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View Full Version : Diagnosed last summer, and I have a few questions...



Susannah
02-07-2006, 09:29 PM
I was diagnosed with Scoliosis (Just under 30 degrees) at my local doctor's office over the summer, and they routed me to University of Iowa, which said I had Kyphosis(Upper back, 50-60 degrees), also. It didn't have that much pain, although I could definately tell I had a back problem, and many people would yell at me to sit up straight (I can't.)

My appointment was supposed to be in January for my next x-rays, but instead I couldn't make it, and now it is in late April (Just after Easter, I think). But lately, I've been having back pain.
I'm also having other ailments that I don't know if they are connected to the back or not. Every once in a while, my nerves seem to fail in my right knee. It's not like my knee goes to sleep, I'm not putting much/any pressure on it, and it doesn't tingle when I move it. I just can't feel it. I can still move it, though.
Does anyone know if that has anything to do with my back, or if it's something different entirely?

Also, I was wondering what are the pros and cons about just waiting and watching at my stage, or getting a brace. I have a list of stretches from U of I that I do every day, but they don't seem to help and I'm getting quite discouraged.
Any ideas/comments?

Sue_83
02-07-2006, 10:35 PM
Hi there Susannah!
first of all how old are you?
im 22 and i found out i scoliosis when i was 15 almost 16. and the doctors just said i was too old for the brace, they said I could have a Surgery done but I didnt really like that option. Plus i did not really have any pain at time. and now i have seen the days i work real hard or one of thoes that seem to never end ( a long day) at the end of the day i feel the pains in my back. But then again this can happen to any normal person after a hard day at work. So i try not to worry so much.
Also you talk about some kind of stretches or exercise you were given? Can you show or tell me where i can look for such a thing. Im thinking about taking some kind of Voga classes to help the pain.

Snoopy
02-08-2006, 08:20 AM
Susannah,

My daughter had surgery 14 months ago to correct her Kyphoscoliosis (she has both Kyphosis and Scoliosis) and before she was diagnosed, her dad was always walking up behind her and pulling her shoulders back and telling her "chest out, shoulders back" and her reply was always "I can't". The day Jamie was diagnosed, her doctor told me he was going to yell at her for her bad posture but after checking for Scoli. he was glad he didn't.

At the time of her surgery, Jamie's Scoliosis was about 46* and her Kyphosis was about 71*. She never had pain.

You asked if it would be wise to watch and wait at this stage. Hmmm...that depends on several things. Since you are going on 15, I assume you've already started your period. (sorry to have mention that) Usually, most girls continue to grow for up to 2 years after the start of their period. During a growth spurt, Scoli./Kyphosis could progress, so it needs to be watched closely. If you are done growing already, the Scoli./Kyphosis might not progress. For the most part, doctors will consider surgery to correct Scoliosis once it gets to be between 40-50*. I'm not sure what degress most doctors would consider surgery for Kyphosis.

I'm not sure how helpful I've been but please know that Scoliosis/Kyphosis usually isn't an emergency issue. However, if you are having continued back pain, you might want to have a parent call the doctor's office and ask if they could get you an appointment sooner than April.

If you want to talk to Jamie, feel free to e-mail her at Spinesupport05@aol.com.

Mary Lou

Susannah
02-08-2006, 08:24 AM
I'm 14 now, my birthday's in July.

For my stretches, they had me get this foam roll type thing, that was the length of my back. I'm supposed to lay on it every day, stretch out, and use excercises to loosen and straighten my back. Simple ones, like moving your arms and legs slowly up and down, that sort of thing. There's a website I just found that has a more detailed explanation on it> HERE (http://www.backandbodycare.com/home/other/foam_roller.htm)
I also have three other stretches, but they require me to keep my back perfectly straight when I do them-And I can't, not as well as they want me to.

When they took my x-rays, they said I still had some growing to do. They said how they knew, but I forget exactly what they said.

cherylplinder
02-08-2006, 06:20 PM
When my daughter's scoliosis began to progress, she began to complain of more back pain. I notices some physical changes, (uneven shoulders), but told myself things could not get bad that fast! ( THey can change rapidly)You are the best judge of what's going on with your body. IF you call for the doctor's nurse, tell her you are experiencing some physical changes that you are concerned with , and ask her to work you in ASAP, POLITELY PUSHING to let her know you don't want to wait; she will probably work you in. Sometimes you have to stand your ground, firmly, but in a very polite way. i.e. " I am really concerned and feel that I need to be seen ASAP. I really appreaciate your help." You only have to go that far if she doesn't help you immediately. Yes, this is not an emergency, but scoliosis CAN change rapidly. My daughter, diagnosed at 8, remained unchanged until 10, at which time her curvature increased by 19 degrees.(19 to 38 degrees in the past year)(5 degrees in 6 months)(9 degrees in 4 months)(plus 5 degrees in the past month) The changes are important. Politely , of course, don't let them back you down-you are a paying customer of health care!
I'm not an expert, but there's my two cents! I would politely insist that I need to be seen because YOU REALLLLLLY DO KNOW WHEN THINGS ARE HAPPENING TO YOU!!!!!!!!! It's OK to believe what you feel! It's OK to demand what you need! NICELY OF COURSE!
GOOD LUCK!!!!!!!!!! I will pray all goes well.

BlueCrystalMan
02-08-2006, 08:39 PM
Susannah... personally I would push for an earlier appointment because of the knee issue. I'm not a doctor, but from all that I read, it is possible that the curve in your spine is starting to affect the way the nerves traverse the body. Everyone is correct when they say scoliosis isn't an emergency, however, if you're starting to experience health issues, its time to step up the urgency.

Please read the SpineCor thread in the bracing section. My son's 24 degree top curve dimished five degrees immediately as soon as they put the brace on... again, I'm not a doctor, but that reduction COULD eliminate what you're experiencing in your knee.

I'm here for you if you have any questions or concerns. mark@bluecrystalsoftware.com

Carly_16
02-08-2006, 08:53 PM
I have some pain other than back pain too. I don't know if it has anything to do with scoliosis, but I have chronic joint pain. But they don;t swell or anything?

Susannah
02-08-2006, 11:13 PM
Susannah... personally I would push for an earlier appointment because of the knee issue. I'm not a doctor, but from all that I read, it is possible that the curve in your spine is starting to affect the way the nerves traverse the body. Everyone is correct when they say scoliosis isn't an emergency, however, if you're starting to experience health issues, its time to step up the urgency.

Please read the SpineCor thread in the bracing section. My son's 24 degree top curve dimished five degrees immediately as soon as they put the brace on... again, I'm not a doctor, but that reduction COULD eliminate what you're experiencing in your knee.

I'm here for you if you have any questions or concerns. mark@bluecrystalsoftware.com

After reading the SpineCor page, and checking out the website, I'm liking that option much more than the hard, inflexible braces. I'm yet another dancer, I love to move and would hate to be rigid in a brace all day.
Sadly, it says their closest treatment center is in Chicago, for me. I wish it was closer.

Thank you, everyone, for your help. :)