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Straight-less in Seattle (sorry, a little movie humor)

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  • Straight-less in Seattle (sorry, a little movie humor)

    Hi all:

    This is my second post ever here. My first was in response to someone looking for a scoliosis doc in the Seattle area. Some background-- I was discovered to have scoliosis when I was probably 10ish. Watched and x-rayed until I was about 12 yrs 3 mos and put in a Milwaukee brace. I hated it, of course, and was so self-conscious. Plus, I was a swimmer and hated having to change in front of everyone into and out of it. I spent a lot of time alone in my room, so my parents wouldn't know I wasn't wearing it 23/7. I ended up calling my doctor the summer before I was to enter high school (which back them was 10th grade) and told him I hadn't been compliant and that I was refusing to wear it to high school. He agreed that if I would not be compliant, I could stop wearing it. I think I had just turned 15 and perhaps the thought was that I had reached skeletal maturity, or was very near it. I do seem to recall that my highest curve was 37 degrees, since back then, they threatened surgery for anything over 40 degrees.

    Fast forward to Jan 2014. Walking on snow the first week of January led to severe hip pain, limping, MRI/X-rays of the hip and then the eventual full spine x-ray where it was discovered that my scoliosis had kept progressing. I think it was measured at about 54 degrees.

    Since about March or so of this year, I have been having increased pain and was put on Vicodin by my primary about 4 months ago. I saw Dr. Sethi at Virginia Mason today, who measured my most recent x-ray (done at Swedish-Cherry Hill in October) to be 62 degrees. I started crying, of course, because I DO NOT want surgery. I honestly don't remember a lot of what he said, but I think he said I would be fused from T3 to L3, because he wanted to leave my hips mobile (gee, thanks!). It scares me to think of being inflexible for the rest of my life. That being said, I was very impressed with him.

    I did have an appt. with Dr. Jens Chapman in October (hence the x-ray), but I never actually got to see him. I was worked up by a nurse practitioner, who said if I had the surgery, I would be very rigid for the rest of my life and suggested I do pilates. Dr. Chapman was then supposed to come in, but she told me that he got pulled into an emergency surgery. I had already looked him up and knew I would never let him operate on me. He has been involved in a lawsuit and used a compression fracture glue on two women who died on the table. He was involved in animal testing of the project, so I was shocked to see that he went ahead and used it on humans. :-(

    So, this is all a long way of saying that I was very impressed with Dr. Sethi and will be following up with him yearly, until I am ready for surgery (or sooner if needed). I'm not ready right now. I'm 48, have a 9 y.o. son and we have no family in the area to help us. (My husband is from England and my parents are elderly-- 82 and 76-- and in WI).

  • #2
    I liked your movie humor!

    It's tough to ever make the decision to have this surgery. Your situation is much different than mine was. I had retired from teaching and was in little pain unless I had to stand in one spot. I was 59 when Dr. Lenke told me that my prognosis wasn't good if I didn't have surgery in the next few years. He recommended not waiting too long. I was terrified of the surgery, but have not regretted it. I can understand that you are younger and have a 9 year old who probably has a lot of activities. I guess my biggest concern would be the level of pain that you can tolerate and how much your curve progresses. Does your primary care Dr. think you can be on Vicodin indefinitely?
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

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    • #3
      Investigating all my options

      Originally posted by golfnut View Post
      I liked your movie humor!

      It's tough to ever make the decision to have this surgery. Your situation is much different than mine was. I had retired from teaching and was in little pain unless I had to stand in one spot. I was 59 when Dr. Lenke told me that my prognosis wasn't good if I didn't have surgery in the next few years. He recommended not waiting too long. I was terrified of the surgery, but have not regretted it. I can understand that you are younger and have a 9 year old who probably has a lot of activities. I guess my biggest concern would be the level of pain that you can tolerate and how much your curve progresses. Does your primary care Dr. think you can be on Vicodin indefinitely?
      My primary was not concerned when I when I told her that the neurosurgeon said I should get off the Vicodin. She said I have pain and it's helping me. She asked about whether he gave a specific reason other than to say it's habit forming and might not continue to be effective. I honestly don't remember! I really need to have other people at appointments with me, but it's just not possible. So, I'm still on it at the moment and trying to find out if I can possibly get consults out-of-state. I asked him who he would recommend (saying I knew he'd be biased and say he's the best in the area). He said Denver or SF. P

      Paging Drs. Denver and SF!!!

      Ha ha. So, I need to figure out who these experts are, set up consults and see what they think.

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