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View Full Version : Back in the watching and waiting game



Pooka1
05-18-2009, 01:17 PM
Move over, CD.

I just asked my kid if she was wearing the brace and she told me she had stopped about a month ago.

I told her that was okay.

She was stable the last six months and is almost done growing.

It's a defensible decision.

concerned dad
05-18-2009, 02:13 PM
Well, there is plenty of room in the “activism” camp:rolleyes:. It was a weird feeling the other day when it dawned on me that I was the only person here not bracing my daughter. (With our doctors blessing I should add). Had we caught it sooner it would have been a different story perhaps. Had we achieved a better (any?) inbrace correction with the SpineCor she probably would still be using it.

The thing about watching and waiting for a child our kids age (my daughter is 14.5, not sure how old your daughter is) is that by the time you're done watching, it's too late to do anything. :(

Pooka1
05-18-2009, 03:44 PM
CD,

I understand exactly what you are saying.

My daughter is 14.5 also.

Some things that make my daughter's decision to lose the brace a defensible one include the ones you mention plus she likely does not have AIS, we know the outcome of her ID twin (fusion), and it is clearly better to get this surgery as a kid than as an adult. Given that, she really should have lost it sooner in my opinion.

Onward with her life.

Christl
05-18-2009, 04:20 PM
Hi Sharon and CD. I never braced my daughter. We caught her worst curve at about 41 degrees at 12.75 years old and then it was 50 degrees at 13.25 years old. Since then it has held steady and she is 15.25 years old now. May I ask what your daughters curves are now?

Pooka1
05-18-2009, 04:33 PM
Hi Sharon and CD. I never braced my daughter. We caught her worst curve at about 41 degrees at 12.75 years old and then it was 50 degrees at 13.25 years old. Since then it has held steady and she is 15.25 years old now. May I ask what your daughters curves are now?

Wow that's an interesting trajectory.

Savannah is now 5* down from 58*.

Willow is now 36* - 40*.

concerned dad
05-18-2009, 05:15 PM
My daughter is somewhere between 34 -38 (with 34 being the most recent xray 1 month ago). The 34 was preceeded by two 38's 4 and 6 months prior. We took the most recent reading of 34 to suggest the curve may not be progressing. (IE, we didnt really think it went down, rather likely within the measurement error range).

34-38 is not a good place to be upon entering adulthood. But it is what it is. If we brace her, we can HOPE that it stays the same. If we dont brace her, we can HOPE that it doesnt progress.

Christl
05-20-2009, 01:24 PM
Hopefully those curves stay put. :) Watching and Waiting is definitely stressful. This is always in the back of my mind. We are going to proceed with surgery in July. For some strange reason I feel that the watching and waiting won't go away. I hope it does, but I fear it won't.

Pooka1
05-20-2009, 04:16 PM
Hopefully those curves stay put. :) Watching and Waiting is definitely stressful. This is always in the back of my mind. We are going to proceed with surgery in July. For some strange reason I feel that the watching and waiting won't go away. I hope it does, but I fear it won't.

Do you mean the watching and waiting may not go away after surgery?

It went mostly away for me after a few months and almost completely disappeared at the 8 month check up when she came off restrictions. At that point, I felt she was back in the general population.

Nearly 100% of my attention on scoliosis is now on my unfused daughter. That is where the watching and waiting for me will go on for years and years, wondering if/when she will need surgery, not having a definitive answer. The only consolation to her situation is that if/when she needs surgery as an adult, hopefully it will be even better than it is now.

Good luck to you and your daughter.

Snoopy
05-20-2009, 04:44 PM
Pooka1;77072]Do you mean the watching and waiting may not go away after surgery?

It went mostly away for me after a few months and almost completely disappeared at the 8 month check up when she came off restrictions. At that point, I felt she was back in the general population.

Nope, for us the "watching" hasn't gone away even though Jamie is 4 1/2 years post-op.

I agree with the decision to not brace a child. Jamie was prescribed a Milwaukee brace which she wouldn't wear and then prescribed a modified Boston brace which she wouldn't wear. I chose not to force the issue. Do I regret my decision? No. Looking back now and knowing what I know now, I truely believe that no matter what we would have done, her curve would have still progressed to the point of needing surgery.

Mary Lou

Pooka1
05-20-2009, 04:55 PM
I see what you are saying, Mary Lou.

Our kids are not in the AIS group as far as I know. It's a bit different in that I think there is at least some evidence that braces don't work at all in this crowd (at least for Mafanoid scoliosis). That, on top of the general doubt that they work, makes me very okay with my daughter not wearing her brace.

It's a long road sometimes.

S4Sarah
05-20-2009, 05:08 PM
Plus Milwaukee braces are the worse, even though they have improved over the years they still are the most noticable. They go up and around your chin! :eek: Hard braces also cause other issues, just like the corsets used in the 1700's and 1800's which were eventually stopped. They squeeze your organs and rib cage overtime disforming you and hurting your organs. So as they are helping your back they are hurting your ribs and organs it really is not always worth it. There are new braces besides the spinecor now, but they are very new and still not too commonly used.

mishwz
05-20-2009, 10:35 PM
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

pmsmom
05-21-2009, 07:15 AM
Nope, for us the "watching" hasn't gone away even though Jamie is 4 1/2 years post-op...
Mary Lou

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.

Snoopy
05-21-2009, 07:18 AM
I see what you are saying, Mary Lou.

Our kids are not in the AIS group as far as I know. It's a bit different in that I think there is at least some evidence that braces don't work at all in this crowd (at least for Mafanoid scoliosis). That, on top of the general doubt that they work, makes me very okay with my daughter not wearing her brace.

It's a long road sometimes.


With all the research being done, I wish more was being done for things like Marfanoid Scoliosis, Charcot-Marie-Tooth caused Scoliosis, etc. I know, the number of kids in these groups is so small compared to the number of kids who just have Scoliosis that we may never see any research.

You know I don't dwell on Jamie's Scoliosis. We've moved on. But whenever it comes time for her follow-up appointment, I get just as nervous and worried as I did before surgery. I worry whether or not her Kyphosis has increased even though it has been stable and I haven't seen any changes.

I'm glad your are okay with your daughter's decision to not brace. You know how important it is to our kids to have our support.

Mary Lou

Snoopy
05-21-2009, 07:23 AM
Plus Milwaukee braces are the worse, even though they have improved over the years they still are the most noticable. They go up and around your chin! :eek: Hard braces also cause other issues, just like the corsets used in the 1700's and 1800's which were eventually stopped. They squeeze your organs and rib cage overtime disforming you and hurting your organs. So as they are helping your back they are hurting your ribs and organs it really is not always worth it. There are new braces besides the spinecor now, but they are very new and still not too commonly used.


There are many different types of Milwaukee braces. Jamie's didn't come anywhere near her chin. I tend to disagree with your statement about hard braces squeezing your organs and rib cage over time. When Jamie was in her brace(s) our family doctor followed her very closely to make sure there wasn't any damage to her organs. I would think that you'd have to wear your brace for many, many years before it would become an issue. Scoliosis on the other hand if left untreated will damage your organs. It is a tough decision to brace your child. For Jamie, because she has Kyphoscoliosis (both Kyphosis and Scoliosis) and the fact that her Scoliosis apex was so high up, a Milwaukee brace or surgery were her only two options. From what I have learned, the SpineCor would not have addressed those issues.

Mary Lou

Snoopy
05-21-2009, 07:33 AM
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
05-21-2009, 07:48 AM
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. :o

Mary Lou

mishwz
05-21-2009, 11:25 AM
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
05-21-2009, 03:58 PM
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
05-21-2009, 04:47 PM
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?