housebound.

Since reading all your posts, I've decided I'm not going to whither away in a medicated haze, believing docs who aren't scoliosis specialists, and accepting a slow painful death for my family to watch. I'm seeing my doc next week for ref to someone in Adelaide and cross fingers I can be living a good life with my kids soon. I've had several other types of surgeries so that doesn't scare me. I can tell everyone scared of surgery that they should be more scared of not having it! Short term pain for long term gain... Better than long term pain for short term life.

[Rodverta Braefusion]

Hi Natalie and welcome to the forum. I am from ADelaide as well. As this is a Meet & Greet, I look forward to hearing your story on the forums.

[slider]

Hi

My name is Anthony. Although I did not have CD instrumentation as an adult I did have it at 15 and I an now just a tick under 40. I wore a Millwaukee for over 12 months but no effect, (I went from 34 to 36)

I am in Sydney

I mainly came to this site after having my first child and looking at what we can do to stay on top of the possibility that he may develop scoliosis.

I was diagnosed at 14, but self diagnosed at 9. (I did not know what is was but I knew I was not straight and was ignored when I discussed this)

[Rodverta Braefusion]

Welcome to the forum Slider - did you get that alias from Topgun!

[M&M]

Hi
I'm the first half of M&M - Mum (Carol) and my 13 year old daughter is the second half (M).
I took M to the GP to ask for a referral to a physio for exercises for her 'sunken breastbone', medical term pectus excavatum. GP also examined her spine and suspected scoliosis so ordered x-rays for both. The x-ray report did not quantify the curve except for "mild scoliosis" present (2 curves to the left). GP has now referred my daughter to a spinal surgeon which I thought was unnecessary until reading just about all of the Scoliosis Australia forums which are most informative ( and hint that surgeons are the best people to consult even if surgery is not needed).
Like MySon, as soon as I knew the diagnosis, I went searching for information.
I came across the Scoliosis Australia website and forums and couldn't believe my luck . Thank-you so much to all the people who contribute, and pardon the pun, are the backbone for newbies like us. I figure like every other decision that we make, we need to be informed and this is a great place to get info.
I am interested in natural / preventative treatment such as the Schroth method.
I believe pectus excavatum is common with scoliosis sufferers. Also curious if there are any other diagnoses that are common in scoliosis sufferers, for example orthodontic issues requiring braces, reflux in infants.
Finally, good luck and speedy recoveries for all those about to or just had surgery, and so pleased to read all the long term happy to have had surgery stories.

[Kiwicurves]

Originally Posted by M&M

Hi
Also curious if there are any other diagnoses that are common in scoliosis sufferers, for example orthodontic issues requiring braces, reflux in infants.
Finally, good luck and speedy recoveries for all those about to or just had surgery, and so pleased to read all the long term happy to have had surgery stories.

Hi Carol , my daughter is also 13 and we first noticed her scoliosis at Christmas. Hers was rapid onset and curves increased from a mild 30-ish to close to 60 within 6 weeks. She had surgery in March, just 10 weeks after the initial diagnosis. (and is recovering beautifully, in fact went back to school 3 weeks after surgery).

Prior to surgery she saw an osteopath, coincidentally all 3 of his teenage scoliosis patients wear orthodontic braces and he strongly believes there is a link. Not saying the braces were the cause, more a contributing factor/trigger ... particularly in connection to the top teeth. My daughters orthodontist began work on her slight overbite in November last year, I first noticed her curve at Christmas. She also had a major growth spurt at this time .. around 10cm in 10 weeks over the summer holidays.

Our osteo is fabulous, has a medical background and is no "hippy healer" as both our orthodontist and Gp suggest. If I had my time over I would certainly leave braces out of the equation until my daughter had finished growing. Obviously not all kids with braces end up with scoliosis but I believe in our case they were part of the equation.

Feel free to message me if you want more info (our osteo gave me research papers which back his theory).

All the best.

[M&M]

Hi Kiwicurves

Thanks for your reply and pleased to hear your daughter is doing so well.

We knew not all was right with her breastbone from about the age of 8.
My husband has a mild case of pectus excavatum. The scoliosis diagnosis was a surprise. Since then I have found out one of my daughter's paternal uncles has scoliosis, not requiring treatment. My side of the family also have various minor bone and joint conditions but not scoliosis that I am aware of.
My daughter got her orthodontic braces at age 13 years and 4 months.
I quizzed her orthodontist since I wrote the post and I think he said a small lower jaw is often seen in scoliosis patients. A small lower jaw creates overbite with the top teeth and this is the main orthodontic problem for our daughter.
I also read an article which suggested all orthodontic patients be referred to a spinal surgeon for scoliosis checking! Our orthodontist said (and I agree) that is not necessary because many people now get orthodontic braces purely for cosmetic reasons, but he didn't disagree for genuine 'medical reason' teeth brace wearers. I am not sure that braces cause scoliosis, more that the person probably has tendencies toward skeletal 'abnormalities'.
I guess time will tell whether our daughter's curve increases or whether she is one of the lucky ones. Either way, we will be as educated as we can be.

Carol

[scoliospine]

Hey guys i have wanted to start a support group and website for the last 2 years and still want to do it.

I have recently got software for making websites but im looking for other groups as well that want to join or merge as i want to be a leading team member as i have big goals that i want to achieve involving scoliosis.

I want to make Victoria and Australia a scoliosis friendly/smart country like relay for life or cancer council.

Ways i plan to achieve that is to do public speaking for awareness and support others with scoliosis, fundraising for research and advancing treatment.

All questions, suggestions and advice welcome!

Or Facebook: Scoliosis Awareness and Support!
https://www.facebook.com/groups/415280738515584/

Cant wait to hear from everyone!

Thanks Nick!

[Outkast1972]

Hello all. I am the Dad of a 3yo with severe scoliosis. I started noticing her left rhomboid muscle was bulging out when she was about 6 months old. No one else in the family thought it was anything to worry about except me. I even mentioned it to the family Dr who said it will even out when she starts crawling. Then it become it will even out when she starts walking. Then at about 1yo he said her spine is curved. We where sent to the a hospital spinal unit and they monitored it for awhile. Then she was made a brace at 2yo. Now she is in a full body cast as her last check up showed her spine check up showed her spine had gone from 65° to 90° in a year.

We had a lot of trouble keeping her in the brace as she hated it and as she got older could take it off herself. We would often find it laying around the house and her Kindy teachers told us they would find it laying around the playground! We could only keep it on her for 5-6 hours on a good day so I guess that is why it wasn't working. So it is easier having her in the body cast, we don't have to battle to keep it on her at least. But the poor kid misses out on swimming/pool activities as well as baths/showers.

I found this site and thought I would join up to talk with others in the same situation.

Thanks,

C

[Eliz]

Thanks for sharing your story. You must have a little trooper! Life sure has dealt her a big hurdle.
My son has adolescent onset scoliosis which required posterior spinal fusion. Nearly one year on and going well.
Hope you have found a good specialist for your daughters ongoing care, second opinions are always a good idea even if only to confirm that you are having the best treatment.
I'm sure you will find some other families in your situation to chat with, this forum has really given me great support through trying times.
Good luck.