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Gryffindor
01-15-2010, 01:00 PM
Hello everyone.

My 14 yo daughter began complaining of severe back pain back in Nov. We took her to a local medical clinic where the doctor ordered a series of x-rays and was to call us back with the results.

Over the weekend while waiting for the results her pain became so bad that she was curled up into a ball on her bed crying. I called back the clinic and the Dr. had put a note on her file that if her pain increased to take her to the ER.

My husband and I took her to Phoenix Children's Hospital. They did blood and urine tests. They also ordered 2 X-rays and a CAT scan. Their diagnosis was severe scoliosis and for her to schedule and appointment with their orthopedic surgeons unit (off campus).

We attended the appointment the first week of December. Unfortunately, this unit seemed more interested in helping boys with sports injuries than girls with scoliosis. There was only one other girl in the waiting room. The Dr. took a 36" x-ray and said that she should be fine. I asked about bracing and he said it would not help. I asked about surgery and he said she wasn't sick enough. I asked about the quick onset and he had no answers. I did ask what her curvatures were. He replied T: 20 L: 35. He then went on to say how our insurance would not pay for another visit to his office but that he was going to prescribe her to start physical therapy. In short, I was greatly disappointed in this doctor. I also declined the physical therapy as every website that I have visited said there is no proven benefit in physical therapy for a scoliosis patient.

I immediately called her PCP and he said he would get us a 2nd opinion with a different doctor as he felt her case needed attention.

The 2nd appointment was at the end of December. This doctor did not have any of her previous x-rays to view as they were never forwarded to his office as they were supposed to be. He checked her over and pretty much repeated what the first doctor had stated. However, he did want to see the x-rays and wanted us to pick them up and drop them off at his office.

We were able to obtain her x-rays and dropped them off at her office the next week. I checked her 36" x-ray and it had markings on it showing her curvatures at T: 21 & L: 36. He checked her x-ray and found nothing wrong with her vertebrae (other than the scoliosis). He said she should be seen once a year for follow up.

In the mean time our daughter is in extreme pain due to her condition. She's been prescribed Naproxen for the pain and it does seem to help but she can't keep taking these for the rest of her life.

Due to the health plan that we are on she will now have to be seen by Children's Rehabilitative Services which is a clinic that operates out of St. Joseph's Hospital in Phoenix. She has a basic appointment with them at the end of Feb. She was also scheduled to see the Orthopedic Clinic in May. They DO have a scoliosis clinic but the first orthopedic surgeon put notes on her chart that she HAD to see one (of the two) doctors in the Orthopedic Unit and not the Scoliosis Clinic.

I checked up on the doctor that she's to meet with in May. He specializes in knee replacement surgeries and has "some" scoliosis experience. Ugh.

We have reached out to the Shriner's Hospitals for help and our application is currently pending.

So, can anyone tell me the following:
1. Is quick onset normal in scoliosis? She did NOT have the severe curvature at the beginning of the summer. We would have noticed since we have a pool.

2. In a girl that just turned 14 with curvatures of T:21 & L:36 how likely are those curves to progress and how quickly?

3. What can we do for the pain?

4. She is shrinking. When she was measured in November she was just over 5'2". Her last measurement put her just under 5". To me this says her curvature is getting worse. Am I correct?

scoliboymom
01-15-2010, 02:26 PM
I just want to comment on the "quick onset". My son's curve when first discovered was about 60*. I have photos of his back as he was sitting at the pool from 10 months before. There is absolutely no sign of scoliosis although I am sure with an x-ray it may have been diagnosed. From the time it was diagnosed his curve increased to 80+ withing 6 months. HIs curves progressed faster then most kids do. Your daughter should have another x-ray in 4-6 months just to set a baseline to see what the progression is doing.

Pooka1
01-15-2010, 05:38 PM
So, can anyone tell me the following:
1. Is quick onset normal in scoliosis? She did NOT have the severe curvature at the beginning of the summer. We would have noticed since we have a pool.

I'd like to know the answer to that also.


2. In a girl that just turned 14 with curvatures of T:21 & L:36 how likely are those curves to progress and how quickly?

Hard to say. You could have a much better idea about risk of progression (not speed) if you knew her maturity by determining her bone age from a wrist/hand radiograph.


3. What can we do for the pain?

This is an area that needs aggressive attention in my opinion. If the surgeon can't help then ask for a referal to a pain specialist. It is intellectually galling that we can send a man to the moon but are stumped by pain in many cases.


4. She is shrinking. When she was measured in November she was just over 5'2". Her last measurement put her just under 5". To me this says her curvature is getting worse. Am I correct?

I think so but would want it confirmed by a surgeon. That is a remarkable decrease, especially in just three months. That sounds like her spine is collapsing. Even my one daughter whose curve increased ~5* every month for at least 5 months didn't lose that much height I don't think. Yikes.

You need to get a referral NOT just to an orthopedic surgeon, NOT just to an experienced pediatric orthopedic surgeon, but to an experienced pediatric orthopedic surgeon who specializes in scoliosis.

You can find someone from this list of Scoliosis Research Society (SRS) surgeons:

http://www.srs.org/find/

You can find experienced pediatric scoliosis surgeons who simply don't join the SRS... my two daughters were fused by a non-SRS surgeon who we were referred to by an SRS surgeon. But at this point, given her pain and dramatic loss of height, I suggest you cut to the chase and look on the SRS surgeon list.

Good luck.

titaniumed
01-15-2010, 06:10 PM
I will reiterate Sharon's statement about seeing a Scoli specialist. This is very important.

Go easy with the Naproxen. NO drug usage should be taken lightly.

Try to get your x-rays burned to disc. Its good to have the dated records in your possession. I would also call the radiology dept on the cts. Get them burned to disc and the report. They are your property.

You do not want to be having cts done too often.

Good luck
Ed

mamandcrm
01-15-2010, 07:12 PM
Hi Gryffindor,

I'm not sure if you are able to travel with your daughter, but the Shriners in Philadelphia specializes in orthopedics and scoliosis. If you contact them more directly, I think they are pretty good about getting kids in quickly for appointments. I contacted them in regards to vertebral body stapling and the contact was Janet Cerrone (you can search for her name on this forum and her contact info will come up in someone's post, I'm sure). I'm not sure if she just is the contact for VBS, but I don't think so, I think you can email her for anything scoli-related. They see a lot of kids with scoliosis who are not candidates for that procedure. And if not them, definitely find a doc who sees a lot of scoliosis. We too were initially referred to a "knee guy" who we never went to see. Your daughter's scoli is not "severe" (strictly going by the numbers), more moderate, and she is probably nearing the end of her growth. BUT her pain obviously is severe as you know so she needs attention from someone who knows what they are looking at. Good luck to you.

mariaf
01-15-2010, 09:09 PM
I'm not sure if you are able to travel with your daughter, but the Shriners in Philadelphia specializes in orthopedics and scoliosis. If you contact them more directly, I think they are pretty good about getting kids in quickly for appointments. I contacted them in regards to vertebral body stapling and the contact was Janet Cerrone (you can search for her name on this forum and her contact info will come up in someone's post, I'm sure). I'm not sure if she just is the contact for VBS, but I don't think so, I think you can email her for anything scoli-related. They see a lot of kids with scoliosis who are not candidates for that procedure.

That is correct that Janet is not only the contact person for VBS but she is the Physician's Assistant to the entire Spine Team at Shriners Philadelphia. She is extremely knowledgeable and very nice. Her contact info is in my signature. (And yes, often by contacting her, you can get an appointment relatively quickly.)

Good luck, Gryffindor!

jrnyc
01-17-2010, 10:26 PM
Hi Gryffindor
my curves were barely noticeable til they got above 35-40 degree level...even now, on a day when the pain is not too bad, i stand so straight that most people dont notice...unless i take my blouse off or something..though tailors noticed one hip higher than other when i had to have a dress shortened....

i think a pediatric scoli specialist is vitally important...you need all that expertise....please do not settle for less!

there is so much medicine still doesnt know...maybe rapid onset is a subset unto itself that needs to be studied..maybe some scoli just goes un-noticed til it gets bad or causes pain....i hope your daughter gets the help & close monitoring she needs...the anti-inflammatories can destroy the stomach after prolonged use, so that is one of the issues with Naproxen...

with you there to fight for her, she will get the medical attention she needs.....i would not settle for a doctor who is not sympathetic to her pain! children should not have to deal with that every day of their lives, so i hope you find a doctor who takes this more seriously & works with your child to find some pain relief for her! can you talk to your insurance people & see what can be done to get her to the right scoli specialist? knee expertise will not suffice, as anyone with a working brain could figure out...sometimes insurance people are approachable...dont understand why the medical folks you are dealing with are so rigid!

best of luck

jess

skevimc
01-18-2010, 05:18 PM
So, can anyone tell me the following:
1. Is quick onset normal in scoliosis? She did NOT have the severe curvature at the beginning of the summer. We would have noticed since we have a pool.

2. In a girl that just turned 14 with curvatures of T:21 & L:36 how likely are those curves to progress and how quickly?

3. What can we do for the pain?

4. She is shrinking. When she was measured in November she was just over 5'2". Her last measurement put her just under 5". To me this says her curvature is getting worse. Am I correct?

1. As has been noted earlier, curves can go un-detected for decades. I can verify that one 35-40 year old mother of a scoliosis patient had a ~20 and didn't find out until she had a chest x-ray for an unrelated reason. Surface measurements or obvious asymmetry can yield false positives and false negatives for curves. While it can't be said with 100% certainty, it is likely that your daughter had a curve that wasn't detectable. It is also likely that it was/is progressing in some way.

2. Progression risk depends heavily on her skeletal age. This can be assessed in a couple of ways. Did either of the doctors you saw mention the Risser sign or the tri-radiate cartilage (TRC)? Risser 0-3 has a higher risk for progression and 'open' TRC has a higher risk for progression. Another way is the length of time since she started her periods (assuming she has). Skeletal age and menarche are fairly correlated. If she started ~ 2years then she probably won't see too much additional skeletal growth. This is good. Pre-menarchal (haven't started yet) up to 12 months post means there could be quite a bit of skeletal growth left.

The more skeletal growth, the higher the risk for progression.

4. Studies looking at height correction due to scoliosis show that a 2 inch change in height would only occur in severe double curves, i.e. double 40 curves and larger. It is certainly possible that her height has decreased due to the curve but it also sounds like there is some measurement error at the doctor's office. I'm about 1/4 inch less than 6 feet tall and I had one doctor's office tell me I was almost 5'10". As much as they want to think it, doctor's offices are not perfect. :)

Overall, the measured curves are considered moderate. I only tell you that to try and help you understand why the doctors seem to be ignoring you. I completely understand that while clinically they might be considered moderate, they are quite severe for you and your daughter. Add to that the shock that it seems like they just appeared overnight. You are understandably freaked out. If you feel comfortable enough to give out some more information there are a lot of people on here that are pretty familiar with the scoliosis literature, we can help translate what the doctor says and point you in the right direction for more information.

Good luck!

ddb
01-18-2010, 07:25 PM
Just wanted to add that my daughter went to PT. At the time we didn't think it did any good. Small excerises to strenghten her core, and stretches. When she is in pain, especially after a long day in school she does these excersices and says it helps.

I don't think PT will cure or stop curves, but did have a useful place for my daughter.

Dee

Carmell
01-23-2010, 09:03 PM
Just a few thoughts...

1. Physical Therapy CAN help with discomfort. Having scoliosis makes the body asymmetric. When you have strain on the muscles pulling on one side, it can be uncomfortable. PT can help reduce the stretch and pull and tension on the muscles. I'd give PT a try.

2. Shriners from Salt Lake City has outreach clinics in Phoenix. They have excellent scoliosis specialists. Is this the Shriners you are applying to?

3. Quick onset probably isn't a typical scoliosis quality. However, you normally can't SEE scoliosis from the outside, unless the rotation of the spine is significant. Rotation can also add to the discomfort (again, pulling muscles in places they aren't used to being pulled).

Exercise is great for helping to reduce pain/discomfort. My daughter (now 23yrs old) has a lumbar curve of about 35 degrees (has varied over the years since age 13 from 23-39 degrees). She used to dance. Dancing was great exercise. Now, sitting at the piano or computer all day cause her discomfort. Pilates is good. Always ask a doc before doing something your body isn't used to. There are good exercise suggestions at http://www.iscoliosis.com Specifically made for teenagers with scoliosis.

Also, pain with moderate scoliosis is not too common, especially in young teens. I would ask a ped. ortho (specializing in scoliosis treatment) about having an MRI to rule out any cause of the scoliosis and pain. Does she have problems with numbness or tingling in her feet/legs? Does she have occasional unexplained low back pain? Does she have bladder or bowel issues? These would all be indicators of a spinal cord issue. I'd be asking the docs more questions.

Good luck!

Gryffindor
03-05-2010, 06:54 PM
Sorry I haven't responded. My computer crashed for the second time in just a few months.

Today we went to the Phoenix Shriners Outreach Clinic. What great people! Each and every one of them were so caring.

Turns out my worries about the quick onset were correct. Her measurements from Dec 7 were T:21 L:36. Today they came out at T:36 L: 48. The doctors were greatly alarmed by the progression. They've ordered an MRI for next week to help clear her for surgery. We will be going to Salt Lake as soon as they have an open spot.

SIsForSarah
03-10-2010, 05:26 PM
That's good that you followed your intuition and got another opinion and another set of measurements. I felt like my scoliosis came out of the blue when it was diagnosed when I started having back pain when I was 14. Within two months, my curve progressed 15 degrees, but because it had been bad to begin with (over 45 degrees) I was already scheduled for surgery. I'm wondering if the pain, comes with the sudden onset, because I've read on here that some with severe curves don't have as much pain. Good luck to you and your daughter with everything - surgery's not fun, but for me, it relieved the pain and I've led a normal life since.

jrnyc
03-10-2010, 09:32 PM
Hi Gryffindor
great that you followed up with everything that was needed...instincts are so important...in parents & in kids...too often, i believe, they are discounted by doctors who think that only concrete medical facts tell the story...but patients, and their advocates, know differently!

Sarah...i never heard of large curves not hurting...and oh gosh, dont know if you call mine large...yet...just 40 top & 61 lower...but boy oh boy...do they ever hurt...course, the lower hurts way worse, & guess the degenerative discs, arthritis, spinal stenosis, & rotation arent helping! :rolleyes: but which came first...they tell me the disc collapse was expedited by the scoli...& so my back just keeps collapsing...L3 on L4, L4 on L5, and so on & so on!
lovely! :rolleyes:

i dont know of many large curve folks not in pain...cause by the time it gets large, well, often other faults of the spine kick in!


jess

Gryffindor
03-11-2010, 10:32 AM
Thank you for all of your replies.

We're starting to get all of the preliminary medical tests done. She's scheduled for an echo cardiogram and an MRI for late this month.

She's terrified about the MRI. Yesterday morning she pretty much lost it emotionally and thank goodness we already had a consult meeting set up with her primary care physician. He was able to explain the MRI to her pretty clearly and why she had to have it done.

I think it's going to be one heck of an emotional rollercoaster for the next year.

My main concern throughout all of this was the pain she's been experiencing. I just felt that if it's not normal for most scoliosis patients to have pain that something just wasn't right. The only thing I can think of is since her curves are changing so rapidly that it's putting enormous strain on her back muscles to compensate. It's like compressing a spring causing more and more tension. If we hadn't been fortunate enough to obtain our Shriners clinic appointment, we wouldn't have found out how bad she was progressing until late May.

At least now she'll be having the surgery during her summer break thus giving her less time away from school (they've been all over me for missed school days).

Ronda
04-05-2010, 12:30 PM
I feel your pain. We are in the same boat as you but my daughter is 16. Had physicals every year for cheerleading and scoliosis screenings at school. Never was found seemed to come up out of the clear blue. Within 6 months to a year it has already gotten to a 41 in the lower and is forming an "S". Shriners Hospital said since she is done growing it will not change. They based the done growing on her having started her period, which that happened when she was 12. SO that hardly explains the rapid onset of Scoliosis. We are at our wits end and don't know what to do. She has pain daily in her lower back and has just within the last 3 weeks or so started complaining about pain in her upper back. Severely frustrated and beaten down have no clue what to do. I just want to help her. She's taking pain meds but can't continue that the rest of her life. I don't want a junkie on my hands. I know that sooner or later she'll become intolerant of this pain med and it will just have to be increased and then the story just replays till I have an addicted daughter on my hands.

Gryffindor
04-06-2010, 07:46 PM
We've received the results back from the echo and the MRI. Both were normal.

All we're waiting for now is the actual surgery date.

Has anyone been to the Shriner's Hospital in SLC?

Gryffindor
05-07-2010, 07:36 PM
Finally received a surgery date today: August 23rd. We have to be in SLC on the 22nd.

Ronda
05-09-2010, 05:58 PM
I know in someways you have to be relieved. At least now you have some answers and know that your daughter is going to be getting something done. We're still in limbo with our Shriners Dr. :mad: Found out she now has a kyphosis of 63 degrees in our MRI to go along with the 41 lumbar and 32 thoracic. The nurse prac. called over a week ago and said the dr. wanted to reevaluate her for scoliosis surgery. All that after telling us to have another x-ray done in 3 years to see if its changed any. Thank God you've finally got some answers though. I hope everything goes well for her and you as well.