moderate scoliosis and back pain. any ideas?

[cello_mom]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.