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Thread: Degenerative Disc 5 Years Post-op

  1. #1
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    Degenerative Disc 5 Years Post-op

    Hi everyone,

    It's been a long time since I've started a thread. I saw my spine surgeon today for my almost 5-year check-up. I was hoping this would be my last visit to him, but this is not the case. He told me I have a degenerated disc between L2 and L3 (I'm fused to L2). I guess this shouldn't surprise me, especially since I've been having pain off and on in that spot for the past few months. It's been particularly bad the past 4 days. My surgeon also told me that I'm tilting forward slightly. He said this is from me adjusting my posture to accommodate the pain I'm having. He suggested physical therapy first, then injections if the therapy didn't help, and of course surgery if the pain gets too bad.

    I'm hoping this disc problem doesn't become a big deal. I've been trying to ignore the new diagnosis from this morning, but my pain is suggesting otherwise. I'm so frustrated because I'll be starting a new job in 4 weeks and I'd hate to start out with back problems. What can I do for this pain? I'm interested in others' stories/suggestions/remedies who've had degeneration below their fusion.

    Thanks in advance,

    Shell
    Last edited by briarrose; 03-04-2013 at 08:16 PM.
    Chemist, 30

    1998- 18 degrees
    2003- 33 degrees
    2005- 37 degrees
    2006- 44 degrees
    May 2007- 47 degrees
    December 2007 - 50 degrees X-ray

    Surgery May 27, 2008
    Fused T1 to L2
    Curve corrected to 15 degrees X-ray

  2. #2
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    Feb 2012
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    NC
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    129
    this is the exact reason why I chose to be fused to the sacrum. I was told that there is a high probability of needing an additional surgery at SOME POINT if I fused to just L4 or 5. I am assuming it would be the same for L2 and L3. I was told that the weight of your spine would eventually take its toll on the lower vertebras and discs and degeneration would occur (more fast then had you not been fused at all). Some people think it is better to keep as much flexibility for as long as possible while others chose a "one and done" surgery. There really is not a good alternative or one right choice. We all make the best decisions we can. I wish you the best and pray that you will not have to endure another surgery. Maybe exercising and physical therapy will ward off any more surgeries? What about trying massage therapy as well?
    Best,
    Heidi
    Scheduled for surgery with Dr. Lenke Oct. 2012
    53*T 71*L
    Surgery 10/05/2012 T4-pelvis
    Correction: looks perfect! Will find out how perfect at future appointments

  3. #3
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    Indiana
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    Shell-- I don't have any answers for you but want you to know that I'm thinking of you and hope you can get some relief and find a solution. I'll be praying for you. Hugs.

    Heidi-- there are many of us who ended our surgeries before the sacrum in order to retain a little bit of flexibility. My surgeon had said I had an 80% chance of not needing further surgery and I thought I'd play the odds. I don't consider that a high probability, as you put it. I guess time will tell, but I'm almost at the 6 year post-op mark and all is looking well with me.
    Last edited by Susie*Bee; 03-06-2013 at 08:19 AM.
    67 and plugging along...
    2007 52į w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15į
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  4. #4
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    Mar 2008
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    New Bern, NC
    Posts
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    Hi Shell,
    I am so sorry to hear that you have a degenerating disc. I have already tried PT and cortisone shots with no luck either in my SI joints or my hip. Do you know if you have a stenosis from the degeneration? Are you taking anything for the pain?
    My degenerating disc is above my fusion at L1-L2 since i am fused from L2 to the sacrum. I will be seeing Dr. Hey in a few weeks. I have pain, but I believe my pain comes from the screws in my sacrum and pelvis so I want to discuss with him about removing them. I am also 5 years out. It really sucks. I have been very active for and old gal so I don't know if that has contributed to it. I also have a hip that has significant arthritic changes, so that will have to be dealt with sometime down the road. I can't take nsaids anymore since they were causing kidney function loss which I hope will improve as time goes by. That leaves me with either tylenol or Tramadol for pain.
    I hope you won't have to have more surgery, but I guess neither of us knows what the future holds for us.
    You will be in my thoughts and I wish you the best.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  5. #5
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    Indianapolis area
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    Sally, Will you please post what you find out about getting your pelvic anchors removed? I'm interested.

    Heidi & others, I think the high risk of degeneration comes when you end a long fusion at L5. Or so I was told. Since mine would have ended at L5, we went ahead and fused to S1. Dr. Lenke said I would almost definitely be back for more surgery within a few years if we didn't.

    Seems like Shell might have been okay stopping at L2. Sorry you're having so much pain!! Hope PT, etc. helps.

    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  6. #6
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    Apr 2012
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    Harrisburg, Pa.
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    Ddd

    This is such a sore subject for me. I talked to my surgeon three months ago before my surgery about fusing to the sacrum instead of only to L5. I am 61 years old....fused at age 13 T4-L2 and three months ago L4-L5. For some reason, he would not fuse to sacrum. Now I am sure I am looking at more surgery in the future. In addition, all my MRI reports showed my S1 being very stenotic and with nerve root compression. Can anyone give me any light on this? I feel all his reasons for not fusing to sacrum were just not justified. I just don't get it.
    1963 Fusion T4-L2 for congenital scoliosis. It was a bone graft and not instrumentation
    1989 to Present....Have had chronic pain. MRI's show severe neural foraminal stenosis L2-S1, rotational scoliosis lumbar spine over 40 degrees, compression of nerve roots L5-S1, Broad Based Herniations L4-L5, L5-S
    Surgery scheduled with Dr. Bridwell on December 11, 2012
    December 11, 2012 Had surgery with Dr. Bridwell. He fused L4-L5 with rods and screws.

  7. #7
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    Yacpatty,

    You're still unfused L2 to L3 and L3 to L4. Right? Maybe that's why he didn't go to S1. Still thought he could preserve flexibility? Also, is something different about your case because it was congenital, not adolescent idiopathic? Any structural deformities of the lower vertebrae that would have interfered with fusion? I just have to think Dr. Bridwell had his reasons. Have you asked him? I'd be curious to know his reasoning.

    Also, I know you must be frustrated, but it's still early to judge your pain outcome. I hope it continues to improve!!

    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  8. #8
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    Mar 2008
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    Quote Originally Posted by Confusedmom View Post
    Sally, Will you please post what you find out about getting your pelvic anchors removed? I'm interested.


    Evelyn
    Yes Evelyn, I will start a new threat after I hear what Dr. Hey has to say.
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  9. #9
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    Thanks so much for the responses! Iím sorry it took me so long to write back.

    Heidi Ė I know my surgeon wanted to keep me more flexible. I thought I would eventually have disc problems (maybe ~10-15 years later?), but I didnít think it would be so soon. Iíll look into PT when I start my new job. Thank you for the massage suggestion. I will look into it.


    Susie Ė Thanks for your prayers and encouragement!


    Sally Ė Iím so sorry to hear about your situation. Youíll have to let us know how your appointment with Dr. Hey goes. Did your surgeon or a pain management doctor do your cortisone shots? Did PT make the pain worse for you? Iím reluctant to start because I feel like it could logically increase the degeneration since we canít move the one portion of our spine. Iím just guessing on that. What type of exercises did you do?
    I havenít been taking anything for the pain. I had a really bad day last week. I could barely walk up the steps to my house after work. I laid down the rest of the evening and that seemed to help things. Bending and crouching seem to irritate the disc.
    I donít think I have stenosis. Can this be seen on an x-ray? Do you have stenosis from the degeneration? I have been wondering what stenosis feels like. For the past 6 months or so Iíve been getting this pain in my lower back that stops me in my tracks and takes my breath away. It only lasts about 2 seconds and then Iím fine. This happens about 2-3 times a month. Iíve been calling it ďlightning bolt pain.Ē I donít know how else to describe it.
    I really hope you can find some answers from Dr. Hey. Iím sorry you canít take NSAIDs. Is the Tramadol helping? Thanks for your response.


    Evelyn Ė It sounds like it was wise for you to be fused to sacrum. I wonder if thereís a way to prevent disc degeneration above or below fusions. Thanks!


    Yacpatty Ė I noticed youíre in Harrisburg. Weíre not too far from each other. I really hope you do not need more surgery down the road. Like Evelyn said, Iím guessing your surgeon wanted to leave you with some flexibility. I hope your recovery is going well.


    Thanks!

    Shell
    Chemist, 30

    1998- 18 degrees
    2003- 33 degrees
    2005- 37 degrees
    2006- 44 degrees
    May 2007- 47 degrees
    December 2007 - 50 degrees X-ray

    Surgery May 27, 2008
    Fused T1 to L2
    Curve corrected to 15 degrees X-ray

  10. #10
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    "Sally Ė Iím so sorry to hear about your situation. Youíll have to let us know how your appointment with Dr. Hey goes. Did your surgeon or a pain management doctor do your cortisone shots? Did PT make the pain worse for you? Iím reluctant to start because I feel like it could logically increase the degeneration since we canít move the one portion of our spine. Iím just guessing on that. What type of exercises did you do?
    I havenít been taking anything for the pain. I had a really bad day last week. I could barely walk up the steps to my house after work. I laid down the rest of the evening and that seemed to help things. Bending and crouching seem to irritate the disc.
    I donít think I have stenosis. Can this be seen on an x-ray? Do you have stenosis from the degeneration? I have been wondering what stenosis feels like. For the past 6 months or so Iíve been getting this pain in my lower back that stops me in my tracks and takes my breath away. It only lasts about 2 seconds and then Iím fine. This happens about 2-3 times a month. Iíve been calling it ďlightning bolt pain.Ē I donít know how else to describe it.
    I really hope you can find some answers from Dr. Hey. Iím sorry you canít take NSAIDs. Is the Tramadol helping? Thanks for your response."

    Hi Shell,
    I went to a PT that Dr. Hey recommended and he had me doing core strengthening exercises. It helped my core but not my pain. I went to a pain management clinic that Dr. Hey also recommended. Unfortunately that didn't help either. I probably should try water exercises, but I hate doing that. Yes, stenos comes from the degeneration and it sounds like to me that you have stenosis. I don't think stenosis shows up too well in an xray, but does show in an MRI or a CAT scan. Yes, Tramadol helps somewhat. It probably would work better if I took it on a regular basis, but I only take it when the pain gets to me. Right now, I line dance and zumba once a week each and try to walk a mile or so each week. I can't do much more because I have an arthritic hip that is giving me grief so I will probably need to have that taken care of before I can do anything more for my back at present. Cortisone didn't help the hip either. I see Dr. Hey next week. Thanks so much for your concern. I wish us both luck with finding solutions for our pain.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  11. #11
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    Jun 2005
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    39
    This is exactly why I am hesitant to undergo surgery despite my already 47 degree thoracic curve. As the years go by, it is a natural, inevitable event that we start losing our lumbar lordosis(arc) and start to get more bent over. I am seeing this happening with me as early as right now at only 31 yrs of age. It feels as if my back feels more at ease and the twisting of the ribs settles better when I round my lowerback, it is slowly becoming more structural since I feel my standing and walking posture has changed. My neck has started to crow too. Does this mean I am starting to lose lumbar disk health?

    Correct me if I am wrong or just exaggerating and would like to be clarified by anyone here in the forums, but my assumption is if you fuse your spine like brianrose did, the free lumbar disks below will begin to conflict with the fusion above as it slowly and structurally loses its lordosis which is a normal part of aging, as a result that is what is causing all his pain that is unfixable except through an extension of fusion. I'd like to know how often and common this is, and if it is something that will happen to anyone who had surgery at some point? Do the patient just live with the pain, or is an extension of fusion a "guarantee" for everyone who had at least 2 lumbar levels fused, in which case this should've been carefully presented by your surgeon in the official disclaimer prior to signing up for surgery.

  12. #12
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    Quote Originally Posted by Jinseeker View Post
    This is exactly why I am hesitant to undergo surgery despite my already 47 degree thoracic curve. As the years go by, it is a natural, inevitable event that we start losing our lumbar lordosis(arc) and start to get more bent over. I am seeing this happening with me as early as right now at only 31 yrs of age. It feels as if my back feels more at ease and the twisting of the ribs settles better when I round my lowerback, it is slowly becoming more structural since I feel my standing and walking posture has changed. My neck has started to crow too. Does this mean I am starting to lose lumbar disk health?

    Correct me if I am wrong or just exaggerating and would like to be clarified by anyone here in the forums, but my assumption is if you fuse your spine like brianrose did, the free lumbar disks below will begin to conflict with the fusion above as it slowly and structurally loses its lordosis which is a normal part of aging, as a result that is what is causing all his pain that is unfixable except through an extension of fusion. I'd like to know how often and common this is, and if it is something that will happen to anyone who had surgery at some point? Do the patient just live with the pain, or is an extension of fusion a "guarantee" for everyone who had at least 2 lumbar levels fused, in which case this should've been carefully presented by your surgeon in the official disclaimer prior to signing up for surgery.
    I don't think anyone really knows what happens to patients who have scoliosis fusions as adults. I had my original surgery about 22 years ago, in my early 40's. I became friends with several fellow patients who had surgery around the same time. Some of them have avoided additional surgery and some haven't.

    Although not based on any published research, I'm guessing that somewhere between 50-70% of people who have scoliosis surgery as an adult will go on to require additional surgery at some point. Many of those would be because of degeneration below the fusion, but not all. (Unfortunately, most scoliosis research that includes outcomes is based on 2 years of follow-up. That's what publishers want, but I think what most patients want to know is their lifetime risk. In the US, it's very difficult to keep track of patients for 20+ years.)

    If it were my choice, I would avoid surgery if I felt that was a reasonable possibility. (Some of us have far too much pain to have a reasonable quality of life without surgery.) Keeping strong core muscles is probably the most beneficial thing you can do to try to avoid surgery.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  13. #13
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    May 2008
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    reno,nevada
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    Hard to comment on the bending over or the lordosis shape changing without an x-ray......I have noticed a slight forward lean at times, but my sagittal x-rays looking from the side are in very good shape balance and plumb wise. Side view x-rays are probably more important than the coronals...they decide the trickier surgical procedures, like osteotomy.

    There is no doubt that I have had problems with my disc health.....I donít have the issues that Shelly has since Iím fused to the pelvis (not my choice) but I do have herniated or protruding discs in my non-scoliotic neck. I had my whole spine fused only to find out my neck is also compromised. I donít think weight was a main factor. My neck issues were mentioned in my hospital reports upon my scoliosis surgeries. This leads me to believe that I, or we, have ďdisc issuesĒ to varying degrees.....in my case, on many levels. The lumbar levels go 1st, then itís the neck in 2nd place.

    I wish I was 31 again so I can rock and roll. (smiley face) Yes, I had pain, and yes, scoliosis surgery was on my mind, but not all the time.....I didnít let it make me too crazy, and I learned to deal with the pain. Linda is right about keeping your core strong. Skiing throughout my life kept me in good shape, and I had more pain issues pre-surgery when I wasnít exercising. Its amazing how that works.

    I would also wait on surgery. I waited 34 years till I was 49, and my decision was based on extreme pain. My surgeon wanted to know why I waited so long, and well, I didnít give him a verbal answer, he could see in my eyes. But in my case, if I had to do it again, I would do it a few years sooner, like in my early 40ís. Again, based on pain and quality of life.

    It seems that our discs are a problem with or without surgery. Unless you are fused the whole way, and no-one wants this, there is a high probability that resulting disc pain (nerve or cord) will happen. Degeneration is part of life.....

    Scoliosis surgery is serious surgery. Patients need to have all their questions answered even if they donít know the questions. They need to learn the questions. Surgeons donít volunteer many questions, because of the extent of the material. If you had millions of dollars to fly into space, would you fork over the money without knowing the risks of space travel?

    Its amazing what we know, and what we donít know, but 10,000 pc puzzles do get solved in time.

    I hope Shelly is doing ok now....discs do heal themselves to some extent. We Do actually heal! ...........what a concept! Keep this in your belief system, it works.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  14. #14
    Join Date
    Jun 2005
    Posts
    39
    Thanks for the responses.
    I understand it is just an educated estimate but that probability rate of 50-70% is just astounding, especially since there is no 20+ year follow up, the need for an extension of fusion is just within 2 decades and shorter after the original operation was done.
    Keep us posted updated Linda with the report/study you are doing on fusion levels and quality of life, Im curious to know that
    the most of the other 50% you are referring to that didn't need an extension later on in life, were patients who were only originally fused above L1. I for one would never agree to have surgery
    if I was going to need an extension in the future and end up with a fusion to the sacrum, i'd probably rather live with my pain if that were the case.

  15. #15
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    Jul 2010
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    Long Island, New York
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    Quote Originally Posted by Jinseeker View Post
    if I was going to need an extension in the future and end up with a fusion to the sacrum, i'd probably rather live with my pain if that were the case.
    I'm three months post op T3-S1, and glad I went all the way down...and I didn't undergo this surgery just because of pain, it was to halt a progression that would eventually kill me. I knew what I was getting into thanks to this forum, but honestly I really have had it much easier then some. I'm not bending lifting or twisting of course, but I do not feel limited especially in self-care and independent tasks. Don't be quick to assume that fusion all the way to the bottom is going to change a life drastically especially at your young age. Also, I'm glad I waited till I was 53 years old and really needed it, I have remained healthy and fit all these years and my core muscles have always been strong but sometimes you just cannot prevent scoliosis progression. Thanks to this forum I know that I am only going to get better and actually regain some flexibility and even if I don't I would be happy to be just the way I am for the rest of my life, even though I still have postsurgical pain and stiffness I know that my spine is stable. I too have a couple bulging cervical discs but hopefully with physical therapy that is starting soon I can achieve some relief from that discomfort which isn't even that bad yet. Every single scoliosis patient is different and obviously I wish I didn't have had to have the surgery at all...some scoliosis patients will never have to have it, but when your spine curves progressively in the course of a few years it's really the only option. My advice is do your research find the best doctor and then another opinion before you make this major life changing decision and wait as long as you can comfortably wait stay in shape and stay healthy eat right exercise yada yada yada.
    Cathy
    2 sons, one Syracuse University graduate (working for the Mets now), one college sophomore, one great husband and two fabulous cats
    54 years old March 5
    AIS 45 degrees Thoracic at 14, Milwaukee brace for one year in 1977 then in 2012 I found Dr. Baron Lonner ❤️
    Surgery April 8 2015
    Presurgical curves T77 L66
    Post surgical T27 L22
    Fused T3-S1 pelvic fixation, osteotomies and all the other stuff but you know what? It's done...

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