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Hello everyone! I'm new here and definitely am looking for insight!

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  • Hello everyone! I'm new here and definitely am looking for insight!

    Hello everyone, my name is Jenny and I am 26 years old. I am new to this forum and was hoping for some information or insight on my situation.

    I found out that I had scoliosis in my freshman year of high school. I had an orthopedic doctor at Kaiser who had monitored me throughout the years. The doctor had talked to me about surgery as an option but I knew nothing about it nor did my parents (they don't even speak English). At the last appointment with my doctor, he had told me that I was in the gray zone and that my curve was not going to get any worst because I wasn't growing any taller. He also told me that it wasn't necessary to see him anymore and more harm was getting done by taking all the x-rays.

    I can't say that I have any "unbearable" pain when it comes to my back but there are things that I do that does make my back ache such as washing dishes or when I vacuum. It sounds like an excuse to get out of chores but I think it is because of the weight that is being put on my upper body that does that. I also cannot lean back (45 degree angle) in a chair for over 20 minutes. I have to sit up straight or it hurts.

    I had went to a chiropractor and that was a total waste of money. The chiropractor put my x-ray up on the light box and took a pencil and drew a big S on my spine and said, "you definitely have an S curve". Never came back although he was very easy on the eyes.

    I had talked to one of my teachers who had a wife with scoliosis as well as both of his daughters. After talking with him I felt like I needed a second opinion about my scoliosis. He referred me to two doctors in the area but I never had a chance to get around to finding insurance and finding a doctor. I did search some doctors at Standford but I have no idea how this insurance thing goes...

    The questions that are concerning me are...

    Will I have problems with my back as an elderly or when I get pregnant? The doctor did say that it won't get worst but it is. I know that my curvature is at 55 degrees but I don't know what part of the spine.

    I feel that if I have the surgery now I would heal better than if I was older and it would keep me from having problems with my back in the future. (That is the one big reason why I am suggesting surgery). I am also afraid that I will be in more pain than I am now and that would be a problem for me.

    Any helpful information would be great!

  • #2
    Welcome, Jennyga. I'm Pam ... counting down the days until my surgery ... and while I'm glad you're here for some factual info, I'm sorry you (or any of us, for that matter) had to come here at all .

    Originally posted by Jennyga
    The doctor did say that it won't get worst but it is. I know that my curvature is at 55 degrees but I don't know what part of the spine.
    Do you mean the curve has progressed, the pain has progressed, or both? #1 on my list (yes, I'm an inveterate list maker these days - LOL) would be get copies of your films from the "hottie chiro". They probably aren't typical A/P (anterior/posterior) poses used by orthos, but they may be helpful to compare your Cobb angle from high school (I'd get those films too - if they haven't destroyed them). At the very least, the chiro films can be your baseline to mark any future (potential) progression.

    Out of curiousity, who told you your curve was ±55° (did you know there's there's a possible ±5° margin of error in the Cobb measurement ... and up to ±10° when measured by a different doctor?), and when?

    Originally posted by Jennyga
    Will I have problems with my back as an elderly or when I get pregnant?
    If your curve is => 50°, and has shown a history of progression in adulthood, it's generally expected to progress about 1° a year. This isn't *always* the case, however: My thoracic curve ranges from 48°-53° on the Cobb, and hasn't progressed at all in adulthood. If you are in the group to progress, consider this: You're at ±55°, and you're 26 ... if 1° a year applies in your case, by 40 (not elderly by any stretch!), you'd be at almost 70°. This is well into the range where you could experience organ impingement ... and yeah ... you could potentially have far more serious issues than "back problems".

    As far as pregnancy, my back hurt no more during either pregnancy. I didn't carry a lot of extra weight with either one (I weighed 128 when I had Jett, and 138 when I had Larra), so that probably helped.

    I had Jett very quickly (2-1/2 hour labor ... a 2 weeks early surprise, and too late to get an epidural - I dilated from 3-8 cm in 15 minutes), so I "scheduled" Larra (lest I sneeze and drop her while grocery shopping - LOL). I was NOT having another kid naturally, so I met with Anesthesia early on to have them "map my back" (taking the rotation into account) so they could hit an epidural the first try. They did, and it slowed her down to 3-1/2 hours - LOL.

    Originally posted by Jennyga
    I never had a chance to get around to finding insurance and finding a doctor. I did search some doctors at Standford but I have no idea how this insurance thing goes...
    Jenny, are you working? (i.e., do you have the option of insurance through an employer?) Did I understand correctly you have no insurance at *all*?

    This surgery (if you go that route) is *very expensive* (I've seen numbers from $75,000 to $300,000); in the U.S., (unless you're under 19 and Shriners eligible), I honestly don't know many who could afford that kind of out-of-pocket expense.

    If you have to go with a private insurance plan, you're likely to run into the "pre-existing" roadblock. Maybe someone on here has suggestions to manage that ...

    Best to you.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

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    • #3
      I would get a second opinion. If your curve is 45 degrees or greater, usually surgery is the best option. Even though you are finished growing, your curve will continue to grow. As for not having surgery, as you get older it will cause more problems. Best to get it taken care of while you are young. I had my surgery at 16 and carried 2 babies full-term (they weighed 8lb10oz and 8lb15oz) and had no problems while I was pregnant. I even won a bet about getting in and out of a Corvette without help when I was 9 months pregnant. I would not have been able to carry my children during pregnancy if I had not had the surgery.
      T12- L5 fusion 1975 - Rochester, NY
      2002 removal of bottom of rod and extra fusion
      3/1/11 C5-C6 disc replacement
      Daughter - T7 - L3 fusion 2004

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      • #4
        Some Advice

        Hey jennyga,

        I'm 20 years old and i had my posterior spinal fusion on Dec. 12, 2007. My curve was 54 degrees and is now 10!! I'm sooo excited about that..

        Not every situation is the same, but for the doctor to say u wouldn't progress any more is only a GUESS. My doctor told me i definately needed the surgery just due to the effects i could have when i'm older. Like being 30 years old with a 70-80 degree curve!( i was progressing after 18) and yes the older you get the harder and longer it takes to recover. definately get another doctor's opinion! (by the way i had a terrible experience w/ a chiro too, who was not even good looking! lol)

        As far as insurance goes...thats a mystery. I'm not even sure what my total surgery costed! I'm just getting my bills in slowly 2 months post op. I have Blue Cross Blue Shield State through my dad's employer. Its been pretty good so far, it coverd 99% of my 5 day hospital stay which was great, but about 80% of my pre-op visit. So i really don't understand the logic they use....i'm still waiting on the "bIG oNE" from my surgeon tho...i'll let you know about that one when it comes...

        Overall....I WOULD DEFINATELY GET A 2ND OPINION....of course no one knows if it will worsen for sure....but its better to do sooner than later....AND IF YOU'RE 18 OR YOUNGER please contact a Shriner's Hospital. They are FREE!
        glenda

        54T
        Posterior spinal Fusion--Dec. 12, 2007
        Fusion: T5-L3

        10T and Loving it!!

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        • #5
          I am only 27, same age as you and I have started having some problems with back pain and I have had some issues with my lungs already. I have progressed and I would get a second opinion if I were you. Your curve may not progress but if it is that large, I would almost be certain it will. As far as having children, I have a 63 degree curve and I did not have any problem carrying my child. The only thing was it was very hard for me to get an epideral due to the curves so that was not fun, but other than that, no problems. I am sure though the older we get, the more will change and I am ready to put this behind me so I am ready for my surgery. I would rather do it now than later while I am still strong and ready to bounce back.

          2005 Curves - 28/40/32
          2008 Curves - 28/63/44

          Surgery Date - 3/3/08
          Jamie Age 29
          Mother to a 6 year old daughter & an 11 month old baby boy.

          2000 Curves - 28/40/32
          2008 Curves - 39/63/44
          Surgery Date - 3/25/08
          T4 - L1

          63 degrees corrected to 15 degrees !

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