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Thread: Taking suggestions for fourth, fifth (well you get the picture) opinions, please!

  1. #1
    Join Date
    Apr 2014
    Posts
    5

    Taking suggestions for fourth, fifth (well you get the picture) opinions, please!

    Hello:

    This is only my second time posting here and I don't know that I'll be following all the proper methods, but hopefully this is ok to ask... I live in the Seattle area and have already seen 3 surgeons. I talked to one who said the next places to look would be SF and Denver. I'm 48 y.o. and was in a Milwaukee brace from about age 12 y. 3 months to almost 15 y.o. I think my curve then was 37. I had an x-ray in November and it's now 62 thoracic and 45ish lumbar (depending upon who's reading it). I feel paralyzed. I don't want to make the wrong decision. I don't want fusion at all, but life right now is pretty miserable. Vicodin when I wake up and sitting on a heating pad as much as I can. Can anyone recommend a neurosurgeon in OR, CA, AZ, NM, CO, MT, ID (I think I hit all the PMW/Western/Southwestern states). I'm willing to travel for consults because I want to make the best decision.

    Thank you in advance,

    Suzanne

  2. #2
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Hi, Suzanne,
    Welcome to the forum! I think you are extremely wise to seek out the best surgeon possible for this surgery. I am sure that Linda, the moderator on the forum, will reply and give you some names of excellent surgeons.
    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/

  3. #3
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161

    Dr Robert Hart, Swedish Medical Center

    Hi, I recommend Dr Robert Hart who is now the head of the spine program at Swedish Medical Center. He moved last year from OHSU, where he was for a long time. I was his patient for 8 years before he moved and know him well. He is an excellent surgeon who has lots of experience with complex scoliosis surgeries. I suffered broken rods twice due to several levels not fully fusing, and he did both of my huge revision surgeries. My back is now doing really well, and it's been 15 months since my last revision.

    Dr Hart is compassionate and very nice. He spent as much time as I needed explaining the surgery and answering questions prior to surgery. Here is a link to another thread about him: http://www.scoliosis.org/forum/showt...ht=Robert+Hart

    Best of luck in your journey.
    Last edited by leahdragonfly; 01-07-2017 at 08:04 AM.
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  4. #4
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Hi Suzanne, I would also recommend Dr. Hart. I have seen him for 3 revisions for a very complicated situation. He was in Portland for ? 17 years and as Gayle said is at Swedish Spine Center. I suggest that you be persistent in trying to make an appointment as for some reason, the "new Patient" line has not responded to me.

    I highly suggest that you do have a few opinions and choose the doctor that you can trust.

    Having your surgeon in Seattle is a real plus for follow-up.

    And.....nobody really "wants a fusion". I resisted surgery for 2 years [initial diagnosis age 64] and did every procedure possible and 2 years of PT. I was on Dilaudid and ice bags. No life really. I asked the two surgeons that I consulted, "If you were in my shoes would you have surgery?" One said, "Anyone in your situation would have spinal surgery" and the other said, "yes". Both said that I would be in a wheelchair on Narcotics within 5 years.

    Good luck and if I can be of assistance, send a PM. I am not on the forum too much, so my initial response may not be immediate.

    Susan
    Last edited by susancook; 01-07-2017 at 11:48 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

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