Idiopathic

[jann]

My husband and I are legal guardians of a 14.5 year old with idiopathic scoliosis. She was diagnosed during a routine physical exam for going into high school. I thought the doctor was joking when he asked, "How long has she had severe scoliosis?" Over the course of a month, she had a couple x-rays taken. Once the first x-ray was taken and the doctor came in, I thought he was going to say," This is what severe scoliosis looks like and this other sheet is your nieces scoliosis." Instead, the worse looking x-ray I was looking at was hers. Since her pelvic area, hips, and shoulders are level, she has a strange case. You don't notice it until you see her bend over; her curvature is between 48 -52 degrees. She is in pain and takes Aleve or Tylenol almost everyday. After the first x-ray was taken, they told us to come back in 2 months. When we did, it was a couple degrees worse. This is when they recommended surgery and starting talking dates. Surgery to me is fine when you have the right information and somewhat of an idea of the outcome. Unfortunately, many people had told me terrible stories of their back woes and stories that they had heard, mostly negative. The doctor we are speaking with now, whom will be the one to perform her surgery, has assured us that she would do well since she is active, her weight is good, AND she has age on her side. He is offering references from other parents in my exact position and is very open with his practice and how he works (bedside manner.) We have not set a date yet but we do plan to after talking about it with family and also my niece. She wants the surgery but is not looking forward to recovery since she will be out of commission for at least 6 weeks. Since she is active and loves to go boating, her summer will not be as fun but that is a small sacrifice for a big change in her life. I missed the special on adolescent scoliosis on the Discovery channel and I found this site just by browsing. I am hoping that there are others from my general area of the Midwest that can share their experience with me. A company that does not believe in the surgery called ISTC Medical is now contacting me due to my interest when she was first diagnosed and I needed simple information. I am not sure what to think of them at this point but I do plan to return their calls this week. I am glad for this site and hope that the support here continues.

[Snoopy]

jann,

My 14 y.o. daughter is almost 14 months post-op, so feel free to ask any questions you might have.

Mary Lou

[LATigner]

Info on ISTC

ISTC is the International Scoliosis Treatment Center. It is an off shoot of the Copes clinic STARS (aka STRS). One of the doctors left Copes and also the technician in charge of making the braces and they joined forces and opened ISTC. I know the technician because my daughter was in the Copes program through his San Diego clinic. I spoke with both of them last fall as we were considering whether to have another hard brace made (hers was too small) or go a different direction. We elected to go with SpineCor which is a flexible brace. There is a long post about SpineCor under Bracing.

In my opinion the people running ISTC are a lot more ethical than Copes but with way less experienced with scoliosis. My daughter's chiropractor out her in CA has been treating scoliosis for 15 years and has had numerous patients use this brace. ISTC has taken the Copes brace and made improvements. Her doctor feels it is still the best hard brace because of the air vectors. However, your daughters curves are very large and I'm not sure how effective it would be. The program is very intensive - brace, physical therapy, excercises, special diet, etc. and very expensive. Hope this info helps.

[gerbo]

My daughter is 12 , has a 25 degree curve and we are treating her with bracing and exercises.

It is damned hard work and takes over your live completely and can be emotionally very draining.

Still, her curve isn't too big and she has lots of growing to do, so there is scope for succes.

In your case yuo are dealing with a far bigger curve, which do not do well in conservative treatment and your daughter is past her growth spurts, so scope for improvement is limited.

If the curve i s aproblem (cosmetic/ pain) I would seriously look at surgery, which as I understand it, is usually very succesful and restores quality of life back to normal in many cases.

I am sure others are in a beter position to confirm this.

regards

gerbo

[Carmell]

Jann,

Welcome. I hope you will consider getting another opinion about your niece. Even if you retain the current doc as the surgeon to do the procedure, at least you will have another set of eyes looking at her and helping you make the right choices. Scoliosis surgery is rarely an emergency situation. You have time to research and find out the RIGHT surgeon, with the RIGHT recommendations at the RIGHT time. You mentioned that her body is well balanced. That is great. That will help you buy the time you need to figure out what to do with her.

Good luck and keep us posted.

[LeaEvelyn]

Hi Jann,
First off, I want to bid you welcome. By coming onto this site, you'll find alot of good suggestions, and different opinions. My son was ten when we found his scoliosis. The curve was 32 degrees. He was put into a boston brace for 18 months. By then his curve had reached 45 degrees, this is the point where his doctor quits bracing. Surgery took about three months to get a time set, so his curve was 57 degrees by the time of surgery. As you can tell, his curve progressed very rapidly after bracing was stopped. His major curve was from T-3 to L-3, with a very slight pelvic tilt. He did great with surgery, and is now almost a year post op. He didn't mind the restriction too much. He was in the eighth grade at the time. We did six weeks of home schooling and made out just fine with it.
I also have a neice with scoliosis. I noticed her curve about three months ago. I had her go to my sons doctor. She is almost fifteen and her curve is in the lower lumbar with a thirty-six degree angle. She is to go back every three to six months, to check for progression. The doctor doesn't seem to think she'll need treatment. He told them that curves in that area, along with her age, don't tend to progress. So it is a wait and see for her. Where is the curve located on your neice? By reading your post, maybe it would make you feel better to get a second opinion. I wish you the best of luck with everything. Take care.
LeaEvelyn

[jann]

Hello again!

I thank each and every one of you for replying. I am new to forum technology and did not know I had to check back for responses without getting a notice in my inbox! Sorry. Silly me. Thank you for welcoming me to the site. It is a great site for simple suggestions as well as information from people speaking from experience and also people like myself, those confused about what the next step should be. My niece has a 48-52 degree curvature and a few doctors have said that braces won't be enough for her at her age of almost 15 and the fact that she is maturing as a young woman too. The company that I was referring to was ISTC and I informed them about the options we are exploring. It was explained to me that not much improvement can come from braces since she is older. I appreciate the post saying that scoliosis is rarely an emergency situation. This teen is now on Aleve or Tylenol several times a week and we got her a rolling backpack which is helping some of her back pain. We have to schedule her for surgery by April in order to be put on the list. The doctor is supposed to be one of the best. His name is Dr. Jaglan and he is well schooled on the subject of scoliosis. I am trying to find out more info about him. I am adding a photo to show her xray taken with a digital camera. It is partial but shows her serious curve.
Does anyone have photos of their surgery before and after scars and all? My doctors office has a system where potential surgery candidates can get in touch with families that have had the procedure done to compare notes and such. Has anyone ever been offered this before?
*Snoopy, can you tell me how your daughter is doing now and how fast she recovered. (???)

[Snoopy]

Hi Jann,

Jamie is doing great! She had a rather long fusion (T3-L2), but a very quick recovery. In the hospital for six days; back at school part time at about 4 weeks; full time at about 6 weeks.

We have before and after pictures, but I'm never able to get them to a size that I can attach them. Any suggestions on that, anyone? If no one has any suggestions on how to reduce them, feel free to e-mail me at Spinesupport05@aol.com or send me a private message and share your e-mail address and I will gladly e-mail you the pictures.

Although the decision to have Jamie's surgery done was the hardest thing we've ever done, it is also one of the best things we've ever done and have never regretted our decision.

Mary Lou

[flowerpower]

Hi Jann,

I would definitely suggest asking to contact some of your dr.'s post surgery patients. It was very helpful for me to speak with other patients that had had the same type of surgery my son was about to undergo. They were able to give me info on what to expect during recovery, how the dr. was (bedside manner), the care of the nurses, etc. A week prior to the surgery the dr.'s surgical coordinator also gave us a tour of the hospital and showed us where to check-in, where the parents waiting room, operating room, post-anesthesia recovery area, and patient recovery rooms were. She also showed us everything that my son would be hooked up to; NG tube, drain, i.v.'s, catheter - and told us about how long he would need them. This was very helpful and it wasn't so shocking to see him after surgery because we knew what to expect.

Of course, this forum is very helpful also and I learned alot even before the hospital tour, but it made a difference to actually see everything. Oh yeah, at that last appt. the nurse also showed us a model of the spine with the instrumentation in place so we could actually see the "hardware" that was placed in my son's back. Of course, they will only tell you as much as you want to know - we wanted to know everything. I wish you and your niece the best, good luck with everything and please keep us posted.

Take care,

Renee

[LeaEvelyn]

HI Jan,
There are pictures of my son's back, before and after surgery, on the Spinekids forum. Just click here www.spinekids.com/shane.shtml and scroll down to the bottom of his story. Hope these can be of some help. If you ever need anything, advice, support or anything at all, you just need to ask. I told my sons doctor, that if any of his other patients needed support, they may call on me. So I don't think it is uncommon to ask your doctor to talk to someone who has went through a similar experience. I think it is a very good idea.
Take Care
LeaEvelyn

[flowerpower]

Hi Jann,

I sent you a private message (or maybe more ) I had to keep altering the message because it was too long so if it appears in your message box multiple times I'm sorry (not crazy, lol )

Renee

[LeaEvelyn]

Hi Jann,
I'm not too sure how the private messages work, so if you didn't get the reply from me, it is because I'm unsure if it was sent to you. If you want to e-mail me, I can be reached at llentz5525@yahoo.com. Thanks
LeaEvelyn

[rainbow2010]

Hi Jann -
My daughter and I both had scoliosis surgery (30 years apart). My daughter was back dancing (ballet, modern, and jazz) with limitations 6 months after her surgery. She had the part of the maid in our city's version of "The Nutcracker" at 6 months post-op and danced in 2 dances (ballet and modern) in her school's recital at 1 year post-op. At the end of 2 years post-op, she was dancing at school every day plus at a studio once a week. In her school recital, she was in 4 dances. Dance has kept her in shape and flexible. Her ballet teachers use her as an example of how to properly do a "flat-back" in ballet! Kids bounce back quickly if they have something to look forward to!!

[Cina2005]

Idiopathic Scoliosis

There's no causes for Idiopathic Scoliosis. My mum picked it up when i was only 3 years old and I've learnt to live with it ever since. I also have 2 aunties who have Scoliosis but theirs arent as worse as wht mine is. I've been seeing doctors for almost 10 years, I've also had tests done to see what caused my Scliosis to be so bad.