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Thread: 16YO Lots of Pain, Headaches, I NEED HELP!!!

  1. #16
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    Quote Originally Posted by emarismom View Post
    I would look for another cause for the pain and ask for an MRI to be done of the full spine. There maybe something else that is causing the headaches. Scoliosis does not cause headaches.
    I disagree. My daughter was having frequent headaches.

    Her pediatrician explained her pain (at only a 36 degree curve when first diagnosed) as being related to the nerves that run down your spinal column. If those become contorted or stretched it can lead to all kinds of symptoms. He also said it might be due to the twisting (trunking?) of her spine.

    Everyone is correct in that you do not need to be sponsored to get into the Shriners Hospital program. However, if you are not sponsored by your local shrine you will be ineligible to receive any travel assistance, should you need it.
    Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

  2. #17
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    Quote Originally Posted by Gryffindor View Post
    Everyone is correct in that you do not need to be sponsored to get into the Shriners Hospital program. However, if you are not sponsored by your local shrine you will be ineligible to receive any travel assistance, should you need it.
    Hi,

    I just want to clarify that last point you made. In my experience, that has not been the case. My son was not sponsored in order to get into Shriners and yet we receive rides, when needed, from NY to Philadelphia.

    Now, it may be that we were 'assigned' to the local temple unbeknownst to us - but we never took any steps, personally, to have David sponsored. Nor am I aware of him having a sponsor, and we have been going to this hospital since late 2003. I have also learned as much as possible about this wonderful organization during that time so I am pretty confident I have the facts correct.

    By the way, since the written word is so hard to interpret, I just want to say I am NOT trying to be argumentative or anything. I just didn't want anyone delaying seeking treatment because they thought they needed to seek a sponsor first in order to qualify for all of the services that Shriners offers

    Take care,
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #18
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    Quote Originally Posted by Gryffindor View Post
    I disagree. My daughter was having frequent headaches.

    Her pediatrician explained her pain (at only a 36 degree curve when first diagnosed) as being related to the nerves that run down your spinal column. If those become contorted or stretched it can lead to all kinds of symptoms. He also said it might be due to the twisting (trunking?) of her spine.
    I'm sorry to hear about your daughter's headaches. Just out of curiosity, did your ortho confirm what your pediatrician told you? I only ask because in my experience, pediatricians sometimes are not fully up to speed on sub-specialties like scoliosis. They obviously can't be experts in every field, that's why we have specialists

    I am NOT saying this is the case, necessarily, with your pediatrician. But back when my son was diagnosed my pediatrician was pretty clueless (about early onset scoliosis, anyway). I now see a different pediatric group and still feel, at times, that after being in the scoliosis world for nearly a decade, I know more about some of the intricacies of the condition than they do. In fact, they have told me that. I'm sure many folks here have been forced to become scoli experts as well.

    Anyway, perhaps your daughter's headaches ARE caused by her scoliosis. Maybe a better way to put it (rather than saying scoliosis doesn't cause headaches) is that it is rare for it to do so.

    More importantly, I still think it is good advice for the parents of any child experiencing headaches, to assume there could be some underlying cause (chiari, etc.) and to request a full MRI of the spine.

    Best of luck to your daughter!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  4. #19
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    Quote Originally Posted by mariaf View Post
    Hi,

    I just want to clarify that last point you made. In my experience, that has not been the case. My son was not sponsored in order to get into Shriners and yet we receive rides, when needed, from NY to Philadelphia.
    One of the reasons I wrote that is because of one family that we met during our hospital stay. They were from Vancouver, Canada.

    I asked why they had come all the way to SLC when there had to be a hospital closer, plus, they had access to Canadian healthcare.

    Their daughter had growth rods implanted a few years back. This is still considered experimental in Canada so they had to seek out treatment in the states.

    They were told that if they wanted sponsorship (travel assistance) that their daughter would need to go to the Portland, OR hospital. But, the surgeon they wanted to see (same as my daughter), was in SLC. So, because they weren't going to the closest hospital, their shrine won't assist with their travel. Granted, this could simply be how that particular shrine has their program set up.

    My father-in-law was a Potentate for his shrine back in PA. He passed away a few years ago just after taking office. When my daughter was originally diagnosed and we kept getting the run around from different Dr's I called and spoke with my MIL and asked for help in getting into the Shriners Hospitals. We originally wanted her to go to the Philly hospital from reading posts on here. My MIL said their shrine only sponsored kids to go to the Erie hospital.

    I think it really all depends on how the local shrine is set up to help people in regards to transportation.

    And, absolutely no hard feelings at all!
    Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

  5. #20
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    Hi Gryffindor,

    Thanks for that additional information.

    I think I understand it now. It sounds as though - regardless of whether or not one has a sponsor - the local Shrine temple will only bear the cost of travel to the nearest Shriners Hospital. That would make sense because, with their limited funds, it would be more cost-efficient to transport a patient to the nearest hospital, rather than one across the country, for example.

    I also wonder if being from outside the US had anything to do with what this family was told. I know there are slightly different regulations for US patients vs. non-US patients.

    Ah, so your FIL was a past potentate in PA. He must have been quite a fellow and I'm sorry for your loss. I've met dozens and dozens of Shriners over the years and every single one of them was an extraordinary gentleman
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  6. #21
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    Wink Study Results

    The results are in, her CAT Scan was normal and the Scoliosis study reveals no change in curve, however, there is a significant change in the rotation.

    PCP gave her Midrin for migraines, it does not appear to have any effect on the headaches.

    Does anyone know how I can find out the degree to rotation as compared to 2 years ago? I asked the X-Ray Tech to take a picture bent over, she would not do it, said it was not part of the study doctor ordered.

    Very glad curve has not gotten any worse, now concerned about the rotation changes. Could this be causing the headaches and other pain she is dealing with?

    Thanks for all the support and answers, it is really helping.

  7. #22
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    The rotation could be the culprit in regards to her pain. My daughter's surgical report showed that the rotation was their biggest obstacle.

    It's good to hear that her curves haven't progressed. How long has it been since they appeared to stop progressing?

    I can't believe nobody has ordered bending x-rays yet! It's such a simple thing to do and they will reveal loads of info.

    Your orthopedic surgeon/MD might be able to tell the amount of rotation from the CAT scan but there's problems with taking readings this way as the patient is laying down. They didn't take her measurements from the CAT scans did they because those will absolutely NOT be correct.
    Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

  8. #23
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    To my knowledge, bending radiographs are only taken immediately before surgery to identify structural vice functional curves and to identify what the last instrumented should be. If a kid is not scheduled for surgery, there is no reason to do it.

    Rotation is not determined from bending films. I can well imagine rotation would be easy to measure from a CAT scan although you may be right that it must be a standing scan vice a supine (prone?) scan. I have no idea.

    A non-radiological method for determining rotation might be with a scoliometer which is used on the back when the patient is bent over. That measurement can be repeated to determine any change in rotation if can be determined apart from changes in Cobb.

    Rotation is claimed to be linked to curve progression by Kiester, an orthopedic surgeon, as I recall but it is clearly uncoupled in the case of your daughter whose rotation increased in the absence of curve progression and in the cases of my two daughters who had nearly the same Cobb (57* and 58*) yet one was highly rotated and the other barely so. So there is variation here as in all aspects of scoliosis it seems. I might be misremembering his claim.

    Our surgeon never measured the rotation on either of my kids. I am not sure the Adams forward bending test is useful for determining rotation or if it is just for Cobb estimation or both. He did the Adams test every visit. Of course you didn't have to be a surgeon or know what a scoliometer is to know one of my kids was highly rotated and the other barely so. You could easily determine that looking at them standing there.
    Last edited by Pooka1; 09-28-2010 at 10:37 AM. Reason: damn typos
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #24
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    Regarding Headaches

    Well, I'm a little further down the scoli road than your daughter , but I do have a fair amount of experience with headaches.

    According to the doctors I've seen, my headaches -which are now a chronic problem- are caused by the thoracic curve pushing the head forward and to the side. My neck is trying to get away from the curve, and I do NOT have a large rotation- almost no rib hump- but I have large curves. I take Advil which I don't advise and have recently had success with some exercises that another forum member had mentioned in the Alternative section. I've had varying opinions as to whether scoli surgery will affect neck issues. The last doctor I saw thought that surgery would alleviate neck-related symptoms.

    Interestingly, I had a conversation with my mom recently when we were trying to remember the first time a doctor ever mentioned my scoliosis. At about the age of 17, I had been having unexplained chronic headaches and some sort of testing was done. The doctor casually mentioned that I had scoliosis and it was too late to do anything about it. They determined no reason for headaches- that I was an "emotional type" and on I went. My headaches subsided until adulthood, and I am now functional with headaches or without.

    So as the ghost of Christmas future, that is my story. My personal opinion is that scoliosis can cause headaches.

    All best wishes to your child...truly.
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  10. #25
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    Study Results

    We we have the results of the most recent study...curve has not progressed, however, the rotation had significant change. I believe this is cause her headaches. CAT scan revealed nothing, all look fine.

    PCP doc gave her meds for migraines, she experienced bad side effects from it so she will not longer be taking it. he also referred her to a neurologist, but I'm afraid they are going to say the same thing, it all has to do with her curve/rotation.

    We have filled out the paperwork for the Shriners and had submitted through her wonderful boyfriends family (who are BIG shriners in our area!!). Now we are waiting to hear back from them.

    In the meantime, we are going to keep our appt with another ortho doc on 10/8. Not sure we are going to get any answers, but we have had this appt scheduled for over 2 months.

    Anyway, thanks for all the advice/prayers/suggestions.

  11. #26
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    Quote Originally Posted by klmoon View Post
    Was told by three different doctors that it will not get worse b/c she is done growing.
    These three doctors are mistaken. How many were experienced orthopedic surgeons? There are several testimonials on this group where a sub-surgical curve progressed to surgery territory even in young adulthood. Moreover one patient who was i the low 30* at maturity but who nevertheless needed surgery as a young adult was told by her surgeon that this wasn't unusual. If you can believe it.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #27
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    Quote Originally Posted by klmoon View Post
    We we have the results of the most recent study...curve has not progressed, however, the rotation had significant change. I believe this is cause her headaches. CAT scan revealed nothing, all look fine.
    Were it me, I would ask for evidence ruling in or out whether rotation in a sub-surgical curve is associated with headaches. Hopefully the surgeons can advise you about the likelihood of this being the case.

    Did the CAT scan reveal a significant increase in rotation with no curve progression?

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #28
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    klmoon wrote: "I believe this IS the source of her headaches and back pain."

    Yes I know you believe it but is there any medical evidence consistent with the rotation being causing headaches? That's the key question.

    I think there is probably enough evidence that some kids have back pain even in sub-surgical curves though.
    Last edited by Pooka1; 10-01-2010 at 03:12 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #29
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    Update

    Well we went for our appointment, still no real answers. He measured her curve at 39*. We are going for an MRI on Tuesday with a follow-up with specialist on Friday. More results later this week.

  15. #30
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    If the curve in any plane (as rotation) is the cause of pain, I think that reducing the curve will avoid pain.
    As I know there are only two methods for doing that: surgery and EDF technique. You could prove with EDF for a time and remove the brace when you want.

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