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Thread: What was your experience with patient referrals by Doctor?

  1. #1
    Join Date
    Feb 2012
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    USA
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    What was your experience with patient referrals by Doctor?

    I have been researching for a surgeon in a while. Till I came across one, I believe I found him through this forum. I was inquiring him for a while and I felt like he would be a good choice. He does not take my health insurance and the insurance deductions would be kind of crazy, wasn't sure if I could afford them. I was recommended to another Dr. at his office who does take my health insurance, 4 doctors run the office.

    The connection between me and the doctor I was referred to was immediate, as far as personality and patience he seemed like he could be a good Doctor as he was listening to me and answering all my questions. We are still keeping in touch and he always replies to my emails.. his stuff are helpful too etc.
    I asked him for some patient referrals, I gave him very basic specifications, I just wanted to talk to a couple of his patients who had similar experience to mine and hear about their experiences. This is a quote from my email to him about "Will you be able to get me in touch with a couple other patients who already went through exact same scoliosis surgery.." In a very timely manner I received 2 phone calls from 2 patients. I am a 29 years old female with scoliosis. The 2 referral were males in their 50th, both had work related injuries, one had slip disc and had his surgery in 2008. The other had Degeneration in his spine from work injury; he was one month pre surgery. Both were really nice guys and very helpful. Sounded like they were both sent to the doctor by insurance's request, as the doctor works with those type of claims. They both talked about the doctor's good manners and personality.
    The surgery is an Xlif Technic, a minimally invasive surgery, which would be executed in a similar way in different spine conditions, so I could see why their experience could be valid, but still not scoliosis patients.

    I was asking myself, why did I not get referrals to someone close to my age, a female and most of someone who had a scoliosis surgery and not another condition?
    I just spoke to the doctor's assistant and asked to apply for surgery with health insurance, this may be delayed regardless due to other reasons, not sure. Than I thought it over and was asking myself, could it be that the doctor does not have a lot of scoliosis surgery experience? Could it be the reason I didn't get the right referrals? I know those patients were his personal requests and guidelines.
    Now I am wondering what should I do??? It takes me forever to make decisions and once I made them it sucks going back to square one.. but I know my health is important..
    My concern would be, having a surgery with a doctor who may not have the right scoliosis surgery experience, I don't know this as a fact, but my feelings go that way, he has been a surgeon for 7-8 years. 13 years with other practices total. I already asked his assistance for the right patient referrals, hopefully I will hear back from the right people. I am just trying to read between the lines, not making any claims. What was your experience with patient referrals? Did you always get the right ones?
    29 years old Female
    45 Degrees Lumbar Scoliosis T12-L4

  2. #2
    Join Date
    Jan 2009
    Location
    Ames, Iowa
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    1,250
    I think your concern is very legitimate. I had conversations with several people from 2 different doctors I saw. They were all women and older like me and all had extensive fusions. They were very helpful conversations. Plus, Dr. Lenke who did mine had lots of info on his web site and testimonials. Honestly, if they had you talk to males with work-related injuries that required surgery for discs etc. --that's not even close! Did the doctor say how much he'd fuse on you, etc. etc. For this sort of surgery 7-8 years experience doesn't sound like near enough unless yours will be a very small area to fuse. Welcome to the forum by the way. I'm sure you'll get lots of info here. 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.

  3. #3
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    193
    Did you ask him how many scoliosis surgeries he's done over the years, apprx how many he does per year- specifically scoli? You're right to have hesitations, follow your instincts. Also - somewhere on the forum is a thread of what questions to ask your surgeon; asking those may give you more confidence in him, or just may rule him out. Good luck!
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  4. #4
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,158
    Hi there,

    I also would be concerned that this doc doesn't have sufficient experience specifically with your type of problem. I think the approach he is suggesting is out of the ordinary for your problem and may not be the best option for you. I would really urge you to get another opinion from a SRS surgeon, someone who sees lots of scoliosis patients. If you tell us your area you may even get some recommendations from people here who have had similar surgeries.

    Before I had my surgery, my surgeon gave me the names and numbers of three patients who had similar surgeries to mine. I called all three, and heard about their experiences. They were also in various stages of recovery, one was 6 months post-op and one was a year or so.

    You can search for experienced scoliosis surgeons at www.srs.org and search for a specialist. Let us know if you need help navigating this.

    Good luck,
    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

  5. #5
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,158
    Hi there,

    I also would be concerned that this doc doesn't have sufficient experience specifically with your type of problem. I think the approach he is suggesting is out of the ordinary for your problem and may not be the best option for you. I would really urge you to get another opinion from a SRS surgeon, someone who sees lots of scoliosis patients. If you tell us your area you may even get some recommendations from people here who have had similar surgeries.

    Before I had my surgery, my surgeon gave me the names and numbers of three patients who had similar surgeries to mine. I called all three, and heard about their experiences. They were also in various stages of recovery, one was 6 months post-op and one was a year or so.

    You can search for experienced scoliosis surgeons at www.srs.org and search for a specialist in your area. Let us know if you need help navigating this.

    Good luck,
    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

  6. #6
    Join Date
    Feb 2010
    Location
    Ohio
    Posts
    200
    Hi,
    I actually did not ask my surgeon for patient referrals since I had gotten so much information from this forum. My aunt also introduced me to a former patient of my surgeon (a friend of hers).

    The one thing I would add to the advice that you have already received is to ask your surgeon if he completed a fellowship beyond his orthopedic residency and, if so, what was the fellowship area. Some SRS surgeons have completed fellowships in spinal deformities.

    Since your curve is in your lumbar, it is crucial that your surgeon creates a balanced lordosis curve. You don't want sagittal imbalance!

    Follow your instincts and keep asking questions. Are you in pain? A 45 degree curve, if not progessing and not painful, is something that could be watched for some time.
    Kathy
    Kathy
    46 yrs at surgery, now 50
    71 degree thoracolumbar curve corrected to 34 degrees
    8/2/2010 surgery with Dr. Lenke

    posterior T9 to sacrum with pelvic fixation

    4 osteotomies and 1 cage
    http://s1066.photobucket.com/albums/...athK_08022010/

  7. #7
    Join Date
    May 2009
    Posts
    3,729
    i would suggest that you trust your gut....
    and...why not get another opinion...or two...?
    you don't know...you might find a surgeon with lots of experience who is just right for you...
    this surgeryis scary enough when one has faith in their surgeon's experience...

    i was given two phone numbers of two patients similar to me...
    however, i knew before i even called them that they would be happy with their surgery...
    i do not think any surgeon would want a potential patient to speak to a former patient
    who is not happy with their results...but i do understand why you want to hear another
    patient's experiences and recommendations...

    that said, i haven't had surgery...yet...
    but i do know which surgeon (who takes my insurance) i prefer...

    is there a reason you want your surgery done now...?
    i had the same thoughts the previous writer mentioned about no hurry with a curve of 45 degrees...??

    jess

  8. #8
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    3,263
    I agree with the above posters. I feel the most important factor in a good outcome is the surgeon's experience and skills.

    I asked my surgeon for a patient referral and a woman my age phoned, who'd had the same length fusion I was facing and she told me the good, bad and the ugly, which, as it turned out, was quite a different experience to mine which indicates how different even the same surgery can be on different patients. Let alone patients with totally different medical situations.

    Welcome to the forum and the very best of 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

  9. #9
    Join Date
    Mar 2012
    Posts
    10
    Hi all

    That sounds dodgy to me - on the other hand it might just be a clerical error made by his secretary/recpetionist. The doctor mayhave asked the secretary to find the phone numbers of 2 patients who had spine surgery, or somethig vague like that.

    I asked my specialist for some former patient phone numbers. He said he would get them to call me rather than me call them (ie I don't have their numbers). I have not recieved any calls. I emailed to let him know that and he said it was up to them whether they want to call me or not. :-(
    One of them is a doctor herself (a GP) so I am interested to hear her views.

    Cheers

    Lisel

  10. #10
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Did you ask the surgeon, outright--how many scoliosis surgeries do you perform per week, per month? How many surgeries have you performed THIS SPECIFIC surgery? If he hasn't done many of your surgery I would go elsewhere. Linda could probably tell you how many scoliosis surgeries per month is an indication of good experience. My feeling was that i wanted to go with someone who could do this surgery in their sleep....well not really LOL.
    __________________________________________
    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

  11. #11
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,161
    Suzy would be a good person to talk to. She is about your age, and had Lumbar scoliosis surgery a few years ago.
    She also knows her stuff.
    http://www.scoliosis.org/forum/member.php?2982-Suzy

    Contact her, tell her Ed say’s we miss her on the forum. (smiley face)

    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

  12. #12
    Join Date
    Feb 2012
    Location
    USA
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    Thank you all for your kind support and I am very happy this forum exists
    The Doctor assistant said the Doctor told her which patients to contact for referrals. She said 3 were supposed to call me, I only heard from 2. Anyways I emailed the Doctor directly asking for the patients referrals, I outlined that I am looking for Lumbar scoliosis female patients. I said the more similarities the better. I did say a female patient, which is very important since it's going to affect my body differently than a male.
    I emailed him last week as he was out of town so waiting to hear back. I know Doctors always have good referrals to offer, but it doesn't matter really, I just want to know that his patients with similar surgery had good outcome and he have experience with bringing good outcome forward.

    And for your questions, Yes I have a 45 degrees scoliosis but because its in my Lumbar I am experiencing all kinds of everyday discomfort and pain and difficulty sitting down. I never had real issues with my back before, in the past year or so it became unbearable, not sure why..

    When I met with my Doctor I had a long list of questions, I spent about an hour and a half with him. I asked him how many surgeries he performed, he kind of said that he doesn't know exact number so I tried directing him, saying Dozens? Hundreds? Thousands? I believe he landed in the hundreds, maybe couple of hundreds. He seemed very positive and assured it won't be a difficult fix as he was going to fuse only 3-4 vertebrates L1-L4 and I am in great physical health overall, since my waists are so petite he said it would be easier to get to my spine. I do like the minimally invasive approach, that was my initial interest.
    29 years old Female
    45 Degrees Lumbar Scoliosis T12-L4

  13. #13
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    Feb 2012
    Location
    USA
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    P.S. Sorry about the late response, I really didn't want to deal with it. I just want this all behind me, as I see this now, it serves no purpose other than enormous amounts of stress. I have really changed in the past year, for the good too but mainly for the bad, I became restless and start developing a stress problem with everything in my life, I really just want a peace of mind with this whole subject. I do not know how everyone else copes with this condition, maybe I don't have the right support. If I was in my 60th I would put a robe on, devote my life to the service of others and suck up the pain, many times I wish I had that choice. But I have my whole life in front of me, I want to enjoy my youth, I want to be able to sit and move freely. I want to look in the mirror and look 'right'.

    Months back, I went to a Healer massage therapist who worked on my back for 3 hours, once my back was so loose and relaxed he was able to push all my vertebrates back into place, one by one, my spine was straight, automatically my hips shifted into place, my whole body was put in it's natural place, like finding a missing lost puzzle piece. I cried, amazed of how comfortable our bodies were meant to be, I never felt so free and light,. It's like everything was right, where it belongs. I couldn't believe how awkward my body felt normally, no wonder I experienced all that pain. At the same time, I knew the free feeling of a straight spine too, it was always a part of me, kind of impossible contrary as I always had scoliosis. The straight spine would hold for about a minute, than my spine will go back to it's curve. How can I forget such an experience, I believe perfect balance is our birth right. Now, where do I unveil the perfect balance, I don't know, maybe it's a mind, body and soul type of thing. Is it really just up to the Doctor's abilities or does it come from me too.. Do we control the surgery's outcome with our mind just as much as the Doctor can with his qualifications and abilities?? What should we actually seek??
    Last edited by YB1125; 03-27-2012 at 11:15 AM.
    29 years old Female
    45 Degrees Lumbar Scoliosis T12-L4

  14. #14
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    Feb 2012
    Location
    USA
    Posts
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    Update

    Ok so after my responses here last night, I received an email from the doctor assistant that a patient will be contacting me. I did receive a phone call this morning from a lady(female finally) who is 55 y/o, she sounded like she was in great shape, keeping active, petite like me. She said one of the ladies who worked at the hospital is the mother of one of the students she teaches and agreed that he was one of the best surgeon in that hospital . I was ok with everything, but she did not have a scoliosis Surgery, she had 2 disc degeneration and a cyst in her Lumbar. You could just imagine I was disappointed. I emailed the Doctor assistant and CC the Doctor just so we all are on the same page. I broke it down in the simplest way and said 'Why' it is important to me to speak to a Scoliosis patient and not any other condition. I guess we will have to see where it is going.
    I am sure he is a good Surgeon as my intuition told me when I met him, I won't even considered him otherwise. But I got to get this last piece together. I also emailed this website http://www.thebetterwayback.org/ to get in touch with another scoliosis patient my doctor operated on, this is the same Technic and company my Doctor uses for Xlif (minimally invasive), will check with them if they can connect me with any of my Doctor's patients they have in file.

    From here on I got to trust in the good of things and that everything is facing in one direction, which is a positive outcome. However this will come about, with whichever surgeon.. Everything happens for the good and there is no need to feel frustrated. It will all come together in it's right timing, in the right place for the best of my interest. As we believe so it would be.
    Last edited by YB1125; 03-27-2012 at 02:33 PM.
    29 years old Female
    45 Degrees Lumbar Scoliosis T12-L4

  15. #15
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    USA
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    Quote Originally Posted by titaniumed View Post
    Suzy would be a good person to talk to. She is about your age, and had Lumbar scoliosis surgery a few years ago.
    She also knows her stuff.
    http://www.scoliosis.org/forum/member.php?2982-Suzy

    Contact her, tell her Ed say’s we miss her on the forum. (smiley face)

    Ed
    Thank you Ed, I just contact her, as I was reading some of her threads, she is a positive one. I appreciate you telling me about her experience.
    29 years old Female
    45 Degrees Lumbar Scoliosis T12-L4

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