Announcement

Collapse
No announcement yet.

Second Opinions

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Second Opinions

    My 9 year old was diagnosed with a 29 degree curve and the ped orthopedist we were referred to said Boston Brace 18 - 20 hours a day for approximately 5 years. After having to wait two hours to be seen, I found his bedside manner not very nice, especially for someone who works with children, even though I felt his diagnosis was probably on target. But no picture of the brace, no acknoledgement of her feelings (or mine) just clinical info in about two minutes.

    I have a second opinion scheduled for tomorrow. A third opinion scheduled for April 26 and a fourth (!) on May 11 at CHOP. I sound a little obsessive I know but I really want to make sure i'm doing the right thing.

    My question: how important is a doctor's demeanor and his/her office practice? I am guessing that we are going to spend a lot of time in the office for five years and I want both of us to feel comfortable about going.

  • #2
    Good question. This is a good example - what is #1 and absolutely right for one patient may not be the same for another. When parents look for #1 or the best of the best, you can't define that. Too subjective. There are too many variables involved.

    That being said, for our family, bed-side manner is very important. I need to be able to ask a doc - to his/her face, look in his/her eyes - and say, "if this were your child, what would you do?". Then, I need an honest answer. Some parents are okay with a not-so-warm and friendly bedside manner because the doctor/surgeon is very good at what he/she does. Remember that the doctor/surgeon is going to give you recommendations, then its your choice as to what "plan" is best to follow. When it comes to surgery time, the surgeon will be important for the operating room only. You need to be in a hospital/facility where they know how to take care of patients like your daughter. The post-op care is almost more important than the actual surgery - even if its for peace of mind only.

    Obviously, the ideal situation would be to have the best of both worlds - a doc who has extensive experience treating children like yours, AND has a great bedside manner. Good luck - I think you are doing the right thing. Having 100% confidence in the doc is very important.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

    Comment


    • #3
      To me "bedside manner" is incredibly important. My 7 year old son was diagnosed about 6 months ago. When we went for the ped ortho visit, with someone who is known as an outstanding doctor, I was taken aback. He was very clinical and seemed to be bothered by our questions. He sent in a brace specialist who showed my son a brace he had made for a 13 year old (which was about the size of my sons whole body). This scared him a lot. By the end of the day we had been seen and fitted. It was too fast in my opinion.

      We took a step back and decided on a second opinion. The doctor we went to see, while also a very good doctor, was incredible. He answered every question we had, gave us his personal opinions and made us feel incredibly comfortable. Most importantly he told me several times, "We just don't know". I appreciated his honesty as what I was getting from the other doctor was very "I know everything". What cemented our decision was with the first doctor if I had any questions I had to first talk to his nurse to see if she could help then and only then would she give him a message (which he never returned). My son's doctor returned our calls quickly and made us feel like he really cared.

      I know I am babbling but my opinion is strongly in favor of going with a doctor with whom you and your child are comfortable (if their level of experience is equal).

      Best of Luck and let me know if I can answer any questions.

      Ken (Ben's dad)

      Comment


      • #4
        Update - third opinion needed?

        Two different doctors - with two different opinions. I have a third appointment scheduled for the end of April -

        Both doctors read the same x-ray differently (one said 25 degree curve the other said 29 degree curve). One doctor says boston brace for 20hours/day while the other says providence brace for nighttime.

        I definately liked the second doctor more but why such a difference in treatments? I am going to a third doctor. Anyone else experience such a difference of opinion?

        Comment


        • #5
          Just wondering if you've considered the SpineCor brace rather than the hard Boston brace. They are having some great results, especially with younger kids and smaller curves. You might want to check out the SpineCor thread on this site or their website. The brace is flexible and much easier for kids to wear. Good luck with your decision - I know its hard to know what to do with different doctors and different opinions.

          Comment


          • #6
            Opinions are like ....

            Two different doctors and two different opinions? ... LOL, imagine that.

            Sorry, hope my sarcasm doesnt upset you, but frankly, it is likely that you will get a different opinion from every doc you see if the docs are not in the same room at the same time. Usually, if you can get them together, they will come to some kind of agreement. However, I have even had docs in the same room at the same time arguing about diagnosis right in front of me. And of course my ego is big enough that I actually believe that MY opinion counts too, so I was arguing right along with them.

            Well, the bottom line is that medicine is NOT an exact science, and you have to give the docs some breathing room to make their best educated guesses.

            As far as curve measurement is concerned, the difference between the two measurements (only 4 degrees) of the two doctors is within the margin of error of the tools and the measurement process, so I would say that the two docs actually measured the curve the same.

            As for recommeded courses of treatment, I think the best thing you can do is to educate yourself so that when decisions come around, you can understand the rational given by the different docs and why they are recommending something and then make up your own mind as to what they are saying makes sense or not. As many of us here have said many times over again, you know your child infinitely better than any doc who sees them for only 10 or 15 minutes at a time, and so you must be their primary care coordinator and their advocate with all their doctors.

            Ask questions, lots and lots of questions, and take a note book to write down what they say. If you don't understand what they say, tell them, and have them explain it again. Use your notebook to write down questions that come up between appointments, so you dont forget them at the appointment. Research new courses of treatment and ask the docs what they know about them.

            Get second opinions on big decisions, but also be prepared that you might not like the answer. Don't keep seeking opinions until you find one you like. Instead, be willing to live with the right opinion, even if it is not the answer you wanted, and decide you are going to learn how to live with it. In this case, it sounds like you are going to have to learn to live with some kind of bracing, one way or the other. If that is the case, then shift your energy and resources to helping your child learn to live with the brace.

            Good luck and keep us posted.
            Spencer's Dad

            11 year old boy with PMD Luekodystrophy
            Nonambulatory, nonverbal, nonweight bearing
            VRO and Pemberton hip reconstruction at age 5
            Nissen fundo at at age 7
            Subdermal spinal drug pump at age 9
            Complete Spinal Fusion Jan. 9, 2007 at age 10.
            118 degree curve before surgery - less than 25 after!!

            Comment


            • #7
              Hi Munchie122,

              You mentioned going to CHOP so I assume you are not that far from Philadelphia. Have you considered going to Shriners Hospital in Philly? Their team, led by Dr. Betz, is second to none as far as skill and expertise AND every doctor I have met has had a wonderful bedside manner. (As Carmell said, having both qualities in a doctor is the ideal situation).

              You might also have one additional option at Shriners. Your daughter sounds like she would be a good candidate for vertebral stapling - if you were inclined to go that route as opposed to the 5 years of bracing.

              In any event - whether you decided on the bracing or perhaps the stapling - you could not be in better hands than at Shriners in Philadelphia.

              My son has been treated there for over three years. We travel from NY because of the excellent care he receives there. (Even though we have good insurance and tons of doctors in NY, in my book none of them compare to the ones taking care of David at Shriners).

              If you want to e-mail me, my address is mariaf305@yahoo.com. I would be happy to share our experiences with you.

              Good luck,
              Last edited by mariaf; 04-03-2007, 03:51 PM.
              mariaf305@yahoo.com
              Mom to David, age 17, braced June 2000 to March 2004
              Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

              https://www.facebook.com/groups/ScoliosisTethering/

              http://pediatricspinefoundation.org/

              Comment


              • #8
                Munchie,

                We live outside of Phila and I wonder if we are talking about the same cold orthopedic. The one we saw was from Temple and he gave us the diagnosis, told us to to put her in a Boston Brace and never acknowledged our hysterical daugher sobbing in the office. Didn't say one comforting thing to her or to us for that matter. Meanwhile our pediatrician referred him to us because he is a wonderful orthopedic. We never went back there again. Nor did we get her the Boston Brace as you can see from my signature.

                I don't think it is strange that they measured the curve differently. Some doctors use more accurate digital measuring. Also, each doctor may use a different starting point when measurin the curve. It wasn't that different as far as measurement is concerned.

                I agree with you to ask a third doctor and we have gone to Shriner's as well and I think you would be very comfortable there. Nobody was nasty or cold like our first experience.

                Good luck. We are all here for you.
                '
                Melissa
                From Bucks County, Pa., USA

                Mom to Matthew,19, Jessica, 17, and Nicole, 14
                Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                Comment


                • #9
                  I am also not surprised you have seen 2 doctors and gotten 2 opinions. Medicine does not have a "cookbook" approach for many things, scoliosis included. I'd suggest getting 2-3 opinions, asking lots of questions, doing your own research and then going with your gut feeling. Even though my daughter ended up having surgery, I didn't even get a second opinion. I trusted her surgeon and when I researched treatment options, nothing I read recommended anything other than surgery past 50 deg. When she was diagnosed, her curve was 44 deg. and the doctor recommended the Providence night time brace. Even though there is not as much research with this brace as the Boston, I knew for my child her compliance with a night time brace would be better than for a 23/7 brace. The more doctors you see, the more opinions you will get and it will be harder to make a treatment decision. It is tough but you'll probably know deep down which treatment option is best for you when you hear it.

                  Comment

                  Working...
                  X