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Thread: The "I'm Sorry I Made the Decision to Have Surgery" Sticky Thread

  1. #16
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    I'm back......again

    Hi everyone. I'm nearing my 2 year post op anniversary and thought I'd give a brief update (see above post dated 2-06-12). I had a visit with my surgeon at about my 15 month post op mark (September 2012) and we discussed the continued issue of pain. X-ray's were taken and an MRI was done to hopefully see a complete and successful fusion. However, the rods are giving off a starburst reflection effect which makes it impossible to see the area where bone has hopefully grown. I was prescribed physical therapy which I finally completed this spring. I was 100% devoted to making every appointment, doing every excercise and trying every possible suggestion. After 16 appointments, I was not making any improvement and was released from PT. I have not spoken with my surgeon since finishing PT, but we did have a nice long conversation prior to beginning. I was told if the PT did not reduce my pain level and improve my quality of life, the next step is essentially exploratory surgery to go in and get a "birdseye view" of the bone growth and check for possible fusion failure and to look at the hardware and possibly remove it if the fusion is complete. That's where I stand now. I have had to increase the amount of oxycontin and fentanyl I am taking, and in addition I take sleep medication and a muscle relaxer at night so I can get a bit of decent sleep. At this point, I really can't say whether I'm sorry I had the surgery or not, because I have no idea what my life would look like if I had not. I try really hard to not say "What if" and instead say "What next?"

    Everyone take care!
    Last edited by allycat; 06-14-2013 at 02:32 PM.
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  2. #17
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    Linda --do you have a link to possible surical complications? I need it and I know it is here,but can't find it.Jackie

  3. #18
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    I KNEW I shouldn't have read this thread...
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  4. #19
    Join Date
    Jul 2011
    Location
    Nashville, TN
    Posts
    161

    I regret EVERY SECOND of my extremely painful life and decision to have this surgery!

    This surgery has ended my life, left me in chronic SEVERE pain. I have taken narcotic pain meds for the 3 years since I had this dreadful disaster!!! I had fusion from T-3 to sacrum at 48 years. It has left me in so much pain that I cannot function. I have SEVERE sciatic pain that never ever stops. I am living in hell with this suffering and have tried EVERYTHING! If we put animals out of misery, why does society insist in forcing those suffering with debilatitng severe chronic pain to continue living? They need to live in my body for just ONE day, then tell me that their life is not over!!! I am utterly miserable so I beg others to head the warning that you may end up like me with 100 times MORE PAIN.

    If you choose to ignore the negative posts like I so gullibly did, you may live to regret you ever heard of spinal fusion surgery. It has ruined 4 lives- mine, my husband, my 2 children. AND IF I HEAR ONE MORE PERSON SAY "GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE", I AM GOING TO SLAP THEM,
    Last edited by TwinmomTN; 06-05-2015 at 07:41 PM.
    Pam, age 49
    Thoracolumbar curves 80 and 40 corrected to 20 degrees
    April 20, 2012 surgery with Dr. Lenke
    T-3 to sacrum

  5. #20
    Join Date
    Mar 2008
    Location
    Chicago-"land"
    Posts
    157

    I'm just so sorry....

    I read these stories and feel for all of you; some of you should hire lawyers! My prayers are with you.

    Heck, I'll name names! My original surgery was a disaster BECAUSE of the surgeon DR. MICHAEL KROPF of Cedars Sinai in L.A. He is a lousy surgeon and was totally inadequate for what I needed. Fortunately I found an excellent revision surgeon and I am much, much better. I am still recovering but I can say I have less pain in only 3 months after revision surgery than I did 6 years after my first surgery.

    There's hope....don't give up.
    Susan
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

  6. #21
    Join Date
    May 2016
    Posts
    48

    Thumbs up Similar, but nowhere close

    Quote Originally Posted by TwinmomTN View Post
    This surgery has ended my life, left me in chronic SEVERE pain. I have taken narcotic pain meds for the 3 years since I had this dreadful disaster!!! I had fusion from T-3 to sacrum at 48 years. It has left me in so much pain that I cannot function. I have SEVERE sciatic pain that never ever stops. I am living in hell with this suffering and have tried EVERYTHING! If we put animals out of misery, why does society insist in forcing those suffering with debilatitng severe chronic pain to continue living? They need to live in my body for just ONE day, then tell me that their life is not over!!! I am utterly miserable so I beg others to head the warning that you may end up like me with 100 times MORE PAIN.

    If you choose to ignore the negative posts like I so gullibly did, you may live to regret you ever heard of spinal fusion surgery. It has ruined 4 lives- mine, my husband, my 2 children. AND IF I HEAR ONE MORE PERSON SAY "GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE", I AM GOING TO SLAP THEM,
    Hi TTN, I'll keep this short as longer posts get routed back to log in again then frozen. I endure chronic pain as a result of a failed two level disectomy and fusion. It took me from a productive person to a physical and mental shadow of myself. I just want you to know I can at least partially understand your situation. Kyphosis and scoliosis gradually deformed my spine to the point I am almost certainly getting the complete revision surgery. I have an 80+ degree kyphosis and chronic pain; choices are limited. What I want to say is you are not alone. I have wished for euthanasia myself many times. I feel your rage and despair. One suggestion: Have you gotten a workup by a major teaching hopital's pain management dept? ( like MGH, Mayo, Johns Hopkins)? Perhaps a spinal cord stimulator or an intrathecal morphine pump might help? I would think bathing your spinal nerves in a constant stream of morphine might quiet them down. I know all too well how constant pain can drain every ounce of your quality of life, and as you said, no sentient being should suffer this way. Have you looked into these options ? Thanks for sharing, it has added to my pre op fears. As bad as things are now for me, I understand all too well that misery is a pit without a bottom; things can always get worse. Good Luck. RJM

  7. #22
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    I am 5 years out from my first revision surgery. In the beginning, I was so sorry that I had the surgery.Now, I am so grateful to my surgeon. He is so talented and gave me my life back.Yes, I have chronic pain, but I live my life to the fullest. I can do many things that my surgeon never thought possible.

    So hang it there. Things might change for the better
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  8. #23
    Join Date
    Dec 2007
    Location
    Washington DC
    Posts
    50

    After five large fusions and hundreds of smaller procedures...

    Hi everyone,

    I've given this question a lot of thought. I think I have an answer, finally.

    First a bit of background. I have a half-brother. We inherited our scoliosis from my father; we have different mothers. Both our curves were extremely aggressive, mine so much so that it broke the Harrington rod from my first surgery. My brother's mother would not allow him to have the surgery, so his curve was very large- in the region of 130 - 140 with severe twisting. He was in so much pain as an adult that at age 35, he attempted suicide. It failed, so he turned to drinking and street-level pain relief. He could no longer sleep on his back without stopping his breathing and\or his heart. They found him one morning about seven years ago, flat on his back. He had died in the night from heart failure from sleeping on his back. So basically, scoliosis helped kill my brother.

    I know he went through hell.

    I've had a lot done to my back over the years. A whole lot. Five big fusions, surgeries to remove broken rods and wires, surgeries to move muscle and fat over hardware, surgeries to fix pseudoarthroses. Not to mention all the smaller procedures like rhizotomies, steroid injections, and other injections and procedures too numerous to count. I've been in a brace of some kind more often than not. I've been in pain management since 1999 except for one year in 2006 - 2007 when suboxone came out, so I tried to go without it. Mistake.

    After all of this, the only thing that I question is if I had surgery too early. Clearly my spine was not done growing at the time of my first surgery. I think I should have waited five years, maybe more. Then I would not have had the Harrington rod put in. That rod has been the bane of my existence and the cause of so much of my pain. At the time, Dr. Bradford (I remember this very distinctly) played my mother like a harp. He told her all her fears would come true. I remember him telling her back in the late 1980's that if I didn't have the surgery immediately, that I would be in a wheelchair at 35 and probably die before I was 45 (how could you ever forget a conversation like that?).

    I'm happy right now with the outcome of my recent surgery. I hope I don't need any more. Time will tell with that I guess. I'm decreasing my pain meds every appointment. I don't know how low I can go with them. I'm hoping for a minimal amount. Not being on any is practically inconceivable, but would be amazing if it happens.

    So my only regret is the timing.
    "The plural of anecdote is not data" --Frank Kotsonis

    Ph.D. in Bone Biology
    Harrington rod and Leuke sublaminar wires 2/1986, fused T4 to T12.
    First revision 3/1987 fused pseudoarthrosis, placed CD instrumentation from T10-T12.
    CD instrumentation removal 10/97 following breakage.
    Leuke wire removal 4/99.
    Salvage surgery; Harrington removal 1/2000, fused to L2.
    Ruptured disc, fusion extension to L4 3/2016.
    Surgeons: David Bradford, Francois Denis, Mike Lagrone

  9. #24
    Join Date
    Jul 2016
    Posts
    9
    Quote Originally Posted by Marina63 View Post
    Me too! Even though my recovery is going well, I'm still not in that "happy I did this" place. I'm getting there, I think. Because I wasn't in any major pain before, and feel worse now, I'm not convinced I did the right thing. I guess my curve would have continued to progress, but who knows?

    Getting there.......slowly : )


    Wow! This was an old post right? Surgery was in 2011? Are you glad you had the surgery now? I hope so!

  10. #25
    Join Date
    Jul 2016
    Posts
    9
    Quote Originally Posted by TwinmomTN View Post
    This surgery has ended my life, left me in chronic SEVERE pain. I have taken narcotic pain meds for the 3 years since I had this dreadful disaster!!! I had fusion from T-3 to sacrum at 48 years. It has left me in so much pain that I cannot function. I have SEVERE sciatic pain that never ever stops. I am living in hell with this suffering and have tried EVERYTHING! If we put animals out of misery, why does society insist in forcing those suffering with debilatitng severe chronic pain to continue living? They need to live in my body for just ONE day, then tell me that their life is not over!!! I am utterly miserable so I beg others to head the warning that you may end up like me with 100 times MORE PAIN.

    If you choose to ignore the negative posts like I so gullibly did, you may live to regret you ever heard of spinal fusion surgery. It has ruined 4 lives- mine, my husband, my 2 children. AND IF I HEAR ONE MORE PERSON SAY "GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE", I AM GOING TO SLAP THEM,
    Holy Cow! I'm so sorry to hear this for you! I'm considering a total fusion to my sacrum. It's scheduled for May 9, 10, 2017 at UCSF. I'm consumed by thinking about it. What is the right thing to do, but at the moment I have no life as it is. I'm on percocet for the past 2 years and became allergic to pretty much all pain meds. I am nothing of the person I was just 2 1/2 years ago. I don't like anything anymore. I'm 50....will be 51 ON THE DAY OF my scheduled surgery. It had to be put off because they need 3 neurosurgeons for it and in coordinating all their schedules, I get to think about it for 6 months. I'm scared out of my wits and my heart rate beats over 100 bpm when I read the paperwork. Sick of the lifetime I've already had with X-rays, MRI's and CTS. I feel like I'm glowing from all the radiation.

    Where did you have the surgery? Did your pain get any better? What went wrong and what was your pain like before the surgery? I hope things have turned around for the better for you. I pray you get relief and soon.

  11. #26
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Reminder: This thread is for testimonials only. Please send questions/comments about someone's post via PM. Thanks.
    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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