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Thread: Extremely Frustrated

  1. #1
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    Extremely Frustrated

    My 16 year old daughter just within the last 3 months has been diagnosed with Scoliosis. She has had Scoliosis screenings at school and has had cheerleading physicals every year, it was never seen before. She started complaining about having lower back pain. Took her to the doctor and they immediately sent us for x-rays and the dreaded "S" word popped into our lives.
    We got into the Shriners Hospital and it is already at a 41 and forming an "S". Just within the last 3 weeks shes started complaining about having pain in her upper back and knots have started appearing on her upper back. The doctor at the Shriners said Scoliosis has no pain and she is done growing so nothing is recommended other than some PT she is to do at home. He said that since she is done growing it will not get worse. This he based on the fact that she had reached puberty and had already started her period so shes done growing. She started her period when she was 12 and this has all just shown up with in the last little bit.
    I tried telling him this but he kept cutting me off, talking over the top of me. I had taken her x-rays from January and I ask him if there had been any change. He said an insignificant amount nothing to raise a red flag or be concerned about. In my NON MEDICAL mind the first x-ray was taken in Jan. this visit to Shriners was in March. ANY change in just 2 months I'd think would be significant especially if I had just stated to the family it WAS NOT going to get any worse because shes done growing.
    I'm at my wits end, I don't understand that diagnosis at all. The Doctor was rude. Kept putting me off every time I TRIED to ask a question. We drove 4 hours and didn't know a bit more when we left than we did when we got there. Do I have a reason to be frustrated or should I just go with his word? He's suppose to be the expert BUT I sometimes think they forget that we as parents are with this child 24/7 pretty much. We know the changes and more about them than they do only having seen them for 15 minutes. That's how long he was in the room with us. VERY FRUSTRATED!!!!!!!!!!
    Last edited by Ronda; 04-05-2010 at 12:48 PM.

  2. #2
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    Ronda

    I am sorry to hear of your daughter's situation and your experience at Shriners Hospital. We have been to Shriners Hospital (Philadelphia) and the care has always been very good.

    Your situation is a bit out of my league because I am dealing with scoliosis for an 8 year old girl. But I have spent a lot of time researching scoliosis. Unfortunately at the age of 16 the options to treat it are much less.

    In most cases the treatment is bracing when the curve is between 25-45 (and growth remaining) and then surgery when it is 45 or more. But with her curve being at 41 and with her being 16 most doctors would not recommend bracing.

    However, I am not sure I agree with the assessment that the curve will not get worse. There are studies that show a curve may continue to progress even after a child reaches maturity. The study below is very old but it will give you some indication. We could probably find more recent studies.

    ================
    Seventy patients more than 16 years of age with untreated idiopathic scoliosis were followed-up for a mean period of 8.5 years. The majority of curves increased; 3 per year before 20 years of age and 1 per year after 20 years. Curves below 40 increased significantly less than bigger curves and curves from 60-80 increased the most. Single curves increased significantly more than double curves; thoracic curves increased significantly more than lumbar curves. It is concluded that surgery should be recommended to adolescent patients with thoracic or thoraco-lumbar single curves larger than 40, and that patients not treated operatively should be followed-up through early adult life.
    ================

    I would have expected the doctor to suggest that bracing was no longer an option and that surgery might need to be considered at a later point in time if the curve continues to progress or she experiences any pain. The fact that she is 16 the surgery is a spinal fusion and if she was much younger like my daughter it is growing rods surgery until she is mature then spinal fusion. But like all of us we are doing everything we can to avoid any surgery.

    We have been to 4 orthopedic surgeons with each one providing a different surgical treatment and non-surgical treatment options. I strongly recommend that you get a 2nd opinion.

    Regarding PT there are many treatments. There is PT to help manage the pain but also PT to help with the curve, even for those who are done growing. When it comes to PT you may want to look into Schroth Method. It is the PT that has been around the longest with regards to scoliosis. But there are others who support Pilates, Yoga, etc. but Schroth is much different.

    If it was me I would seek a 2nd or 3rd opinion from an orthopedic surgeon specializing in scoliosis to see if you are getting a consistent recommendation ( PT only) and to also become aware of surgical options. I would do some research on Schroth and any other PT designed/developed for scoliosis.

    Hopefully you will get some advice from others who have much more experience in this situation.

    I hope this helps some.

    Michael

  3. #3
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    Quote Originally Posted by Ronda View Post
    My 16 year old daughter just within the last 3 months has been diagnosed with Scoliosis. She has had Scoliosis screenings at school and has had cheerleading physicals every year, it was never seen before. She started complaining about having lower back pain. Took her to the doctor and they immediately sent us for x-rays and the dreaded "S" word popped into our lives.
    Very sorry to hear it.

    We got into the Shriners Hospital and it is already at a 41 and forming an "S". Just within the last 3 weeks shes started complaining about having pain in her upper back and knots have started appearing on her upper back. The doctor at the Shriners said Scoliosis has no pain
    There is actually a very nuanced response to this. Surgeons have some ground to stand on when they say scoliosis, per se, is painless. Certainly in adults the pain is often if not always traced to these other conditions. And adults without pain probably just don't have those ancillary conditions. The situation in kids is not so clear as far as I know. Given that, it seems like some ancillary issue is likely responsible of pain associated with scoliosis. So it is important to ask the surgeon directly what is causing the pain if it isn't the curve. They must look for the reason.

    and she is done growing so nothing is recommended other than some PT she is to do at home.
    I think of all the treatment modalities for pain in subsurgical scoliosis, PT probably has the best record. I think that's why it was suggested. Another modality that looks promising is Spinecor for pain with mature spines. But that means wearing a brace for the rest of her life which may not be a viable solution.

    He said that since she is done growing it will not get worse. This he based on the fact that she had reached puberty and had already started her period so shes done growing. She started her period when she was 12 and this has all just shown up with in the last little bit.
    Is it possible you misunderstood the surgeon? I doubt a surgeon would say a 41* curve, even lumbar, will not get worse. I think they will say it is likely to worsen but only very slowly such that it might never reach surgical range.

    I tried telling him this but he kept cutting me off, talking over the top of me.
    That sounds like a communication problem. Since the surgeon has the expertise, it is incumbent upon him to remedy that and it sounds like he did not remedy it.

    I had taken her x-rays from January and I ask him if there had been any change. He said an insignificant amount nothing to raise a red flag or be concerned about. In my NON MEDICAL mind the first x-ray was taken in Jan. this visit to Shriners was in March. ANY change in just 2 months I'd think would be significant especially if I had just stated to the family it WAS NOT going to get any worse because shes done growing.
    Can you tell us what the first and second measurements were?

    By insignificant they just mean the second measurement is within +/- 5* from the first. That is the precision and they can't say the curve changed unless the change is larger than that. He is just telling you the two measurements are within the precision of the thing. Anything else would be improper and incorrect.

    I'm at my wits end, I don't understand that diagnosis at all. The Doctor was rude. Kept putting me off every time I TRIED to ask a question. We drove 4 hours and didn't know a bit more when we left than we did when we got there. Do I have a reason to be frustrated or should I just go with his word? He's suppose to be the expert BUT I sometimes think they forget that we as parents are with this child 24/7 pretty much. We know the changes and more about them than they do only having seen them for 15 minutes. That's how long he was in the room with us. VERY FRUSTRATED!!!!!!!!!!
    I think you have a reason to be frustrated and I wish the surgeon talked you off that ledge. Clearly he did not.

    That said, I think you should email your questions to him to try to clarify the situation in your mind.

    I also think you may not be aware of things like measurement precision that, had you been made aware, you would not have gotten frustrated.

    Last, I really think you should seek out some more opinions. You are in a gray are with a subsurgical curve with pain. This is inherently frustrating as I doubt you will find someone to operate unless there is demonstrated progression. But fusion might be the only hope of pain relief. That is what it means to be between a rock and a hard place. I hope you find some answers.

    Good luck.
    Last edited by Pooka1; 04-05-2010 at 02:45 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."

  4. #4
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    Hi Ronda,

    Like Michael's daughter, my son is also treated at the Shriners Hospital in Philadelphia. He has been going there for over six years and the care has been fantastic. In fact, one of the things I like best (besides, of course, the top-notch medical expertise) is the caring, compassion and time they spend with each patient, really getting to know them.

    Clearly this was not the experience you had and I'm sorry to hear that. Every child/parent deserves the type of care we have been fortunate enough to have received and continue to receive.

    I agree that you should get another opinion or two. I do believe that a lot of girls are finished growing by 16 (and/or a year or two after they begin menstruating). My daughter, who is almost 19, did most of her growing by freshman year of HS, around age 14. Since then she has grown very little.

    That said, I would still want to get some more opinions since 41 degrees is borderline - some doctors recommend surgery at 40 degrees - others wait until 45 or even 50 degrees. And then of course, there are other factors to consider (rotation, location of curve, etc.). And of course there is the pain issue, which perhaps can be addressed non-surgically, I don't know. In any event, your daughter should not have to live with pain, hopefully right now it's not too bad.

    Good luck to you and please keep us posted.
    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/

  5. #5
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    I'm glad to read that you've all had good care at Shriners. My daughter had excellent care from the nursing staff, radiology, etc. I just honestly DON'T think that Dr. had any intentions of seeing us that day. After I questioned us driving 4 hours and not getting to see a Dr. he came reluctantly I believe. He was in the room around 15 minutes and gone. No questions answered, said follow up x-rays should be done usually in 3 years to see if there is any change. Well in 3 years she will not even be eligible for Shriners because she'll be 19. So then it starts all over again. New Dr., more x-rays done by a different department. Back to square one.
    He did say that at her age she was not a candidate for bracing, which I already knew from research. He made her stand up and my daughter automatically pulled her shoulder up and rolled it back. This is standard procedure for her because shes a pageant girl so she compensates for the obvious signs of Scoliosis. He said well she hides it well and no one will ever know she has it unless you tell them. That was not the point of us even being there. Her pain is our main focus at this point. You can definitely tell in certain clothing that one hip is already way higher than the other and she bends her knee to compensate for that when standing.
    Her family Dr. ordered the radiology report from there. The readings are 33 in thoracic and 41 in lumbar. Unfortunately Pooka the exact words he said were, "Good news is it won't get any worse because she is done growing." There were 3 of us in the room and we all heard it the same way because I even questioned it when we were in the car on the way home.
    Her original radiology report said the scoliosis was moderate to severe with a reading of 40 in lumbar. The Shriners Dr. said it was mild, stating that surgery is usually not considered until 45. SO if 45 is surgery and 41 is mild where do moderate and severe rank?
    Good news is our family Dr. thinks we need a second opinion because he knows this is something that has come up rapidly. So we are getting an appt. at the Childrens Hospital. Hopefully we will get some questions answered.

  6. #6
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    Quote Originally Posted by Ronda View Post
    Her family Dr. ordered the radiology report from there. The readings are 33 in thoracic and 41 in lumbar. Unfortunately Pooka the exact words he said were, "Good news is it won't get any worse because she is done growing." There were 3 of us in the room and we all heard it the same way because I even questioned it when we were in the car on the way home.
    Okay he misspoke and made a mistake perhaps in haste. I don't think any surgeon would think that a 41L and 33T can't ever progress. Rather I think they will all say it is likely to progress though they can't say how fast.

    Her original radiology report said the scoliosis was moderate to severe with a reading of 40 in lumbar. The Shriners Dr. said it was mild, stating that surgery is usually not considered until 45. SO if 45 is surgery and 41 is mild where do moderate and severe rank?
    It's hard to say what is going on with that. I have never heard a 40* referred to as "mild." And I'm pretty sure 50* is the surgical trigger at least for thoracic curves with our surgeon but I think he looks for progression also. At that point, progression is expected at such a rate in a kid that will take them well into surgery territory. Lumbar curves are less likely to progress to surgical territory in general compared to thoracic and double major curves though so I would think a larger trigger angle is set for those. That may be an explanation for calling a 40L mild, I don't know.

    Good news is our family Dr. thinks we need a second opinion because he knows this is something that has come up rapidly. So we are getting an appt. at the Childrens Hospital. Hopefully we will get some questions answered.
    Yes I certainly hope so.

    Good luck.
    Last edited by Pooka1; 04-06-2010 at 06:09 AM. Reason: Lumbar curves are less likely to progress to surgical territory in general compared
    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."

  7. #7
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    Hi Ronda,

    I was going to say what Sharon said - that is seems either the doctor misspoke or miscommunication occurred. You said that he used the word 'mild' - now I'm just speculating of course, but he may have used that term to mean 'not at surgical level'. Of course, 'mild' was not the right term in that instance but could have been what he meant.

    I also agree that lumbar curves are viewed in some respects differently than thoracic or double major curves. There may be a higher surgical-trigger point for them and they sometimes respond differently to treatment (for example, the VBS success rate is higher for lumbar curves than for thoracic curves, etc.)

    So back to the pain issue which, as you say, is understandably the major concern. I would of course talk to another specialist, perhaps two. I guess the obvious questions to them would be: do you feel scoliosis is causing the pain in this instance? and do you feel surgery (fusion) will help in terms of future back pain for her?

    If it turns out that they agree your daughter does not need surgery at this time, hopefully they can make some recommendations for pain relief.

    Best of luck and please keep us posted!
    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/

  8. #8
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    Hi Ronda,

    I am sorry to hear of your disappointing appointment! Unfortunately not all Shriners are created equal. We originally traveled cross country to Shriners Philly (which was wonderful). Since we live so far away it was recommended that we have follow-up and bracing at a Shriners closer to our home until my daughter was old enough to have stapling surgery. We were very disappointed with the doctor's attitude and manner, and eventually quit seeing him. He went so far as to say it was my fault that my daughter hated her brace at 6 y/o. I'm not sure what part of the country you are in, but your experience sounds a little like ours.

    You definitely deserve to have more questions answered about your daughter's curve and especially her pain. I would definitely seek a second opinion. You can search for a scoliosis specialist at www.srs.org (Scoliosis Research Society) and look in your geographical area under 'Adolescent.' There are too many talented and compassionate pediatric orthos out there to have to put up with one who you don't like!

    Good luck, do not be discouraged! Please do let us know how things are going.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  9. #9
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    Feeling comfortable with your doctor is a must in the realm of Scoliosis. If you did not feel you received proper treatment, or feel he made some hasty decisions regarding your treatment, I would certainly seek a 2nd opinion. It is your option to seek a 2nd opinion at any time. I was comfortable with my physician the first day I saw him. He was knowledgeable, professional and knee exactly what he needed to do with my curve. He answered all my questions and acted like he had all the time in the world.
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  10. #10
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    Hi Rhonda....

    I hope it was just a bad day for that doctor. I can imagine how frustrating it was. Do you have the ability to take your daughter to a different specialist?

    At your daughter's age, Risser, etc., there's really not much to be done in the short-term. There is a reasonable chance that the curve will increase, but a brace is unlikely to help at this point. Although I couldn't find the exact reference, it's thought that braces are ineffective on curves >40 degrees. I think most of the good specialists would not put your daughter in a brace, and would tell you to come back in 6 months to see what has happened. If, at that time, there's significant progression, and/or the pain is still there, I suspect they'd order an MRI. There's relatively small risk with that strategy.

    By the way, the reason that specialists say that scoliosis does not cause pain is that the vast majority of kids with scoliosis don't have pain. If scoliosis caused pain, how is it that most kids don't have any? I suspect they'll eventually find that kids with pain are somehow different from kids without pain.

    Good luck!

    Regards,
    Linda

  11. #11
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    Rhonda:

    Your story sounds very similar to mine. My daughter is 14 and we only found out she had scoliosis after taking her to an ER this past November for extreme pain.

    The ER referred us to what we refer to as Dr. Bozo and my daughter was seen by him about a month later. Her degrees in early December were T:21 L:36. He also gave us the line about how she was done growing and that the curves should not increase. How she was too old for a brace but not sick enough for surgery.

    We met with a FANTASTIC Shriner's doctor the first week of March. Our doctor spent a lot of time examining my daughter and actually listened to what we had to say. The x-rays taken at her appointment showed her curves had increased to: T: 36 L: 48 in just 3 months! She's on the waiting list for surgery at Shriner's SLC. She should be having surgery either some time in June or July.

    My daughter has had a CT and MRI and they ruled out anything other than scoliosis that could be causing her pain. This is just my theory but I think that since her curves are growing so rapidly that her muscles can't keep up with the curve and thus are causing the pain. She has good days and some really bad days. Naproxen seems to help the most.

    I'm sorry to hear you had a bad experience with one of the Shriner's doctors. I definitely wouldn't give up. If you feel that your daughter is in a lot of pain you need to fight for her. That's what I had to do. I knew her curves were growing despite being told by two different doctors that they wouldn't grow much since she was done growing. Go with your instincts.

  12. #12
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    Rotation?

    Daughter had an MRI done a week ago today. Still have not heard from the hospital or Dr. While she was getting dressed I overheard 2 of the people looking at the screen with her MRI up talking about rotation of the spine. Has anyone been diagnosed with that? Is that part of having Scoliosis? This is very frustrating waiting to hear back from the Dr. that said this wasn't going to get any worse because she is done growing. Seems to be getting worse to me. She's had 3 knots come up on her spine between her shoulder blades. She was laying with her head in my lap and i was just using the tips of my fingers to rub up and down her back. She ask me to please stop said it hurt, felt like hot needles being stabbed into her back. Is that normal with Scoliosis?

  13. #13
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    I just want to wish you and your daughter well and say that my daughter and I have experienced similar exchanges with doctors. My dd is 17 and was diagnosed at 16. She's also been told, by 4 different doctors, that there will be no increase and yet there has been an increase with each X-ray taken.

    One thing that has helped my dd with pain is physical therapy. It's not specialized PT for scoliosis--although I'd prefer that. After each PT session she gets a short massage and stim. I think these two things have helped with the pain as much as the exercises. My husband wants to take her to a chiro for pain but so far I've resisted that because of postings about chiro on this site.

    My dd has also been treated dismissivley by doctors (the last doctor, Lonner, in NYC was better). I truly believe that teenage girls are not valued by our society--certainly not by doctors. My daughter was told by the first ortho we went to that if she gained a few pounds people wouldn't notice the curve. As if whether or not people think she is attractive is what's at stake. But, as you said, THAT'S NOT THE POINT. I think if this disease primarily affected young men we'd have better treatments by now.

  14. #14
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    Ronda: My daughter also has rotation (lumbar). I'm pretty sure it's common. It's clearly visible on her x-rays.

    My daughter's pain is primarily where her "rib hump" is located ....mid back, left side, just under her shoulder blade. She does ask us for back rubs but we have to be very gentle. She often uses a heating pad and that seems to help.

  15. #15
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    hi aterry
    i am so sorry that any doctor was dismissive towards your daughter...i have experienced dismissive doctors (seems to be male doctors towards women...alot!) in the past...but i pretty much dont put up with any of it anymore...i walk out of their office if need be! learned the hard way from lyme disease...and all the male idiot dotors who tested for everything but lyme and came up with negative results...cause they didnt know what to look for (back in 1987)....so they told me i was crazy, a hypochodriac, etc....awful experience! i sympathize with you!

    do you know the degree of curve your child has now?
    i am going to Dr Lonner...have been his patient for over 5 years as he follows my curves...will have surgery with him eventually...probably within 12 months of now...and it will be minimal invasive....i would expect he would be respectful and trustworthy...at least, that has been my experience with him from the start....

    it is awful when doctors tell patients to wait for the curves to increase for surgery...or tell them the curves wont increase, and then they do (i think their predictions are often way off!)...

    i hope you find the right doctor for your child...someone you can trust and respect...who will treat both of you the same way!

    jess

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