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Thread: I need some confidence....anyone have any to give me? Making the BIG decision!

  1. #1
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    I need some confidence....anyone have any to give me? Making the BIG decision!

    So, here I am in life, age 66 with a one year old diagnosis of "adult onset degenerative scoliosis", cruising along basically in denial and then having looked in the mirror for the past 6 months, have noticed a marked leaning to the right [not politically....physically!]. My right shoulder is much lower than my left, I look pretty pitiful. Then I get severe R butt pain and frontal thigh pain. [I was the one waiting in line lying on the floor moaning for 45 minutes while waiting for an international airplane to load]. I thought that this pain was "solved" by an L4 corticosteroid 2 months ago, but the steroids wore off. I cannot stand for more than 5-10 minutes without sitting or lying down. Pain drugs don't help. So, now I will have my 3rd steroid inj in 5 months [rule, as I understand it is one can only have 3 inj/year...yikes!] tomorrow. Then there's the sudden weakness on going from sitting to standing when my legs give way beneath me.

    My annual visit to the surgeon shows A BIG CHANGE in sagittal and coronal balance. The surgeon draws a computerline on my leaning stature and then shows me the zero line. They aren't even close. the Cobb angles didn't change much, although I have not received the radiologist's interpretation.

    The surgeon said, "The decision to have surgery is yours, but I'd be surprised if you didn't want to have the surgery."

    So now, intellectually, I know that I need to take the BIG STEP and have the fusion surgery....like soon. But, my heart isn't sure. Why am I unsure????? I really don't know. Things are not going to get better, certainly there is a big trend for the downhill slope. Then I read Wolport's book that says, "coupled with the surgical risks of anesthesia and the difficult recovery process, surgery for older individuals is seldom a good prospect." Bummer....just when I thought that I had made up my mind, I am now wondering if having surgery such a good idea. Damn the Wolport book! The alternative of not having surgery is not attractive either.

    Can anyone loan me some confidence?

    Susan

    PS: I have set up a second opinion.....
    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

  2. #2
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    Hi Susan, I'm surprised Wolpert's book says that, but perhaps Wolpert doesn't consider a 66 year old, an "older individual." Perhaps he means people in their 80s - who knows. There are many on this forum in their late 50s and late 60s who've had the surgery very successfully.

    I cringed when I read that you can't stand for long. Neither could I and I haven't forgotten how that pain just takes over. I think that would be enough for me to go running for the surgery.

    However, you have to be very sure about this surgery. Otherwise you might end up without pain but bitterly disappointed because you've lost flexibility. Or bitterly disappointed because you've still got a bit of a lean when standing...that sort of thing. Because there are cons as well as pros for this surgery, so you have to know in your mind that you absolutely must have it and for all the important reasons. To arrest progression, to reduce/remove pain.

    You're doing all the right things, investigating every avenue, asking questions, reading, and getting second opinions. I wish you well in your decision.
    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

  3. #3
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    Glad I had this surgery

    I was your age when I had this surgery July 23 this past summer. I turned 67 on Nov. 2. I'm glad I had the surgery. The recovery was not nearly as bad as I had thought it would be. I rode on a 7 hour car trip yesterday and have been on my feet all day today playing with my 7 yr. old granddaughter. It bothered me to stand before my surgery and a two hour car ride before it was too much. The muscles on the left side of my back still hurt some but I have taken nothing but Tylenol for pain since 6 weeks after surgery. I am now pain free in my spine and had had significant lumbar pain and sciatic pain before surgery. My lumbar curve was 68 degrees and I had significant stenosis at the s1 level . I was fused from t4 to sacrum by Dr. Lenke. Have this surgery and stop worrying about it. I saw several surgeons for 3 years before my surgery and lost 5 1/2 inches in height during that time. I was leaning toward the right and forward and everyone now is amazed at how straight I now look. I gained 2 inches in height and my lumbar curve was reduced to about 23 degrees. Find a good surgeon, have the surgery and don't look back. ( by the way, I had also had 2 radio frequency catheter ablations on my heart for a-v node re-entry about 9 years ago and still had a very uneventful 9 hour spine surgery).
    Hope you soon get some peace about all of this.
    Jane

  4. #4
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    Quote Originally Posted by jane d View Post
    I was your age when I had this surgery July 23 this past summer. I turned 67 on Nov. 2. I'm glad I had the surgery. The recovery was not nearly as bad as I had thought it would be. I rode on a 7 hour car trip yesterday and have been on my feet all day today playing with my 7 yr. old granddaughter. It bothered me to stand before my surgery and a two hour car ride before it was too much. The muscles on the left side of my back still hurt some but I have taken nothing but Tylenol for pain since 6 weeks after surgery. I am now pain free in my spine and had had significant lumbar pain and sciatic pain before surgery. My lumbar curve was 68 degrees and I had significant stenosis at the s1 level . I was fused from t4 to sacrum by Dr. Lenke. Have this surgery and stop worrying about it. I saw several surgeons for 3 years before my surgery and lost 5 1/2 inches in height during that time. I was leaning toward the right and forward and everyone now is amazed at how straight I now look. I gained 2 inches in height and my lumbar curve was reduced to about 23 degrees. Find a good surgeon, have the surgery and don't look back. ( by the way, I had also had 2 radio frequency catheter ablations on my heart for a-v node re-entry about 9 years ago and still had a very uneventful 9 hour spine surgery).
    Hope you soon get some peace about all of this.
    Jane
    Thanks Jane. I don't know why I am hesitating. I KNOW that surgery is the best thing for me. How do I figure out what my concern is? I have concluded that I won't die in surgery, so that's not it. I know that I will have some complication....but I figure that my surgeon will figure out what to do about that. I have decided that when I do decide to have the surgery, I will place my faith/trust in the surgeon and not look back. How did you make that transition from questioning to just do it? Where do I find peace? The surgery is not reversible. When my back hurts alot, like right now, surgery seems like a good choice. But when it doesn't hurt, then I think maybe I could get by without the surgery [denial?]. My surgeon's comment about not understanding why someone in my situation wouldn't want the surgery was interesting [we were staring at the awful xray that I had just taken]. There is something missing in my confidence. Maybe having the second opinion will shed some light on my lack of confidence. It is set up on January 7th. I have read and reread all of the blogs about others questioning of, should they have the surgery. I have even given thoughtful advice! Easier to advise others than yourself. Maybe I'm overthinking this whole thing. I pretty much made up my mind to have the surgery as I laid on the floor at the airport because I couldn't stand in line...then I had a good [relatively painfree] morning or I read the forum about all of the people in chronic pain....and doubt creeps in. I am a very independent person and am known for not taking prisoners. I am rarely wishy washy. I am a risk taker. I am a medical professional, so the surgery itself is fascinating to me. So what's my problem? What is the source of my uncertainty?
    Everyone around me is supportive. Maybe I need counseling. Actually, I need more dilaudid as my back is killing me right now!
    Thanks for sharing your support. 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 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

  5. #5
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    i do not understand...why was the X ray so awful....????

    perhaps the difficulty of the decision is just how irreversible the fusion is, as you
    mentioned.
    since you still have days when you are not in pain, that might make it easier
    to think that you do not need the surgery...


    jess
    Last edited by jrnyc; 12-20-2012 at 11:59 AM.

  6. #6
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    Awful xray

    On the xray I was grossly tilting to the right with the top part of me leaning forward and the lumbar area leaning sort of backwrds. The balance line [for both coronal and saggital balance] for zero imbalance was no where near my balance line. I could see radiographically inside how terrible I really look. I was really bummed.
    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 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

  7. #7
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    Quote Originally Posted by JenniferG View Post
    Hi Susan, I'm surprised Wolpert's book says that, but perhaps Wolpert doesn't consider a 66 year old, an "older individual." Perhaps he means people in their 80s - who knows. There are many on this forum in their late 50s and late 60s who've had the surgery very successfully.

    I cringed when I read that you can't stand for long. Neither could I and I haven't forgotten how that pain just takes over. I think that would be enough for me to go running for the surgery.

    However, you have to be very sure about this surgery. Otherwise you might end up without pain but bitterly disappointed because you've lost flexibility. Or bitterly disappointed because you've still got a bit of a lean when standing...that sort of thing. Because there are cons as well as pros for this surgery, so you have to know in your mind that you absolutely must have it and for all the important reasons. To arrest progression, to reduce/remove pain.

    You're doing all the right things, investigating every avenue, asking questions, reading, and getting second opinions. I wish you well in your decision.
    You are right, the pain that I have right now is pretty convincing [and that's after 2 Dilaudid]. After my corticosteroids tomorrow, I will probably [if it goes like the last 2 injections] be in very minimal pain. That is good for me [and my drug use], but I know that I cannot have another inj for 8 more months. The pain is becoming the answer for me right now. I am also looking forward to another opinion. I guess I am saying that I hope that I agree with the second opinion. Dr. Hart's comment about why wouldn't I want the surgery when he saw my xray was a wakeup moment. I am weary of worrying about all of this. I ruminate and second guess. This is not my usual style. I am exhausted right now and need to go to bed. The Dilaudid that I took didn't help....bummer.
    Thanks for caring.
    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 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

  8. #8
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    I re-read what I wrote and realized how unhelpful it was. But it's very hard to help someone make up their minds because it's a process. You ask about how you arrive at that point where you have the confidence to do it. For me it was very hard. I became depressed and anxiety took over my life and I wasn't thinking properly. I was helped by my GP with a mild anti-anxiety medication and that made a huge difference, for starters, I began to sleep again. From then on I thought about it in a practical manner. I was fortunate in that I was able to get fit. As my fitness grew, a feeling of indestructibility grew and I knew I could do "this thing" as I referred to surgery. By the time my date came round I felt unafraid, just that I wanted to get this thing over with, so I didn't have to think about it any more. It was like, "Enough already!" I was ready.

    I guess we all reach that stage (if we're lucky) and it's probably a different process for us all.
    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
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    Susan,
    I can just say "ditto" to everything Jane and Jennifer said. I second guessed myself a zillion times during my 13 month wait for surgery. In spite of my fear and my doubts, epecially since I had minimal pain, I was also excited about getting a straight back. I tried to believe that it was in my best interest for later years to stop progression of the curve. I thought I would be giving up a year of my life for the surgery and recovery and it was more like a month. I was off all pain meds except Tylenol by 5 weeks. My recovery was so much less stressful than my pre-op months. I think you will feel better after you get a second opinion. I was convinced that Dr. Lenke was the surgeon for me. Having faith in your surgeon is half of the battle.
    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
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    Susan,

    I believe you were the one that told me the first step was to find a doctor that you trust and to let go of all the "what if's". For those of us in the medical field, transitioning from the care giver to the patient is a tough step. But that is what you need to do, put aside everything and become a patient.

    My surgeon made a point of building a friendship/trust relationship before we even discussed a date. You will know the doctor that is right for you, you will feel it with every part that it was a relationship meant to be. I am going to say to you know, forget all the if's and dig deep for that courage. I found it in prayer and support from many I met on this site.

    Till then, take care of yourself. A jacuzzi is not a bad idea, it has reduced my post surgical pain tremendously and wish I had one prior to surgery.

    Tamena

  11. #11
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    I want to second what Tamena said - you will know in your heart who is the right doctor for you. Count days down to your second opinion appointment and see what happens. May be you should give yourself a break in decision making process until then. And it won't be a bad idea just to stop reading scary stories :-) I think you've learned about all the risks already - take a vacation from reading too much and think about holidays.

    Best of luck and I will be thinking of you on January 7.

  12. #12
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    When you do make your decision, write down all the reasons you decided the way you did. I have to be constantly reminding myself of the reasons I decided to do it. Big progression. Many years ahead of me. Great surgeon. Family who could help me get through. Insurance worked. A few months of pain when standing gave me a glimpse of my future. Osteopenia meant I couldn't put it off forever. A grandmother disabled by back pain. Now, my recovery is taking a long time (9 months and still have pain), but when I think rationally about these things I know I made a sound decision, and I can live with it. My second guessing always comes because I wasn't in much if any pain at the time of my surgery and I wonder if I should have waited longer. I would think at age 66 with significant pain, it would be a reasonably straightforward decision. (But believe me I GET the second-guessing!!!) Have you talked to Linda Racine? I believe her practice treats a lot of older patients, so she might have some feedback on Wolpert's comment.

    Best of luck,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  13. #13
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    I think that I am losing it....I thought that I saw an email from Linda earlier when I was OHSU saying the adults with idiopathic scoliosis don't have changes in their balance [or imbalance]...now it is not there. Maybe I was reading someone else's blog.....

    First of all, thank you to Tamena, Karen, Irina, Jennifer, and Evelyn...did I miss anyone? Just read your supportive comments and recommendations and I started to cry. The good kind of cry that comes from knowing the people just like me understand. I had a rough day. First I got out of bed and went to the toilet quite early. I always sort of lean forward when I am sitting on the commode. Well, I tried to stand up and my legs were weak and felt like jelly, so I crawled [hands and kneees] back to bed and did some stretching [and praying]. Something must have gotten back into the place that it belonged in my back, because when I tried to stand up again, I was OK. I sent a message about the incident to Dr. Hart. When I saw him on Tuesday, he was mildly concerned [my read] and ordered a MRI [not today, just routine]. The earliest that they had an appointment was in 9 days, I explained to the tech the problem, but he said that he couldn't do it any faster if it was "routine". Then I went to OHSU for an R lumbar corticosteroid inj. at 10 AM. I was in such pain that I brought my heating pad to the waiting room. The inj went well [I'm giving up on Versed, I don't seem to get any sedation from it]. Then I tried to get dressed and my right thigh [quads] wouldn't work. Like I couldn't lift my leg except manually [my hands lifting it up]to walk. Dr. Chen helped me get dressed. They gave me a wheelchair to the car after Dr. Chen and the "fellow" said that they thought many it was from the lidocaine, but don't worry. Then Dr. Hart's office called and said that he had ordered an emergency MRI at 7 PM based on my getting out of bed experience and the other times that I told him about at the appointment. So, since I live an hour away, we drove to my brother's house which is close to OHSU for takeout lunch. I couldn't get out of the car! I tried to walk forward and while I could put some weight on the leg, I couldn't lift it with the quad muscles, just by lifting it with my hands/arms. Then I figured out that I could walk backwards, sort of shuffling and could sort of drag my R leg along. I got into my brother's house and up the stairs all backward, got on his couch with my heating pad [took the Lyrica that Dr. Chen had just given me] and I rested for a couple of hours. Amazingly, my R leg improved and moved OK although it felt weak. I was really scared! Now it is late and the lidocaine/steroid inj seems to already provide some relief! I am thrilled! My back is buzzing and hurts some, but no where near last night. Such a day! I am already planning to wake up with minimal R back and anterior thigh pain. Keep me in you thoughts!

    I will copy all of your sage advice, print it out and read it daily with some advice that Ed gave me. I have so much anticipation about my second opinion...mostly good, but so much rides on it. Thanks Irina for sharing so much with me at lunch on Saturday near San Francisco. Wait until all of you see her postop pictures in her slinky new dress! She is already a very beautiful woman and looks like a model....but after her surgery....well, she will look even more phenomenal!

    To bed soon and thoughts of a better tomorrow. Did anyone see the movie "Flowers for Algernon"? I feel like Algernon, who has been given a reprieve from his disability [in my case with all of my steroids and ablations] only to find that with time he deteriorates back to a disabled mouse.

    Thanks for sharing some "confidence". Susan

    PS: I have ordered a disc of my xray [Ed, thanks for your suggestion!] I will post it [if I can figure that out] and everyone can give their opinion about my balance. I might even take a picture of me in an old two piece suit....maybe.
    Last edited by susancook; 12-08-2014 at 11:57 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

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

  14. #14
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    Not losing it...but don't understand where it goes??????

    12-19-2012, 11:19 PM#12
    LindaRacine
    Moderator

    Join Date: Sep 2003Location: Northern CaliforniaPosts: 5,857

    Most people with idiopathic scoliosis do not have coronal imbalance. It's relatively unusual, especially in kids, for someone with idiopathic scoliosis to not be balanced.


    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
    http://www.scoliosislinks.com/AboutMe.htm



    I just got back into my thread and found Linda's comment as #12, then I copied it and went back in and #12 is Confusedmom....my computer is doing strange things!

    I started the thread about balance and I'm working to undertstand it by reading medical articles [my field os OB GYN, so it is tough trying to understand orthopedics that I learned in 1968!]

    Susan...OK, I will take pictures of me in my swim suit for your comments...just don't put it on my Facebook page!
    Last edited by susancook; 12-21-2012 at 03:33 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

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

  15. #15
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    My Recent Xray Posted! Coronal balance not good ;+[

    Report of my xray from OHSU, just found it in my Inbox:

    IMPRESSION:

    Unchanged S-shaped scoliosis of the thoracic and lumbar spine.
    Increased positive coronal imbalance when compared to the previous
    exam. [Now 11.2 cm, last year: 4.1cm]

    Exaggerated lower thoracic kyphosis, unchanged. Severe multilevel
    lower thoracic and lumbar spine degenerative disk disease.

    Attending Radiologists: Craig Brooksby,
    Author: Craig Brooksby,

    So now I will do a medline search on coronal imbalance!
    Good thing That I am retired and have time to do my homework
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

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