how to go about a second opinion?

[bgaster]

Hello all,

My daughter is now to the point that she requires surgery. She is 12 1/2, with a 51 degree curve, increasing aggressively (as the ortho. ped. puts it). After all my years of research I am sure that surgery is required, but I would like to do the prudent thing and get a second opinion. Her Dr. indicates he will do posterior approach. I think if anything differs in the opinion it will be the approach only.

Anyway, I have never had to look for a second or third opinion on a medical recommendation. How do you go about it? Just pick a Dr. and make an appt.? Work with her Dr. she has had for 5 years? Work through the insurance company?

Thanks,
Becky

[LindaRacine]

Hi Becky...

You can always ask your daughter's surgeon or her pediatrician for a referral for a second opinion, but I probably wouldn't go about it that way unless I was restricted by my insurance company.

I think a much better way would be to get recommendations from other patients in your area or here on the internet. Where do you live?

Regards,
Linda

[bgaster]

Hello Linda,

We're in Salt Lake. Her Dr. already comes highly recommended. The only other Dr. I have had recommended in this area is a Dr. that works in the same office at Primary Childrens Medical Center. There is a Shriner's nearby and another hospital, St. Marks, that I know treats scoliosis patients. I was thinking I just need to call the Shriner's hospital and one of the Dr.s at St. Marks and make an appt.

Do you know what they require? I have xrays going back over a year. Pre-brace, during bracing, and the most recent.

Thanks,
Becky

[LindaRacine]

Becky...

You can download a Shriners application at:

http://www.shrinershq.org/hospitals/eligible.html

I think getting a second opinion at Shriners would be an excellent idea.

Regards,
Linda

[bgaster]

Thanks Linda.

[isaacschicky]

good luck

I hope ur daughters surgery turns out great! My aunt had to get surgery this summer. It was a huge success! She is doind great as far as her recovery. I might have to get surgery when i am older. But for now i am just wearing the brace. U will be in my prayers. God Bless

[bgaster]

Thanks isaacschicky.

[Carmell]

Hi Becky,

My son's ortho is at PCMC (we live in Utah). If you need a second opinion from another ortho in the SL area, I have two good recommendations... one is Dr. John Braun at the UofU, and the other is Dr. Santora at Shriners. Both come highly recommended by parents in this area.

I wish you the best! If you have any questions about the facilities or anything about the hospitals, let me know. I'd be happy to share our experiences. Braydon just had his latest surgery at PCMC last week (Sept. 22). That place is our home away from home... ugh...

Just a few things to note - make sure when you do get recommendations, they include the calculations for your daughter's potential growth. Also, make sure they have lots of experience to back their recommendations. Both Drs. Braun and Santora have good experiences with various types of scoliosis surgery. Braydon's surgeon is Dr. Smith, who is well-versed in several types of scoliosis repair.

I wish you the best!

[bgaster]

Thanks Carmell. I have put in the application to Shriners. I'm not sure they will accept us as both my husband and I work and I have good insurance. I would really love to have a second opinion from them though. Dr. Smith is also my daughter's Doc. I have scheduled the surgery for June. She will have a 6 month check up before then in March.

I have spent a lot of time at iscoliosis. Lots of questions are answered there by different Dr.s', and since Dr. Smith is the founder and editor of the site, I can get a lot of the general questions answered there, by him. One of the FAQ's is the question regarding growth. One of the Dr.'s answer includes a formula for calculating growth loss. Based on his formula she would lose 1/2 to 3/4 inches. But then there is the gain from straightening out the curve. I am not too worried about the height loss because she is 12, about 1/2 through her adolescent growth. And has the genes for growing tall. When she was 2 her pediatrician estimated she would be close to 6 feet tall. He asked if we wanted to give her hormones to SLOW DOWN her growth. I didn't even consider it for a second as I'm close to 6 feet myself and saw no reason to worry about being tall.

Anyway, thanks for the reply. We have time to work through the second opinions. But I think the waiting until June is going to kill my daughter. She is so stressed out, with adjusting to 7th grade and then worrying about surgery. I think I may need to find some counciling for her.

[Carmell]

Hi again, Becky,

I just wanted to comment on the psychological issues that go along with scoliosis. Two of my three children have scoliosis - both with very different types. My 17yr old daughter has adolescent idiopathic scoliosis (40 degree lumbar curve, with 26 degree upper thoracic compensatory curve, with a significant rotation of the spine). Braydon was born with congenital scoliosis, including multiple malformations of the spine.

Braydon has surgery every 6 months to expand the rods that are supporting his spine and keeping his chest open. Surgery anytime is filled with anxiety and worry. Having back surgery every 6 months for years on end wears on you, emotionally. Braydon has had periods of anxiety that no adult, let alone an 8yr old, should go through. As he gets older and is more aware of the reality of the surgeries and the "whys" of having surgery, the less anxious he is. However, it still interferes with school and friends and life in general.

We have visited twice with a child psychologist at PCMC and she has helped a lot. She has taken the time to get to know Braydon a little and give him some suggestions on how to help himself not be so filled with anxiety. He tends to be a perfectionist, and she has showed him that it's okay not to be that way all the time. He also feels good about school - has good friends and an understanding teacher. This helps a lot. Braydon still has anxiety, and takes medication before bed at night, but overall he is doing very well. Handling his life as well as anyone could hope. These surgeries are keeping his body healthy and strong and that helps too. When you feel better, your mind feels better too.

I have lots of opinions on this subject, but I'll stop here... Scoliosis is definitely a family affair, and a life-long issue to deal with. Hopefully there are many more good days than bad for all of us!

[bgaster]

Thanks for sharing your experiences with your son. I hope he is doing well, both physically and mentally.

Did you get referred to the PCMC psychologist through Dr. Smith's office?

Becky

[Carmell]

Becky,

I didn't go through Dr. Smith's office because my insurance didn't require a referral. However, the same person we met with (Nancy Cantor) is the same psychologist Dr. Smith recommends for his patients. She also sees patients in the spina bifida clinic, so she does have experience with children who have chronic medical issues. At first, I wasn't sure what to think of her. But I soon grew to appreciate her approach with Braydon and her suggestions have been very useful, in most cases. Like I said earlier, we only met with her twice, yet her suggestions have been useful daily.

My best!

[bgaster]

Thanks Carmell.

[bgaster]

Shriner's has accepted our application. We have an appt. in November at their outpatient clinic. I am also taking Danielle to a chiropractor. I have considered doing so over the years but have not because of a few considerations. One, the waiting watching and bracing, although traumatic at times, seemed to be working. Two, Danielle has developed this anxiety/fear of going to Dr.'s when it involves her spine. And three, the idea of someone crunch, crunch, crunching down her spine didn't sound like a good idea to me at all.

So here we are, bracing has been ineffective. A surgeon is about to do more than crunch, crunch, crunch. Far more. I am not one to willy nilly believe any claims of healing or curing. I have talked with friends and family over the years who go to various types of chiropractic treatment. I chose the chiropractor we are using based on my brother's recommendation. My brother being far more skeptical and pessimistic regarding anything being put on him as "treatment". He had success with this chiropractor, not for a spine issue, but success anyway.

At the initial appt. with the chiro. he said he could not lessen her curve, but he honestly believes he can stop it from progressing. Yes, I am skeptical. As I told my family, it is something that I need to try for my daughter, or I will forever regret not doing so. For my sanity I need to go into this surgery with no regrets.

So, Danielle has had 3 chiro. treatments. This Dr. does not crunch, crunch, crunch down her back. He is NUCCA certified, which is a new thing I just learned about. In a nutshell, he focuses his adjustment entirely on the 1st cervical vertebrae, the atlas. Danielle looks and feels better. It is hard for me to describe the change. I hesitate to say "straighter", because that gives people the impression that her spine is straightening. Which it is not, but she is straighter in her posture and movement. She does feel better. We'll see how it goes.

[Bonnie]

Hello,
I hope all is going well. Try asking Daniells chiro about spinal biomechanics (the Pettibon) and see what he says. My daughter has a dbl curve. Was at 50 and 40 last May. We have been doing this technique since Sept. We go for x rays on sat to see if it has helped. Although I am worried because she hasnt done it as much as she should be. Good Luck! Bonnie