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View Full Version : 12 year old just diagnosed....now what?



sarahdan
04-05-2005, 07:45 PM
Our 12 year old daughter has just been diagnosed by her pediatrician with
scoliosis. We are very concerned even though her x-ray showed only 10 degree curvature. in recent months she has become very round-shouldered and asymmetrical - her one shoulder is off by at least ONE INCH. We have been referred to the Scoliosis Clinic at BC CHildrens in Vancouver.
Does anyone know how long the wait time is to get an apppintment and will they brace her and is it correctable even tho the curvature is "mild" ?
Her posture is bad and i worry it will get worse!!!

Hoping for reassurance!

Littleone1016
04-05-2005, 08:19 PM
Try not to worry to much until you can talk to someone who specializes in Scoliosis. You will have plenty of time to make any decisions on the best course of action. A ten degree curve is pretty mild and now you have knowledge on your side. But they will take more x-rays at Childrens and be able to give you a better idea of how serious things are. If they decide that the curve high enough they might try to put your daughter in a brace until her body is mature. Most doctors will not consider surgery until the degree of the curve is at least 50. Once you and your daughter do a little research and/or see the doctor write down a list of questions you have for your doctor. Sometimes writing things down (especially during the appointment) will help you and your daughter remember and understand what the doc says. Good luck with your appointment, please let us know how it goes.

Justin
04-05-2005, 10:36 PM
Hi,

I'm going to tell you my story to comfort you since I too was eager to know the facts at that time but turns out it took like 2 years to realize that my spinal problem kyphosis+scoliosis is due to congenital reasons instead of idiopathic(unknown, puberty) which they first thought.

I am 18 now and had my final appointment at BC CHildren's Hospital with Dr. Reilly last November 2004. I now will see adult surgeon Dr. Dvorak in 6 months.

Looking at my radiology report, i first started going to BC Children's Hospital on April 11, 2002 at 15 years of age.
Yes, the radiology report is free the first time. It tells you the degrees of the curves written by the radiologists, mri exams, ultrasound, etc.

It says i have a thoracolumbar curve, a long right scoliosis curve measuring 11 degrees. Now 2 years later, i have a 47+ degree right scoliosis curve. I did grow in between these 2 years so that is an important factor.

My doctor didn't brace me because my curve was congenital and that wasn't going to be effective at bracing.

It took about 2 month wait back then for me to see the specialist at BC Children's Hospital for the first time since my family doctor referal.

The first several appointments the time from each appointment varies from like 1-3 months in between as they would like to know and learn more about your curve and its progression then after a 6 months monitoring is sufficient.

Well during the time at BC Children's Hospital, my shoulder was even so I don't know anything about that. If your daughter is found to have congenital scoliosis and/or kyphosis most likely both MRI and ultrasound will be done. MRI is like this plastic coffin thingy where you go in for like 30minutes and don't move. It's basically a more advanced x-ray and can see if your daughter has any spinal cord problems, etc. Ultrasound is basically this gel on camera where they put harmless gel on your stomach and you can see how your organs are doing. It is done because congenital scoliosis and/or kyphosis can affect the kidneys, bladder health. Mine turned out both to be adult sized and exceeding normal power :D

The 2 scoliosis surgeons Dr. Reilly and Dr. Tredwell have done numerous cases of scoliosis, kyphosis so you're in good hands. ;)

Mary Lou
04-06-2005, 07:44 AM
Sarahdan,

Welcome! I know things are probably very confusing for you right now, but you've found a good place not only for information, but also support. When your daughter was x-rayed, did they just x-ray her from the front or did they x-ray her also from the side? I think they call that a lateral x-ray. The reason I ask this is because of your "rounded shoulders" remark. My daughter has Kyphoscoliosis, which is both Kyphosis and Scoliosis. What Justin neglected to tell you was that Scoliosis is a side to side curve where Kyphosis is more of a front to back curve. Your daughter's shoulders sound like my daughter's before surgery. My husband would walk up behind her and pull her shoulders back and tell her to keep her shoulders back. She would say I can't and we thought it was pre-teen bad posture. Turns out she has Kyphosis, which of course wasn't diagnosed until after the Scoliosis was diagnosed.

For us it took two months to get an appointment with a Pediatric Orthopedic doctor, which is what your daughter needs as well. Usually, for kids with a Scoliosis curve of less than about 20* they "watch and see" which means they follow her closely and watch for progression, especially during puberty and their growth spurts. From about 20 or 25* to 40 or maybe 50*, kids are usually braced until skeletal maturity is reached. If their curve reaches 40 or maybe 50*, it depends on the doctor, they start considering surgery. All of this is based on skeletal maturity, which your doctor can do x-rays to find this out.

Sorry this got so long. I hope I haven't confused you too much.

Mary Lou

sarahdan
04-06-2005, 03:27 PM
I really appreciate your replies. I cant actually recall whether they x-rayed the side as well - I was so worked up that day - my mind is blank!

I called the pediatricians office today and they said they are NOT referring her to the Scoliosis Clinic yet as her curve is not severe enough and that she must be x-rayed again in 6 months.

I find this unacceptable! When I callled the Clinic today, they said that if they get a referral now, we will only get an appiintment in the Fall, as its not severe.

We really dont want to wait so long!! Am I being to pushy/aggresive if i insist to my pediatrican that we want a referal?

If we wait another 6 moths, then we will only get an appointment with the clinic NEXT YEAR!!

Boy, I am frustrated!

I realy appreciate this forum and all your support. :)

nikyergen
04-06-2005, 04:25 PM
Sarahdan,
You most definitely are not being pushy about your daughter. I am not sure where you live, but check the website www.shrinershq.org. It is the web site for Shriners Hospital. Call the nearest Shriners Hospital and fill out an application, I think you can do this over the phone. You don't have to worry about a referral from your pediatrician, which isn't a pediatric scoliosis specialist or a pediatric orthopedic specialist. You don't need to pay for services at this hospital. They do the A-Z in orthopedic services, which is what scoliosis is. Therefore, you don't have to go through the referral garbage that insurance companies require. If you can't afford to drive the distance, meals for the trip, motel if you have to stay the night, they will help you with this, also.

At the age you daughter is, she should be hitting some major grown spurts and those degress can stay as they are, change slowly, or do some major changing.

Did the clinic give you her degrees when you called them today? They should of, that is information that is handy to know from appointment to appointment.

All three of our daughters have kyphosis/scoliosis. They are all three at different levels also. Our middle daughter has a mild curve and is what we call a wait & watch. She is xrayed every 6 months. Our youngest daughter is in a brace to keep hers from getting any worse. Our oldest daughter had an 88 degree curve and is done growing, therefore she ended up with surgery. You may see that there are a lot of surgery cases on this forum, but not all of them end in surger. There are lots of successful corrections.

If you have any questions, just ask, ask, ask. There are lots of moms on here that understand how you feel.

'til later,
Nikki

Justin
04-06-2005, 06:30 PM
Speaking of Shriners since you live in Vancouver, BC like me. I will tell you how to apply. First go to http://www.shrinershq.org/downloads/application.pdf and print out the application form then fill it out.
Then go to this Shriners Temple and hand in the completed application form and they will send it to Portland Shriners Hospital or Montreal Shriners Hospital.
Gizeh Shriners
Contact: Jim Harrison
3550 Wayburne Drive
Burnaby, B.C., Canada V5G 3K9
Telephone (604) 291-7707
Fax (604) 291-9147
E-mail: shriner@paralynx.com
http://www.shriners.bc.ca
The Gizeh Shriners is on a road just before BCIT. It's just about 3-4 streets up on Canada Way and Willingdon Avenue. So drive up Canada Way and you will see a road called Wayburne Drive.

You are only allowed to choose Portland Shriners or Montreal Shriners only because so that the hospitals get not crowded. There is also a Shriners in Spokane, Washington but i phoned them and they said i could only go to Portland.

In about 4 weeks, the Shriners Hospital send you a letter to your home saying your appointment information, etc and how to get ready for it.
My choice was Portland Shriners although they accepted me and had an appointment, i phoned in to tell them that my specialist had refered me to this adult surgeon because i'm 18 and me and my parents have more confidence in the new surgeon then Portland Shriners because of my age issue since if any complications occur after age 21 Shriners won't be able to help and i'm left searching for help. Enough said, the people at Portland Shriners took care of it easily and i feel they were very nice people :)

This may sound not optimistic but even if you applied for Shriners there's still a waiting list. Mine took like 3 months total from the day i applied.
To tell you the truth, most of my appointments at BC Children's Hospital have been the same. The time i actually see the doctor is about 10-15 minutes.
1. Check in to Pediatric Department
2. Wait in Patient Room until they call you to go to Radiology Department
3. Change into gown they got there and wait until they call you for X-rays
4. Change back into normal clothing and wait for your X-rays
5. Give x-rays to Pediatric Department
6. Wait in Patient Room until they call you to the assesement rooms
7. Wait in assessement room while a group of specialists closed door talk about your condition.
8. Doctor arrives. Tells you your curves degrees, asks for any new symptoms, problems, etc. Checks your standing height, curves in your spine, flexibility, etc. Recommendations, etc.
9. If x-rays go wrong, such as no side x-ray(kyphosis), wrong magnification of x-ray(doesn't show the area of spine the doctor need to see), etc you would need to go redo.

Overall, I waste more time waiting then seeing the doctor. Expect at least 2 hrs each appointment.
However, i feel it's worth the monitoring as it gives me a sense of security since it's good to know how your problem is doing. So, yes it is worth getting the referal to BC Children's Hospital as although only 1 doctor sees you, more then 1 doctor assesses you.

PS. No i did not go to Shriners Hospital, i turned them down.
I went to BC Children's Hospital on Oak Street & 28th Street in Vancouver, BC

nikyergen
04-06-2005, 06:45 PM
Justin,
Did you use Portland Shrine Hospital? If you did, would you please post under the surgery thread, a thread called "Please post your Shriner Hospital experience. There are so many people that are unsure about Shriners because they are free. It is hard to convince them you have some of the best doctors in the world there and their services don't cost anything. Just trying to educate the general public is all.

Sarahdan,
I didn't realize you are in BC. Even though, Shriners flies and shuttles patients and their parents to and from the hospital all the time. While Crystal was in the hospital there were two families there from BC. One had flown and the other took the Shriners shuttle. This was at no expense to them. One of them had the same doctor, Dr. Krajbich, as Crystal and the other one had Dr. D'Amato (SP), another spine specialist at Shriners Portland. I didn't realize you lived so close to a Shrine Office. If I did, I would of had you visit them personally. Anyhow, it may be a long ways to go, but you get assistance the whole way.

The other thing we liked about Shriners, is that our daughters will be treated until their 21st birthday, because they were diagnosed before they were 18.

Let us know what you find out from them.

'til later,
Nikki

PS: Thanks Justin for giving her better directions than I did. Nikki

sarahdan
04-06-2005, 07:00 PM
All i can say is, "YOU GUYS ARE JUST INCREDIBLE!!!!"

I will certainly keep you all posted. It is so reassuring to have "stranegrs" like you sharing your experiences with us and giving us so much advice!

:)

JillfromCanada
04-15-2005, 01:58 AM
Sarahdan,

I too got my surgery done at BC Children's Hospital. My surgeon was Dr. Stephen Tredwell, but I hear that Dr. Reilly is fabulous as well. A lot of people go through life with a 10 degree curve and it never changes...that would be why your pediatrician wouldn't seem to concerned. I wasn't braced until I was over 20 degrees, and then surgery was discussed when I was in the 40s. I would take the appointment that your pediatrician offered you at the Childrens in the fall. If you go see one of the Scoliosis surgeons right now, they are probably not going to do much, and will just tell you to wait to see how it progresses. By the time your fall appointment comes along, your daughters spine will have progressed (and they will discuss bracing) or nothing will have happened (and they will continue to monitor it).

I can see why you are concerned, because of course it's your daughter. In my case I progressed from 0 to 60 degrees in less than two years , so my mom freaked out.

While at home I would continue to monitor her curve on your own. Instead of measuring heights on a wall, measure where her shoulders hit. As most Scoliosis curves progress, your organs/body begins to rotate. One shoulder may become much higher than another (the same thing can happen with the hips).

I am from Salt Spring Island, so getting to Vancouver for a 10 minute appointment was often a pain....but looking back it was definitly worth it. The surgeons there do amazing work, and even though I'm post-surgery I still keep in touch with Dr. Tredwell. The first time you make an appointment with the Scoliosis clinic, is the longest wait. After that it will get better and better. Normal would be a 6 month wait for the first one, and then 8-10 weeks for the rest. I came with a list of questions when I first met Dr. Tredwell, and he happily answered all of them. He definitly realizes why people have concerns about Scoliosis, and is good at making you feel comfortable about any procedure.

A surgeons two options:

Bracing is not normally done at the hospital. The surgeon would refer you to a place that specializes in brace construction. It's a bizarre experience when they make the brace, but its just a solid piece of plastic with a lot of velcro. It is extremely uncomfortable at first but a lot of people get used to them quickly. As the brace works to correct the spine, the brace would be updated with additional padding/hardware. If the brace continues to hold the spine in place until after your daughter is done growing then it will probably stop progressing. If bracing doesn't seem to help, surgery is looked at as the next option.

Even though I was young when I got my Scoliosis surgery...I researched it unbelievably. I felt extremely comfortable that Dr. Tredwell was performing my surgery as he is one of the top orthopedic surgeons in Canada. Another bonus he has never had a so-called "mistake". I ended up having a 10 hr surgery, and then was in the hospital for a week. I returned to school after 4 weeks off, and slowly got back to normal. It was definitly not as bad as I imagined it to be. The worst part would have been the first one or two nights when you got back home, as its rather hard to sleep and the pain starts to kick in.

I had my Scolisis Clinic "Reunion" a few years ago. After so many years post-- surgery the Childrens Hospital get all of the teens who had Scoliosis in the same month as you together for their last meeting. They confirm that you are doing well, and then give you the pregnancy talk, and you're done. Some people never have to see their surgeon again.

I have had a few issues since my Scoliosis surgery, but it's nothing I haven't handled okay. I have started to get a slow-progressing arthritis in my spine, but I was warned of that. It is really important to stay active because it lessens the pain. If I do yoga/pilates and light cardio a couple times a week it makes a huge difference.

I don't mean to scare you at all, but I definitly found that the more information I knew about Scoliosis, the more comfortable I felt with having it.

I hope some of this was helpful!!

Good luck.

P.S. The only reason I wouldn't go to BC Childrens would be if you were in your late teens. Since it is a Childrens Hospital, they do only treat to age 19, and then you have to be transferred to Vancouver/Victoria General. Seeing as you daughter is 12, this will probably be a perfect match for her.

sarahdan
04-15-2005, 12:04 PM
Thanks so much for your comments. The update is we saw the pediatrician yesterday and we discussed Kyphosis - which was never mentioned before I did my research!! Actually it was someon on tehis message board thats uggested my daughter ,might have it!!!! Thank God for you guys!!

The first and only x-ray we dd was only for scoliosis so we will go back next week for another x-ray to look for Kyphosis and she is doing her best to get us an appointment with Dr Tredwell.

All i want is regular monitoring and an expert to llok at my little doll and tell us what we can do about it. I cannot just sit back and watch her curve over!!

The pediatrician also mentioned that if she cant get her in to see Tredwell (if theres no kyphoiss) and the degree is too low - then we could go see Dr Sandeson at UBC Sports Medicine Clinic. Ever heard anything about that?

Thasnks sooooooo much for your advice!

Sarahdan

Mary Lou
04-15-2005, 06:15 PM
Sarahdan,

I am so glad you are getting some cooperation from you doctor. Some doctors don't trust a Mother's instinct, but I trust it completely! Keep fighting for what you feel is right.

You and I have discussed Kyphosis in the past, and just wanted to let you know that Jamie's Kyphosis wasn't discovered until she went to an orthopedic doctor. Our family doctor diagnosed the Scoliosis, but really had no reason to order the lateral x-rays.

Good luck next week and keep us posted on what's going on.

Mary Lou

lrmb
04-15-2005, 08:32 PM
Jill... what was the "pregnancy talk"??? Was it about pregnancy after fusion/with scoliosis? thanks!! Laura

JillfromCanada
04-16-2005, 08:57 PM
The pregnancy talk (for people with fusions).

My doctor just wanted to make us aware that scoliosis can be hereditary, and that there is a very small chance that our children could also have it. Also since I my curve was at the upper half of my spine, I would have no problem with child birth and there would be no problem having an epidural.

Apparently people with curves in their lower spine can have quite a few issues during both pregnancy and child birth.