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  • Note from Joy's son.

    My mother gave me the user name and password to post on here how she was doing after her surgery so I just wanted to let everyone know what happened because she really enjoyed reading this board. After her surgery in june she had many many complications starting with a collapsed lung the next day, though that was corrected quickly, in the next few days she developed an infection that the doctors felt was a kind of meningitis in her brain. This lingered for months even after a second surgery was preformed to drain the absesses around her spine that were caused by this infection. The infection led to hydrocephalous or water on the brain which caused her to lapse into a virtually vegetative state and the doctors aren't optimistic about her ever coming out of it. Right now she's at a kesler rehab center in new jersey getting intensive therapy but in 3 weeks there we haven't seen much progress. Obviously the last few months have been torture for our family and we can only hope that there will be some better news to report at some point.

    I'm posting this because my mother walked in to her surgery on June 6th the picture of health, living on her own and though her back looked deformed she had ZERO pain whatsoever. I understand that she felt that this surgery would help her down the road later in life but she was clearly not filled in by the doctors of what could happen to someone who was 58 years old and with that large a curve in her spine. Right after the surgery was over, the doctor told me "this was a very very hard surgery and i knew that going in" well i think the proper risk/reward results of this surgery were not taken into consideration before by either my mother or the doctor and as a result she's been robbed of god knows how many good years with her family.

    Keep this in mind before you go in for a surgery of this extent.

  • #2
    I am so saddened to hear this news about Joyful. Thank you for letting us know what has happened. I am so sorry for you and your family. You will all be in my prayers.
    71 and plugging along... but having some problems
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    10/2018 x-rays - 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

    Comment


    • #3
      I'm so very sorry to hear this news. It's a reminder to us all that sometimes things go very wrong. We hear the stats and we think that the odds are pretty good of coming out of this with a successful surgery, but unfortunately there's always the one or two who are the "1%" or "5%".

      This is no help to you. The only thing that will ease your current torture is for your mother to emerge from this vegetative state and return to her former good health. Thanks for letting us know, we had wondered how Joy had fared and were concerned that we hadn't heard. Sadly, your news is going to unnerve a lot of people, and it will also cause some to re-evaluate whether this surgery might be too dangerous. But it also brings back the sad reality that not just this surgery, but any surgery can have unexpected, disastrous consequences.

      I hope you'll keep us informed of Joy's progress.
      Last edited by JenniferG; 09-20-2010, 05:07 PM.
      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


      • #4
        What a terrible turn of events. I hope your mother can recover completely and resume her life.

        I just have a thought that I hope is helpful...

        Surgeons take their patients as they come. Sometimes they turn them away when they think the risks are too great. Sometimes they are just blindsided. Not everything that goes wrong is avoidable or foreseeable. Sometimes blame doesn't apply even though it might seem to assuage our pain. Biology is more intrinsically complex than landing men on the moon and returning them safely. It is unfortunate that sometimes answers are just not forthcoming through nobody's fault.

        I wish your mother a complete recover and thank you for writing on her behalf until then.

        Best regards,
        Sharon
        Sharon, mother of identical twin girls with scoliosis

        No island of sanity.

        Question: What do you call alternative medicine that works?
        Answer: Medicine


        "We are all African."

        Comment


        • #5
          I have been worried about Joy since not hearing from her after her last post. It just makes me sick that this happened to her and you will be in my thoughts and prayers. Hopefully she will improve in the coming weeks and be able to get back home.
          Age 56
          Wore a Milwaukee Brace for 3 years in hs
          Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
          Thoracic 68
          Surgery Aug 31, 2010 T3 to L1
          Dr Bridwell St Louis
          http://www.scoliosis.org/forum/attac...1&d=1289881696

          Comment


          • #6
            Dear Son of Joy,

            Thank you so much for posting about Joy. I have been thinking and wondering about her and hoping nothing went wrong. I am so sad to hear that it did. You are right that people should be aware that this kind of thing can happen. It is especially awful that it happened to someone who went into this with little to no pain. Here is one post Joy wrote prior to surgery:

            "You seem to really understand now I feel; walking into the hospital with no pain to undergo an ordeal that hopefully won't lead to chronic pain to prevent hypothetical progression. ... I'm just putting one foot in front of the other and hoping that I'm doing the right thing."

            It is almost like she had some intuition that this was going to be very traumatic for her, based on some of her other posts. It literally makes me ill to think of her being in this situation and also when I think of you and your brother and how it affects you. Please keep us posted. I will pray that she comes out of it. Please do not give up hope; miracles do happen.

            Thank you again for posting.

            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.

            Comment


            • #7
              Those were very wise words written by Pooka - Sharon. Try not to be bitter and put your energy into positive thoughts and prayers for your mother. I think all of us who have undergone this surgery were aware of the real dangers and I am sure your mother was as well. That is the reason it is so difficult to make the decision to go ahead with the surgery and the terror we all go through before the surgery. I am so saddened by this turn of events for your mother and hope for her recovery.
              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


              • #8
                I also had wondered how Joy was doing since we hadn't heard from her. I can't tell you how sorry I am that things went so wrong for her. I hope and pray she can come out of this. Thank you for posting. My thoughts are with you and your family.
                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/

                Comment


                • #9
                  So Sad

                  Joy and Sons,
                  I am so saddened by what has turned out to be a terrible outcome from this surgery. I will keep Joy in my prayers and hope that she recovers enough to come home and enjoy her family again.
                  Joy turned out to be the rare 1% complication that our surgeons talk about when they warn us about the risks of surgery. Do any of us think we will fall in that category when we walk into the hospital? I know I didn't. And I know Joy didn't. There is no way for doctors to know beforehand which patients will have complications like these.
                  Sons, this is a tough time for you, stay positive and give Joy our love. Thank you for giving an update and keep in touch...:-)
                  May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

                  March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

                  January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

                  Comment


                  • #10
                    I am so sorry to hear that this tragedy has happened to your family. Your family will be in my prayers

                    Melissa

                    Comment


                    • #11
                      I am so sorry to hear about Joy. It certainly makes my problems seem minimal. My thoughts and prayers are with you.
                      Janet
                      36 year young cardiac RN
                      old curve C 29, T 70, L 50
                      new curve C 7, T 23, L 20
                      Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
                      Revision December 20 L5-S1 with pelvic fixation
                      and Osteotomy to L3 at Tampa General Hospital

                      Comment


                      • #12
                        Dear son of Joy-

                        Thank you so much for the post about your mom as I have been wondering about her for the past 3 months. I am absolutely devastated and am shaking like a leaf from reading your post. Both your mom and I joined this forum at the same time in Sept. 2009. She was the first person who sent me a private message and we spoke on the phone numerous times as she is from the same state as me. She originally was going to have the surgery with my surgeon, Dr. Boachie on June 2, 2010 but then earlier in 2010 switched to a different doctor in NYC because he was doing a minimally invasive procedure and Dr. B doesn't do that. I had my surgery on the same day as your mom, June 8th, with Dr. Boachie. I went into my surgery thinking of her that we were doing it at the same time, and as soon as I got home I posted a thread asking her how she was doing and got no response. I actually called her about 2 weeks ago and when I didn't get an answer I thought something may be wrong. SHe's been on my mind for the past 3 months. I have been struggling too with my recovery and I've always thought how she was doing since she had it on the same day as me. I remember her telling me she had zero pain. I found that unbelievable since she was alot older than me and that I am 31 and had alot of pain with my curve.

                        Please know that I will be praying for her. Please also keep us posted on her progress. I am soooo sorry that this happened to her. It's so unfair. She was such a pleasure to talk to when I spoke to her on the phone. Please let her know that we are all thinking of her. Miracles do happen!!!!

                        JenM
                        Surgery date: June 8, 2010 with Dr. Boachie
                        Thoracic curve: 55 degrees, corrected to 25 degrees
                        Lumbar curve: 58 degrees, corrected to 27 degrees
                        Posterior-only surgery, Levels T3-L3
                        31 year old mother of 2 young kids

                        Comment


                        • #13
                          For Joy's sons,

                          None of us know your mom, but yet we know her. We've all been worried, and thank you so much for telling us what happened. I can't begin to imagine how devastating this must be, and as the others have said, please do not give up hope. And please tell Joy that I will be praying for her and that we all will be thinking of her. I pray that she will be able to hear you.

                          I feel so sad about this. This is such a tough thing for your family, and my dearest hope is that she will fully recover.
                          Amy
                          58 yrs old, diagnosed at 31, never braced
                          Measured T-64, L-65 in 2009
                          Measured T-57, L-56 in 2010, different doc
                          2 lumbar levels spondylolisthesis
                          Exercising to correct

                          Comment


                          • #14
                            I know there are no words that will ever ease your pain. Your Mother will be in my thoughts and prayers as well. I believe in miracles, and I hope with all my heart that you get one.

                            Stay strong for your Mother, talk to her and touch her, make her fight to come back. She is already a strong person for living with scoliosis, and making the choice to have surgery.

                            Take Care of You too,
                            Shari

                            Comment


                            • #15
                              to Joy and her son
                              i am so sorry to hear this...i read a post from her in June...she said she was in pain, but it didn't sound as if she was in serous danger any more!!!

                              i go to the same surgeon your mother had...
                              i am completely shocked that such an extreme state could happen to her...to her body...thru this surgery!!

                              my thoughts and prayers will be with you both for recovery...

                              jess

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