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PTSD due to 6/21/2013 scoli fusion-new study in Spine

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  • PTSD due to 6/21/2013 scoli fusion-new study in Spine

    A new study in Spine Magazine says 1 in 5 lumbar fusion patients develop PTSD following their surgeries. I am one of the five. I was just diagnosed with it today.

    I fell on Thanksgiving Day. Got a huge bruise on my shoulder, but I have no memory of falling. I only know I did because my husband said I told him I fell. I barely remembered telling him. When my shoulder started really hurting the day after I fell, I had no clue why, then I looked in the mirror and saw the blues and reds running all down my shoulder, I felt shocked, because I knew I had lost the memory of what happened. I also don't remember anything about my surgery. My last memory is of being called and escorted to the pre surgery area. I don't remember changing clothes, getting on the gurney or anything else. My next memory is three days after surgery in the ICU. I had a nurse I was afraid of, I thought she was going to kill me. I really thought that. I have some loose gauzy memories of being alone in a room begging for water, having a nurse scream at me, and being abandoned by my family, who never visited, or so I thought. My husband said he was there, but I don't remember him there. He said I was awake and talking and got up and sat in a chair. I have no memory of that. They had me on dilaudid, which they said can cause disorientation, which I was, so it was discontinued. I assumed all of my memory loss was due to that.

    I saw my primary Doc today. I got some X-rays which were good, no injury to the fusion. He said my symptoms, more than just memory loss, I have muscle jerks, nightmares, crying, etc., are classic for PTSD. He is referring me to a therapist familiar with PTSD. I have been reading through a lot of threads in the few months I have been a member of the forum, and a lot of us have some of the same symptoms. It might be of value for us to look at PTSD as a possibility. Most of us have had way worse than just lumbar fusion.

    Thanks for being here for support. It is awesome to have people who understand. I will let you know how therapy goes.
    Wendy
    Fusion T6 to S2 with Dr. Carlos Bagley,
    Duke Spine Center
    Surgery Date June 21, 2013

  • #2
    Hi. I am sorry about all you have been through.

    Here is a clinical trial to see if a single dose of ketamine can help with PTSD. Maybe your doctor has an opinion on this.

    http://clinicaltrials.gov/show/NCT00749203

    Purpose

    The objective of the proposed study is to test if a single IV dose of ketamine (0.5 mg/kg) decreases symptoms of PTSD.

    I wish you well.
    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


    • #3
      Hi, Pooka,

      Thanks for the support. Sounds like a good study. I hope they get a positive result.

      I think I am having more trouble too because I only had three weeks between my consult with my surgeon and my surgery. It was an emergency...my back was beginning to separate at L2 and L3. I had no time to be prepared mentally. I still am in considerable pain most of the time, not enough to make me non functional, just enough to make life miserable for me.

      Thanks again,

      Wendy
      Wendy
      Fusion T6 to S2 with Dr. Carlos Bagley,
      Duke Spine Center
      Surgery Date June 21, 2013

      Comment


      • #4
        Sharon, thanks as usual for your reviews of the literature and in providing evidence based research for us to read. I mentioned this in a previous thread, but Ketamine was used at UCSF in the drug "cocktail" that was formulated for me postop. I have very little memory of my postop experience, especially no memory of feeling pain. I do remember calling the nurses (actually, I rattled the side rails and yelled) for pain meds, but I have no remembrance of feeling the pain. One side effect of the combination of drugs that they gave me was my inability to grasp how to use the PCA....either that or they never really gave me a PCA, but I have no memory of using it.

        My 10 days at UCSF was pretty trippy, but I do feel very good about it.

        It will be interesting to see the findings of the study on Ketamine inj on persons w/ PTSD. It sort of reminds me of hypnosis that allows you to revisit a past negative experience and then relive it while under hypnosis and change the outcome of that experience. In some cases, people undergoing such experiences feel empowered and have the feeling that they have better control of the experience.

        Susan
        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


        • #5
          Wendy,

          If a psychiatrist diagnosed you with PTSD then I think that's what you have. But had you not said that, I would have suggested it was a prolonged reaction to the meds you received.

          My one daughter was sometimes weepy for the first two weeks of her recovery. She is the one whose curve moved 5* a month during the entire observation period. She was diagnosed and fused within a 5 month period. A whirlwind.

          Her identical twin had a very protracted treatment that involved a year of brace treatment. That experience, plus seeing the fast recovery and results of her twin, seemed to push her towards wanting surgery. She was mentally on board and with the program. She had an easier recovery, was at least two or three days ahead of her twin at all points, and was never weepy.

          While I don't discount the mental component, I am also inclined to suggestion their bodies metabolized the anesthesia drugs differently. I was with both of them in the hospital the entire time and I remember being constantly incredulous at what the second kid could do that the first could not. The second kid logged-rolled herself correctly out of bed every time after being shown once. The first kid struggled for a few weeks and needed help often. The different recovery trajectories were so stark in the first 5 days that I felt forced to conclude it was biochemistry.

          I mention biochemistry just in case you have any inkling to blame yourself for your mental state. I hope you don't under any circumstances. PTSD is brain chemistry. Biochemistry is always operative. These are objective medical problems, not imaginary ones.

          Good luck.
          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


          • #6
            i find one in five patients developing PTSD from scoli
            surgery to be an INCREDIBLY high number...
            and i am doubting the statistic..
            what article does it come from...?
            how did they reach that conclusion...??
            where are their patients in the study from...???

            jess

            Comment


            • #7
              Originally posted by jrnyc View Post
              i find one in five patients developing PTSD from scoli
              surgery to be an INCREDIBLY high number...
              and i am doubting the statistic..
              what article does it come from...?
              how did they reach that conclusion...??
              where are their patients in the study from...???

              jess
              I have to agree. I wonder if there was some misunderstanding.
              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


              • #8
                Originally posted by jrnyc View Post
                what article does it come from...?
                It's here:

                http://journals.lww.com/spinejournal...ective.12.aspx

                I know the doctor, and I'll vouch both that he has a soothing demeanor which is not likely to upset his patients, and that he's bright enough to run a decent research study.

                I really admire the psychological studies that Hart has been doing recently. Surgery is not just the body, it's the mind as well, and figuring out that PTSD is making the patients recovery process bumpier is a useful insight.

                Comment


                • #9
                  I think part of the mental issue is the feeling of powerlessness that is an overwhelming part of this procedure. Soldiers would experience that feeling as well. The body goes into shock after a major injury and trama, so does the mind. The ICU is about helping the body survive the shock, but makes the mind worse. My sister in law is a Nurse with many years experience. She told me ICU physchosis is a common phenomenon. I believe her.
                  Wendy
                  Fusion T6 to S2 with Dr. Carlos Bagley,
                  Duke Spine Center
                  Surgery Date June 21, 2013

                  Comment


                  • #10
                    Originally posted by WLB1 View Post
                    I think part of the mental issue is the feeling of powerlessness that is an overwhelming part of this procedure. Soldiers would experience that feeling as well. The body goes into shock after a major injury and trama, so does the mind. The ICU is about helping the body survive the shock, but makes the mind worse. My sister in law is a Nurse with many years experience. She told me ICU physchosis is a common phenomenon. I believe her.
                    Is there any possibility this is due to reaction to the anesthesia or other meds? It seemed so with my twins. And when I brought up the wildly different recovery trajectories, that's what a nurse suggested.
                    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


                    • #11
                      thank you for providing the article...
                      i am wondering about follow up to see when symptoms
                      resolve...how far after the surgery symptoms improve...
                      i also wonder about what triggered it...about the anesthesia, etc...
                      i understand this is the "civilian version"...
                      the anesthesia aspect is not involved in PTSD diagnosis of military personnel...
                      and anesthesia is known to impact different patients differently...as Sharon
                      mentioned with her twins...

                      jess
                      Last edited by jrnyc; 12-14-2013, 10:05 PM.

                      Comment


                      • #12
                        I don't know how long the symptoms might last. It is not as bad as it was. There is a YouTube video of a posterior scoli surgery. I found it there a few days pre op, but I was afraid to watch. Post op I have been too afraid to watch it. Afraid of what, I don't know. There is a lot of stuff I am afraid of now that I wasn't before Surgery. I watched the video today. I felt empowered by overcoming my fears and watching what was done to my body. I was not grossed out by it. I was informed. I was thinking "So that is why it hurts so much". I was almost in awe of how much destruction my body can sustain without dying. I am stronger for it. And I feel proud that I am enduring the aftermath. Were it not for this forum with others sharing their stories and support I don't think I would be doing nearly so well. Thanks.
                        Wendy
                        Fusion T6 to S2 with Dr. Carlos Bagley,
                        Duke Spine Center
                        Surgery Date June 21, 2013

                        Comment


                        • #13
                          ICU psychosis occurs when you take people with various medical and surgical bodily insults and put them in a place that has limited lights, lots of noise (many of which are strange and none of which allow for any extended sleep) and then do that for one or more days. Since people in an ICU are generally somewhat critical, may have electrolyte imbalance, are on meds especially sedative and analgesics and generally alter mind altering, in pain, and are fluid deprived/dehydrated, anemic, it is not surprising that there is a change in sensorium. ICUs are also unfamiliar places devoid of people that the individual knows. When my mom had ICU psychosis, the nurses called me at 2 AM and had me talk to her on the phone. She told me over and over again that the people there were trying to kill her. I could not convince her otherwise. As soon as we transferred her to a regular hospital room and of course she was much more medically stable, she was her usual self.

                          I remember when I was in the hospital, I saw lots of bugs everywhere in the floor and my sheets. Some of that was probably due to ketamine medication. I remember my daughter trying to convince me that they were not real as I tried to pick bugs off sheets.

                          Susan
                          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


                          • #14
                            One of the few things I remember in the ICU was during the last day. I knew the nurse and the Doc in Charge were going to kill me. I had no doubt. Not trying to, going to. The fear went with me when I got in my regular room, I was sure they would come find me. My clever daughter told me not to worry, they moved me to a different hospital, Wake Memorial, not Duke, so the nurse and Doc couldn't find me. And I bought it and relaxed. But I was still afraid of the nurse. Am right now even though I know it makes no sense.
                            Wendy
                            Fusion T6 to S2 with Dr. Carlos Bagley,
                            Duke Spine Center
                            Surgery Date June 21, 2013

                            Comment


                            • #15
                              Wendy, that sounds so scary. Fortunately, my mom had no memory of it. In retrospect, I should have gone down to the ICU and stayed with my mom and I regret that I did not do that. I asked the ICU nurses if I should come down and they said no. If my mom had said what you wrote about continuing to feel afraid, my guilt would be awful. She was 87 when that happened after emergency surgery. She lived for 3 months more and died at home peacefully in hospice.

                              Thanks for sharing your story. We need some better strategies for helping people with ICU psychosis.

                              Susan
                              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

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