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scoliosiscared
01-11-2006, 07:05 PM
I went to a scoliosis specialist on December 12th and I don't go back until June 12th and I'm scared that it will get worse before then and I won't have a chance to get a brace, I'll go right to surgery. Has that ever happened to anyone?? Does anyone have any advice? If you do I would appreciate it.


Alyssa

Joe's Mom
01-11-2006, 08:37 PM
My 16 year old son, whose scoli is now at 45-47 degrees, went for almost 3 years where it stayed at 28 degrees. We really thought it might just be there and never change (sometimes that is the case).

Between 15-16 it did start to change. In 6 months, it went from 28 to 35 degrees. He started wearing a brace then. In another 4 months it went from 35 to 45-47 degrees. He continues to wear the brace and we go back in March (another 4 month interval) to see if there has been any more progression and as soon as he is in the 50 degree range surgery will be likely.

Sometimes the curves progress and sometimes they don't. It is idiopathic, so no one really knows for sure.

Try not to worry too much.

MATJESNIC
01-11-2006, 09:16 PM
Joe's Mom,
when Joe's curve was progressing, do you remember how much he had grown during that time period. when it stayed the same for 3 years, how much had he grown during that time? I know that no two kids are alike, but I am just curious. My daughter has grown about an inch and a half since bracing 4 months ago. Her curve has measured a decrease of 5 degrees. I know there is always room for error.
Melissa

tmom
01-12-2006, 11:30 AM
Judging from my sonís experience I would say: do not wait, there shouldnít be such a thing at all with scoliosis. I donít know how big is your curve now, but I would try something: at least targeted exercises, yoga, swimming... (I know many people here donít believe in all of this, and I am no expert, but do something), or (if you can afford) maybe Spinecor brace.

Iíve been reading this forum for a while, but this is my first post, just canít be silent because I think about it every day: what if when my sonís curve was small we didnít wait as we were told, maybe now we were not be at the edge of surgery trying desperately avoid it.

By the way, he is wearing Spinecor now, he started couple weeks before MATJESNIC daughter.

Tatyana

Mary Lou
01-12-2006, 12:31 PM
Alyssa,

I saw that you are from PA. Just wanted to let you know my daughter and I run a support group that meets in Hershey, usually monthly. If you would like more information feel free to e-mail us at Spinesupport05@aol.com.

Mary Lou

matt
01-12-2006, 10:02 PM
Hi Alyssa. The first time that I saw my surgeon, he told me that I needed surgery because my scoliosis was 40* and my Kyphosis was 80*. So, dont worry, youre not alone. I wondered for awhile why I didnt have the option to brace, but, then after I had surgery, I was happy because I learned how much pain I was in and how much the surgery was worth not going into bracing. So, dont worry, it is probably for the better. Just email or PM me if you have any questions for just want to talk. Talk to you soon! Ross

cub2007
01-12-2006, 11:02 PM
I was diagnosed when I was 13 and my scoliosis was 47 degrees, my doc decided that we should just do surgery adn by the time my surgery was scheduled which was six months later, my curve was 57 degrees. In the end, I think it was better to just have the surgery because I don't think I would have kept up with the brace, and just having the surgery was less obvious than having to wear a brace which avoids alot of questions from classmates.
Good Luck!
if u have any questions feel free to ask!

The Slice
01-13-2006, 05:53 AM
scoliosiscared, You haven't told us whether there were any results from the visit in December. It's likely that if they told you you didn't need to go back until June, that it is just a waiting game and that your curve is not that severe. You can get help from your mother, or a sister if you have one, and have them take a look at you now, and then watch to see if there appears to be any changes in your shape. Things like, whether your shoulders or hips are uneven and whether they are getting worse, If you have a rib hump, whether it's getting worse. The best thing is to make sure from the specialist what signs or symptoms would indicate that you would need to see them earlier. Talk to your folks, they may already have that information, if not, ask them if it would be okay to call and ask. The nurse may be able to answer some of your questions. Good luck.

Joe's Mom
01-13-2006, 09:56 PM
My son was late to start his growth spurt . . . during the time his curve seemed stable at 28 degrees he grew very slowly . . . when he began his major growth spurts at around 15, that is when the curve progression started. His feet just stopped growing in the past 6 months and I was told in the past that after the feet stop growing, they have about another 3 years of adding height, so now at 16 1/2 he still has a lot of growing to do and his curve is progressing in turn. Some boys are later to start their growth spurts and that is what makes scoliosis for them a different experience than what is seen in girls. I would say that from about 15 1/2 to 16 1/2 he added about 2 inches; in the past 4 months he has added at least another 1-2" and he has more inches to go. I also think that if his spine were straight now he would be almost 6' tall . . .he measures different heights now at various times of the day, but averages about 5'8" to 5'9" tall with the curve.

So it does seem in his case the progression goes hand in hand with the growth.

scoliosiscared
01-14-2006, 11:28 AM
my curve is 17 degrees, and the doctor said im mostly done growing, so thats good.THanks to everyone for their help.

ALysSA

lindsay
04-06-2006, 04:37 PM
hey alyssa,

im 15 and in 6 months my curve went from 17-45 degrees. so i had no time for bracing and im having surgery in two months. i would like to talk to you on how your doing, and if you have any questions im here for ya! email me at lroyek@yahoo.com. feel free to!

<3 lindsay

ps i know what your going through!

scoliXsurvivor5
05-02-2006, 09:34 PM
my doctors never even mentioned a brace. i went straight to surgery. its probably best, because most braces make no progress for curves over like 15..haha



good luck

Jadey
05-06-2006, 05:24 PM
I'm going through the same as you, my appointment is in November and I fear my back has got alot worse. They are planning on discharging me and I'm scared if my back will get any worse afterwards.

The doctors know what they are doing, that's all I can say.

cherylplinder
05-10-2006, 12:07 PM
Jadey,
If you call and tell them that your syptoms are progressing, i.e. shoulders more uneven, hump larger, hips more uneven, more pain, any of that, they will see you sooner.
You are the best judge of what is happening to you. My daughter's scoliosis progressed almost 20 degrees in a few months.
Get them to check you again now. They may decide to brace you.
Hugs,
Mrs. Linder

Jadey
05-12-2006, 05:12 PM
I've told my Mum, she thinks I'm paranoid. I can't an earlier appointment then November because with the NHS going through a tough time it's too difficult.