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cello_mom
12-07-2011, 10:18 PM
My daughter (12) was diagnosed with moderate scoliosis this year. After six months she had progressed from 20 to 25 degrees and was experiencing back pain in her lower back. Over a period of a few weeks it became more and more severe, and was not relieved by prescribed six weeks of physical therapy by her orthopedist. An MRI of her spine was done and showed no problems with her cord or disks. She was referred to another orthopedist at the the children's hospital who examined her, reviewed the MRI and also found them normal. The pain continued. She wakes with pain in the morning and it hurts to stand straight or sit straight or walk for long periods of time.

I should add she is going through a big growth spurt this year. She has not reached puberty yet.

The pediatrician ordered massive testing for every known thing. She does not have arthritis, any signs of inflammation, Lyme disease, mono, strep etc. All normal.

We have an appointment with a neurologist from the children's hospital in two weeks. Meanwhile dds back now cracks and makes noises. She has great days and miserable ones. Nothing makes her aching back better except cold packs. Her back pain ranges from a 2 to a 5 out of ten. It hurts at her lower back, between her shoulders, and often up and down her whole spine.

All the doctors we've seen tell me scoliosis should not hurt, but hers does. They tell me to be thankful she does not have tumors, cracked disks etc or arthritis etc. But at the same time no one yet can tell me WHY her back hurts. Any and all suggestions considered.

jrnyc
12-07-2011, 10:49 PM
you have only to read entries on this forum to know that
scoliosis can cause pain....
i do not trust any medical doctor who tells me what should or should not
cause pain...it has been my experience that the best doctors of any specialty
listen to and believe their patients...
the other doctors, the ones who tell you what "should" or
"should not" cause pain are following the medicine 101 book too religiously!
of course anything that causes the spine to curve out of correct
alignment can cause pain....
GP's, pediatricians, and general orthopedists rarely know much about scoliosis...
your daughter should see a scoliosis specialist...
the childrens' hospital will be a good place to start...
and i am so glad to hear that your daughter does not have any of the things
that she was tested for....
but that will not help her when she is in pain....she deserves a doctor who will
listen to and believe her!

i did not see mention of where you live...?

jess

cello_mom
12-07-2011, 11:23 PM
The doctors do not deny she is in pain. They are concerned because the do not think she should be having pain for no reason. The orthopedist she saw was the head of ortho at the childrens hospital and highly recommended. He could not find any reason why she had pain as her exams and xrays were clear, and her degree of scoliosis was not severe to him. He recommended pain management, which I balked at and went back to her pediatrician because I wanted to know WHY she was in pain. I still do not think there is nothing causing it. I think they are missing something

I am in Illinois.

Ballet Mom
12-07-2011, 11:47 PM
Hi cello-mom,

I'm sorry to hear that your daughter is in pain. It's good that she's going to see a pediatric neurologist to rule out anything else. They may do a CT scan I believe.

I think pain in moderate curves is rare, but not unheard of.

I think some sort of pain management might not be a bad idea at least so she can control the pain on her bad days. Maybe they could recommend some sort of exercise or stretching program that could help her manage in addition. It could help strengthen her back and keep her spine flexible. I wouldn't do any exercise program until you get approval from the neurologist and other docs though.

I hope you and her docs are able to manage her pain, and perhaps she'll just outgrow it. My son had tremendous growing pains in the sixth grade. They used to wheel him out of class in a wheel chair at the end of the day a few times. But it did eventually go away.

LindaRacine
12-08-2011, 12:16 AM
Hi...

Does she describe her pain as in one specific area, across a lot of lower back? If it was my child, I would try to find another physical therapist, preferably one specialized in spine, who can figure it out. If the MRI showed no physical reason for the pain, I would have to guess that the pain is generated from muscle strain. Finding a really good physical therapist can be daunting. Where do you live?

--Linda

jrnyc
12-08-2011, 12:28 AM
a doctor told me long ago that the body tries to compensate for the curve(s)
and that in itself can cause muscle pain....
so...the reason could be scoliosis, even smaller size curves...

when a doctor says something "should" not be causing pain, i wonder
how much they believe me...
i had this happen with a top rated specialist at Sloan Kettering in NYC, with
a tumor in my left femur that is benign...or we think it is benign....
he told me it "shouldn't" cause pain...
i ended up getting a refund from Human Resources as the guy has a widely known reputation
for having a nasty bed side manner...
i simply do not trust a doctor who says what "shouldn't" cause pain when i patient is sitting
there saying it does...
maybe they need to edit the med 101 text and update it...

scoliosis can definitely cause pain as it has an impact on the muscles, ligaments, nerves,etc...
the top scoli surgeons i have seen in NYC and in LA all agreed with that...

a pain management doctor doesn't spend time telling patients what shouldn't hurt...
he/she spends time trying to alleviate the pain...

jess

cello_mom
12-08-2011, 09:01 AM
Thank you for your replies and advice.

The pain began in her lower back, then moved to be one side, then the other, then in the middle between her shoulders, then up and down the entire spine. It sometimes hurts dead center on her spine and other times to the very left or right of it. And the backs if her knees hurt her every morning, to the point where she doesn't want to stand up for long. The knee pain eventually wears off during the day.

We saw the physical therapist for six weeks and focused on lower back and core strength, with series of stretches etc to loosen tight muscles in her back. After six weeks we really didn't see much improvement. I tried giving her ibuprophen for the pain but it did nothing. And sometimes she would get these awful headaches, but mostly it was and is her back.

The pain management clinic was in downtown Chicago, over two hours away, and focused on managing her pain. I don't see this as progress. Pain management to me is when you know something is wrong and there is nothing to fix about it except the pain, kind of like hospice. I did not want to drive two hours several times a week for a pain that had no firm diagnosis.

The pediatric neurologist I hope will be able to help. Last night was a bad night and her back cracked and hurt when she moved and she didn't want to do anything but lie down, which really doesn't alleviate the problem. This morning she got up and was OK and went to school like normal. Sigh.

jrnyc
12-08-2011, 12:46 PM
pain management is to manage pain...
whether the pain is temporary or permanent is not the point....
seeing a pain management doctor is not the equivalent of giving up...
the purpose of pain management is to relieve pain....
it also does not involve constant visits to see the pain doctor...
i was shocked that you could consider pain management like
"hospice" but then i realized you probably do not have a lot
of prior experience with pain...

and to me, the point is that your daughter is in pain...
and the goal is for her not to be in pain...
whether she will need surgery...now or in the future...
the goal for now, i would think, is for her not to suffer...
besides the goal of finding out how to fix what is wrong...

jess

Ballet Mom
12-08-2011, 02:37 PM
I agree Jess. Pain management could simply be knowing the correct number of extra pain reliever pills such as Tylenol that can be used safely by a patient when in need of some pain relief.

rohrer01
12-08-2011, 05:24 PM
The fact that her pain is moving around makes me think it is muscle spasms. What concerns me is the fact that her knees hurt. Have you considered seeing a geneticist to rule out any other disorder? The scoliosis may be a side effect from something else or may be incidental to another disorder, being unrelated. There are certain things that they can test for in the blood to see if she has balanced vitamin levels, blood count, hormone levels and what-not. If she has too much lactic acid build-up in her muscles, for instance, that can cause muscle pain. Low vitamin D levels can cause bone pain (but it doesn't sound like she is having this). I had a curve in the upper 30's as a teen that caused excruciating neck pain. All the docs told me the same stupid thing. Scoliosis doesn't hurt. Well, I'm sorry, but having an x-ray FOR the pain is how I discovered that I had scoliosis. I would just start looking at other disorders at this point, just to rule them out so you can feel free to focus on the scoliosis. Best wishes.

LSKOCH5
12-08-2011, 05:44 PM
I'm so sorry to see that your daughter is in such pain. It's awful to see your child hurting; it's so frustrating to not know why and to see dr after specialist, etc. I'm glad you're going to the Ped neurologist; hopefully all their tests can give an idea of what's occurring, esp being that the pain moves around so much. Really curious, w all the headaches & changing pain sites, is she lethargic yet has sleep problems? Is it possible she has had mono or another ongoing virus that she couldn't shake? I ask bc my now 18yo super achiever daughter went thru all that, intense radiating pain, no diagnosis nor relief for 7 months, then Neuro determined Epstein Barr. Finally found right meds, cut back school, etc. just curious. Also, don't close the door on PT. my scoli son has had awful pain, but big relief since starting pt to build up rhomboid & stretch out others. Let us know, we r all in this together, it feels.
LeighAnn

cello_mom
12-08-2011, 07:26 PM
Hello all and thank you for your kind concerns.

The ped did rule out mono and Epstein Bar via blood work. They did run a hormone check, thyroid check, and cbc. It was $1500 worth of testing (thank God for insurance...I paid nothing). She has no symptoms otherwise, no problems sleeping, no lethargy etc. Right now she is doing great, running around playing with her brother.

About the pain management...the topic came up first via the ortho specialist at Children's who never said what they would do at pain management, just that I needed to be downtown to do it, at the apparent only place it was offered. This was simply not practical. I cannot drive two hours into the city for this. Surely whatever they do can be done elsewhere. I also did not like what I felt was the great brushoff. That's why I returned to my ped, who I had not seen since this started because I'd been working via the scoliosis orthos. She said don't do pain management until we rule out everything. She equated it to treating a fever instead of curing the Strep. Her ped also would not prescribe any pain pills or a therapeutic dose of even tylenol. She said her pain receptors were overloaded ....

I agree it sounds like muscle spasms but shouldn't they at least respond to ibuprophen?

If the neurologist wants to do a CT scan I am ok with that except I'd rather avoid the additional radiation.

So for now DD does not do PE at school and takes it easy when she hurts. It's funny it hurts most when she sits up straight, or uses a chair without a back on it. We do do the stretching it just doesn't seem to make any difference, even with daily practice.

marie

jrnyc
12-08-2011, 08:33 PM
no, they cannot "do" pain management anywhere....it is a special
area of medicine....

many scoliosis patients have traveled thousands of miles cross country
just to see a top scoli surgeon....i can tell you are new at this stuff...

i am so sorry your daughter is suffering...and i'm glad it isn't constant pain...

jess

rohrer01
12-09-2011, 04:43 AM
Well, if the neurologist doesn't find what's wrong, then I would still recommend seeing a geneticist for the simple fact that there are so many different inherited things that we don't know about and her symptoms are unusual. I would have agreed with you about the scoli pain until you told us about the leg/knee pain. Again, they may be independent problems, but I would make sure to tell whatever doc you see ALL of her symptoms. Did they rule out MS with her MRI? I'm assuming so, if they said it was "normal" but if they aren't looking for something, sometimes they won't see it. She could be going through a massive growth spurt and that can put strain on the legs and back. Just throwing some more stuff out there. Take care.

Oh, and I forgot to mention. I totally understand WHY they don't want to treat your daughter's pain, as it will mask her symptoms and make diagnosis harder. But, it comes to a point when someone has to be merciful and not let her suffer just for the benefit of finding the diagnosis. You have to be the judge of how much pain your daughter should have to endure. As a mother myself, there is no worse feeling than to see your child suffering. I would take the recommendation of the orthopedist and at least talk to the pain doctor. He/she will be aware of the fact that treating pain can also mask symptoms. You need to weigh the pros and cons here.

flerc
12-14-2011, 12:17 PM
Roher, Iím sorry to know what happens with your daughter.
I was reading about diseases having the same effects as others more common and really difficult to diagnose. For instance I remember about the ankylosing spondylitis (a bacteria seems to be the cause).. surely has nothing to do because it seems that only an infrequent variant of this disease may be present before adulthood.
Anyway I would try to discard all of them.. Iím not sure how many are.

I hope the best solution for your daughterís problem, sure you will find it.

cello_mom
12-19-2011, 10:05 PM
We will see the neurologist tomorrow, though I can almost hear her answer now (there is nothing visibly wrong with her).

If that is the case, we have an appt already the first week of January with the orthopedist again.

Where do I go now? If her spine curve is not worse, do I ask for more physical therapy? What about a chiropractor (although to be honest my family thinks of them as quacks...long story)? They will probably mention pain management again, so what exactly IS this? Does bracing support the spinal muscles? Will that help?

She is 12, do I assume this pain will last until she stops growing? For LIFE? There must be something that can be done for it?

rohrer01
12-20-2011, 01:19 AM
Roher, I’m sorry to know what happens with your daughter.
I was reading about diseases having the same effects as others more common and really difficult to diagnose. For instance I remember about the ankylosing spondylitis (a bacteria seems to be the cause).. surely has nothing to do because it seems that only an infrequent variant of this disease may be present before adulthood.
Anyway I would try to discard all of them.. I’m not sure how many are.

I hope the best solution for your daughter’s problem, sure you will find it.

Flerc, it is cello_mom's daughter, but thanks anyway.

cello_mom, I would take one step at a time. See the neurologist and see what he says, THEN worry about the next step. I suggested a geneticist becaust they are familiar with some rare diseases, but a pain specialist is a good place to go if her pain is unbearable. As far as bracing goes, I would think she is the right age and curvature if she hasn't had her first menses, yet. I would talk to the doctor about it. Although, I've read that some braces are hard to wear. It may not improve her pain level, but that is still a good question.

cello_mom
12-20-2011, 04:32 PM
The neurologist ruled out any neurological reasons and confirmed the diagnosis that her back and neck muscles are very tight. She referred us back to the ortho, and gave prescriptions for several months of PT, recommended massage, potentially a small dose of baclofen at night to relive tension, hot tubs, acupuncture...well even the Chiro (but NEVER crack your neck for risk of stroke). So there we are....

jrnyc
12-20-2011, 07:38 PM
i would be more interested in what an orthopedist who
SPECIALIZES in scoli has to say...general orthopedists usually no little about scoli,
and it can be a waste of time to not go directly to a scoli specialist...
i do not like chiropractors...to me they are quacks, but that is my personal
opinion...

IF your daughter has a problem with muscle spasms in her back, i wanted to
tell you that i get botox injections in my upper spine for muscle spasms there....
my NYC pain management doctor gives them to me....not all pain doctors
have the shots...they are covered by my insurance, as they are not for
cosmetic reasons...

jess

cello_mom
12-20-2011, 08:08 PM
Jess

The Pain Management doctor does Botox as well as a plethora of other treatments. We were able to get him to see us in a local office instead of downtown, which is much more manageable.

The Neuro scoffed at only 6 weeks of PT and suggested doing it twice a week for several months to build and strengthen core muscles, and to find one who can do massage as well. She also recommended something called BioFreeze for muscle pain, and potentially a lidocain patch for pain, but only in conjunction with good PT. She was very ready to tell us she is not an ortho.

Our Ortho is a scoliosis specialist. He is also the head of ortho at the Children's Hospital.

Ballet Mom
12-20-2011, 08:29 PM
Hi cello mom,

What great news to find out there isn't anything neurologically wrong with your daughter. I'm sure that is a huge relief! I'm very happy for you and your daughter. :-)

Bracing can be very effective to stop a curve from progressing as long as the brace is worn faithfully as prescribed and a good correction is achieved in the brace. If your daughter is willing, and is able to adjust to wearing the brace without terrible emotional problems, and you are able to get a good correction of the curve even with her tight muscles, it would be great to hopefully stop the curve at only 25 degrees. Curves under thirty degrees at physical maturity are highly unlikely to progress during adulthood.

Good luck to you and your daughter.

rohrer01
12-20-2011, 11:57 PM
I take baclofen for my muscle spasms. It is helpful, especially if she is having trouble sleeping at night. Bio-Freeze is something you get at a chiro's office. I've bought it a couple of times but find it no more helpful than good ol' BenGay or other topicals. I also found the lidoderm patch ineffective as it only numbs the skin. It works well for a friend of mine that has fibromyalgia, so it might be worth a try IF you don't have to fork out the $$, as it is very expensive to just "try". A good exercise and massage program are always going to make anyone feel better. I'd be wary of chiro's. I went and it caused my stable curve to progress. Just some thoughts on my own experiences. I'd definitely keep going back to the scoli doc to keep her monitored. Pain is pain. I had it for a long time before my scoli was diagnosed. Perhaps my curve was in the 20*'s at that time, I'll never know. I'm glad her neuro's checked out all fine. It sounds more and more like you are dealing with straight muscle issues having to do with growing and scoli, but I'm not a doc so don't take what is said here as what is definitely going on. I hope you find some resolution soon. Let us know what they say about bracing and how that goes if you go that route. Best wishes.

cello_mom
12-21-2011, 01:44 AM
Thanks all. We see the ortho again on Jan 5th. It will be interesting to see if her curves have progressed. I bet they have. She seems more "crooked" lately and has grown another inch since we saw him in August.

Has anyone used a TENS unit for pain?

rohrer01
12-21-2011, 07:43 AM
Thanks all. We see the ortho again on Jan 5th. It will be interesting to see if her curves have progressed. I bet they have. She seems more "crooked" lately and has grown another inch since we saw him in August.

Has anyone used a TENS unit for pain?

Growing is a good thing. When my curve progressed before they found it, I shrank 3/4" instead of "growing". Although the risk is higher during growth spurts, it doesn't necessarily mean progression. Please keep us updated. My thoughts are with you. I know how scary this can be, my daughter has mild scoli. I can see her curves now and they do appear from the "outside" to be still mild. I believed a sports ortho that she wouldn't progress at age 12 and premenarche, so never followed up. Now she's an adult and I can't get her to go in to a specialist even though she has pain and insurance. She doesn't want the radiation exposure because she is afraid that is what has caused my many miscarriages. Please, have your daughter protected when they give her x-rays.

I have a TENS unit and have used a TENS unit and find it to be irritating. It's a gentle electrical current over the skin designed to disrupt the pain signals the way static on a TV would disrupt an analogue signal. I just found it to be annoying and a pain in the backside to wear. If her pain is moving all over the place and isn't bound to mainly one area, it would be hard to use, as the pain may shift while in use.

jrnyc
12-21-2011, 02:04 PM
i used a tens unit years ago for pain...for me, personally, it was
of no help whatsoever...

there are some on forum who like braces for holding curves at bay, and others
who swear the effect of a brace, if any, disappears after the brace is no longer worn...
it can be an awful lot for a child or teen to deal with if a lot of hours are mandated....
i suggest looking into studies on bracing for scoli, on the internet, before you see
the orthopedist again....

best of luck
jess

cello_mom
12-21-2011, 02:22 PM
i may take her to a chiro next week as she's off from school and my insurance pays 100%. Anyone have any recommendations for finding one who isn't part witch-doctor? Creams, pills and potions no thank you.

jrnyc
12-21-2011, 09:18 PM
please be very careful with what you allow a chiropractor to do....

i am surprised you would take your daughter to a chiro before she sees the ortho again...

jess

rohrer01
12-22-2011, 07:51 AM
I would NOT recommend taking your daughter to a chiro for this condition. As I sad earlier, I found a very caring and well meaning chiro and she made my condition worse. It is still progressing as a result because instability of the curve started a cascade of reactions in my spine. Hence, I have developed a second curve as a result. Please be careful. I don't know how to help you find a good one, as they ALL say they work on patients with scoli. They seem to love working on this disorder, with sometimes disastrous results. Just my opinion from my own personal experience.

cello_mom
01-02-2012, 01:38 AM
We didn't go to the chiro. My sister told me some saga of her patient having been paralyzed by one (she's always been the dramatic one). We see the or tho on Thursday morning. I am also getting her back into PT. She has spent the holiday break not doing much and i tell her if she sits all slumped on the sofa she will stiffen up...and she does. She is stretching much more than before. Perhaps she has realized she needs to participate in this process with the exercises for more than a minute a day. But she is 12 and hard to convince.

Pooka1
01-02-2012, 10:14 AM
Hi Cello_mom,

Although PT probably has a better chance of addressing the pain, bracing for pain has worked in some people. For example, Spinecor is marketed to adults for pain relief. In fact the ONLY thing that bracing has been shown to help with is pain though the intent is to stop progression.

Good luck.

Ballet Mom
01-03-2012, 10:17 AM
Happy new year cellomom,

I just wanted to point out that there are no studies that I am aware of that have been published that address scoliosis bracing and claims to help pain. Maybe Pooka can present them for us.

The only scoliosis brace that claims to help with pain is the SpineCor brace which is a controversial brace to begin with. We have a couple of anecdotal adult cases who say their pain has been helped by the Spinecor brace in adults, which is great news for them, but as far as I know there have been no studies published. Dear mamamax on this forum appeared to be helped in her pain with this brace, and there was a story in a Canadian newspaper about another.

I believe any study that would be presented on reduction of pain in the Spinecor brace would come from chiropractors who market the Spinecor brace if a study ever does come out. Unfortunately, Spinecor doesn't have a great track record in the orthopedic community as far as stopping curves from progressing in the adolescent growth spurt.

Also, there have been many recent studies that show that bracing is effective if you get a brace that effectively corrects the curve and you have a child who will wear the brace as directed without undue mental distress.

Here is an article on bracing written by a well-regarded orthopedic surgeon which would be considered the standard of care in the orthopedic community. Much better information than what you can get from unknown people on the internet.

http://www.spine-health.com/conditions/scoliosis/bracing-treatment-idiopathic-scoliosis

You might also want to take a look at the torso rotation threads in the research section. There are kids who seem to be doing quite well with them. They couldn't hurt and they might very well help strengthen your daughter's back at the same time stretching ligaments and help her out through her growth and perhaps help with her pain.

LindaRacine
01-03-2012, 11:07 PM
The only scoliosis brace that claims to help with pain is the SpineCor brace which is a controversial brace to begin with.

I don't believe there is any such claim. The only thing that has been published is a case study of 2 adults. There were no matched controls, so there's no way of knowing if the pain went away because of time, because of the brace, or because all of the stars aligned perfectly. The original inventor of the brace never claimed that it helped with pain, although he thought that it might.

Ballet Mom
01-05-2012, 08:27 AM
I don't believe there is any such claim. The only thing that has been published is a case study of 2 adults. There were no matched controls, so there's no way of knowing if the pain went away because of time, because of the brace, or because all of the stars aligned perfectly. The original inventor of the brace never claimed that it helped with pain, although he thought that it might.

Perhaps I wasn't clear in my post. I was replying to Pooka who said the following, which is obviously untrue:

"Although PT probably has a better chance of addressing the pain, bracing for pain has worked in some people. For example, Spinecor is marketed to adults for pain relief. In fact the ONLY thing that bracing has been shown to help with is pain though the intent is to stop progression."

The chiropractors who are involved with SpineCor are the ones who are promoting the SpineCor Pain Relief Back Brace. I believe they are the ones who modified the original SpineCor brace with some sort of comfortable shorts, but I could be wrong about that. They are marketing SpineCor for pain relief as can be shown if you Google. I don't know the involvement of the original inventor orthopedist.

It actually would be nice for people if this brace did help with pain for adults. However, for Pooka to say that the ONLY thing that bracing has been shown to help with is pain is a falsehood. Number one, it hasn't been proven, and two, that would only apply to this SpineCor brace...not the other scoliosis braces which are used to stop curve progression in a growing child. And three, lots of studies have shown the scoliosis bracing does work if a brace achieves a good correction and the brace is worn as directed.

On this site, the requirements to prove that bracing works is impossibly high and everything else is "proven" with very little to back it up, at least according to Pooka's viewpoint.

Pooka1
01-05-2012, 10:16 AM
Anyone who claims there is good evidence bracing works in AIS is unfamiliar with the literature or can't understand it FULL STOP.

Any surgeon will admit there is no good evidence bracing works (e.g., see Sponseller's comments) and that is why surgeons at 26 medical centers agree it is ethical to randomize kids to a no-brace study group.

Ballet Mom
01-05-2012, 11:16 AM
Anyone who claims there is good evidence bracing works in AIS is unfamiliar with the literature or can't understand it FULL STOP.

Any surgeon will admit there is no good evidence bracing works (e.g., see Sponseller's comments) and that is why surgeons at 26 medical centers agree it is ethical to randomize kids to a no-brace study group.

The reason surgeons agreed to randomize kids in the bracing trials is because the researchers decided there was equipoise in the medical community regarding the effectiveness of bracing. Lots of doctors believe that bracing does work in most cases and it is in fact the standard of care. You choose to ignore all that.

"Currently, the spine medical community advocates bracing as the only non-surgical treatment for idiopathic scoliosis. The objective of bracing treatment is to prevent the curve from progressing as the child grows, and studies have shown bracing is effective in stopping the progression of the majority of adolescent scoliotic curves."

That is a quote from Dr. McAfee in the link I posted above.

"A member of the Committee on the Spine - American Academy of Orthopaedic Surgeons, Dr. McAfee also serves on the editorial boards of Spine, Journal of Spinal Disorders, and The Spine Journal."

Pooka1
01-05-2012, 11:27 AM
Lots of doctors believe that bracing does work in most cases and it is in fact the standard of care. You choose to ignore all that.

Believing something works doesn't cut it and surgeons would admit that. Evidence cuts it when you are telling a kid to wear a brace.

Surgeons have hope NOT evidence and they admit it. They can distinguish between the two things. Lay people, not so much.

Ballet Mom
01-05-2012, 11:40 AM
Believing something works doesn't cut it and surgeons would admit that. Evidence cuts it when you are telling a kid to wear a brace.

Surgeons have hope NOT evidence and they admit it. They can distinguish between the two things. Lay people, not so much.

Ask the surgeons what they think about the effectiveness of bracing with all the new studies out.

I would suggest that if surgeons are getting poor performance from their bracing regimes they need to look into their orthotists' abilities and what they themselves might be saying to their patients that amount to a negative influence instead of a supporting influence.

Look at the difference in results at the Mayo Clinic when they revamped their bracing regime. Amazingly different outcomes.

http://www.scoliosis.org/forum/showthread.php?12723-More-Good-Evidence-Bracing-Works-in-AIS

Pooka1
01-05-2012, 11:59 AM
Citing one unpublished study is proof you are not approaching this correctly.

You would have cited all the NOW discredited studies before they were discredited also.

You are working under the WRONG paradigm in looking at these studies FULL STOP.

Ballet Mom
01-05-2012, 12:08 PM
Citing one unpublished study is proof you are not approaching this correctly.

You would have cited all the NOW discredited studies before they were discredited also.

You are working under the WRONG paradigm in looking at these studies FULL STOP.


Keep beating that same old drum... I keep suggesting you ask the surgeons about the newest bracing studies.

The fact of the matter is you are very fast and loose with your science facts and you are doing a disservice to those few bracing parents who venture on to this forum which is so antagonistic to bracing.

Pooka1
01-05-2012, 12:54 PM
I keep suggesting you ask the surgeons about the newest bracing studies.

Asking surgeons about unpublished (or published) new studies will change NOTHING. They have already be burned with the discrediting of all the extant literature that they thought supported bracing but now know can't be claimed to support bracing. There are known unknowns and unknown unknowns. This research is hard.

Surgeons are working with the SAME evidence case as everyone else. Therefore their intellectually honest answer will be IDENTICAL to what I have written. Nobody is sitting on "secret" evidence. BrAIST hasn't been halted on the basis of any new study. Ask yourself why.

cello_mom
01-05-2012, 02:14 PM
Well hello there people!! I see you all have been busy while I was gone....


We had our ortho check in this morning and he did another x ray. She progressed another 4 degree and is now 29. He has prescribed a Boston Brace and we have an appointment for a fitting on the 16th. He did not see any rotation, just the 29/30 degree curve. Her hips are also now slightly uneven but not in a noticeable way (i.e. she isn't complaining about that).

He said they will try to correct her so that in brace she is at 15 degrees, and said to continue the PT. The bracing is not intended to reduce pain, but to realign her spine so that her muscles are not pulling and causing her pain. He said she might find she is getting more support in the brace and this may help her pain. This is a summary of the convo, not a quote.

We will also do the PT twice per week going forward for core exercises. I have been getting her to actually do them and the stretches cause her relief, as does massage. Interestingly, she did not complain nearly as much during the Christmas break, when she was more relaxed. I think the stress of a heavy honors course work in school can make you tense up.

I am happy to see we are at least making progress to prevent the curve from progressing. She is growing like a weed and I can only assume the 1 degree per month will continue at the same rate.

BTW, she is in completely good spirits about the brace, which she is planning to call "Skeletor." I suppose now I shall head over to the bracing forum and hope to continue the conversation there.

Thanks all
Cello_mom

Pooka1
01-05-2012, 03:00 PM
BTW, she is in completely good spirits about the brace, which she is planning to call "Skeletor." I suppose now I shall head over to the bracing forum and hope to continue the conversation there.


Good that she is being positive about the idea of a brace and I hope it helps with the pain and progression.

By the way, the Bracing section is intended only for kids to talk with other kids about bracing. Parents are not supposed to post there.