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WARNING: if considering full spinal fusion, it may disable and end your life as mine.

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  • #61
    Back-out: Bummer....so sorry about your breast cancer diagnosis, but hope that it is curable. Wishing you the best for recovery.
    Hope to see you back here.
    Susan with spinal cord injury after spinal surgery
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev 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 SCI T4,5 sec to PJK
    2015: Rev 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
    2021: Removal T1 screw & rod

    Comment


    • #62
      Back-out

      I'm sorry to hear about what you are about to face.

      I wanted to pass along information about a lodging guide called Joe's House.

      http://www.joeshouse.org
      30 something y.o.

      2003 - T45, L???
      2005 - T50, L31
      bunch of measurements between...

      2011 - T60, L32
      2013 - T68, L?

      Posterior Fusion Sept 2014 -- T3 - L3
      Post - op curve ~35


      Comment


      • #63
        There is really no definitive study on complications in adult deformity surgery. There are several multi-site studies being conducted to look at both long and short-term complications. Unfortunately, the percentage of adults who have deformity surgery and who require additional treatment is fairly high. It wouldn't surprise me if we find that the 20 year serious complication rate is 50% or higher. As older and sicker patients are offered a surgical option, the complication rate continues to rise.

        There's no question that the complication rate is too high. Unfortunately, spinal deformity is a very complex problem. It's horrible to have to make the decision to either live with chronic pain or risk having surgery that might lead to significant problems.

        The good news is that the most serious problems are relatively rare. I've known or heard about a handful or two of people who feel that scoliosis surgery ruined their lives. And, it's hard to know in all of those cases, what these people's lives would have been like without the surgery.


        ROCK <US> HARD PLACE
        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

        Comment


        • #64
          So sorry to hear this latest, Back Out. Sending my very best wishes for a full recovery.
          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

          Comment


          • #65
            I have been away from the forum for a long time. I am so sorry for all of you who have had such horrible outcomes from your surgery. Many times I have felt sorry for myself because of daily pain, but after reading all of your posts, I realize that even though I have pain every day, most of the time it is not disabling pain. I cannot take anti-inflammatories as they were destroying my kidneys. I had a dumb primary care physician that didn't even notice that my kidney function tests were flagged as high. Fortunately because I was a Medical Technologist in my former life, I always requested copies of my lab reports. I stopped taking NSAIDS, fired my PCP and found a new PCP, and went to a Pain Clinic Doc. He upped my Neurontin dosage and put me on Tramadol. He suggested the Medtronic neurostimulator that I decided to hold off on for the time being. I also went for more physical therapy. It all seemed to help somewhat. Then I had my hip replacement surgery and then seven months later arthroscopic knee surgery. My restless leg syndrome came back after the hip surgery and finally two years later has almost disappeared. It has taken me two years to be able to walk a mile and in the meantime my pain doesn't seem as bad. Life can be a real challenge. I feel so bad that I have complained about my pain now that I read about these horrible outcomes. I am sorry that I had encouraged some of you to go ahead and have the surgery, but because Dr. Rand basically gave me my life back, I thought it was worth a try. Before I had my surgery, I knew I would be in a wheelchair for the rest of my life if I didn't do something drastic. I was basically begging to have the surgery. Melissa, Susan, Pam, Lori, Tableone, daily pain, Spring 72 and anyone else who is suffering so badly, please accept my sympathies for your pain. I pray that with time things will improve for each and everyone of you.
            Sincerely, 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.

            Comment


            • #66
              Oh no, Pam. So sorry to read this. I won't give advice nor platitudes, just best wishes that things ease up for you, and prayers for your all-around well being.
              Mom of 14yo son diagnosed Oct 2011
              Surgery 1/3/12 w Dr. Geof Cronen,
              Tampa General Hospital T3 to L1
              Jacob's pre surg curves: T58 & L31 12/28/11
              photos & xrays in "First-Time Surgery" thread "Before & After"

              Comment


              • #67
                Attn.TwinmomTN~~

                First I want to tell Pam how utterly sorry I am that you are now up against another battle. I don't recall you saying where the biopsy was done on your body, but just hope all turns out well for you. I always worry that on top of these huge surgeries , something like that can also happen.
                TwinmomTN, I also live with pain everyday . And it gets very old. I didn't have a choice if I wanted to stay out of a wheel chair. I had a lot of pain for years before I had the surgery, so I knew already what pain is. At least I'm in a upright position while deAling with pain. I just do everything I can to have the best quality of life I can. I feel isolated a lot of the time, because of my condition. I have extreme neck pain(radiates down my arm) . And lower back pain thAt is also causing burning ,numbness in my feet & lower legs(from an impinged nerve). It's frustrating! I suffer from adrenal fatigue from all the stress on my body. Ugh! I could go on, but I think you have heard enough! I feel for you and every person on here that deals with these kind of issues daily. But, like I said, I am walking, and am thankful for that. I am glad you posted about this subject of what we have to deal with after the surgery. I know there are some that have been blessed with no pain at all. And that is wonderful. We at least can understand the plight of these surgeries and I truly understand your feeling. Warm thought of you and all the rest of our scoli friends.
                Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
                Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
                This started adult onset scoliosis
                July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
                Oct.20th 2010, extended rods to T4 / did osteotomy at L3
                Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
                May 30th 2013 revision
                May 8th cervicle surgery 2016
                May 31st Dr. Gupta revision 2017

                Comment


                • #68
                  Originally posted by LindaRacine View Post
                  There is really no definitive study on complications in adult deformity surgery. There are several multi-site studies being conducted to look at both long and short-term complications. Unfortunately, the percentage of adults who have deformity surgery and who require additional treatment is fairly high. It wouldn't surprise me if we find that the 20 year serious complication rate is 50% or higher. As older and sicker patients are offered a surgical option, the complication rate continues to rise.

                  There's no question that the complication rate is too high. Unfortunately, spinal deformity is a very complex problem. It's horrible to have to make the decision to either live with chronic pain or risk having surgery that might lead to significant problems.

                  The good news is that the most serious problems are relatively rare. I've known or heard about a handful or two of people who feel that scoliosis surgery ruined their lives. And, it's hard to know in all of those cases, what these people's lives would have been like without the surgery.


                  ROCK <US> HARD PLACE
                  Having had a "major complication", rare as mine was, I offer this piece of my wisdom. It is easy to say, after a complication, that one can wish that he/she never had the surgery. In many cases, that is an easy out. We generally assume that if we did not have surgery, then we would be better off than we are now. This is magical thinking. Before my first surgery, I could walk 1/2 block before having to sit down with sciatic pain. I could cook dinner, but was is excruciating pain by the end of my cooking and needed to lay down with an ice pack on my thoracic kyphosis for 1/2 an hour before I could eat. I leaned to the right. My first surgery was 2 plus years ago, and without that surgery, I am sure that I would have degenerated further. So, now I am in a wheelchair/crutches but am still happy that I had the initial surgery. If I had not had the first surgery, I would probably permanently be in a wheelchair within the next 5 years.

                  If I had a different surgeon, would the outcome be different? Maybe.....but then again, it might have been worse.

                  My heart goes out to those in chronic severe pain.

                  Susan
                  Last edited by susancook; 09-15-2015, 01:06 AM.
                  Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev 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 SCI T4,5 sec to PJK
                  2015: Rev 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
                  2021: Removal T1 screw & rod

                  Comment


                  • #69
                    Originally posted by susancook View Post
                    Having had a "major complication", rare as mine was, I offer this piece of my wisdom. If is easy to say, after a complication, that one can wish that he/she never had the surgery. In many cases, that is an easy out. We generally assume that if we did not have surgery, then we would be better off than we are now. This is magical thinking. Before my first surgery, I could walk 1/2 block before having to sit down with sciatic pain. I could cook dinner, but was is excruciating pain by the end of my cooking and needed to lay down with an ice pack on my thoracic kyphosis for 1/2 an hour before I could eat. I leaned to the right. My first surgery was 2 plus years ago, and without that surgery, I am sure that I would have degenerated further. So, now I am in a wheelchair/crutches but am still happy that I had the initial surgery.

                    If I had a different surgeon, would the outcome be different? Maybe.....but then again, it might have been worse.

                    My heart goes out to those in chronic severe pain.

                    Susan
                    Couldn't agree more.
                    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

                    Comment


                    • #70
                      pain implant device (non drug related)

                      Hello All-

                      First off I am extremely sympathetic - and I do understand what real unending physical pain to where you cannot walk is like. With no relief whether you lie down ,sit up etc.

                      Anyway- I am writing to ask- has anyone with this severe pain ever considered having one of those electrical pain devices implants.? This is not a drug pump. It is not a drug. I knew someone many years ago who I have lot touch with- who was a rep for some kind of medical device like that and it was miraculous for the patients it was put in. I used to hear about back in the day- when I did not have this pain or problems that I have now.

                      Also this was in the mid nineties or so- so ten to one they would be even better than they were.
                      I do not know the name or brand- I did not pay attention to that at the time. But boy the stories were really cool and she was not selling me anything- she was just a friend of mine who would tell me about her work.

                      Comment


                      • #71
                        Originally posted by Gabriella1212 View Post
                        Hello All-

                        First off I am extremely sympathetic - and I do understand what real unending physical pain to where you cannot walk is like. With no relief whether you lie down ,sit up etc.

                        Anyway- I am writing to ask- has anyone with this severe pain ever considered having one of those electrical pain devices implants.? This is not a drug pump. It is not a drug. I knew someone many years ago who I have lot touch with- who was a rep for some kind of medical device like that and it was miraculous for the patients it was put in. I used to hear about back in the day- when I did not have this pain or problems that I have now.

                        Also this was in the mid nineties or so- so ten to one they would be even better than they were.
                        I do not know the name or brand- I did not pay attention to that at the time. But boy the stories were really cool and she was not selling me anything- she was just a friend of mine who would tell me about her work.
                        Are you talking about a spinal cord stimulator?
                        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

                        Comment


                        • #72
                          I am currently in a discussion about having a spinal cord stimulator placed. Does any one have information on them?
                          T10-pelvis fusion 12/08
                          C5,6,7 fusion 9/10
                          T2--T10 fusion 2/11
                          C 4-5 fusion 11/14
                          Right scapulectomy 6/15
                          Right pectoralis major muscle transfer to scapula
                          To replace the action of Serratus Anterior muscle 3/16
                          Broken neck 9/28/2018
                          Emergency surgery posterior fusion C4- T3
                          Repeated 11/2018 because rods pulled apart added T2 fusion
                          Removal of partial right thoracic hardware 1/2020
                          Removal and replacement of C4-T10 hardware with C7 and T 1
                          Osteotomy

                          Comment


                          • #73
                            Jackie, Melissa would know......read her past threads and posts.

                            Ed
                            49 yr old male, now 63, the new 64...
                            Pre surgery curves T70,L70
                            ALIF/PSA 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

                            Comment


                            • #74
                              Originally posted by jackieg412 View Post
                              I am currently in a discussion about having a spinal cord stimulator placed. Does any one have information on them?
                              Hi Jackie ,

                              I got this "quiz" about whether a SCS would be right for me:
                              http://us1.campaign-archive2.com/?u=...f&e=4d431c96e6

                              I would seize upon any tech that could possibly help. They have advanced models now ( 32 leads I think) as opposed to the first generation of the devices. They can install one on a temporary basis, in the outpatient center. If you don't like it, or it is worthless, they can easily remove it. If my deformity was not as severe and stable, I would try one myself. However that is not an option for me, because once the curvature started it never stopped, only varying in how fast it progressed. I heartily encourage you to try one, seeing as they can be easily removed. Even if it reduced your opiate intake that would make it worthwhile, would it not? Good Luck, RJM

                              Comment


                              • #75
                                I think it must have been a SCS

                                Originally posted by LindaRacine View Post
                                Are you talking about a spinal cord stimulator?
                                Hello Linda,

                                I am sorry that I do not know what it was but it was a device that back in the 90's a friend of mine was a rep for - and would accompany a surgeon in surgery to make sure he/she placed it properly. She was a friend of mine and I did not get the name of what it was but I am guessing it was possible the scs All I know was that as a friend she would relate some miraculous stories of people who had not been able to walk be able walk due to pain be able to walk. She would be a little embarrassed or felt awkward she said because she and the doc would visit the patient after the surgery and the patient would be gushing about how my friend saved their life (when in fact it was the surgeon who did the placing of the device). She worked for a medical device company (and had a medical background but not of a surgeon).. Anyway- it sounds like it has improved upon since 1997.. I wondered if that could help some of these people who have severe pain.

                                I will read up on it.

                                Comment

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