Back in the watching and waiting game

[Snoopy]

Hi All,

I am new to the site and am looking for some advice & support. My 14 yr. old daughter was diagnosed with scoliosis in 2006 w/ a 12-15* curve since then we were told to follow-up every 6months which we did, long story short we were also told she was done growing so there wouldn't be much progression, which is not true she then went to 26* again was told bracing was not an option....went to a differnt DR.on friday & was told she is now at 36* and also has Kyphosis which is moderate. I am very fustrated that we were told to wait so long and she is terrible pain. Can anyone relate or offer advice?

Michelle

Michelle,

I'm sorry to hear about your daughter's situation. Scoliosis is sometimes very frustrating.

Has your daughter had an MRI to rule out other issues? Some people do have pain caused by their Scoliosis, but if it were me, I'd want to know if there is an underlying cause. Do you remember what degree her Kyphosis is? Just curious what the doctor considers "moderate".

A little background on my daughter: Jamie was diagnosed at 12 y.o. with a 36* Scoliosis curve and a 79* Kyphosis. She was prescribed a brace, which she wouldn't wear, even though she was almost done growing. By the time she was 13 y.o. her Scoliosis had progressed to 46* and her Kyphosis was measured at 71* at which time she had surgery with a great outcome. Her hand x-ray had shown that she was done growing long before her surgery was done.

Please don't hesitate to get a third or even a fourth opinion. Remember that with multiple opinions you will get just that--multiple opinions. It will then be your job to figure out which doctor is the best doctor for your daughter. She needs to be seen by a pediatric orthopedic doctor who specailizes in both Scoliosis and Kyphosis. Good luck.

Mary Lou

[Snoopy]

Dear Mary Lou,

When you say that the "watching" hasn't gone away, is it just that you all are now aware that this is a lifelong problem that will need to be monitored?

That's the way I feel--we know that Paula has this problem and the surgery may not be the final solution. I feel it will be something that will always have to be monitored for the rest of her life.

Hi,

Hmmmm....how do I explain this. I always thought that once Jamie had surgery, she would have a few follow-up appointments and then we'd put her Scoliosis behind us. It didn't turn out that way. Turns out that Jamie's surgery wasn't like most Scoliosis surgeries. Because of the size of Jamie's pedicles, they weren't able to use screws. Will that cause issues in the future with a wire breaking? I don't know. Jamie developed junctional Kyphosis above her fusion which at one point her surgeon mentioned extending her fusion into her neck area. We didn't agree to surgery because we just weren't ready for that at that point. Thankfully, her Kyphosis had stopped progressing at that point. She also has a Spondolenthesis (sp?) which is located below her fusion. She is symptom free at this point. Will her fusion cause problems with that in the future? Again, I don't know.

For the first few years, Jamie was followed very closely. At her last appointment, her doctor told us it was safe to not see her for two years. She goes for that appointment in a few weeks. I'm curious as to how often she will be followed after this appointment.

Sorry for the long post. I hope and pray that Jamie's surgery was the final solution. I sometimes think that I'd like the assurance of Jamie's being seen periodically for the rest of her life just to have the assurance that everything is okay.

Mary Lou

[mishwz]

Michelle,

I'm sorry to hear about your daughter's situation. Scoliosis is sometimes very frustrating.

Has your daughter had an MRI to rule out other issues? Some people do have pain caused by their Scoliosis, but if it were me, I'd want to know if there is an underlying cause. Do you remember what degree her Kyphosis is? Just curious what the doctor considers "moderate".

A little background on my daughter: Jamie was diagnosed at 12 y.o. with a 36* Scoliosis curve and a 79* Kyphosis. She was prescribed a brace, which she wouldn't wear, even though she was almost done growing. By the time she was 13 y.o. her Scoliosis had progressed to 46* and her Kyphosis was measured at 71* at which time she had surgery with a great outcome. Her hand x-ray had shown that she was done growing long before her surgery was done.

Please don't hesitate to get a third or even a fourth opinion. Remember that with multiple opinions you will get just that--multiple opinions. It will then be your job to figure out which doctor is the best doctor for your daughter. She needs to be seen by a pediatric orthopedic doctor who specailizes in both Scoliosis and Kyphosis. Good luck.

Mary Lou

Hi Mary Lou,
A MRI was never even suggested and her Kyphosis is at 51*. The doc keeps telling us Scoliosis does not cause pain so continue taking Advil, but it does nothing and when do you say enough. Since the 2nd Doc my daughter is so self concious about her back and left shoulder being 2inch higher which I had noticed but kept that from her for this reason. I am so fustrated that nothing is being done JUST WAIT. The problem I am running into is that every Doc I take her to her in Connecticut will not go against what the other says, and unfortunatly do not have the funds to take her out-of-network with insurance. I have already spent over 3,000 for consults and as a single Mom of 3 with no support it is a catch. I have made a appt with Shriners but they can't see her till Aug. any suggestions?

Michelle

[Snoopy]

Hi Mary Lou,
A MRI was never even suggested and her Kyphosis is at 51*. The doc keeps telling us Scoliosis does not cause pain so continue taking Advil, but it does nothing and when do you say enough. Since the 2nd Doc my daughter is so self concious about her back and left shoulder being 2inch higher which I had noticed but kept that from her for this reason. I am so fustrated that nothing is being done JUST WAIT. The problem I am running into is that every Doc I take her to her in Connecticut will not go against what the other says, and unfortunatly do not have the funds to take her out-of-network with insurance. I have already spent over 3,000 for consults and as a single Mom of 3 with no support it is a catch. I have made a appt with Shriners but they can't see her till Aug. any suggestions?

Michelle

Michelle,

Jamie never had any pain with her Scoliosis and her doctor never ordered an MRI until we were preparing for surgery. Can you call the doctor's office (the one who said Scoli doesn't cause pain) and ask them to order an MRI?


I'm glad to hear your going to Shriner's. They have excellent doctors and as you know, the care is free. I would suggest keeping the August appointment, but try calling Shriner's from time to time (every day or every week if you want) and ask if they have a cancellation. It might get you in sooner.

Hang in there.

Mary Lou

[MissEmmyF]

Hi Mary Lou,
A MRI was never even suggested and her Kyphosis is at 51*. The doc keeps telling us Scoliosis does not cause pain so continue taking Advil, but it does nothing and when do you say enough.

Michelle

Scoliosis definitely causes pain! I suppose scoliosis along with some other contributing factor can be causing the pain, but scoliosis on its own can cause more than enough pain! I get so frustrated when a doctor, of all people, say that scoliosis doesn't cause pain. How can a twisted spine that is pushing around all the muscles supporting the spine NOT cause pain?