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Thread: Need some advice!

  1. #1
    JamieAnn Guest

    Need some advice!

    Hi Everyone,

    It's been a while since I've been on the forum . I just came from my appointment with Dr. Errico in NYC, and need some advice!

    I used to see Dr. Schwab, also in NY, and had to switch this year due to my insurance changing. I've heard great things about both so I wanted the second opinion anyway.

    My curve seems to be progressing at an average speed. It was in the low 30's when I was a teenager, now I'm 29 years old and it's around 46 degrees. Dr. Schwab had said a few years ago that it will probably continue to get worse, and today Dr. Errico said he would recommend surgery.

    I really appreciated the time he took with me, but somehow I feel like there isn't enough time to spend talking about this surgery to feel comfortable. He was pretty laid back about the idea of surgery, kinda like it was no big deal. He was also very honest in saying that it's 100% my choice, and I can do this at any time but earlier is obviously better due to my age and flexbility of my spine.

    Does anyone have any advice, being in a similar situation? Now that I've officially gotten a green light from a specialist, I feel like I really need to start thinking seriously about this and make some decisions. I feel like everyone else in my life doesn't get this at all - some think I'm being overly dramatic, some think I should run out and do this.

    Help?

    Thanks everyone,
    Jamie

  2. #2
    Join Date
    Sep 2009
    Posts
    238
    Hi JamieAnn-

    Wow, your post really sounds similar to my situation. I am 31 years old and I am currently scheduled for surgery with Dr. Boachie in NYC at the Hospital for Special Surgery on June 8. When I was around 15, my curves were in their mid thirites, then when I was around 25 years old they were both 48 degrees. Well, then I went on to have a child at both 26 and 28 years old, and that's when the pain got terrible and my curves really increased. I am now 31 years old and my thoracic curve is 55 degrees and my lumbar curve is 58 degrees. Like you, no one I know in my family really takes my situation seriously. I think my parents all think I'm crazy because I am scheduled for surgery. My grandma lived with a double curvature in the 100 degree range her whole life, but I'm not going to do that. I think they think since she did that, then I can do it. I went to see numerous doctors throughout the years about surgery, and none of them told me straight out to do it. They just told me to come back in a few years to measure the curves again. They say it's 100% my choice, and that it's no rush. Well Dr. Boachie in November recommended that I do the surgery, so I booked it. Also, let me tell you, I believe if your curves are in the upper 40's now, like mine were when I was your age a few years ago, that after you have kids they will most probably continue to increase.

    Anyway, I wish you the best of luck in whatever you decide. I am really scared to death of the surgery, but I am moving forward with it. It's only 8 weeks away!

    Keep us posted on what you decide!

    Take care,
    JenM
    Surgery date: June 8, 2010 with Dr. Boachie
    Thoracic curve: 55 degrees, corrected to 25 degrees
    Lumbar curve: 58 degrees, corrected to 27 degrees
    Posterior-only surgery, Levels T3-L3
    31 year old mother of 2 young kids

  3. #3
    Join Date
    May 2009
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    3,745
    Hi Jamie
    Dr Errico was once listed in NY Magazine as one of the best orthopedic surgeons in NYC...i know his waiting room used to be packed! to such busy surgeons...well, it is a routine thing to them...or at least, a heck of a lot more routine than it ever is to the patient!
    i am mulling over surgery...but want to wait til someone who does the newer minimal invasive for lumbar region AND takes my insurance is available...i see Dr Lonner in NYC april 12th...this monday...to discuss it...i had the consult in L.A. in January 2010 for the minimal invasive for lumbar......that doctor does not take my insurance...but i like the method...no muscle cutting! but...i am waaay older than you are....that is a factor....absolutely! AND...at your age, i think your curve is kinda large...mine didnt get into the 40's til i was in my 40's (seriously)

    did they tell you what levels you need fused? how much pain are you in....????

    it is a really big decision for anyone to make...cause it is not like you can change your mind later!! it is very hard for me to consider fusion to pelvis...i fear the loss of flexibility...despite many people on forum telling me it is not as bad as one imagines....i have alot of flexibility right now..no strength and lots of pain, though!

    best of luck with your decision...

    jess
    Last edited by jrnyc; 04-08-2010 at 02:39 PM.

  4. #4
    JamieAnn Guest
    Thank you both for your advice! It's so helpful to hear that people are really in the same position as me, especially when it comes to having to make the decision myself.

    Jen, best of luck in your upcoming surgery. I look forward to hearing about your progress!

    Thanks again,
    Jamie

  5. #5
    Join Date
    Sep 2009
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    146
    Hi JamieAnn - I have two dd's both with scoliosis. Your not alone with these hard decisions. It really helped me to discuss some of the hard things here.

    My younger dd's lumbar cruve progress fast into the 50's and just had surgery this past Feb.

    My oldest (now 19) has the same curve -in the 40's, but also has kyphosis. She wants surgery now to fix this because she knows (and drs. have said) it will continue to progress and will eventually need surgery. She wants go get it over with now before she has a career and family that needs her. Funny when the dr. told her she had scoliosis she refused to believe them, even though it was obvious to me by looking at her - she didn't see it. Well she is not at the magic number of 50*, so is working with PT to help her muscle spasms and back pain(finished today). We will see from here what the surgeon say.

    This forum has a wealth of knowledge, and people who have been there and don't mind coming back to help those who are still going though this.

    Best of luck to you while you search out your best options.

    Dee
    Dee - Mother of two daughters, both with scoliosis KateScoliKid (16yo) 52* Lumbar curve
    Fusion Surgery 2/9/10 T-11->L-3 @CHKD Norfolk VA
    Jes (20yo) T 3 -> L 3 w/ Kyphosis

  6. #6
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    May 2008
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    reno,nevada
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    Hi JamieAnn

    Making that decision is so tough, it took me 34 years!....I had twin 50s back when I was 16, and was a candidate in 1974.

    There are so many parameters involved in decision making, but the main one would be pain.

    How is your pain?

    If you can manage your pain, you might be able to wait on this. You can always do this later.

    I say this because you are 31 years old. If you were 15-20 years older and had pain, the decision would be much easier.

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #7
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    Did anyone else notice that there are two people on this thread, one in the low 30s* and one in the mid 30s* at maturity who reached surgery territory at young ages? And they join the others who have posted who were clearly subsurgically at maturity but nevertheless had progression requiring surgery.

    How many kids here are valiantly wearing braces hoping to make it to maturity with curves in the low to mid 30s* and then thinking they have escaped surgery? I know my kid certainly thought that if she stayed that low she would escape surgery. Yet another reason for me to regret her year of brace wear.

    Now this tiny sandbox is not a representative sample and maybe most people at mid 30s* or below do not go on to need fusion for progression but how many go on to need fusion for associated damage brought on or accelerated from having a curve in the low to mid 30s*? In other words, even if bracing changes the natural progression rate of scoliosis during growth, does bracing only delay rather than avoid surgery? I think if it is the vast majority then folks need to know that especially if the long term surgical outcome is statistically different between spine with damage and those without.
    Last edited by Pooka1; 04-09-2010 at 10:40 AM.
    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
    JamieAnn Guest
    Dr. Errico commented on that, that sometimes curves do NOT progress past the 30*'s. I mentioned that when I was 16 my doctor sent me on my merry way, and here I am 14 years later considering surgery.

    To answer the question re: pain, I have stiffness and soreness all over, with some particular spots within my muscles that I feel are being pushed/pulled awkwardly. At this time I don't feel pain alone would force me to do surgery, but it's more a combination of future potential pain and not wanting increased deformity overall. I'm already pretty frustrated with how crooked I am, I couldn't imagine 20 years from now.

    I'm wondering what holds us back from not having surgery? If I can afford time off from work, I'm at the right age and don't have kids yet (but would like them 2-3 years from now) why wouldn't I go for it? I'm very scared of the surgery and feel it's a huge decision, but I am trying to find the downsides of why i would hold off when my body is in the best condition now.

  9. #9
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    Quote Originally Posted by JamieAnn View Post
    Dr. Errico commented on that, that sometimes curves do NOT progress past the 30*'s. I mentioned that when I was 16 my doctor sent me on my merry way, and here I am 14 years later considering surgery.
    Wow did he really say it that way implying that many curves DO progress starting from the 30s* at maturity?

    If so that is a significant change in the paradigm which holds that anything below 40* - 50* at maturity is your ticket off the surgery table.

    I think someone needs to re-crunch these numbers.
    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."

  10. #10
    JamieAnn Guest
    He was basically saying that some do, and some do not. He was saying that when I was 16 and my doctor told me it might not progress, he wasn't technically wrong, because some do not.

    However in my case as with many others, it did. I think it's something doctors simply do not know.

  11. #11
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    Quote Originally Posted by JamieAnn View Post
    He was basically saying that some do, and some do not. He was saying that when I was 16 and my doctor told me it might not progress, he wasn't technically wrong, because some do not.

    However in my case as with many others, it did. I think it's something doctors simply do not know.
    I may be out of the loop but I consider that a blockbuster statement.

    Saying that some do and some don't starting from the low to mid 30s* is a SIGNIFICANT departure from the paradigm which I believe is, "It would be unusual or rare to progress to surgery, especially at a young age, starting from low to mid 30s* at maturity."

    Huge change of thinking as far as I can tell. Kids and parents need to shoot for something far lower than the 30s* with braces if they want a real shot at avoiding surgery. If I had known that I never would have agreed to my daughter's brace.
    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."

  12. #12
    Join Date
    Mar 2010
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    2,755
    Hi,
    I'm 41 years old. I had a stable curve my whole life until my 40's. I have always had pain with my curve. I was diagnosed at 16 years old with upper thoracic 39* curve. I was told I couldn't be braced and that I would probably need surgery in my 40's. Back then the "magical" number for surgery was 40* and now most doctors will say 50*. I am at 46*, like you, and in terrible pain. I am hoping to have surgery this year.

    Something to think about. If you are having pain now and do not have children. Let me tell you that lifting those little woogies increases your pain, a LOT. Right now you don't have the responsibility of taking care of children. If you wait, you will not only have to take care of your own recovery, but your children, too.

    My children are grown for the most part, so I don't have that to factor in. Best wishes in your decision.

  13. #13
    JamieAnn Guest
    Who is saying that it's rare? Is that from what you have read, or another doctor is saying that?

    I'm an example of this, and clearly I'm not the only one. I think this is what's frustrating about scoliosis - is that there does not seem to be a clear answer.

  14. #14
    Join Date
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    Central NJ
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    Quote Originally Posted by JamieAnn View Post
    Hi Everyone,

    It's been a while since I've been on the forum . I just came from my appointment with Dr. Errico in NYC, and need some advice!

    I used to see Dr. Schwab, also in NY, and had to switch this year due to my insurance changing. I've heard great things about both so I wanted the second opinion anyway.

    My curve seems to be progressing at an average speed. It was in the low 30's when I was a teenager, now I'm 29 years old and it's around 46 degrees. Dr. Schwab had said a few years ago that it will probably continue to get worse, and today Dr. Errico said he would recommend surgery.

    I really appreciated the time he took with me, but somehow I feel like there isn't enough time to spend talking about this surgery to feel comfortable. He was pretty laid back about the idea of surgery, kinda like it was no big deal. He was also very honest in saying that it's 100% my choice, and I can do this at any time but earlier is obviously better due to my age and flexbility of my spine.

    Does anyone have any advice, being in a similar situation? Now that I've officially gotten a green light from a specialist, I feel like I really need to start thinking seriously about this and make some decisions. I feel like everyone else in my life doesn't get this at all - some think I'm being overly dramatic, some think I should run out and do this.

    Help?

    Thanks everyone,
    Jamie
    Hi Jamie,

    your curve seems to be stable in the last 4 years. Are you having any pain? If I weren't having pain and the curve seemed stable, I'd think I'd hold off. In my case, like Jen, I believe (although who knows) that having my 3 kids made it progress more than anything. Maybe it would have progressed anyway? We're not fortune tellers

    Good luck with your decision, I know it is a hard one to make.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  15. #15
    Join Date
    Sep 2009
    Posts
    238
    I just wanted to add in that I didn't have alot of pain before I had my kids. I had a little pain but it really didn't bother me at all. The pain started to get to me after I delivered them when I had to pick them up all the time. Both of my kids were in the 99% for both weight and height and it was such a challenge for me to get through the days. There were days I would just be in tears my back hurt so bad. During a child's first 2 years of life you have to pick them up all the time...they are so dependent on you. Like I mentioned in my earlier post, in the few years while I was pregnant with both of my kids my curve increased 10 degrees to it's current state of 58 degrees. So that's why I am getting the surgery in 8 weeks, because my kids will be 3 and 5 and I don't need to pick them up anymore. My back has become very deformed during the past few years and I am looking forward to having a more normal back! I feel like it's probably better to do the surgery now than wait 20 years. You recover much faster. I think my doctor, or a previous one that i had, said if you are 30 years old you recover more like a teen.
    Surgery date: June 8, 2010 with Dr. Boachie
    Thoracic curve: 55 degrees, corrected to 25 degrees
    Lumbar curve: 58 degrees, corrected to 27 degrees
    Posterior-only surgery, Levels T3-L3
    31 year old mother of 2 young kids

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