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Thread: Where to go for 2nd/3rd surgery opinions?

  1. #1
    Join Date
    Aug 2009
    Posts
    2

    Where to go for 2nd/3rd surgery opinions?

    Hello! I am new on this board - I have a six year old son with congenital scoliosis. His curve is between the lumbar and thoracic portion of his spine. Several of his vertebrae are malformed. We live in the Chicagoland area. Started at Children's Memorial in Chicago where they said his curve was 75-80 degrees, wait and see approach. Did some research and decided to go to Shriners when he was about 1. They said he was about 60 degrees and wait and see. They are saying now that he is 75 degrees (a major jump, 5 degrees in the measurement, occurred in the last year or so when they switched to electronic x-rays and measurement, less than 1 degree change occurred since last year's x-ray). While I understand that over time, a 15 degree change is pretty major, I also know that individual doctors measure curves differently, and a computer may do it even more differently, so his curve may not have changed quite as much as they are saying it has. Or maybe I'm just in denial??

    Anyway, we are being told now that our son needs growing rods and they want to do it ASAP (Dec or Jan at the latest). He is very active and seems quite normal to us, except for a slight tip to his shoulders. He's never had any trouble with strength, bladder control, lung capacity, etc. He had a tethered cord released at 7 months old, and his spine no longer follows the curve of his scar from this surgery (it used to) - his spine is actually straighter than the scar now. We were quite shocked to hear that he needs to have surgery so suddenly as they've been telling us all along that his curve is changing very slowly (sometimes not at all, and sometimes even less curved than the last time) and that surgery was far on the horizon. The doctors (ortho, neuro, uro, etc, always comment on how great he's doing) We did expect surgery eventually, but just not RIGHT NOW. Our son is starting kindergarten next week, and we are expecting our third child in late October. It is difficult to face the idea that we're supposed to have this poor child go through major, life changing surgery in a few months along with all the stress of these other life changes. I'm finding the timing of all of this to be awful!

    We are obviously going to seek some other opinions on this, especially because we have been given no choice beyond immediate growing rods and I know there are many other possible options out there. And perhaps another doctor will be willing to wait just a little longer so that I'm not nursing a two month old baby who is unable to visit in the hospital while at the same time my six year old is undergoing major surgery and hospitalization.

    So I suppose my question is, where do we go for additional surgery opinions? We called Philadelphia Shriners immediately and got an appointment to see the head of their department early next month. We have family in Philly, and I've read good things about thier surgery program there, so this this seemed like a good option. Where else should we go? Any suggestions? I've read St Louis Shriners does some different types of treatments, though I'm not sure the halo & extension approach appeals to me. We are not opposed to traveling, but I'd rather not trek all over the nation while 8 months pregnant trying to figure all this out. Ugh.

    Thank you for any advice/help you can give me!

    Lisa

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Lisa,

    My heart goes out to you and your family--I can't imagine being told so suddenly that he needs surgery right away when they have been watching things, and it seems especially unreasonable when you will have a newborn then. Remember you are the parent and you can decline/delay surgery due to poor timing. I would need to hear a lot more detailed reasons about why the growing rods can't wait before subjecting my family to the stress of surgery with a newborn at home.

    You will love the docs and their wonderful PA, Janet Cerrone, in Philly. I am glad you got an appt so quickly there (not surprised though). Our daughter is a patient of Dr Betz, and we travel from the Pacific Northwest to see him. They seem to have a much better understanding of the whole child and family's quality of life, they see the child and not just the spine!

    Have you asked about VEPTR?

    Good luck, and please let us know how things are going.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  3. #3
    Join Date
    Aug 2009
    Posts
    2
    Hi, Gayle,

    Thank you for your words of support!

    I was so taken by surprise when the doctor was telling me all of this (last Monday) that I didn't ask many questions! He has recommended growing rods all along, and I had sort of brushed it aside in my mind as something I would deal with when we got to that point. Then of course I was too surprised to think when we actually did reach that point! Also, I was wrangling a bored six year old and a cranky twenty month old by myself during our discussion. I certainly don't think that helped my state of mind!

    Thank you for reminding me to ask lots of questions! I have been calling the nurse with questions as I come up with them, but of course it often takes her a day or two to call me back and we have been playing phone tag occassionally. When Liam (my six year old) was still a toddler, I had asked the doctor about VEPTR and growth clips and other options and he had replied that they were still experimental and were only being offered to children with severely compromised chest cavities. Liam did not fit this category. At that point those treatements were very experimental, but I'm not sure that this is still the case. At any rate, when I re-looked up VEPTR as soon as I got home, I saw that Chicago Shriners is not a location where they do VEPTR surgery anyway. Yet another reason to consult in Philadelphia!

    We are seeing Dr. Betz when we go to Philly. I'm so glad you like him so much! I'm hoping our experience there will be a good one. We have had nothing but very positive experiences at Shriners up until this point - I really do think that in general they consider the child/family at a deeper level than the other doctors I've worked with. I am sure if I push the subject we can come to a better surgery schedule, I just have to calm down enough to approach the subject rationally! Not easy with all the hormones bouncing around in my body right now I'm also thinking that having a third party doctor weigh in on the timing of the surgery might help me feel more relaxed and confident on the subject. We see Dr. Betz September 8th. I'll let you know how it goes!

    Thanks so much!

    Lisa

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