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Thread: Can I cry now?

  1. #1
    Join Date
    Feb 2012

    Thumbs down Can I cry now?

    I'm frustrated. I just need to vent and know there are others here that know what I am going through.

    In 2004 I had my first surgery fusing my spine form somewhere around T-3ish to my L-4. Surgery went great, I was a million times better, running, biking, exercising regularly- everything was amazing. 2010 comes and I have a pain I can only describe as Earth shattering. After a year trying to figure out what's wrong with me and 15 doctors refusing to see me due to past surgeries, I found a doctor who would see me. He tells me I fractured my L-5 so bad that every doctor that looked at my x-ray thought my L-5 was actually my L-4 AND L-5. I went in for surgery in 2011, he fused the area L-5 to S-1 and made things better, I thought. The pain continued, it never stopped. I continued to complain of pain to him so I saw a pain management specialist and got shot after shot in my spine that did NOTHING. 2012 comes and I have surgery again to fuse my pelvis because Dr thinks that's the problem. Great... still I have a ridiculous amount of pain and now I am leaning forward and can't understand why I can't stand straight. It hurts to walk more than 2 minutes, I can't stand long enough to walk my dog, I can't go for nice walks on the beach with my boyfriend, I just hurt and hurt. Last week I go in for my annual and I find out my surgeon is out until September so his assistant sees me. He gets the x-ray and bam, why do I still hurt? I broke a rod, my fusion didn't complete AND I have "flat back syndrome". WHAT THE HECK IS FLAT BACK SYNDROME? Doc says flat back syndrome is caused by Harrington rods puling my spine into a straight line which is causing my head to lean forward. Now I have excruciating pain that I've been masking with every pain medicine known to man kind, a broken rod and flat back syndrome. Doctor says it's okay, we can do surgery. Again I don't want it! I have to have it. I go in tomorrow for major extensive reconstruction tomorrow morning and I'm scared. I'm tired. I can't handle the pain. I need help. I'm 25 years old. Why am I so unfortunate to go through all of this? Everyone says "oh it's so sad you're so young I'm so sorry" and the pity parties make me sick. I don't want people to know how I feel or feel bad for me that I feel this way, I just don't want to feel this anymore. This will be #4 major surgery, #6 going back into my back. 2 of the surgeries caused issues- 1 bad infection and 1 the screw came out.

    Someone, please tell me this will be the last time. I'm a teacher now. Every summer since I got my degree I have spent in a hospital bed. I want to start a family. I want to get married. I want to continue my degree. I can't with all of these continuous surgeries. I'm not sure how much more I can handle.

  2. #2
    Join Date
    Jul 2012
    Warsaw, MO
    Wow! Shana, take a deep breath! Crying, I understand. In fact I think all of us that have had scoliosis since youth (heck, have it at all) have at one point or another asked why me and felt that things were unfair. But once you exhale and take another breath it is time to become wonder woman again and know that you are not alone. There are many on here that are praying and quietly rooting for you now. And what makes it better is we have all been in similar situations.

    There is no guarantee that this will be the last, but try to remain positive. Positive thoughts are the most important tool in the battle of bags that we carry on our shoulders. It makes you invincible to all the negative that will be thrown your direction with recovery.

    I will be praying! Keep us posted on how you are doing.

    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  3. #3
    Join Date
    Jul 2011
    So sorry to hear about your situation. Dr. Lenke is one of the best scoli surgeon's in the world. He specializes in "the worst of the worst," and most recently did a magnificent correction on babyboomer16. She had several botched surgeries by non-scoli specialized surgeon's and Dr. Lenke worked a miracle for her. Perhaps you could consult with him before having another surgery? Are your surgeon's scoli specialists?

    Last edited by Doreen1; 06-19-2013 at 02:20 PM.
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

  4. #4
    Join Date
    Jun 2011
    Southern CA
    I just want you to know that I will be praying for you

    Please let us know how things are going for you


    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  5. #5
    Join Date
    Jan 2009
    Ames, Iowa
    You've been through the mill to say the least. I'm very sorry this has happened. Definitely--have a great cry--sure we've all had a few and then do what Tamena said. If your surgery is actually tomorrow, you've got to switch gears to a positive attitude. Easier said than done but it can help with the outcome. May have to fake it at first! Where are you located? Has the same doctor done all of the surgeries? Prayers and positive thoughts coming your way. Keep us updated. 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.

  6. #6
    Join Date
    Oct 2008
    Sunshine Coast, Queensland, Australia
    I would cry too, if it was me. I don't know why some people have such a hard time with their scoliosis. It concerns me that perhaps one or more of your surgeons weren't up to the job but the most recent diagnosis rings true to me and I hope this is your final surgery. Let us know how you go and we'll look forward to following you as you rejoin life and start doing the things a 25 year old should be able to do. Wishing you the very best of luck!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  7. #7
    Join Date
    May 2010
    Indianapolis area

    Is your surgeon a scoliosis revision specialist? If not, is there any way you can postpone and see someone who is? There are others on the forum who have had flat back and all the problems you describe and were able to get it corrected with a revision specialist. You can do this, and you will get your life back! But you do need a top-notch specialist. Travel if necessary. I know you do not want to cancel on your surgeon, but it's time to take care of YOU!

    Best wishes,
    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.

  8. #8
    Join Date
    Jan 2012
    Yacolt, WA
    Shana- hi! I could really feel your frustration and you have good reason to feel that you want to give up. There are no guarantees, but I do hope that this surgery is your last and that you will be able to get on with your life. There are so many people on the blog that are on your "team". You a not alone. You can do this because it sounds like you have a lot of dreams and hopes for the future.

    I am sending you positive thoughts and wishes for a successful recovery! You deserve it! Where are you located?

    Take care. You are in my thoughts and prayers.
    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

  9. #9
    Join Date
    Dec 2006

    Thumbs up Try Vit D. Sounds weird but it took my pain away.

    I can kind of relate. I had the Harrington rod put in and was doing great until it broke. Then CD rid put in. Then screws started to come out and ribs started turning and only have 50 percent of breathing now. I was in major pain for years and saw many doctors. 2 wanted to do surgery. My main back doctor said it'd be a dangerous surgery. Too dangerous. Then I saw a doctor who tested my vitamin levels. I was low on vit D. He prescribed Vit D pills and I haven't been in pain for years. The whole time everyone assumed it was my surgeries causing the pain. Your back sounds more serious but maybe try Vit D and see? It might make the pain less. My pain went away within 2 days of the doctor prescribed pills. Regular over the counter Vit D didn't help. I'm wishing you the best!

  10. #10
    Join Date
    Jan 2013

    Of course!!!


    Yes, most definitely, without a doubt, you can cry. Cry until you can't cry anymore.

    We are all here for the same reason; to get support.

    I just had revision surgery the 9th of May. I've had a bad recovery time; I had a blood clot in my left lung, pneumonia, then the nasty respirator. It wasn't fun but I keep pushing.

    I'll be praying for you but know we are all here for you.


  11. #11
    Join Date
    Dec 2012
    I am so terribly sorry for your pain and hope you feel better soon. I'm not going to say anything silly like "stay positive". I'm just going to pray that this last surgery has given you at least some of your life back. Hang in there.

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