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  • New here, surgery date Feb 23. Terrified.

    Hi all,

    I have my first ever surgery on Feb 23 and am struggling with the anxiety and fear.

    Classic story - wore a milwaukee for 4 years, closed out the process at 42*up/38*low, and went about my business, believing the dr who said it wouldn't progress.

    Now at age 38, I have been on Celebrex and Tramadol max daily dosage for 2 years. I went to see Dr Boachie in December, hoping to discuss tweaking my pain management regimen and was stunned to hear that I need to be fused from T2 - L4.

    I went for a second opinion and it was confirmed. My surgery date is Feb 23 at Yale with Dr. Grauer.

    I am sure it's unpopular to say but I felt like Boachie saw me as a quick win and not as a patient. He spent most of his time - all $450 cash of it - with his back to me. He may be the best in the nation, and if I were having corrective surgery, I would be more willing to entertain HSS, but I really liked Dr Grauer and have confidence that Yale will be able to provide excellently for me.

    I've thought this over 15 ways from Sunday and feel as prepared as I will be. Do I feel confident that my pain will go away and I will be better for having done this at all? No. But I do feel confident that I have no choice but to go forward, and it may as well be sooner than later. I thought I had outrun this and the shock of finding out that in fact, I hadn't, has been overwhelming.

    We have a two story house with all beds and a bath with walk-in shower upstairs. I expect to be sequestered there for 2 weeks, as the stairs will be hard. Other than Wii, a dorm fridge, and a kindle, is there anything else I should acquire pre-op? I have ordered an old lady bonnet hair dryer, because my hair is long and takes forever to air dry, and I don't do being dirty.

    I asked for the least amount of correction possible. I am very well compensated for now being 65/40, with my head only 2mm off center, and my left shoulder 2.5cm lower than the right. I am already long waisted, even with the curvature and have no interest in looking bird-like with a creepy long torso and short legs. I am hoping he can get me back the inch of height I've lost and that is it.

    Also I am hoping that he doesn't maybe reduce the number of vertebrae he's fusing too.

    So I have some questions that I hope you're willing to answer for me, based on your experience. Your answers are greatly appreciated.

    1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with?
    2. How long before I can shower?
    3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4.
    4. How long was your surgery and how complex? The OR is booked for 5 hours.
    5. When did you return to work? I have a 2 hour commute by train but am hoping to telecommute at 8 weeks. Is this reasonable or a stretch? I have a desk job.
    6. Was there anything that was good during that first 3 months?
    7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.

    Thanks for your help and please keep the horror stories on the down-low. I'm already taking xanax every few hours to keep the hyperventilation at bay.

    Many thanks and I wish you all well.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  • #2
    revision

    Hi Lily, I'm sure you are scared, I hope this helps, I showered the day I came home, I was in hospital 7 days, you will need help with meals, stairs may not be that long before you can go up and down,( not all day long).I am a hairdresser and was back to work in 5 months,also I was 59. Walking is very good, I was glad right away, the pain before surgery was gone, jusy surgery pain to deal with, but it gets better each week. My surgery was 5 hr. How old are you, and good luck.

    Comment


    • #3
      First of all, WELCOME!!
      I never have, for even a nanosecond, questioned or regretted having my surgery. I was in the hosp for 8 days, and when I went home, I was by myself all day while my husband was at work and my youngest (a high schooler) was at school. For the 1st week or so at home, I slept on the couch on the 1st floor. This was not because of the stairs to our 2nd fl bedroom, but because my husband is such a toss-and-turn sleeper. Our bathrooms were upstairs, and I did fine w/going up and down to shower daily, w/only me in the house. The pain was as bad as I had been prepared to expect, but the narcs made it doable. I walked around the house a lot because, even though it was late Aug and the weather was beautiful, the uneven surface of our neighborhood's streets made for a bumpy walk when using the walker, and that hurt. As far as the walker goes, I used it inside the house for a week or so.
      Truly, the biggest help for me was all that I learned from this forum. The dr's office assistant gave good pre-op instruction, but it was nothing compared to reading about the experiences of so many people who actually had had adult scoli surgery. I went into surgery knowing as much of what to expect as I could know without having personally experienced it.
      By mid Oct, about 7 weeks post-op, I wasn't taking any pain meds regularly - just a rare one when I had a relatively "heavy activity " day.
      Why do you want as little correction as possible??
      Another thing. As you read through the threads here, you probably have noticed a good deal of time and space spent discussing constipation. It REALLY is to be avoided post-op, at all costs! Maybe it never becomes an issue for some rare person, but with the round-the-clock use of opiates, it's pretty much a given. What I did, before my hardware removal surgery, as a preventive measure: 2 nights before my surgery, I drank a bottle of mag citrate, and it did its job that next morning (the day before my surgery) so at least during those 1st days, I was pretty. . .um. .. empty. That way, I had a head start (the hosp will start you on preventative meds, like Dulcolax and Colace, pretty much right away) in avoiding that particular nightmare.
      My surgery (T-3 to L-3) lasted 7 - 8 hours.
      Fused T-3 to L-3, Aug 25
      Hardware removal surgery, Nov 2, 2010
      Fused T-10 to L-2, osteotomy, Feb 22, 2011

      Comment


      • #4
        Thanks you guys.

        I updated my sig after posting - we'll see if it shows up this time.

        I'm 38, in excellent health otherwise, 5'4", 143 lbs, and I routinely take a 2 hr train commute to/from NYC for work and wear 4" or 5" platform heels (I work in Finance and heels are more comfortable than flats, which kill my lower back). Not a smoker, no allergies, nothing - except that my spine is apparently made from macrame materials. :P

        I am hopeful that I can stay off grand rounds (as requested) and specifically told Dr Grauer that no residents, nobody but he, is to put any instrumentation into my back. I gravely fear paralysis. My parents are coming on Day -5 (5 days post-op) and will be staying at my house for a week. My mom is an organizer - as in, she told me to leave the big closet in the guest room for her to pull things out so I can say Keep or Trash - for something to do while she is here - and my dad loves to cook. Husband will be home for the first few days and return to work if we have established a routine by then.

        I am flattered to say that my friends are coming out of the woodwork to schedule time to come and stay for 3-4 days at a clip. I'm trying to find an online calendar to prevent overlapping.

        Generally, I am the breadwinner of our household (no kids) and I am very anxious about depending on others. This is really hard for me. I've been in weekly PT for a year, and my PT has offered to come to my house and do PT for me, and also has started me on a pre-op program to strengthen scapulars and abs. I am hoping to only wear a post-op brace if I am utterly exhausted and unable to sit up properly without using my core.

        This is probably the right time to say that I am very driven, very Type A, a typical NYC worker, and can not see beyond D-Day. I can't see a time when I will be able to say I am glad I did this, because it is ultimately preventative (to keep me from being rolled up like a potato bug by the time I'm 60).

        Can I get Versed for 6 months? That would be fabulous.
        Last edited by Lilysaidwhat; 01-15-2011, 07:51 PM.
        Female, age 38
        4 years of bracing, concluded at 42*upper/38*lower
        currently 64*upper/40*lower
        Fused T3-L4 on Feb 23 2011
        now 32*upper/18* lower

        Comment


        • #5
          @mgs, thanks for the heads up on the constipation. I have never been constipated and have to admit that I am really worried about that.

          My worry is that I won't eat enough to be able to go home. I really would like to be home in 4 days. If it's 6 days and I'm not out, I will be really upset.


          Another question - are there drains from the incision site? When are they removed?

          And is it possible to knit in bed that first couple of weeks? How much time did you spend up and moving around? I keep hearing 3 times a day to be up and moving, but for how long and doing what? Alternately I hear as much as you can - so what does that mean?
          Last edited by Lilysaidwhat; 01-15-2011, 07:58 PM.
          Female, age 38
          4 years of bracing, concluded at 42*upper/38*lower
          currently 64*upper/40*lower
          Fused T3-L4 on Feb 23 2011
          now 32*upper/18* lower

          Comment


          • #6
            1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with?

            I only needed help with sitting and standing the first two days. I had two epidurals so wasn't feeling any pain.

            2. How long before I can shower?

            It varies a lot I think, but they pulled everything out Day 3 and if my memory serves me correctly, I went straight to the shower and washed my hair. I showered without help every day from then on.

            3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4.
            My shift from epidurals to oral meds didn't go smoothly. Day 6 I was in a lot of pain and I needed morphine injections. That continued until Day 19 when they finally let me go home. From the moment I was in my own bed, the pain dissipated. Either it was psycholgical or suddenly the meds started working.

            4. How long was your surgery and how complex? The OR is booked for 5 hours.

            I was told both 7.5 hours and 8.5 hours so somewhere around that mark.

            5. When did you return to work? I have a 2 hour commute by train but am hoping to telecommute at 8 weeks. Is this reasonable or a stretch? I have a desk job.

            It was 4 weeks before I could sit comfortably at the computer for any longer than 20 minutes. Sitting was uncomfortable though I could stand, walk and lie without problem. From about that time, I improved a lot, so telecommuting is probably doable at 8 weeks.

            6. Was there anything that was good during that first 3 months?

            Having no responsibility for the first time in my life. I thought that might be difficult, but I loved it. People took care of themselves. Nobody wanted anything of me. Sleeping during the day. It didn't last long enough!

            7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.

            Not sure when I actually felt glad that I'd done it. I do know I was so relieved it was over, I was on a high for nearly 12 months! It goes without saying that I'm very glad I had it done. I have no pain at all and can do anything, although some tasks are awkward.
            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


            • #7
              Another question - are there drains from the incision site? When are they removed?

              Most people do have drains but I didn't.

              And is it possible to knit in bed that first couple of weeks? How much time did you spend up and moving around? I keep hearing 3 times a day to be up and moving, but for how long and doing what? Alternately I hear as much as you can - so what does that mean?

              I think it will depend on how the medication affects you whether you will be able to knit. Some people are sending emails and posting messages in the first couple of days. I could barely watch and follow a tv programme.

              I walked 4-5 times a day in hospital, up and down the halls. At home I walked the length of our street, stretching the distance out each day. At first I had someone with me when I went out walking. Some hospitals ensure you can walk up and down stairs before you leave, but I really only saw the physiotherapist on day 2 and 3 then she left me to it. I was really fit going in to surgery and I think that helped. My only problem was the medication didn't seem to do the trick...until I got home on day 19, as I said earlier.
              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


              • #8
                need clear goals pre-op

                Originally posted by Lilysaidwhat View Post
                7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.
                Hi Lily,

                I can definitely relate to your anxiety, and I think we have all been there when contemplating this type of surgery. Please don't be offended but I am a little concerned to read your comment above. In my opinion you need to have a very clear view in your own mind of why you are choosing to have this surgery now, and what you hope to accomplish with it. The recovery is no walk in the park, especially the early few weeks, so you will need to have a committment in your mind about why you are choosing the surgery now. I don't mean any disrespect, I hope you understand that. But perhaps, if you are not sure why you are having the surgery now, maybe it is not the time to do it. Maybe you need more time to develop a clear reason for wanting it. You need a clear set of expectations for what the purpose and personal goals of the surgery are, not just that a surgeon has told you that you need it. There is rarely a huge rush for this. Are you in severe pain that was not helped by conservative measures, is your curve showing documented progression currently, these are a couple of reasons to have surgery. But if you don't know why you're having it, and don't what you have avoided by having it, I think you might have a really tough time during recovery.

                Please understand that my comments are offered in the kindest way possible, from the perspective of someone who is 3 months post-op.

                Best of luck figuring it all out,

                Gayle
                Gayle, age 50
                Oct 2010 fusion T8-sacrum w/ pelvic fixation
                Feb 2012 lumbar revision for broken rods @ L2-3-4
                Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                2010 VBS Dr Luhmann Shriners St Louis
                2017 curves stable/skeletely mature

                also mom of Torrey, 12 y/o son, 16* T, stable

                Comment


                • #9
                  Hi Lily,
                  I had my surgery with Dr. Grauer about 18 months ago. My experiences with him and Yale were all positive aside from one bad nurse). I had my surgery younger so my recovery was faster than most on this board, but I thought I could try and answer some of you questions.

                  1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with?
                  I had family with me for the first two weeks (one in the hospital and one at home). I didn't need a ton of help by the time I was home. Before I left Yale, PT spent time w/ me to make sure I could sit up, roll, lay down, and climb stairs by myself. It helped to have someone around though to help me stay on top of the medications and to make sure I took them at the right times.

                  2. How long before I can shower?
                  My discharge papers from the hospital said I had to wait 7 days to shower. I was in the hospital for 7 days, so I was able to shower as soon as I got home. Dr. Grauer used some kind of surgical glue over my incision and it was ok to shower with it on.


                  3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4.
                  I was in the hospital for 7 days. The started preparations to send me home after 5 days because I was off of IV meds, I could sit, roll, walk, climb stairs, etc, but I started having a bad reaction to the meds at that point and got put back on IV meds so I had to stay a little longer. As soon as the got the medication situation sorted out, I went home. 4 days sounds pretty short though. Day 3 was the first time they really started switching to oral meds, removing the catheter, and pushing me to walk more than just a few steps. The transition to oral meds was tough and it took some time to get the dosages right.


                  4. How long was your surgery and how complex? The OR is booked for 5 hours.
                  I don't remember how long my surgery was, but 4-6 hours sounds about right. I was fused T3-L2. For my surgery, I did not have to wear a brace post-op.

                  I had a drain at the bottom of my incision site. I can’t remember exactly when it was removed, but I think around day 4/5ish. I definitely could have knit in bed the first few weeks. In the hospital, I spent most of my time in bed, listening to music, watching tv, or playing games on my iphone. I think I may have played a few card games with my family as well. I liked having my own throw blanket for the bed and my own slippers from home for walking the halls. Once I was home, I was definitely not in bed all day. I actually felt better being up and moving, I just got tired easily. I had no problem with stairs. I was walking around 2 miles once/day and other than that, I would go out and walk when my parents walked the dog and would get up to get food, go to the bathroom, move around. I felt worst when I was sitting a lot. I was ok if I got up and walked frequently and I was ok laying down.

                  Let me know if you have any other questions about Dr. Grauer or Yale.
                  Sarah
                  22 year old grad student
                  Boston brace from 12-14
                  surgery on June 1, 2009 T3 to L2
                  Yale New Haven Hospital Dr. Grauer
                  Thoracic curve 47*
                  Thoracolumbar curve 54*

                  Surgery Photos
                  http://www.facebook.com/album.php?ai...8&l=a2a5799140

                  Comment


                  • #10
                    Thanks guys - and Sarah I am really heartened to hear that someone else is familiar with Dr Grauer. Do you know if he used allograft, or what, for the fusion?

                    Gayle, I know what you mean and think I didn't really word it right. I've got chronic daily pain despite Celebrex and Tramadol max daily doses and weekly PT. My curve is progressing at about a degree a year, but I currently have no respiratory distress.

                    I think what I mean is that ultimately, I will never really know how bad it will be if I don't do the surgery; I could be 60 without the surgery and be the same as I am now, or I could be 60 and rolled up like a potato bug, unable to breathe or walk or look up. Nobody can predict what exactly will happen. The surgery is first and foremost to stabilize my spine. I think I have about a 50/50 shot of pain relief (my pain is all lower and due to muscle fatigue on the exterior side of the lower curve, as well as my compensation. I am extremely well compensated such that both surgeons and my PT have all said that just looking at me, they would have never guessed how bad my back is).

                    I can't really see beyond the terror and fear of the surgery. I'm depending on my husband, family and friends to get me there, and having never been one to depend on others, this is incredibly hard for me. I don't feel confident that I will feel better and be pain free, but I do feel confident that time is my enemy, and that I have no choice but to do this as soon as possible to avoid additional degeneration and subsequent fusion.

                    I hope that makes sense and I take no offense at anything you said - it is well reasoned.
                    Female, age 38
                    4 years of bracing, concluded at 42*upper/38*lower
                    currently 64*upper/40*lower
                    Fused T3-L4 on Feb 23 2011
                    now 32*upper/18* lower

                    Comment


                    • #11
                      Lilysaidwhat,

                      Given your great fear of paralysis, you should ask Grauer if he uses real-time nerve monitoring. I think if he does this would ease most or all of your anxiety over this issue.

                      Both my daughters had the monitoring and it is my understanding that the advent of this monitoring has played a large role in reducing permanent nerve injury to truly tiny numbers. When they get an indication that a nerve is being impinged, they back off. I have read one account of a surgeon correcting a huge curve in a child where they closed hm up and abandoned the surgery based on this nerve warning. In most operations, I am guessing they just ease up or wait or try something else and finish the procedure without nerve injury.
                      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


                      • #12
                        My surgeon uses the spinal cord monitoring and he also wakes his patients up to check on feeling. I don't remember it, thank goodness.
                        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


                        • #13
                          Dr. Grauer said he used mostly donor bone and some bone from the spine (I guess he said it was obtained through the surgery anyway so they use it...or something like that). I believe I had the real-time nerve monitoring. I know I had one person whose only job was to monitor all of that stuff. I met her the morning of my surgery before I went in. I don't remember much, but I know she drew some marks on me to mark the places she would attach equipment and talked about it with me.
                          Sarah
                          22 year old grad student
                          Boston brace from 12-14
                          surgery on June 1, 2009 T3 to L2
                          Yale New Haven Hospital Dr. Grauer
                          Thoracic curve 47*
                          Thoracolumbar curve 54*

                          Surgery Photos
                          http://www.facebook.com/album.php?ai...8&l=a2a5799140

                          Comment


                          • #14
                            Good that Grauer uses spinal monitoring and doesn't seem to use iliac crest as a bone donation site.

                            I was with my kids in prep-op when they were gluing the electrodes on and was able to talk with the doctor who would monitor them during the surgery. It was the same woman for both kids though their surgeries were about 19 months apart. I assume she is good at what she does.
                            Last edited by Pooka1; 01-17-2011, 07:57 AM.
                            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


                            • #15
                              Hi Lily,

                              It is a daunting surgery to anticipate, and I found the anticipation to be worse than the event. Although the event is no walk in the park, at least you're dealing in the present reality and not imagining all sorts of scary things.

                              I went into this with pretty much the same feeling about it -- feeling very frustrated that I didn't have a crystal ball to see how I'd really be in 10 years. The fact that it's considered elective surgery blew my mind and I always said I would have felt better if it were something life-threatening.

                              Eventually I came to the realization that with or without surgery, I would never have a "normal" spine, and that at least with surgery, I would have a better chance of stopping the progression and lessening the pain. That's the way it turned out for me, so I'm glad I had it done.

                              It's tempting to think that if you leave well enough alone everything will be okay -- when in fact if your curves are progressing, you will almost certainly run into increasing pain and deformity.

                              Just in the time that I've been on this forum, the surgeons seem to be getting better and better at this, with less-invasive techniques and faster recovery times. You'll do great!
                              Chris
                              A/P fusion on June 19, 2007 at age 52; T10-L5
                              Pre-op thoracolumbar curve: 70 degrees
                              Post-op curve: 12 degrees
                              Dr. Boachie-adjei, HSS, New York

                              Comment

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