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marylatimer
08-02-2004, 11:52 AM
Please help! My son was just told last week that he has scoliosis. We are very scared and worried. Can some tells anything that we can expect. He has a 48 degree curve. The doctor wants to do surgery, but I suggested he could try the brace to stop this curve. If any has worn the brace and had success with the brace please let me know so I can assure my son to stop worrying and maybe with all gods blessing he won't have to have surgery. He is only 13 years old and very atheltic, so this is very hard for him to swallow. I would appreicate any one who has information to send me so I can educate my self and my son about this condition and what treatment is available instead of surgery. I really would appreicate this very much. Thank you all!! and God bless you all!

Carmell
08-02-2004, 12:12 PM
Hi - Welcome to the board.

First, take this one step at a time. Scoliosis is rarely an emergent situation. Surgery may be recommended, but you absolutely don't need to rush into this. Make sure you have at least one other opinion, by a ped. ortho who specializes in scoliosis in teenagers. Also, being very active is a good thing for most scoliosis patients. It helps keep the muscles of the back strong and helps to support the spine. Find an orthopedist who will help you answer your questions. Talk about his activity level and see if there is anything specific that would help his back. Keep asking questions.

I'm assuming your son has idiopathic scoliosis (meaning no known cause - the bone structure of the spine is healthy, just curved). I'm also assuming he's generally healthy - no other medical issues that would complicate the scoliosis issues. If this is the case, I would think he needs to have 6-12 months between checkups, before agreeing to surgery. During those months, getting another opinion and learning about scoliosis is important. I'm sure others here can help by sharing experiences.

Good luck and I wish you the best.

leyvtl
09-06-2004, 11:50 PM
Hi,
I am 18 years old and was diagnosed at the age of 14 with scoliosis. When I was first diagnosed back in 2001 I was already in between the 3rd and 4th stages of scoliosis. My doctor said that the degree of curvature which was about 48 degrees was too advanced for a brace so I had surgery 5 months later. Since then I have had 2 other surgeries. Three years after my 1st I started curving again so my doctor put in 2 more rods (I already had 1). Well...This past July I had my 3rd surgery because two of the screws from my first rod were pressing against the main artery to my heart (the aorta), so they went in and took the first rod out. Now my doctor is possibly thinking about removing the other two in January of next year. Surgery is not fun, but you gotta do whatcha gotta do... God Bless

derxz
09-08-2004, 02:37 PM
Tiffany, that is craziness. I went through one scoliosis surgery and that was enough for me. If you need anyone to talk to, you got your man. ~derek

leyvtl
09-08-2004, 05:09 PM
Thanks derxz,
I will have to take you up on that sometime. Its cool to talk to people who have been through the same thing I have.

mommy2curved1
03-27-2005, 09:51 PM
Mary Ann
My five year old son was diagnosed with congenital scoli- a double thoracic curvature. He was braced to prevent further curvature. The upper curve is getting worse after almost a year of bracing. He wears a Milwaukee brace. It is at 47 degrees and tomorrow the doc will tell us if he is a candidate for surgery. He is six and in kindergarten and he is doing very well for all the questions he has to answer. I am hoping there is some other alternative other than surgery. If you want to email me privately to discuss things further it is Miranda386@msn.com. This is our first time with a child with such a problem. I personally am very worried and scared. I am not very well informed as of yet but there are a lot of educated people on here. Don't hesitate to ask anyone, okay?
Respecfully,
Miranda

susannajon
03-28-2005, 06:10 PM
Hi Mary,

My daughter was diagnosed at 10 1/2 with a double major curve at 28 and 35 degrees. Despite treatment, it progressed over three years to 60 and 40 degrees, and she had surgery 20 days ago. I know exactly what you are feeling now, and it is complete panic, and grasping for anything other than the terrifying prospect of spinal fusion.

The bad news is that your son has been diagnosed with a serious problem, and he might need major surgery. The good news is that you have found a wonderful and supportive forum with lots of parents who have walked in your shoes, and will support you every step of the way.

My first suggestion is that you get several opinions from nationally recognized orthopedic surgeons who specialize in scoliosis. I have done a huge amount of research, and would be glad to offer some names of people to talk to. Just let me know what part of the country you are from. Feel free to send me a private message or e-mail if you would prefer.

My thoughts and prayers are with you and I will do anything I can to help.

nikyergen
03-28-2005, 08:29 PM
Mary,
We all understand your fears. I have three daughters, all with scoliosis. My 16 year old just had surgery on 3/15/05, and is doing very well. She had an 88 degree curve. She was fused from T2-L2. The doctor expects a full recovery and for her to be able to start basketball practice next November. My 14 year old has a very mild curve and is just on the wait and watch right now, and hopefully forever. My youngest daughter, 12 years, wears a brace for her curve. My 16 year old would of loved to have a chance at a brace first, but it wasn't a possibility because she was done growing. My youngest daughter hates her brace with a passion. It is a continual battle everyday to get it on her. My middle daughter is hoping to never have to deal with either and hopes her back doesn't get any worse.

You may want to check out Shriners Hospital. They do A-Z on pediatric orthopedic work. The best part is that the specialize in pediatrics.

My prayers and thoughts are with you as you venture through this scary time of life. Please keep us posted on how you and your son are doing.

'til later,
Nikki

cub2007
03-28-2005, 10:34 PM
Mary,
i was diagnosed with scoliosis at age 13 with a 47 degree curve. we agreed to go ahead with the surgery and scheduled it for about six months after the initial diagnosis. When i went for pre-op my curve had progressed to 57 degrees! I am 15 now and am very happy with the outcome of my surgery! I don't mean to scare you about how much my curve progressed in those short six months but it is common. Also, the scoliosis can lead to lung problems and other problems: for example, i only had 64% of my lung capacity because of the curve, and just recently, i had was found to have a small heart murmur and when they tried to do the ultrasound, the person had a hard time finding the right valves because they said the scoliosis had shifted my insides a bit. I really don't mean to scare you but if you do decide to go ahead with the surgery, your son will be back to normal within 6 months to a year. I wish you the best of luck
Ali