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Thread: Finding a surgeon

  1. #31
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    May 2008
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    Susan is a trooper for sure.

    Rohrer, I didn’t know Dr Hey recommended surgery for you a few years back....What levels did he propose?

    Scoliosis and insurance completely changed my life. I quit a good job due to crappy insurance and started my own business so I could have control over that. I did this 11 years before my surgeries and the insurance was not cheap. The premiums at the shop ran as high as 10K per month, until I suggested pulling the plug before I had a heart attack signing the next check. Chopping on the cancer riders lowered it substantially. I actually could have paid cash for my surgeries, a triple bypass, and a 3 level ACDF and would have come out flush.....

    I always selected the PPO...

    Having all our ducks in a row is required. Logistics takes thought....and the most important thing is being educated, and having a positive attitude.

    Even if you have all the ducks sorted out, and have the education and knowledge, but lack in the enthusiasm department, rejection is possible since we need to be in this for the long run. Once a scoli, always a scoli, through think and thin. I was rejected in the end till I told my surgeon “I can hang” “I wont give up”.

    My horse blinders were on looking straight ahead, focused on the goal.

    Damn the torpedoes- Admiral Farragut Mobile bay, Alabama

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,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

  2. #32
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,553
    The good Admiral, is rolling over in his grave.
    Trooper Susan....still crutchin' along
    Last edited by susancook; 04-06-2016 at 11:58 PM.
    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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  3. #33
    Join Date
    Mar 2010
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    2,755
    Quote Originally Posted by titaniumed View Post
    Rohrer, I didn’t know Dr Hey recommended surgery for you a few years back....What levels did he propose?

    Ed
    He didn't say. I hadn't seen him and his receptionist said she didn't know what procedure he was working on. That's when the ball dropped and I got an e-mail from him telling me that I had plenty of qualified surgeons in my own area, which I do. It was the insurance! He didn't say it. I was scheduled for a consultation with him, out of pocket. He cancelled it and that was the only explanation I got from him. His receptionist said he prayed about it and decided not to see me. She also told me that he's prayed about surgeries and then cancelled on the patient right before the surgery date. It made me nervous, though, that he was planning a surgery and he hadn't seen ME, yet, just my x-rays.

    I don't care that he prays about things and he is very open about his religious affiliations on his website. But I think he should keep that separate and give the patient the real scoop and tell them that it's either the insurance/money or that the procedure may be too complicated for him.

    Dr. Tribus suggested T1 to L1 or L2 back when my curve became a double.

    It's about to become a triple at the rate I'm going!

    Rohrer01

    ...YES Susan IS a trooper and been through a LOT.
    Last edited by rohrer01; 04-08-2016 at 02:03 AM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #34
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    Mar 2010
    Posts
    2,755
    Ed, you really had a heart attack, too? I can't imagine 10K/mo for insurance.

    We are the working poor. We'd be better off on public assistance! Barely make it from paycheck to paycheck. Hubby just went on Medicare. When he retires, I may qualify for SSI, but really want to go back to school. There are no PPOs available to me. Everything is an HMO, even on the "market". We can't afford to buy an insurance that goes anywhere and has a decent out-of-pocket. As it is, the insurance company has been ripping us off for years as they say they run on a calendar year, yet our literature that we are provided with says otherwise. There's a very misleading "loophole". Our insurance starts in November. I had a $3000 out of pocket with a $6350 co-insurance, plus I only got a discount on my meds which still totaled about $200/mo and ER was $100 no matter if they kept me or not. It was about a $850/mo policy for me and hubby. His employer payed half of his and it was still that much. That is why I switched to a cheaper policy, $331/mo with no co-insurance. Once the deductible is met it covers 100% of everything, something that the "old" more expensive policy didn't. But I had to meet my "out-of-pocket" twice, which I did. They carried over $3000 from our old policy's "out-of-pocket" to the November/December period because they are on a calendar year. But I paid $6350 in "co-insurance" which didn't count as out-of-pocket. Well it came out of our pockets! I accumulated the $3300 in those two months Nov/Dec to bring it up to $6300. THEN it started over and I had to meet the $6300 again, which I did by the end of February! So I owe $9600 in medical bills plus my monthly premiums until the end of October. I can't afford to switch now because everything is covered 100% until October 31st including my meds and ER. If I go to the open market I will be two months without insurance. I don't know what to do about it. Grrr... Some may say that is cheap. But it's not cheap for us. It's what hubby's employer offers and we HAVE to take it if it meets the minimum requirements. At least hubby is on Medicare now!


    I hate messing with insurance. The only good thing that came out of this "mandatory" insurance is they can't put a waver pre-existing conditions and there is no $2,000,000 lifetime cap. For us scolis that need surgery, we can meet that pretty quickly. Well ANYONE with a catastrophic illness can chew through that pretty quickly for that matter.

    One thing is true. I always collect more payments from the insurance companies than I pay in. It can't be helped. Even when I wasn't so "sick", my kids were little and managed to get sick often enough to have us come out ahead. My littlest one had a very expensive illness. He's grown and fine now. Phew!

    Rohrer01
    Last edited by rohrer01; 04-08-2016 at 02:48 AM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #35
    Join Date
    May 2008
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    reno,nevada
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    Quote Originally Posted by rohrer01 View Post
    He didn't say. I hadn't seen him and his receptionist said she didn't know what procedure he was working on. That's when the ball dropped and I got an e-mail from him telling me that I had plenty of qualified surgeons in my own area, which I do. It was the insurance! He didn't say it. I was scheduled for a consultation with him, out of pocket. He cancelled it and that was the only explanation I got from him. His receptionist said he prayed about it and decided not to see me. She also told me that he's prayed about surgeries and then cancelled on the patient right before the surgery date. It made me nervous, though, that he was planning a surgery and he hadn't seen ME, yet, just my x-rays.

    I don't care that he prays about things and he is very open about his religious affiliations on his website. But I think he should keep that separate and give the patient the real scoop and tell them that it's either the insurance/money or that the procedure may be too complicated for him.
    I agree.....

    I wouldn’t chalk this off as a positive review....We also don’t know if this was an office worker communication problem.

    So, I guess insurance comes in at a 1st place position on getting all our ducks in a row, and sometimes moving on to another surgeon is just something we have to do. Quality insurance usually provides a green light.

    It funny since I am audited on customer response protocol documents, all my ducks have to be in a row, and my customers have to be satisfied. This is something we choose as an ISO registered business, its all about constant improvement and customer satisfaction. If I cant do something, I state that. If I don’t know, I state that. If I can, I cover payment standards and terms and state that in a contract. All of this is very upfront and clear unless an order comes from another country, and they us a translator. (smiley face)

    These ISO standards were drawn up many years ago, its part of our “competiveness answer” during the global equalization that is happening throughout the world today. When competition is limited, rules are not as stringent since business is good. When pharmaceutical companies double medication prices and the cash flows, it draws concern.

    Doctors need clear communication standards. I also saw this many years ago with a different surgeon. 3 months went by and all of a sudden I get this call for a corticosteroid shot, while boarding a dive boat out in Hawaii. If communication was up to snuff, it would have been ok, but in the end, he lost a customer.

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,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

  6. #36
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    reno,nevada
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    Quote Originally Posted by rohrer01 View Post
    Ed, you really had a heart attack, too? I can't imagine 10K/mo for insurance.
    No. But writing big checks is a leading cause of heart attack! (smiley face) My heart is is good shape from over exercise as a youth. I have read that exercise when younger has greater benefit than as an adult.

    I don’t want to turn bents thread into an insurance rant. Better to start another thread. Just wanted to point out what can really matter when choosing a surgeon.

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,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

  7. #37
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    Jan 2012
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    Yacolt, WA
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    Quote Originally Posted by jackieg412 View Post
    Susan is really a trooper. But do remember you need someone to follow up with. And expect some problems. If you expect problems you won't be disappointed when it happens. Make sure to interview some one near you. You may need their help.
    Excellent points. I traveled back to SF until I transferred to OHSU after my spinal cord injury at 16 months postop.
    I guarantee, something will go wrong or will be unexpected.
    Susan
    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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  8. #38
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Keep searching until you feel comfortable

    Hello, I am a retired nurse anesthetist. I had revision surgery for a old fashioned scoliosis surgery in 1956 - no hardware. At age 58 I was getting out of breath from my curves: 30 cervical, 80 thoracic and 40 lumbar. Since I live in the NY area I went to HSS where dr Boachie-Adjei did my revision: T-4 to sacrum. This was in 2002 when I was 60. I am now 73 and totally pain free. The surgery was the best thing I ever did. You have an advantage in that you have a virgin spine meaning no fusion to take down like mine.
    I suggest do your homework and follow the suggestions on this forum.
    Try not to let fear paralyze you because it is a subtle foe.
    My recovery took 6 months and I went back to work as an anesthetist for 8 more years until I retired at 68.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  9. #39
    Join Date
    Mar 2013
    Location
    Chaska, Minnesota
    Posts
    41
    Ed,

    I have been here lurking for quite a while reading posts and gathering as much information as possible. I am finally at the point where I have selected a surgeon and the date is scheduled. I currently have a 55* lumbar curve and a 37* compensatory curve that has become extremely painful in recent years. So much so that it has stopped me from doing all of the things that I love to do like running and road bike races. I am grateful that I got my marathon in last year, but so very sad that I need to let go of something that gave me so much joy and stress relief.

    I wanted to personally thank you for all of the guidance and support that I have seen you lend to other people on this forum. I ordered the book that you recommended and look forward to reading it and also having my husband read it so that we are as informed as possible going into this surgery.

    "It might not be a bad idea to read David Wolpert’s book. He did a good job on it...."

    Thank you

    Misty in Minnesota
    Attached Images Attached Images

  10. #40
    Join Date
    Sep 2014
    Posts
    57
    Welcome Bent,

    I am a fresh newbie out of surgery, just over 3 weeks out. I am in Southern California and was surprised how many excellent surgeons are out here. I chose my surgeon because of his experience with extreme cases and his interest in research for newer, less invasive rechniques. He is young but I wanted that, a physician who will be there for me over the years. His bedside manner is amazing and he will not leave the room until you understand everything. I would totally travel for the right surgeon.

    For me, I was told hospital would be 3-5 days (!) but I stayed 10 due to pain management problems. I am lucky my parents are healthy and were able to take care of me after while my husband is home with our kids. If you don't have that 24/7 care available for at least 3 weeks, a rehab facility would be right for you. I am 4 weeks on Tuesday and I can not prepare food yet or do any house chores. I can shower but still need a little help.

    Good luck on finding the right one. A very important decision!
    Jana
    Diagnosed with idiopathic scoliosis at age 11
    Dr. Edgar Dawson of UCLA
    Braced and "stopped" below 50 degrees
    Age 25: 47 degrees, 48 degrees
    Age 38 (3 babies later): 60 degrees, 63 degrees and 2.5 inches shorter
    Age 41: 64 degrees, 70 degrees
    Dr. Gregory Mundis Jr. of Scripps Hospital, La Jolla CA
    June 2015-ALIF on L5-S1 for a slipped and degenerated disk
    June 14, 2016-T4-L4 spinal fusion with instrumentation
    Post-surgery: 16 degrees, 12 degrees and 2 inches taller

  11. #41
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    May 2008
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    Quote Originally Posted by mistybowe View Post
    Ed,

    I have been here lurking for quite a while reading posts and gathering as much information as possible. I am finally at the point where I have selected a surgeon and the date is scheduled. I currently have a 55* lumbar curve and a 37* compensatory curve that has become extremely painful in recent years. So much so that it has stopped me from doing all of the things that I love to do like running and road bike races. I am grateful that I got my marathon in last year, but so very sad that I need to let go of something that gave me so much joy and stress relief.

    I wanted to personally thank you for all of the guidance and support that I have seen you lend to other people on this forum. I ordered the book that you recommended and look forward to reading it and also having my husband read it so that we are as informed as possible going into this surgery.

    "It might not be a bad idea to read David Wolpert’s book. He did a good job on it...."

    Thank you

    Misty in Minnesota
    Well there Misty in Minnesota, thanks for chiming in! Since you are in Minnesota, your location reminds me of the penguins in Antarctica and how they huddle during those brutal storms. Maybe you were on the perimeter and finally decided to rotate to the center of the group for warmth? Glad you made that decision! (smiley face)

    Your x-ray looks like mine did years ago.....which became quite painful in my 40’s. I skied and mountain biked in pain, and was pretty good at ignoring pain....but as we all know, we capitulate in our battles, and the rest is history. My surgeon commented that I was in excellent shape from being so active, everything but my spine of course....

    When is your date? Can we assume its at TCSC?

    Are you ready? Got any questions?

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,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. #42
    Join Date
    Mar 2013
    Location
    Chaska, Minnesota
    Posts
    41
    Quote Originally Posted by titaniumed View Post
    Well there Misty in Minnesota, thanks for chiming in! Since you are in Minnesota, your location reminds me of the penguins in Antarctica and how they huddle during those brutal storms. Maybe you were on the perimeter and finally decided to rotate to the center of the group for warmth? Glad you made that decision! (smiley face)

    Your x-ray looks like mine did years ago.....which became quite painful in my 40’s. I skied and mountain biked in pain, and was pretty good at ignoring pain....but as we all know, we capitulate in our battles, and the rest is history. My surgeon commented that I was in excellent shape from being so active, everything but my spine of course....

    When is your date? Can we assume its at TCSC?

    Are you ready? Got any questions?

    Ed
    Good morning Ed,

    I spent most of the weekend reading the book that you recommended and it has been very helpful and I feel that it is preparing me well for my next meeting with my surgeon on Friday. I now have many more questions because of it.

    I am lucky to live in a place with many qualified surgeons and have consulted with quite a few. Though I have seen Dr. Joseph Perra at TCSC, I have decided to have a surgeon from Twin Cities Orthopedics do my surgery. It is scheduled for Tuesday, August 2nd. I work in commercial real estate that focuses solely on healthcare so I have access to many doctors and have received feedback and references on many and Dr. Jeffrey Dick came highly regarded, specifically from other surgeons. I feel that both would do a great job, at the end of the day, I went with my gut on this one. I hope I have made the right decision.

    My biggest question and concern right now is recovery time and how long until I can realistically be back in the saddle at work. I am a 100% commissioned sales person so my income depends on my ability to work. Dr. Dick told me that I can return to work after 3 weeks but I am reading that many people need much longer. My job is very flexible, so I can certainly ease into it and I have a sit/stand workstation. I don't want to push myself too hard here, but want to prepare my business partner for how long I will realistically be out of the loop. Do you think taking care of correspondence and conference calls from home is do-able week 2 or 3 post-op? My husband is taking a full 3 weeks off to stay home and be my nurse so I feel that I have a good support network. Thoughts on recovery that you can share?

    As far as being ready, i'm not really sure what I should be doing but I am trying to eat well and I do low-impact exercise of some kind every day, mostly elliptical/treadmill/stairmaster workouts. I'm thinking of the surgery as a race and I am in training mode. I am hopeful that if I am in good physical shape before the surgery, that it will make recovery that much easier. I'm nervous about the pain and it's hard to plan for that. I have no idea how I will handle the pain but am hoping for the best.

    Silliest question of all... I work in a business setting and wear heels to work every day. Should I assume that my days wearing cute shoes are over? I know it sounds petty, but am curious what's realistic. Does anyone out there have a footwear recommendation that looks professional but is comfortable and sufficient during the long recovery phase?

    I'm sure I will have many more questions and appreciate the online support.

    Warm Regards,
    Misty

  13. #43
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi Misty,

    I'm pretty shocked you were told you could return to work at 3 weeks. Most people feel extremely awful for the first 2-3 weeks, I am sorry to say, and you will no doubt still be taking a considerable amount of narcotic pain medication. I also noticed a great deal of difficulty thinking clearly and concentrating at all at that point, and felt pretty foggy headed and slow for at least 6 wks if not more. At 2-3 weeks you will still be taking several naps a day, and may be thoroughly exhausted after a shower. There's someone here who posted last week about being so discouraged to feel so poorly at the 3 wk point.

    I don't want to come across as being negative or discouraging, but I want to give you a realistic idea of how you may be doing at the 3-wk mark. Please don't try to push yourself and rush your recovery. I thought if I was really tough and determined to just suck it up that I could rush my recovery, but it is simply not possible and requires a tremendous amount of patience and time. Please give yourself ample time to heal, since you only get one chance for your new back to heal properly.

    As a point of reference, I returned to work as an RN in a busy cardiac cath lab on seated-only duty at 12 weeks post-op after all 3 of my surgeries. It was exhausting, painful, and I feel it set my recovery back my a solid month, but that's just my experience.

    Take care and please let us know how things are going. Walk as much as you can and make sure you have thighs of steel before surgery!
    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

  14. #44
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    There is no way that you can return to work at 3 weeks. You will be in pain and be on pain killers at that point.

    I cannot imagine being able to return to work before three months.

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  15. #45
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    772
    I did return to work at 2 months. But it was a big mistake. It put recovery on hold for many months. I am a dental assistant so it was driving to and from work, sitting and standing. I would come home exhausted and need to sleep before anything else. Don't even try it isn't worth it.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

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