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Ronda
04-05-2010, 12:46 PM
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!!!!!!!!!!

michael1960
04-05-2010, 02:15 PM
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

Pooka1
04-05-2010, 02:42 PM
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.

mariaf
04-05-2010, 07:02 PM
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.

Ronda
04-06-2010, 01:07 AM
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.

Pooka1
04-06-2010, 05:59 AM
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.

mariaf
04-06-2010, 07:29 AM
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!

leahdragonfly
04-06-2010, 08:26 AM
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.

RitaR
04-06-2010, 09:33 AM
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.

LindaRacine
04-06-2010, 10:48 AM
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

Gryffindor
04-06-2010, 07:20 PM
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.

Ronda
04-19-2010, 01:38 AM
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?

aterry
04-19-2010, 11:00 AM
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.

Gryffindor
04-19-2010, 11:43 AM
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.

jrnyc
04-19-2010, 02:27 PM
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

Ronda
04-21-2010, 12:17 AM
Our family doctor requested the MRI diagnosis reports from Shriners. We had the test Monday April 12th and still have not heard from the hospital or doctor. I've called for 2 days now and left phone #'s where I could be reached wanting to know if they've found out anything yet. They called and left a message on the answering machine stating the doctor had not looked at the results yet. The case worker said that it showed she had a minor dislocation of a disc.
I got a copy of the MRI diagnosis report from my family doctor but it doesn't make sense to me. They did a MRI of her lower back wanting a closer look at 2 disc that they said looked herniated. The report findings say 32 degree levoscoliotic curve of the lumbar spine with a 23 degree dextroscoliotic curve of the dorsal spine. There is a 63 degree dorsal kyphosis. There is a Grade II spondylolisthesis with L5 anterior and S1 by about 1.5cm. Probable neural large defect at this level(L5)
The x-ray said there was curvature of 33 thoracic and 41 lumbar. Is that a totally diferent reading than the 32 and 23 listed on the MRI?
I'm sorry I'm such a pest bothering you all with these questions. BUT this doctor spent 15 minutes with us and hasn't told us anything. Hes not concerned about it BUT I AM.
I see her everyday and I see the drastic change it is making rapidly. Still waiting for an appt. with the Children's Hospital for our second opinion. If you understand any of the Greek from the MRI report I'd appreciate some insight please. Thank you.

michael1960
04-21-2010, 02:11 AM
RONDA

HERE IS MY UNDERSTANDING OF YOUR MEASUREMENTS BUT PLEASE GET CONFIRMATION FROM OTHERS. MY COMMENTS ARE IN CAPITAL LETTERS. YOUR COMMENTS ARE IN lowercase letters.

The report findings say 32 degree levoscoliotic (LEVO MEANS LEFT SO THIS IS A LEFT CURVE) curve of the lumbar spine (LOWER SPINE) with a 23 degree dextroscoliotic (DEXTRO MANS RIGHT SO THIS IS A RIGHT CURVE) curve of the dorsal spine (UPPER THORACIC SPINE).

There is a 63 degree dorsal kyphosis. THIS IS LOOKING AT HER FROM THE SIDE. THERE ARE 3 CURVES WHEN LOOKING FROM THE SIDE.
- CERVICLE LORDOSIS (NECK - LORDOSIS MEANS CURVE IN),
- THORACIC KYPHOSIS (UPPER SPINE - KYPHOSIS MEANS CURVE OUT),
- LUMBAR LORDOSIS (LOWER SPINE - LORDOSIS MEANS CURVE IN).

I DO NOT KNOW WHETHER 63 DEGREE DORSAL KYPHOSIS IS ABOVE, AT, OR BELOW NORMAL. MY FIRST REACTION IS THAT THIS IS LARGER THAN NORMAL BUT THIS IS PROBABLY A DISCUSSION YOU SHOULD BE HAVING WITH A DOCTOR.

There is a Grade II spondylolisthesis with L5 anterior and S1 by about 1.5cm. Probable neural large defect at this level(L5).
(I HAVE NO UNDERSTANDING OF THIS)

The x-ray said there was curvature of 33 thoracic (UPPER SPINE I ASSUME RIGHT CURVE) and 41 lumbar (LOWER SPINE I ASSUME LEFT CURVE).

Is that a totally different reading than the 32 and 23 listed on the MRI?

BELOW ARE THE READINGS GROUPED TOGETHER:

RIGHT THORACIC CURVE
MRI: 23 DEG VS X-RAY: 33 DEG

LEFT LUMBAR CURVE
MRI: 32 DEG VS X-RAY: 41 DEG

IT LOOKS LIKE THE MRI MEASUREMENTS ARE ABOUT 9-10 DEGREES LESS THAN THE X-RAY MEASUREMENTS (33 VS 23 AND 41 VS 32) WITH THE MRI MEASUREMENTS BEING LESS.

I ASSUME THE MRI WAS TAKEN LAYING DOWN WHILE THE X-RAYS WERE TAKEN STANDING UP. IS THIS CORRECT? AN 8-10 DEGREE DIFFERENCE BETWEEN STANDING UP AND LAYING DOWN CAN BE NORMAL. WHEN LAYING DOWN FOR THE MRI THERE IS NO LOAD ON THE SPINE. HERE IS A STATEMENT FROM A STUDY REGARDING COBB ANGLE FOR STANDING RADIOGRAPH (X-RAY) VS A NONLOADED SUPINE (LAYING ON BACK) MRI. YOU CAN SEE IT SHOWS A 31 VS 23 DEG DIFFERENCE (8 DEG). VERY SIMILAR TO THE DIFFERENCES YOU ARE SEEING WITH YOUR MEASUREMENTS.

"Mean Cobb angle for the major curve was 31 on standing radiographs, 23 on nonloaded supine MRI, and ........"

UNFORTUNATELY YOU PROBABLY NEED TO BE USING THE STANDING X-RAY MEASUREMENTS WHEN MAKING A DECISION ON SCOLIOSIS TREATMENT (33 AND 41 DEG NOT 23 AND 32 DEG).

THERE MAY BE OTHER FACTORS THAT RESULT IN THE DIFFERENT MEASUREMENTS (I.E. DIFFERENT DOCTORS CAN BE UP TO 10 DEG DIFFERENT IN MEASUREMENTS).

I HOPE I HELPED BUT PLEASE LOOK TO OTHERS TO EITHER CONFIRM WHAT I HAVE STATED OR CORRECT IT. I HAVE NO MEDICAL TRAINING ON THIS MATTER. THIS IS JUST MY BEST UNDERSTANDING AND EXPLANATION OF THE DIFFERENCES.

MICHAEL

titaniumed
04-21-2010, 03:21 AM
I'm sorry to hear about your daughters diagnosis.

There is a Grade II spondylolisthesis with L5 anterior and S1 by about 1.5cm.

http://en.wikipedia.org/wiki/Spondylolisthesis

If you look at the first picture in the article, you will see this. The shift on your daughter is less than that x-ray, her shift is a little larger that 1/2"

You are gaining experience dealing with Doctors... Sometimes this can be difficult, and takes time. You will need a "scoliosis trained orthopedic", as your daughter is a scoli.

Surgeons can be extremely busy people, and sometimes take their time responding. I found it best to use e-mail to communicate with the surgeons assistant.

I'm not a Doctor, just an old scoli.

Hope this helps
Ed

Pooka1
04-21-2010, 05:39 AM
You will need a "scoliosis trained orthopedic", as your daughter is a scoli.

This.

You need an "EPOSSS"

E = experienced
P = pediatric
O = orthopedic
S = surgeon
S = specializing (in)
S = scoliosis

Also, the laying down versus standing explanation From Michael1960 for the different Cobb measurements is probably correct in my opinion but there is a know inter-operator variance in reading of ~ +/- 10* that is probably driven at least in part by choice of different end vertebrae. I don't think it's possible to get 10* difference if lines are carefully drawn from the same vertebrae but that's just my impression.

Good luck.

Sherie
04-21-2010, 06:13 PM
I've said this many times on this forum, but feel that you need to hear it. My dd's scoliosis caused her a LOT of pain prior to surgery and she is strictly an idiopathic case. Most of her pain was in the lower back and especially if she had to stand around or walk for any length of time. It really started bothering her once she passed the 40 deg. mark. I'm sure it was mostly due to muscle fatigue. She also popped and cracked her neck a lot because she unconsciously held her head at an angle due to the shape of the curves. Don't let them tell you it doesn't cause pain, you know your dd better than they do. It almost makes me angry to hear how easily you were dismissed.

I don't know what to tell you concerning your dd's case except to get several opinions. It's a good way to get a lot of information. We went to 4 surgeons (actually 5 but I don't count the first one because he was so awful) and all of them took a good deal of time talking to us about surgery but my dd was already past 60 and it was a for sure thing. I took a long list of questions with me to each consult; you will get different answers so it's good to compare and see if there's a consensus of opinion.

As far as bracing, I was told by several surgeons that bracing is not very effective for lumbar curves. In the thoracic region, the ribcage can be pushed upon and forces the spine into alignment, but there is nothing in the lumbar region to accomplish this. Sheena was in the spinecor, it didn't reduce or stop the curves from progressing but it it did help her posture and gave her some support in her lumbar area. She did not tolerate the hard brace well and I don't think it would be a good option for your daughter anyways.

I also wanted to comment on the MRI, Sheena had one prior to surgery. Her spine was already showing degenerative changes, it doesn't take long. I'm glad we were able to do something while she's young and before she had serious problems in her spine.

Good luck, I hope your next appointment is better.

Ronda
04-26-2010, 12:30 AM
Two weeks today, still no call or letter explaining anything about this MRI. Disgusted!!

leahdragonfly
04-26-2010, 08:16 AM
Dear Ronda,

I would be disgusted, too. Two weeks is excessive in my opinion. I would make a polite pest out of yourself. Call every other day and explain that you are worried that you have not received the MRI results and would like to have the doctor call you to discuss them as soon as possible. Ask who ever you speak to when you can expect the doctor to call.

Spondylolisthesis can cause severe back and leg pain, so this could explain your daughter's pain. The first treatment is usually rest from physical activities that would make the pain worse, and anti-inflammatories like Advil. Your family doctor should be able to give basic advice about this--I would call and ask.

Michael gave you a good explanation for the variety in the curve numbers. When you lie down the force of gravity is removed from the curves, so they lessen when you are laying down.

Do you have a date for your second opinion appointment? If not, I would call and politely pester them about getting one.

Let us know how things are going,

Gryffindor
04-26-2010, 08:13 PM
Ronda: I share your frustration.

Which Shriners Hospital are you working with?

We've been trying to get at least what approximate month they plan on scheduling surgery for my daughter so that we can make sure we have enough money for the trip, make arrangements with my daughter's school and make sure we have a house sitter (we have pets).

So far we haven't heard anything.

Ronda
04-27-2010, 01:00 PM
Decided to try the nuisance theory since waiting isn't working. Called yesterday, no call back. Called today and finally called me back. The dr. has STILL not looked at her MRI results. They said last week when I called that he would look at them last Wed. Going on week 3 no answers. Last night her back was hurting so bad she was crying.

Gryffindor
04-27-2010, 09:09 PM
Ronda: My daughter's primary care physician prescribed Naproxen for her pain and it seems to help quite a bit. A heating pad also helps.

I know what you're going through as my daughter's pain is what started us down this road.

Three weeks to review the MRI results is a bit excessive. Have you discussed the MRI results with her primary care physician to see if there is any insight he can provide?

Ronda
04-27-2010, 10:51 PM
Her primary care dr. is getting her into the children's hospital in our state. She is not pleased at all with the scoliosis dr's opinion. She had ask me to give him her phone number when we went to see him so he could call her and discuss her case. He never took the number or seemed concerned. She called again today wanting to know if I had heard anything yet. She was very angry and said it doesn't matter how busy you are as a physician you make time to look at test you ordered before 3 weeks. Especially when it involves a kid on anti inflammatory meds and pain pills daily.

Ronda
05-09-2010, 05:51 PM
Something new has developed just today. My daughter said it is driving her crazy, she said it feels like her spine is itching. Sounds weird to me but thought maybe some of you had the same symptom. She described it as not the skin itching but seems to be under the skin around the spine area. It's in the lumbar region which is where her biggest curve is. Has anyone else had this feeling and has a Dr. explained what could be the cause?

Gryffindor
05-09-2010, 07:18 PM
Ronda: I just asked my daughter if she had this symptom and she gave a resounding "Yes!". Although, in her case, this symptom is affecting both her upper and lower back. Her MRI came back clean showing no problems other than the scoliosis.

I'm not sure what it means. I always think of itching in relation to an injury as a side effect of the healing process. I don't know how that would relate in this situation.

I'm glad to hear that your Dr. is reconsidering her as a candidate for surgery. Due to her age a brace is likely out of the question (same situation for us).

The 3 year thing was quite strange. Even with doctors that we disagreed with, they told us to have semi-annual x-rays taken so they could track her progress.

Ronda
05-09-2010, 10:48 PM
I guess since your daughter is experiencing it also it must be one of the symptoms. My daughters MRI showed a large neural defect of L5/S1. Now its just a waiting game of when we'll hear from them again. Been over a week since they called and said they wanted to see her again but yet no letter or call about an appt. yet. It took them over 3 weeks to let us know any results of the MRI and only then because I finally after 2 weeks started pestering them to death.