Can anyone share their stories about Scoliosis?

[LisaNY]

My younger dd, 13, has Scoliosis. Most concur it is due to rapid growth. She has grown several inches in the past year. She began a year ago with an 18 degree curve in her upper back, but now it has progressed to her lower back - giving her that typical "S" curve, and a notable bulge down the left side of her back. It appears to be a 25-30 degree curve now.

 

We have just been sent to a dr. that specializes in Scoliosis.

 

Can anyone share their story? Are we looking at surgery here? Bracing?

 

I am really upset right now. A year ago, I took my dd to the chiropractor, because she was having pain in her back. He sent us for x-rays, which showed the initial curve. He did not make that big a deal of it, and has been treating her chiropractically. Our insurance co. refused to pay for further treatments, which prompted me to see my orthopedic dr. He did not look happy when I told him we were seeing a chiro for this.

 

I feel *terrible*! I really trusted our chiro, and now I see that I should have gotten a second opinion from the start. Maybe another dr. could have prevented this curve from worsening. I am sick over this.

[readwithem]

Oh my. I'm sorry about this. I don't have any first hand experience, but this forum may be helpful -

http://www.scoliosis.org/

[JFSinIL]

My neighbor had the surgery as a teen, then bracing. My son has it, too - but not enough to do more than keep an eye on it (so far). I hope all goes well at the doctor visit.

[Sophia]

My 17 y.o. niece was successfully treated by a chiropractor for scoliosis.

 

Obviously each child is different and it may be that your dd needs an m.d., but it's not unheard of for chiro's to help people with scoliosis.

[BamaTanya]

She had a 53 degree curve, so the question was not "if" but "when" she would have surgery.

It is a serious surgery. Dd's went EXTREMELY well, she is 1.5" taller, and her recovery is going smoothly.

I think the decision is based on a combination of the severity of the curve and how much/quickly the individual is expected to grow (progressive worsening).

 

Please don't blame yourself. You were doing the best you could, and it's always possible that 2 professionals would disagree on the best treatment.

 

Do you have any specific questions? My dd would LOVE to weigh in on yours or your daughter's concerns! :)

[TraceyS/FL]

I have 2 with it.

 

My oldest is in a brace at night, it has stopped the progress of her curve while she completes her growth (she's been in it for almost 2 years now). They take xrays at her appointments ever 4-6 months to check on her growth. At this point she is about 75% done growing (she has started her period which is another sign they use to help them figure out where they stand).

 

She hasn't balked at the brace - she knows she wears it - it does its job.

 

#2 is in a watch phase, she is supposed to be on growth hormones - we figure her rapid growth on them is what kicked it off (it didn't cause it, just helped it happen). When we get her back on them (lack of insurance at the moment) she will be watched on a closer basis.

 

Both girls receive their care at SHriner's Hospital in Tampa, but the oldest started at another practice in Orlando - but that pesky insurance issue cropped up.

 

IT's very scary - but the awesome communication between our doctors has helped. I almost forget about that issue at times! LOL!!

 

Don't beat yourself up too bad mom, you did what you felt was right and trusted the professional.

 

:grouphug:

[5wolfcubs]

:grouphug:

I had scoliosis as a child -- it was discovered in 4th or 5th grade when I had an x-ray done to check for broken ribs after accidentally being kicked in gym class. I went to a chiropractor for several year to correct the problem. Never had to wear a brace or have surgery. Many medical doctors don't approve of chiropractors...so the response there doesn't surprise me. But the fact that the curve is worsening...time to try something new, without beating yourself up over it!

[LisaNY]

She had a 53 degree curve, so the question was not "if" but "when" she would have surgery.

It is a serious surgery. Dd's went EXTREMELY well, she is 1.5" taller, and her recovery is going smoothly.

I think the decision is based on a combination of the severity of the curve and how much/quickly the individual is expected to grow (progressive worsening).

 

Please don't blame yourself. You were doing the best you could, and it's always possible that 2 professionals would disagree on the best treatment.

 

Do you have any specific questions? My dd would LOVE to weigh in on yours or your daughter's concerns! :)

 

Thank you SO much! We will be meeting with the specialist on Tuesday. I am sure my dd will have questions then. Could my dd email your dd?

 

I really appreciate your help. :001_smile:

[lighthouseacademy]

I would not be upset with yourself. First off- most orthopedists have animosity towards chiropractors. That does not mean that the chiropractor did any harm.

Second, my chiropractor did in fact treat my scoliosis and prevent me from needing bracing etc. Also, some chiropractors are better than others. I have a friend in Bakersfield with severe scoliosis and she too has seen her chiropractor to avoid bracing and succeeded. So, don't beat yourself up. As a previous poster said- the fact that it is getting worse means it is time to try something new.

[Lolly]

My younger dd, 13, has Scoliosis. Most concur it is due to rapid growth. She has grown several inches in the past year. She began a year ago with an 18 degree curve in her upper back, but now it has progressed to her lower back - giving her that typical "S" curve, and a notable bulge down the left side of her back. It appears to be a 25-30 degree curve now.

 

We have just been sent to a dr. that specializes in Scoliosis.

 

Can anyone share their story? Are we looking at surgery here? Bracing?

 

I am really upset right now. A year ago, I took my dd to the chiropractor, because she was having pain in her back. He sent us for x-rays, which showed the initial curve. He did not make that big a deal of it, and has been treating her chiropractically. Our insurance co. refused to pay for further treatments, which prompted me to see my orthopedic dr. He did not look happy when I told him we were seeing a chiro for this.

 

I feel *terrible*! I really trusted our chiro, and now I see that I should have gotten a second opinion from the start. Maybe another dr. could have prevented this curve from worsening. I am sick over this.

 

Stop beating yourself up. Even if you had gone to an orthopedic earlier, you would probably be right where you are now.

 

Dd's story. She was having pain in her shoulder/back at 8. Took her to orthopedic doctor. He said it was because she was a swimmer and had very loose joints. Dismissed us telling me to give her 3 or 4 ibuprofen whenever it hurt and before practice. He said if she swam it was going to hurt. Decide if swimming was worth the pain it was causing. (Not an option for this particular child. Swimming was her love.)

 

Several months later, and after a break from swimming, the pain was even worse. I decided to take her to a chiropractor. He found a slight scoliosis that the orthopedic had missed. He started treating her for it and her pain went away. Then, he retired. Pain came back. New chiropractor just wasn't as good. Found one who could manage her pain. It still wasn't gone, the curve was still there. It never had gone away. He set her up with a massage therapist. With regular massage and chiropractic, the pain was kept at bay. As she approached 13, her pain intensified again. I also noticed the curve worsening. She was just starting her major growth spurt. Had not yet started menstruating. I took her to a different orthopedic doctor, one who specialized in scoliosis. He gave her an official dx of scoliosis. Curve on top and bottom of about 25 degrees. Said that shouldn't be causing any pain. (Doctors are often the stupidest people on earth.) Told me that her lack of menses was due to her being an extreme athlete and that her growth was probably about over. After all, she was about to turn 13!!! He didn't listen when I told him that if genetics had anything to do with it she was probably about to grow and should start menses sometime between 13 and 14. Nah, she was 5'3" and might grow a tiny bit more. Surprisingly, he said to continue the chiropractic. Massage therapy was greatly encouraged because her pain, according to him, was being caused by her type A personality (which she does have). He also informed me that her migraines were just headaches. Okay. (They are migraines, no question about it.) Take prescription strength of ibuprofen 4X a day. Come back in 6 mths for reevaluation. If the curve was worsening they would consider a brace, but at her age it was doubtful. And, KEEP SWIMMING it is the best possible thing she could be doing.

 

Within the next 3 mths this child had grown 3 inches and started menses. Now, less than a year later, she is 5'8" tall and seems to be slowing down a little. The curvature hasn't worsened even with the growth. She still sees the chiropractor every two weeks. We have a special payment plan worked with him to keep our cost down. The massage therapist has turned out to be a wonderful friend to us. (He also homeschools his kids.) We have special arrangements worked out with him to keep our cost down also. He comes to our house every week. She still has pain. She still has a curve that is noticeable. She is still growing.

 

My take on scoliosis. If they are going to have it, they are going to have it. The right exercises, swimming is particularly good, help to keep the bones where they are supposed to be. Chiropractic doesn't hurt it. Sometimes it may help with the discomfort and can help keep flexibility in the bones. Orthopedic doctors mostly just keep a watchful eye out for it becoming extreme. It sounds like you took your daughter in right as it was getting to that point. From what I have researched, the bracing is sometimes beneficial and sometimes not. Most orthopedic doctors don't care for chiropractors. Bracing is usually used for girls who still have a lot of growth expected (not started menstruating). The rate of curvature for bracing to be considered is usually between 25-30 degrees and is dependent on how much more growth is expected. Some doctors tend to brace when others would not. Some doctors don't know how to listen and think that they are the all knowing God. (Sorry, couldn't keep myself from saying that one.)

[Jenny in Atl]

We are over due to go back (but have an apt. in a couple weeks) for Mac's re-eval. Her curve was ~18-22. I think it may be worse, or I'm just noticing it more. She did start her monthly last winter, so I'm hoping it has slowed her growth. ::grouphug::grouphug:. You are not alone in feeling guilty. I have it too, but never did anything for it. I was kinda hoping it would be the same for her. :confused

[Tutor]

I have mild scoliosis that I have never received treatment for. I sometimes have lower back pain that I believe is related but not severe enough to warrant surgery to correct anything. Also, having surgery at this stage in my life (I'm 36) would leave me with a limp. My body compensated for my scoliosis by allowing one leg to grow almost 1/2" longer than the other and my hips are slightly crooked. (It's a real pain trying to hem a skirt. Let me tell 'ya. :001_smile: ) If I fixed my back, the difference in my leg lengths would leave me with a limp.

 

I do have to consciously try not to slouch since my scoliosis causes me to hunch slightly and to drop my right shoulder some. My doctor actually thinks that my 40 lb backpack in high school contributed a great deal to the curve in my spine.

 

I would keep on top of your child's scoliosis as she grows, and if her doctor thinks she needs surgery, get a second opinion just to confirm.

 

ETA: LOL! I just reread my description and I made myself sound like I live under opera houses and ring bells for a living. You probably wouldn't know I had scoliosis if you looked at me. The characteristics I described are more things that I am aware of and notice rather than other people.

[lighthouseacademy]

 

I do have to consciously try not to slouch since my scoliosis causes me to hunch slightly and to drop my right shoulder some. My doctor actually thinks that my 40 lb backpack in high school contributed a great deal to the curve in my spine.

 

I know mine did... the joke in our house was that my backpack was the anchor...

[LisaNY]

I have mild scoliosis that I have never received treatment for. I sometimes have lower back pain that I believe is related but not severe enough to warrant surgery to correct anything. Also, having surgery at this stage in my life (I'm 36) would leave me with a limp. My body compensated for my scoliosis by allowing one leg to grow almost 1/2" longer than the other and my hips are slightly crooked. (It's a real pain trying to hem a skirt. Let me tell 'ya. :001_smile: ) If I fixed my back, the difference in my leg lengths would leave me with a limp.

 

I do have to consciously try not to slouch since my scoliosis causes me to hunch slightly and to drop my right shoulder some. My doctor actually thinks that my 40 lb backpack in high school contributed a great deal to the curve in my spine.

 

I would keep on top of your child's scoliosis as she grows, and if her doctor thinks she needs surgery, get a second opinion just to confirm.

 

ETA: LOL! I just reread my description and I made myself sound like I live under opera houses and ring bells for a living. You probably wouldn't know I had scoliosis if you looked at me. The characteristics I described are more things that I am aware of and notice rather than other people.

 

LOL! I was wincing at your description of yourself!

[LisaNY]

A blessing on all of your heads for your encouragement - It meant so very much to read your responses. What a bunch of dear ladies you are!

 

Thank you - Thank you - Thank you! :grouphug::grouphug:

 

I will post an update once we see the dr.

[Peela]

I have moderate scoliosis but I have never had any treatment other than chiro treatment- and self treatment, which for me has always been Yoga in order to keep my spine supple and healthy as i can. if I dont do my Yoga, i get stiff and then problems start to happen- pain.

The chiros can't actually fix scoliosis, but its not necessary to always fix it. I personally wouldnt have surgery or have my kids have it unless it was pretty bad.

[PariSarah]

It didn't and likely won't require treatment.

 

My doctor did say that bilateral exercise (something where you're using both sides of the body relatively evenly, like swimming, cycling, running, walking) would help keep it from degenerating by keeping the muscles on both sides equally strong. That was 15-20 years ago, however, and I don't know whether things have changed. You might ask your specialist for sports/exercise recommendations, in addition to whatever else s/he recommends.

[gardenschooler]

Please stop beating yourself up. I think I did enough of that for both of us.

 

They probably would have just watched her during that time, anyway. Usually it has to be around where she is now for doctors to put her in a brace (which doesn't always slow the progression - I agree with the sentiment that if they're going to have it, they're going to have it).

 

My dd's progressed very rapidly. The time between my catching it and her surgery was longer than I would have liked, too - allowing it to progress at a very alarming rate. It was unreal, the difference in the curvature each time we went in for x-rays.

 

I wouldn't even worry about surgery right now, and your doctor probably won't recommend it unless it gets a good bit worse. They might put her in a brace, and still monitor her.

 

:grouphug::grouphug::grouphug:

[anissarobert]

Hello,

 

You are getting such a great responses, that I think I will have my dd read them so she realizes scoliosis is more common than we thought!

 

All of the people who have told you not to beat yourself up are right. I can't count the number of times I have berated myself for not noticing my daughters spine.

 

She was a competive gymnast and very athletic. She won the state championship in March two years ago and her back started hurting. We thought she had pulled a muscle or something. When I took her to the doctor he diagnosed scoliosis and recommended surgery immediately. She was still growing rapidly and in fact her curvature increased 9% in one month's time.

 

She had surgery two years ago in July. It was not fun, but she recovered quickly. She ended up having 12 of her vertebrae fused and metal rods inserted on both sides of her spine.

 

Today she is a ballerina, dancing on pointe 5 times per week. She was unable to go back to gymnastics after the surgery, but she began to take ballet lessons and there was no stopping her.

 

There are things that she cannot do, but unless you see her scar, the only thing you would notice is her perfect posture. I know she would be happy to talk to your daughter if surgery should become necessary. I did a lot of research and I'm happy to answer any questions. There is quite a bit of good information on line also.

[gardenschooler]

 

She had surgery two years ago in July. It was not fun, but she recovered quickly.

 

That's exactly when my dd's surgery was! So you and I were both going through it at the same time. I got so nervous, I was putting the phone in the refrigerator.

 

Today she is a ballerina, dancing on pointe 5 times per week. She was unable to go back to gymnastics after the surgery, but she began to take ballet lessons and there was no stopping her.

 

Not being able to do gymnastics or any kind of cheerleading was disappointing to my dd. I guess ballet would be a good substitute. Doesn't she have some trouble with bending and such?

 

There are things that she cannot do, but unless you see her scar, the only thing you would notice is her perfect posture.

 

Same here.

 

Here is a blog post I did awhile back for Tanya to see my dd's 'after' posture. (Excuse the wrinkles - it looks like she slept on an i-pod!)

[LisaNY]

Bless you, thank you all again, from the bottom of my heart. I wish I could give each and every one of you a big hug. Your kindness has touched me deeply.

 

I was only able to rep about half of you, and then I ran out.

 

Once we see the dr. on Tuesday, I will be back here with questions.

 

It is such a comfort and reassurance to know that there are people right here on this board who have been through this. Words cannot express how much that means to me.

 

:grouphug::grouphug::grouphug:

[GreenKitty]

Deffinalely don't beat yourself up about it. I have scoliosis and have only seen a chiropractor for it. I've never had surgery. Though, I do always tell people I should actually be at least 2 more inches taller. Also, as far as Doctors are concerned, the ones that I know do not like even to hear the word 'chiropractor'.

[Remudamom]

Another mild case here too, no treatment needed. My best friend had to wear a Milwaukee brace 24/7 for years. She has the best posture of anyone I know!

[Guest Virginia Dawn]

I wore a brace for several years, then had the surgery in the early 1970's. Please don't be too hard on yourself. Sometimes the curve never progresses, in other cases it goes slowly/quickly. My doctor told my parents that mine would worsen during puberty, it did, and I had the operation. It's amazing how fast the recovery time is now; I was out of school about 6 weeks and in a body cast for many months. My older sister spent an entire summer in bed with a full body cast.

 

Dot, I know this is a long shot, but did you live in Florida as a young girl? A friend of mine named Dot had scoliosis.

[anissarobert]

Hi,

 

You guys might not see this, but I didn't go online all day. It was over 100 degrees here today and the room with my computer does not have A/C!

 

GardenSchooler-I wish I had known you two years ago. It was such a hard time. It would have been great to e-mail!

 

Well at least LisaNY has the hive mind now.

 

My dd has the support of her ballet teachers and they modify some moves so that it looks like she is bending more than she is. They also change the moves for her when she just can't do them. It is a small studio with several homeschooled high school girls. She keeps up with the other girls at the pre-professional level, even though she won't be a professional. (Of course, how many girls become prima ballerinas anyway?)

 

Lisa-please feel free to ask me anything. This is such a supportive community. I'm so glad I've found you all.

[MyThreeSons]

I had pneumonia and the radiologist noticed the spinal curvature while reading a chest x-ray. He went back and looked at older films (I'd had pneumonia several times) and was able to put together a timeline of progression.

 

We were blessed to get in to a top-notch orthopedic surgeon. He literally had patients who flew in to see him. He wasn't taking any new patients, but my Mom had seen him when she was a teen, so she was able to convince him I shouldn't be considered a "new" patient, but a family member of an existing patient. Gotta love a Mom who goes to bat for her kid!

 

His approach was revolutionary at that time (early 70s). It was all based on Physical Therapy, stretching, and exercise. The idea was to get the muscles to realign the spine. I did wear a brace for a couple of years, but it was hidden under my clothes, and was actually for the kyphosis ("hunchback curve") rather than the scoliosis.

 

I still have a slight Scoliosis curvature, but it's not a problem.

[Harriet Vane]

They said it wasn't that bad and just to "keep an eye on it."

 

That was not good advice at all.

 

Over many years and many problems (all of which are considered "not that bad") the one thing I have learned is the importance of exercise for scoliosis. There is absolutely NOTHING better for maintaining mobility and keeping pain to a minimum. If you child was diabetic, you would make sure he/she monitored her condition and took insulin, right? As someone with scoliosis, your child has to consider exercise to be her "medicine" and stay disciplined about this for the rest of her life.

 

In my case, I have developed arthritis and bone spurs in my spine as a result of scoliosis. We are also now hypothesizing that some knee/hip issues I struggle with are as a result of my scoliosis because my body compensated for the curved spine by pushing my pelvis forward on the right.

 

I have found that a combination of chiropractic care and AGGRESSIVE exercise is the best way for me to maintain mobility (particularly in my neck) and be pain-free.

 

I cannot speak to the question of surgery--my own scoliosis is not that severe. I do have a friend who had the surgery as a teen to fuse part of her spine, and it made her life much, much more comfortable. It's a viable option, and one that should be carefully researched.

 

Whether or not your child has surgery though, you still need to embrace exercise wholeheartedly. Find a physical therapist who has worked with scoliosis patients AND who approaches exercise aggressively (many physical therapists, oddly, do not approach pt very athletically). Plan to work with this person for a while at first to get a good regimen going. Then negotiate with that person to just check in once or twice a year for an assessment and an exercise "prescription."