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Thread: Revision in my future...

  1. #1
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265

    Revision in my future...

    Hi everyone, it's been a long time. I stayed with the forum for a few years, then got busy with life, work and play. I was a bad girl- and I'm sorry! Now I'm back. Those of you may remember me as someone who had an amazingly uncomplicated, quick recovery-and was long winded and wrote super long posts! I felt like a poster child for scoliosis fusion surgery. But there have been little shadows of doubt lurking in my head for quite some time now. I have been having lots of issues with flatback syndrome and I am considering revision surgery.

    This is so disappointing. I did so well with the recuperation, and I had such high hopes for a return to some sense of normalcy. I am still a positive person, so I still look at the surgery as a plus. The surgery did completely eliminate the sciatica and that "crushed" feeling I had in my torso from my ribs sitting on my pelvis. After the first year and a half of recuperation, I didn't really have any pain in the spine, as far as nerve pain or aches. But I have had a loud audible squeaking, creaking sound from the beginning that the doctor dismissed and told me it really wasn't possible. At one of my early follow-up appointments, I mentioned that I couldn't walk upright, and that the strain was putting immense pressure on my upper back. I have almost continual spasms trying to support my forward pitch. They get knotted up so tight sometimes that I can hardly move. It is almost worse than the sciatica was, prior to surgery. All she told me was that I would have to crouch and walk with my knees bent from now on. I was very disappointed at her lack of wanting to acknowledge there was something going on, and maybe offering some suggestions of PT or maybe even the possibility of a revision. What about my knees for the rest of my life? I can't walk in the squat position for the next 30-40 years without some sort of long term damage.

    The spasms have gotten so bad lately that I can't walk more than a few yards without my back cramping up. I've gotten creative when we go somewhere by wearing a backpack loaded down with weight to help counterbalance my forward pitch, and I use trekking poles to lean on and help take off some of the pressure. You should see the dirty looks my hubby gets when people think he is letting his obviously challenged wife carry the backpack! It does help some, but I've gotten to where I don't walk anywhere unless I have to. And I used to be so active! I hesitate to go to any concerts or events if it involves a long walk. And I miss my previous life. I was more active prior to surgery than I am now- even with the sciatica. I've gained 25 pounds, which I've never been able to do in my life, even when I tried to! I've turned into the couch potato (or computer chair potato!) that I've never wanted to be.

    Lately I've also been experiencing shoulder pain and numbness and tingling down my right arm. I wondered if it is posture related and not from the actual fusion. I finally decided to try one more time and went to see the PA, since she seemed more concerned than the doctor does. She finally heard the squeaking, as it has gotten quite loud. You can hear me squeak across a room. She looked up at me with the funniest look on her face. She said "Well, that changes my opinion on things!" She ordered a bone scan, which she said showed non-fusion and loose hardware in the lumbar region. All they offered was an injection into the area of a loose screw to help with pain. Recently, my mom has been diagnosed with arachnoiditis. This is a debilitating condition, and the doctor told her there is some evidence of the injections causing damage to the lining of the nerve bundles- so I passed, and went home and made an appt. with Dr. Hart at OHSU. ( For more info, go to http://www.spineuniverse.com/conditi.../arachnoiditis )

    I saw Dr. Hart for the first time on Tuesday, and I feel pretty comfortable with him. I've put off going to him for the last two years, due to fear of not liking him. And to be honest- maybe a little bit of hesitance of going through surgery again! Someone I met had surgery with him a couple years ago, and had some negative things to say about him and OHSU. She felt that he was very arrogant, rude and dismissive, and that he did not listen to her concerns. Fortunately, my experience was very different. He was very caring and compassionate, and he took time to answer all my questions. I left feeling much better about him than I thought I would. I'm really nervous about going through this all over again, and I'm hoping she is just one of the small percentages of folks who have unsuccessful surgeries and bad hospital experiences. Everyone is different and has their own reality. And I know that most university hospitals are really busy and overworked so care can be a little lacking. I was spoiled with excellent care at St Charles in Bend for my first surgery. Leahdragonfly told me that OHSU has a new spine wing and she had much better care for her revision surgery. And she really likes and trusts Dr. Hart. Great news!

    Anyway, it did make me a little scared to make an appt with Dr Hart or to be involved with OHSU. But the only way I can afford to do another surgery is to go somewhere that is in-network with my insurance, and he is the most obvious choice in Oregon. Most of the other places I would consider are out-of-network and out of state, and my 40% coinsurance would be almost as much as my house loan! My first surgery was almost $250,000....40% would be $100,000. Wow. I don't have quite that much stashed in my mattress! My max out of pocket is $10,000, and I donít even have that. I'm not sure about what the out-of-network max I would have to pay. I would love to be able to go to SF or Twin Cities, but just canít afford to do so. It is so sad that our lives are put into hands of not necessarily the best surgeon, but the ones our insurance covers.


    I saw Dr. Hart on Tuesday, and they took more Xrays. Both the doctor I talked to first (he was from Japan-I didn't quite catch his name) and Dr Hart mentioned broken rods and flatback syndrome. I will get a CT scan next, then go from there. The good news is that he thinks the upper part of the fusion is in good shape, and he thinks he can go in with just one surgery for the A/P revision on the lumbar area only. I thought we would have to start over with a complete revision with the 2 separate surgeries. So I'm crossing my fingers... Dr. Hart said the shoulder pain and the arm numbness and tingling could very well be posture related, and he wants to wait and see if it disappears after the surgery. He wants to tackle just one thing at a time. We will know more after the CT scan.

    Unfortunately (or fortunately, however you choose to look at it!) I think we are going to put it off until next spring. Our daughter is going to study abroad in Spain this fall for her last term of college and she really wants us to come over for Christmas. I'm afraid I won't be healed enough for such a long flight if we do it now. Surgeries are being scheduled for at least 2 months out. And there is always that chance of having complications or even something going wrong and not ever being able to travel far distances again. It is a small chance, but still a reality I have to consider. So I think Spain is in the future, just in case. I won't be able to explore as much as I would like to, but you gotta grab life while you can!

    So that is where I am at. It is nerve wracking to consider going through it all again. But if it improves my posture and ability to function, it will be well worth it. I have too many good years left in me and things I want to do! If I were quite a bit older, I would consider just leaving it alone, but not at my age. We have several travel destinations planned for the future that I would really like to be able to enjoy and walk around and see the sights. I still want to hike, ski and mountain bike!

    MY RESPONSIBILITY IN THIS IS TO PASS ON MY LESSONS LEARNED SO THAT OTHERS MAY LEARN FROM IT, TOO. So here I am- back on the forum! The lesson in all of this is to go to a spine surgeon that only does these types of surgeries- and does a lot of them. My doctor trained at Twin Cities Spine Center, so I thought that was a great qualification. There was a write up on her in our newspaper about her non-profit organization that does free surgeries for low income children. She also had referrals from OHSU in the past, which I thought was another great reference. But she just doesnít do enough of these surgeries to be experienced in long, severe scoliosis fusions. She is a wonderful person, and had only the best intentions for me. But donít let these things sway your decision. It is not about personality or intent. Even if you think a surgeon is arrogant, or you donít like his bedside manner, experience and success are more important than these things. Find an experienced spine surgeon so that you donít have to go through another surgery like I will. There will be a lot more money out of my pocket and a lot more pain to go through. And Flatback Syndrome is avoidable in this day and age with an experienced surgeon. If I had some lordosis put in my spine in the original surgery, I would be in amazing shape and climbing mountains right now!

    Thanks so much, everyone, for being my shoulder to cry on. I appreciate the opportunity to vent! No one understands like someone who lives with scoliosis and has been through the surgeries and all the stuff that goes along with it. My husband is one of the most supportive, caring and understanding people I've ever known, but he still doesn't truly understand my frustrations and what it is like to live with it every single day. You guys do.

    I will keep everyone posted.
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  2. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Welcome back


    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Jenee'--
    I completely remember you & how well you did. I'm so sorry you are now having such difficulty. Your doctor's solution to walk "crouched" is just silly. That makes no sense at all. I hope Dr. Hart can get things fixed for you. Good luck! 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.

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    I cant believe it....When I saw you, you were doing great Jenee, it looked as if you were out of the woods....

    You have been hanging for 2 years now with broken hardware? wow!

    I sent you an e-mail, try to hang in there...

    Ed
    49 yr old male, now 58, the new 53...
    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

  5. #5
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    Jenee,

    I remember reading your posts even though I joined the forum after you left. You were doing so well and were so supportive of others. So sorry to hear about what's going on...
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Dear Jenee,

    Like the others I am so surprised and sorry to hear of your flatback and pain now. You made all of us a little jealous with your easy recovery (just kidding but you know what I mean)! I am really shocked that your former surgeon has been so dismissive, and her response to your situation is just astounding. I remember how much you liked her, so this must really be an emotional blow for her to be completely dismissive now. But, you have a great attitude and are making the right decision by moving on to see what can be done to improve your quality of life.

    I have posted about Dr Hart in the past, and what good experiences I have had with him. He is very compassionate and caring, and an excellent surgeon. He was ranked highly a few years ago in the "Top 25" orthopedic spine surgeons in America, nominated by his peers. He does lots of complex revision surgeries. I wouldn't hesitate to recommend him to anyone who needs complex scoliosis surgery. Yes, his office is very busy, and you will probably wait an hour or more to see him, but if you bring your list of questions he will make sure to answer them all. He spent a long time with my husband and me before both of my surgeries going over everything and answering all of our questions. His office is also very responsive to getting needed prescriptions and FMLA/employer paperwork completed. He has a great PA, Kara Berent, who works with him closely on the pre-and post-op care, and I really like her also. I had no problem getting adequate prescriptions for pain control.

    I have a friend, another nurse, who had Harrington rods put in her lumbar at age 10, 40 years ago. Over time her thoracic progressed and degenerated considerably, until it was over 90 degrees several years ago. She had a big revision surgery with Dr Hart about 3-3.5 years ago, and has done incredibly well also. I am sure she would be happy to share her experiences with Dr Hart if you are interested in talking with her.

    My revision for broken rods was also all lumbar, posterior with XLIF's done from the side at two levels for pseudoarthroses. My thoracic fusion was fine, so that was all left undisturbed. The existing rods were cut around L1 and removed; new hardware and rods were put in the lumbar with connectors to the thoracic. It was still a long, complex surgery (about 8 hours), but it was an easier recovery (aside from suffering a paralytic ileus) and less painful. I had great nursing care in the new ortho/spine wing, and very good pain control.

    I consider myself the poster child for successful broken rod/revision surgery. I am almost 2.5 years out and doing great. I am active, I work a demanding job full-time, and I swim regularly. My back is essentially pain free. I work with massage therapy for some tight muscles, but any back pain I have is muscular in nature.

    Good luck with the CT scan. Do you have a return appointment scheduled with Dr Hart to discuss things further?

    Please feel free to e-mail me any time.
    Last edited by leahdragonfly; 07-20-2014 at 09:36 AM.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

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

  7. #7
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Good luck

    When is the CT scan scheduled?

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  8. #8
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,524
    Jenne, so glad that you are active again on the forum, but sorry about the reason that you have resurfaced. I have always been impressed with you "Can Do" attitude. Mark Katz had surgery at O HSU last week, so I will ask him when he surfaces back into the mainstream of society if he would like to answer any questions from you.

    Again, like Irina I have read all of your posts and I must say, you are one of my heroes! Do you feel special that you have "groupies"?
    Susan
    Last edited by susancook; 07-21-2014 at 01:49 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 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

  9. #9
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Jenee',
    First of all, I am SO SORRY to read your post and the problems you are having. I have thought of you so often since we used to correspond on a regular basis with our surgeries only 5 days apart. The last time I emailed you to see how you were doing, you mentioned possible flat back syndrome. I wondered at that time if your surgeon wasn't topnotch. I may be wrong, but I thought flat back was more common with the old Harrington rods or if the surgeon didn't bend the rods with enough lordosis. I know that you had an amazing recovery and had even posted pictures of climbing pyramids. You were such an inspiration to everyone on the forum and you were going to lead support groups for a hospital, if I remember correctly. This has to be devastating to you since you were doing so well. I can't imagine the doctor not acknowledging that something is abnormal with the audible squeaks that you have.
    No one wants to ever go through this surgery again, but Gayle and Babyboomer and others have some posts that are certainly encouraging. Please stay in touch and feel free to email me.
    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/

  10. #10
    Join Date
    May 2009
    Posts
    3,745
    Jenee...you are kind enough to pass on lessons you have learned
    from scoli surgery...so i would like to pass on lessons i learned
    from Lyme Disease...
    it is a HUGE red flag when any doctor tries to tell you something
    "is not possible" when you have told them it is happening to you...
    they sit there and deny your reality...to your face...
    happened to me many times...until i found a doctor who believed
    me....much time and money later...

    so the fact that the same surgeon who denied your reality also told you to live with the problem, to walk the rest of your life in such a painful and awkward position, does not surprise me...
    any doctor who denies a patient's experience is capable of all
    kinds of attitudes and practices that lack compassion...or even
    common sense!

    sorry for all you are going thru...
    please...do not put up with any doctor who tells you that something
    that has happened to YOU is "not possible"
    i wish you the best of luck for revision...because it sounds like
    it is the only answer to the pain and misery you were left with
    by an uncaring doctor

    jess...and Sparky

  11. #11
    Join Date
    Dec 2012
    Posts
    30
    Please let us know which surgeon this was so we can avoid them. It is unconscionable that a surgeon operating today would give someone flatback! I am so sorry for all your suffering. I don't care how nice of a person this surgeon was, or how much charity work they do, they need to be able to do their job. Too bad you can't sue him/her, but medical malpractice is almost impossible these days. Still, you might look into it. Anyway, I hope you will be vocal about this, so that the surgeon will learn from their mistakes (although they will never admit it) and also to prevent the surgeon from doing this to other people. Then, your suffering will at least help others. Again, I am so sorry for what you are going through.

  12. #12
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265

    CT plans

    Thanks everyone, for all the kind words and support! I missed all of you, and I'm glad to be back.

    Our plan is to schedule the CT for November and start up the all the preauth work. This way it will be done closer to surgery time. I will probably look at surgery when we get back from visiting our daughter in Spain. I'm thinking around March-April, because I want some nicer weather to recuperate in. My first surgery was in January and we had snow on the ground all winter, making it really difficult to walk outside. I have no benefits at work, and I'm not sure if I will return or not, so I plan on paying off my Visa and saving up our max out-of-pocket expenses beforehand, as I have no vacation or sick pay. My hubby wants to help out, of course, but I am stubborn and independent enough that I want to be able to do it on my own. Funny how marriages later in life are so much more independent and self-sufficient. He is so generous, and always wants to help, but I feel a little strange letting someone else take care of me. Just not my style. Doesn't this seem to be a common thread for folks with scoliosis? Stubborn? Independent? Who, us??

    I did start a support group. I have a gmail account, a webpage, a facebook page, and had business cards made up, but I didn't really get any interest or feedback. Maybe our local area is just too small. And the doc, who told me there was really a need and encouraged me to do it, has never sent me any patients. And I definitely don't think she will now, with my problems! It is still out there, but I am not actively pursuing it. I am hoping if someone really needs support, they will find me through one of these avenues. I think I am better using my time helping others here on the forum, anyway. But I have to try to stay more in touch, don't I? 50 lashes for me....... Ti-Ed, you are my hero with your dedication to the site!!!

    I've written and deleted this paragraph a couple times now. I am so torn. As far as the doctor, I really feel bad throwing someone under the bus. I've not mentioned her because I truly believe in her best intentions. But good intentions don't cut it - she should have been more up to date on the procedures and aware of the need for proper lordosis and the issues associated with it. And it is my own fault that I didn't talk about it. I should have grilled her on the lordosis issue. For everyone looking at surgery, make sure you ask about this! At least the doctor will know you are informed about it. I am still amazed this happened, especially with her training at Twin Cities. I don't want anyone else to have to go through any unnecessary surgeries, so I think it is in the best interests of others to mention her. Her name is Kathleen Moore in Bend, Oregon. Grrr... why does this make me feel bad, with what I'm dealing with now???

    Wow, not too bad. I kept this post under the mini-novel size this time! I'll keep everyone posted. Thanks again for all the warm welcome and wishes.
    Last edited by jeneemohler; 07-24-2014 at 10:40 AM.
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  13. #13
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,524
    Jenee, Your comment about needing to "grill your Doctor about lordosis" was interesting. I don't think that it is the job of patients to be experts on their surgery. I never talked to my surgeon about lordosis, nor did I even think about doing so. I also did not ask her to make sure that she used neuro-monitoring, or other details of the complex surgery. I did ask about 100 questions total to both surgeons, I think which is probably far more than I needed to ask..It is certainly my job as an informed recipient of the medical system to be informed, but I did not ask my surgeon about every detail of the surgery. Let go of any guilt or responsibility that you may have about that, it is not yours.

    It is your responsibility to do some due diligence in choosing a health care practitioner. But as patients, we frequently do not know what kind of questions that we should ask to vet a surgeon. Should we ask about their status with the infection control committee? Should we ask about sanctions from the medical society or number of impending law suits? While surgeons do give the "average" incidence of various complications based on national statistics, what I was really interested in, was what was HER incidence of various outcomes? I used to work at a large HMO and among the providers, we know who on the staff had fewer complications and better outcomes.

    It IS the responsibility of a surgeon to tell a patient if, in fact the patient still wants to choose that surgeon, that he/she has done very few surgeries as extensive as the one that a patient requires. Most surgeons that I know, if they are improving their skill level and are trying to do surgery on patients that are more complicated than they usually do, invite a more experienced surgeon to do the case with them ....or refer the patient to a large, frequently a hospital associated with a university to do their surgery.

    As patients, one key question that we can ask is, "How many surgeries have you done on people with my condition?" and "How often do you perform surgery on major spinal deformities such as mine?" "Can I meet 3 patients on whom you have done my surgery within the past 6 months?" Most surgeons that do complicated spine cases get their "numbers" under their belts at larger institutions before they move on to a smaller hospital. But at that smaller hospital, if they regularly do major spinal deformity surgery, they cannot continue at that same rate of proficiency that they once did. Additionally, the hospital staff both giving the anesthesia and monitoring the patient post-op need to be very experienced in caring for complex patients. The machinery needed to monitor complex cases is very expensive, and if a hospital cannot use that machinery at least a couple of times a week, it is too expensive to own. For some of those reasons, it would be pretty rare for someone to have major spinal surgery at a smaller hospital. Not unheard of, but pretty rare.

    As patients, we also need to hope that the surgeon is telling us the truth about his or her skill level.

    So, Jenee, you probably did the best that you could do with the information that you had when you had the previous surgery. We always are wiser when we look back and say, "Gee, I should have known, or I should have asked...or whatever". Unfortunately, very good surgeons sometimes have bad outcomes. That is a known risk level that we calculate in.

    I have rambled on far more than I had intended to....but, my point is that you did the best that you thought that you could do at the time. I hope that you find a better quality of life in the future with a revision. Your attitude will carry you, no matter what happens.

    Susan
    Last edited by susancook; 06-13-2015 at 10:02 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 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

  14. #14
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Quote Originally Posted by moonglow View Post
    Please let us know which surgeon this was so we can avoid them. It is unconscionable that a surgeon operating today would give someone flatback! I am so sorry for all your suffering. I don't care how nice of a person this surgeon was, or how much charity work they do, they need to be able to do their job. Too bad you can't sue him/her, but medical malpractice is almost impossible these days. Still, you might look into it. Anyway, I hope you will be vocal about this, so that the surgeon will learn from their mistakes (although they will never admit it) and also to prevent the surgeon from doing this to other people. Then, your suffering will at least help others. Again, I am so sorry for what you are going through.
    Unfortunately, it's far more common than you think. As it turns out, it's not just lumbar lordosis that causes the symptoms of flatback. Getting the perfect amount of balance is far more difficult than anyone knew until recently, because of the large variance in measurements like sacral slope, pelvic tilt, and pelvic incidence. I honestly don't think this is malpractice. These doctors are doing the best they can, with a very difficult patient population.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  15. #15
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    Thanks for the great insights, Susan and Linda.

    Susan, you are right. I did the best I thought I could do. In my naivety, I thought I did my homework. I was under the impression that flatback was pretty rare with the newer, improved hardware. And you are right - I am not an expert or surgeon who knows all the right questions to ask. These surgeries are a gamble, even with the best of surgeons. I think the key to "successful" surgeries is to be realistic and not expect to be a 20 year old and go out and run marathons after surgery. Sure, one can hope! But I looked at my surgery as more of a way to stop the collapsing curves than a surgery to "fix" me. I knew that wasn't going to happen. I still consider it mostly successful, as far as stopping the progression and alleviating the sciatica pain. It just happened to come with the price of creating other symptoms. You gain some, you lose some!

    Linda, you put in perfect words my feelings about these surgeries. I acknowledge that they are incredibly complex, with multiple planes and every case being entirely different. Truthfully, I am amazed that they are even able to perform these surgeries. Not many years ago, we would have been destined to just live our life with continually worsening symptoms and not a lot to do about it. I am thankful we get the results that we do. My doc has a very good reputation, both locally and statewide. I am just one of those "numbers" that ends up with a less than successful outcome. I agree- it may have been avoidable, but I don't believe it is in the realm of malpractice.

    Thanks for the input, ladies!
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

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