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Thread: Trying to decide to do first time surgery with Dr. Lenke

  1. #1
    Join Date
    Mar 2011
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    10

    Trying to decide to do first time surgery with Dr. Lenke

    Hello,
    I have been reading posts on this forum for a year and I have finally decided to ask for advice. I was diagnosed with mild scoliosis as a teen and never wore a brace and never had surgery. It never bothered me until menopause. My curves have increased about 2 degrees a year over the last 5 years. I have a 48 degree right upper lumber curve and 41 degree thoracolumber kyphosis. I am 53 years old and now have radiating pain into my right leg and back and hip pain upon any type of exercise or chores. I am a former ballet instructor and I don't even exercise any more because it increases my pain level. Over the past year I have been getting steroid epidural injections that help for a few months at a time. I have had appointments with Dr. Boachie and Dr. Lenke and if I was going to have surgery I think I would choose Dr Lenke. No one has said I must have surgery right away but my life has become so limited...there is so much I can't do....always looking for a chair to sit down. But I am so afraid of the surgery and a possible bad outcome that will put me in a worse position then I am in now. (at least I can sit down and be out of any pain) I am afraid I will have constant pain after surgery.
    I guess I am looking for some positive information from any Dr, Lenke patients.
    I should thank all of you for sharing your stories and advice as I have been reading them and getting lots of great info already.
    Stacy

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
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    Hi Stacy

    True sciatica is where you have the leg pain.....and is usually caused by lumbar herniation of some degree.

    Making that decision is tough. Pain, or extreme pain that affects quality of life is usually what makes many of us to surrender to our surgeons. I waited 34 years, but at the end with mind blowing pain, my decision became easier to some degree.

    Many of us come through quite well. The numbers are pretty good these days provided you “start” with a good surgeon. If I could do it over again, I would have done it about 10 years sooner.....

    Welcome to the forum
    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  3. #3
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Welcome Stacy. I know you're going to receive lots of positive recommendations from Dr. Lenke's patients. I believe the single most important factor in a good outcome from scoliosis surgery is the surgeon's experience and skills. Dr. Lenke is one of the best, from my reading here, and I believe if you went with him, you'd have an excellent chance of the best possible outcome. Unfortunately there are no guarantees, but the pain often drives us to make the decision, as Ed says. We know what a scary decision this is, but the more you know about the surgery, the more questions you have answered, the more confident you will become.

    Good luck!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  4. #4
    Join Date
    May 2009
    Posts
    3,729
    welcome Stacy
    there are many good scoli surgeons, particularly in big cities...
    i thought people on forum said Dr Lenke only takes patients with large curves of at least 70 degrees...

    i have had epidural shots, facet block, nerve ablation, SI joint shots...the only ones that helped me were
    the SI joint injections...but i got too much steroid and it left me with very low cortisol....i have to wait til
    mid April to get more blood work, see if my cortisol will come back as steroid leaves my body....the shots
    helped the lumbar pain, but i have paid quite a price now...i thought injections into joinst were safer than
    oral steroids...but the stuff doesnt just stay where they put it, depsite what they sometimes say...
    my upper curve is now 42, lower 70...i have been putting off surgery for about 6 years all told....

    best of luck in whatever you decide...

    jess
    Last edited by jrnyc; 04-01-2012 at 07:26 PM.

  5. #5
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Welcome to the forum. I am one of Dr. Lenke's patients and I am now almost 15 months post-op. I know there are several excellent scoliosis surgeons in the country, but I can only speak about Dr. Lenke. I have no qualms with recommending Dr. Lenke and feel so fortunate that he was my surgeon. His web site has several testimonials from patients and also many before and after pictures. If you do a search for Dr. Lenke-You Tube, there is a nice video about a family who were told that Dr. Lenke was the only surgeon in the country that they knew of who might be able to help their son. When it is almost an elective surgery, the decision is difficult. I was one of the few who was only in occasional pain before surgery and had not had to limit my activities at all. In spite of that, I have never regretted having surgery and feel like my future is better because of it.
    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/

  6. #6
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Welcome to the forum! Yes, you would be in the best of hands with Dr. Lenke. His staff is excellent too. I don't think you could go wrong. Good luck in making your decision. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  7. #7
    Join Date
    Jul 2011
    Posts
    535
    Hi Stacy.

    How long ago did u consult with Dr. Lenke? Lenke gave me a life I've dreamed of: excellent correction and pain free (no guarantees on either). Explore my blog in my signature to learn about my journey Lenke.

    Warmly
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  8. #8
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
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    Welcome to the forum. I am less than 3 weeks out from surgery with Dr. Lenke. I was nearly the opposite of you--I had very large curves (80ish) and almost no pain. I went to six scoliosis surgeons--all SRS members--before I picked Lenke. He told me I was a 3 on his scale of 1-10 for difficulty, so that gave me a great deal of confidence. So, if you are going to have the surgery and he will do it (I think Jess is right that he only takes on larger curves), I would not hesitate to go with him. I have also heard nothing but excellent reviews of Dr. Boachie, but understand there may be more insurance issues there. Your curve is lower that what some people use for surgical cutoff, but then you've got the pain. I would say if you have truly documented progression, then I would think seriously about the surgery. Both of those doctors are excellent, but you need to be aware of all of the risks. So far I am very pleased with my outcome. (One note--Dr. Lenke's complication rate is much lower than average for adult patients. He has a study to back that up.). Good luck with your decision--it was the hardest one of my life!
    Best,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  9. #9
    Join Date
    Mar 2011
    Posts
    10
    Thank you all for the information and responses. I have one question, I think my pain must be related to nerve impingement. I have pain that is in my right leg and other pain on my right side of my lower back and my right hip. If I have the surgery will it alleviate the nerve compression and thus the pain?
    How long did you have to stay on the major pain killers?
    thank you so much,
    stacy
    Stacy
    Surgery 2016 T-4 to Sacrum with Dr Samuel Cho Mount Sinai NYC
    48 degree right upper lumber curve
    41 degree thoracolumbar kyphosis

  10. #10
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    970
    I'm no doctor, of course, but I had a few months of he same type of pain you're describing. Dr. Lenke said it was probably from the nerve root being pinched at the bottom part of my curve. I believe he did what is called "decompression" to open up the space around that nerve so it wouldn't get pinched so easily. So, yes, they definitely will try to fix that type of pain, and are often successful. But I think the good doctors will tell you there are no guarantees. You just have to weigh the risk/reward scenarios of having the surgery vs. not having it, and pick the best option. I also wonder (and please chime in here folks if this is a bad idea) whether you might be able to get away with a smaller surgery that just does the decompression and fuses one or two vertebrae, rather than the long fusions that most of us scolis have. I'm just wondering because of your relatively small curve size. I am by no means an expert, but it might be a question worth asking.
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  11. #11
    Join Date
    Mar 2011
    Posts
    10
    I have asked every doctor I have seen about a smaller surgery and they all say not to do it. It will only lead to more surgery later that will be more difficult to fix.
    Stacy
    Surgery 2016 T-4 to Sacrum with Dr Samuel Cho Mount Sinai NYC
    48 degree right upper lumber curve
    41 degree thoracolumbar kyphosis

  12. #12
    Join Date
    Sep 2003
    Location
    Northern California
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    7,126
    Quote Originally Posted by titaniumed View Post
    Hi Stacy

    True sciatica is where you have the leg pain.....and is usually caused by lumbar herniation of some degree.
    Probably more likely from stenosis in anyone over the age of 50.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  13. #13
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    May 2008
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    reno,nevada
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    Yes, I was going to edit that....

    Oakland’s news today was disturbing.....Glad to see your ok.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  14. #14
    Join Date
    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by titaniumed View Post
    Yes, I was going to edit that....

    Oakland’s news today was disturbing.....Glad to see your ok.

    Ed
    Scary, and unfortunately, so familiar of late. Thankfully, I was in SF all day.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    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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