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Thread: a moment of freaking out~ need feedback re miss, also large fusion

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  1. #1
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    a moment of freaking out~ need feedback re miss, also large fusion

    Son, age 14, was diagnosed 2 wks ago by primary doc who said 49.4%. Went to Dr Neal at Nemours yesterday who said it's 56% & L2-t3 would be fused. We have an appt w another - Dr Cronen in tampa. One of my colleagues flew his daughter out 10+ yrs ago to Sacramento w Pichetti (?) & had a phenomenal experience w minimally invasive even tho she was 68%. Dr Neil discounted miss for jacob, so 3 major questions - isn't that much of a fusion going to seriously impact his expected 6-8"more of growth, as well as how is that major an area going to impact the rest of his life? Has anyone on here had experience w miss in last few years? Thank you.
    I'm going to add another q- we'd ruled out CLEAR bc it didn't seem permanent & there are some questions as to accuracy of measures. If any treatment were to bring down curvature would less fusion take place and would it be permanent, or just delayed? This is such a huge decision for the quality of his life, as well as now as he's been in pain for 3 months.
    Just edited, ipjone wrote something totally random near beginning.
    Last edited by LSKOCH5; 11-06-2011 at 04:31 AM.

  2. #2
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    There are some other parents on here that can be really helpful to you. In particular I'm thinking of Elisa, if you can contact her or read and comment on her thread. Have you considered contacting Shriners? I've heard wonderful experiences on here about them. I hope you find the answers you are seeking. Best to your son and your whole family.

  3. #3
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    It's George Picetti.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
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    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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  4. #4
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    All I can tell you is about my experience and I also agree with rohrer01. I also had a large fusion as you can see many years ago when they had started fusing vertebrae and using harrington rods. I know they don't use the rods any more but I truly had a very bad curvature and the fusion honestly has not caused me any problems at all in my life. Now only because of the rods and my fusion went to L3 I have been in a bit of pain as explained in my signature but please remember It has been many years since I was operated on. When I had the operation I grew 2 and a half inches, I was 15 and continued to grow to what would have been my normal height 5 foot 3 inches. I have lived a normal life, moved house myself, worked for 25 years gave birth to two sons, and all the normal things one does. I wish you all the best and I understand it is a shock when you hear it all. If I had my time over again I would not hesitate to have the operation and often bless my mum for having the vision and foresight to go ahead with it.


    All the best
    Lorraine
    Last edited by Lorraine 1966; 11-06-2011 at 12:57 AM.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  5. #5
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    Thank you all very much. I'll try Elisa. Am I wrong on Shriners, meaning I felt it was so important to try to find the best surgeon& work from there. Dr Cronen in Tampa does surgery w Shriners as well, but if I went through Shriners don't they just assign a surgeon without input from us? Or is the whole Shriners experience just that much more conducive to his best shot?

  6. #6
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    Lorraine, thank you so much for sharing your experience w me. Esp about glad of the surgery as well as the growth. Sorry you've been in pain for so long and I hate to ask, is that just due to the Harrington rods, or is that also bc the fusion went down into the lumbar, or that it was such a long fusion?

  7. #7
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    Hi. I am sorry to hear about your son's diagnosis.

    Per our surgeon, L2 as the distal end is not associated with need for extension. You have to go lower.

    That said, expert opinion may differ so you should believe nothing about technical surgical minutia that you read on this group (with the possible exception of Linda, the moderator who works in a surgical group coordinating research I think). She would have a chance of knowing the range of opinion on any matter whereas most folks here can only hope to accurately report one opinion - that of their surgeon.

    Ask your surgeon (or more than one surgeon) and ask them what evidence it is based on for any question that concerns you.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #8
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    [QUOTE=LSKOCH5;128371Am I wrong on Shriners, meaning I felt it was so important to try to find the best surgeon& work from there. Dr Cronen in Tampa does surgery w Shriners as well, but if I went through Shriners don't they just assign a surgeon without input from us? Or is the whole Shriners experience just that much more conducive to his best shot?[/QUOTE]

    Hi there,

    I am sorry to hear of your son's scoliosis and that he needs surgery. I know what a shock that all comes as.

    I want to encourage you to check out Shriner's--I think you may have the wrong impression of Shriner's, they do not provide second-rate charity care. They provide absolutely top-notch, state of the art care to all, regardless of a family's ability to pay. My daughter was under the care of Shriner's Philadelphia for a year or so when she was diagnosed at age 6, then we transferred care to Shriner's St Louis to get an earlier surgery date. (She had a smaller curve and had vertebral stapling, so a different situation from your son's). She had surgery in St Louis and I can't say enough about the high level of skill of the surgeon and the entire staff.

    I know of a highly-skilled and very much beloved surgeon who moved from Shriner's Philly to Florida. I believe he is associated with Shriner's Tampa, but I'm not sure. Here is the contact info I have: Dr. JahanGir Asghar Tampa Shriners Hospital 12502 USF Pine Dr.Tampa, FL 33612-9411 (813) 972-2250. I also think he works in Miami: 3100 SW 62nd Ave, Miami, FL 33155 (305) 662-8366

    I know his curve is large, but scoliosis surgery is rarely an emergency, and you have time to seek some other opinions and find the right surgeon for your son and your family.

    Good luck, and please ask any questions you may have.
    Last edited by leahdragonfly; 11-06-2011 at 09:12 AM.
    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

  9. #9
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    I think Lokansdad would actually know more about how Shriners work regarding 'assignment of surgeon' as he did go through his own insurance. We are from Canada and Shriners do not take our insurance and my son's care was 100% charity and we were assigned Dr. Krajbich as his surgeon. We were told that we were assigned Dr. Krajbich b/c he dealt with the more severe cases. My son was in BAD shape. Gayle (leahdragonfly) and Maria, another member here, have been dealing with Shriners for years now so they are a lot more familiar with how everything works with them. My personal experience with them was nothing short of amazing and I was a little skeptical at first and really didn't know what to expect but I had no other choice b/c my son was deteriorating daily and there was no one here even bothering to look at him. On our first visit to Shriners in Portland, Oregon, I knew we were in the right place and had hit the jackpot! These people here are the ones that pointed me in the right direction, I trusted them and they were absolutely right. I am/always will be extremely grateful for their help.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



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  10. #10
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    Quote Originally Posted by LSKOCH5 View Post
    I'm going to add another q- we'd ruled out CLEAR bc it didn't seem permanent & there are some questions as to accuracy of measures.
    Good call. They have been around several years and have no evidence of efficacy to show for it. They are chiropractors and therefore not trained to deal with scoliosis. Only board certified orthopedic surgeons are.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #11
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    Quote Originally Posted by LSKOCH5 View Post
    Son, age 14, was diagnosed 2 wks ago by primary doc who said 49.4%. Went to Dr Neal at Nemours yesterday who said it's 56% & L2-t3 would be fused. We have an appt w another - Dr Cronen in tampa. One of my colleagues flew his daughter out 10+ yrs ago to Sacramento w Pichetti (?) & had a phenomenal experience w minimally invasive even tho she was 68%. Dr Neil discounted miss for jacob, so 3 major questions - isn't that much of a fusion going to seriously impact his expected 6-8"more of growth, as well as how is that major an area going to impact the rest of his life? Has anyone on here had experience w miss in last few years? Thank you.
    I'm going to add another q- we'd ruled out CLEAR bc it didn't seem permanent & there are some questions as to accuracy of measures. If any treatment were to bring down curvature would less fusion take place and would it be permanent, or just delayed? This is such a huge decision for the quality of his life, as well as now as he's been in pain for 3 months.
    Just edited, ipjone wrote something totally random near beginning.
    Hi Leigh-Ann,

    I am replying to your private message. I could never respond to those private messages for some reason, so I've had to reply on here - hope that's okay. Anyway, I know that Dr. Cronen has worked on many children, and I know many people too who have had surgery with him since my own surgery and have done very well. I can't say enough good things about him. He takes a personal interest in each and every one of his patients, which is above and beyond most other doctors. I am a year and a half out, and I still feel fantastic - in fact even able to do plyometrics, which I never thought I'd be able to do after a spinal fusion. I healed quickly after the surgery with him, and all his staff are fantastic too. I highly recommend him to anyone. I wish you the very best of luck with your son.
    Lynette - 44 years old.

    Pre-surgery thoracic 55 degrees
    Pre-surgery lumbar 85 degrees

    Post-surgery thoracic 19 degrees
    Post-surgery lumbar 27 degrees

    Surgery April 1st 2010.

    Posterior spinal fusion from T9 to sacrum.
    Dr. Cronen at University Community Hospital - Tampa, FL.

  12. #12
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    Lynette -- Thanks so much for your fast reply. Very reassuring, as I've seen that everyone who's posted on the forum about Dr. Cronen was in the adult category. Actually looking forward to this appt, have heard so much good. Glad you're doing so great. Plyometrics is great for fitness - pretty neat that you're able to do it now.

  13. #13
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    CAMomof2 - How did it go? I'm still looking into MIS, I just got the feeling our doc was trained this way and that's just how it is.

    rohrer01- First dr said 14 is too old for growth rods, but we'll be asking about that in today's 2nd opinion. I've become more comfortable w the growth issue as I've done so much more research on here & all over the net. Even if he lost a couple inches of height, he's still going to be fine. He's got the rest of his spine as well as his legs for growth.

  14. #14
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    Smile

    [QUOTE=LSKOCH5;128943]CAMomof2 - How did it go? I'm still looking into MIS, I just got the feeling our doc was trained this way and that's just how it is.

    It went well. She is having a "mini-open" technique done. Her surgery will not be preformed thorascopically as in most MIS I believe. Her's will be like in this article; http://www.spineeducationresources.c...CaseReport.pdf

    So, this procedures pros are less muscle trauma and nerve damage, less blood loss, and supposedly a quicker recovery in terms of feeling better (the limitations are the same as traditional posterior fusion). She still will be in significant pain, hopefully just a bit less than the traditional way because all her muscles won't be cut. The cons of the procedure are a longer surgery time. It is still fairly new, but so far it looks good. The surgeon said that if things weren't going according to plan during surgery, then he can always open her up fully and do the traditional way. We think it is a good option for us. Fingers crossed. Will definately be glad when she is "on the other side of surgery". I think I have aged 10 years these past few months!!!!
    All the best to your family.
    CAmomof2

    July 07 - T 26*
    Aug 08 - curve now 22*
    Sept 08 - SpineCor Brace (in brace 17*) Ste. Justine
    March 09 - in brace 14*
    Aug 09 - in brace 14* / MRI normal
    Feb 10 - in brace 18* - had an oob xray - now 35*
    June 10 Considered VBS T 32*, L 27* , Stopped SpineCor brace
    Sept 10 T 38*, L 26*
    April 11 T 45*, L 31*
    July 11 T 51*, L 37*
    MIS SURGERY - NOV 28, 2011 / Age 12 / Fused T4 - T12

  15. #15
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    i do believe minimally invasive surgery has been around for thoracic spine for
    quite a while...
    minimally invasive for lumbar spine is relatively new...
    i flew out from the east coast to see Dr Anand 2 years ago, to Cedars Sinai Hospital
    in LA...he raved about the surgery, said he considered other kinds (open) to be
    the "old way"...said he used nothing else...he has a wevbsite showing the surgery
    in a video...

    my experience and my questions all concerned adult scoli surgery, not pediatric...

    i spoke to 2 of his satisfied patients, both between 60-70 years old at that time,
    and they were both doing well, very satisfied...
    Dr Anand said he only had a couple of patients who developed problems in their
    thighs....and those problems were easily fixed...
    this was, again, 2 years ago...

    NOW...i hear on this forum that Dr Anand has "backed off" somewhat from
    believing that minimally invasive for lumbar is for everybody....
    i do not know personally of such statements from him, but i have no reason
    to doubt those on forum who have heard him say it...
    since i saw him for a consult (cash...he didn't take my insurance), i am considering
    writing to ask him about the change of opinion he has had....
    the surgeon i prefer in Manhattan told me he would do "partial" minimally
    invasive surgery for me, T4-sacrum, with pelvic fixation.....i haven't seen him
    for over a year, so i do not know if that has changed...
    Anne (Admoul) on forum actually had the surgery i need with the same surgeon
    and is very pleased with her results...i believe she is 2 years out from her surgery....

    i do not know opinions about minimally invasive surgery for kids...but it is true
    thoracic MI surgery has been around a lot longer....
    and i am really shocked that ANY surgeon would say it might have been a "fad"!!

    note...i never heard of anything referred to as "MISS"...
    i thought it was some new surgical approach for children!

    jess
    Last edited by jrnyc; 01-03-2012 at 07:21 AM.

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