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5 weeks post op - shoulders question for those who are fused high up around T3

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  • #16
    JenM,

    I am so sorry you are having this neck pain. I thought about you when I first woke up this morning because my neck was hurting (just my neck--no fusion yet). Anyway, I think I identify with you because our kids are close to the same ages, and I know you must be pushing yourself to do things because you want to get back to helping those kiddos. BUT, you have got to let yourself rest. Do not compare yourself to other people. I know JSully is doing a lot of stuff (and that's awesome, Janet!), but everyone is different, and every surgery is different--even when the levels are similar. I was encouraged by the fact that you said your neck is normal when you wake up: That means rest/lying down is helping it. I would try to do that as much as possible except of course for the exercise that you need. Sending good thoughts your way--it sounds like from what everyone says, this too shall pass!

    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


    • #17
      my fusion is from T4 to L2 my shoulders only hurt a few days after surgery around 3 days
      Kara
      25
      Brace 4-15-05-5-25-06
      Posterior Spinal Fusion 3-10-10
      T4-L2
      Before 50T
      After 20T

      Comment


      • #18
        Thanks everyone for responding. I really appreciate your posts and stories. THe other night the pain in my right shoulder/pectoral muscle was so bad. It was the worst pain I have ever had in my life. I was in the hospital for scoliosis surgery in June and that pain in the hospital didn't even compare to my right arm pain. I was crying so hard I didn't know what to do. I couldn't even position my arm in any way so the pain would go away. The ice didn't work and the heat didn't work. My husband was at work and this was at night and I had to put the kids to bed myself. It was a bad situation since they saw me in so much pain and crying. They looked so concerned and I don't blame them. (sorry for the sob story, just hope no one will ever have to go through this much pain after their surgery). I mean I am almost 6 weeks post op. Shouldn't this shoulder/pectoral muscle pain go away soon? My physical therapist says I'm doing tooo much since it's my right arm and I'm right handed. I honestly don't even think I'm doing too much. I take 3 naps a day! So I'm going to try to stop doing alot of activity and increase the rest I am getting. I have 2 small kids, my one just turned 3 in July (and she needs help doing everything) and my other kid is 5. That's probably why i'm still in alot of pain 'cause I need to help them do things.

        I'm trying to hang in there. THings have to get better.

        Thanks for your support.

        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


        • #19
          So sorry to hear of this. The part about having to put your little children to bed is the worst. As a mom. I can just imagine!

          I wonder if your arm pain could like Debbei who posted about it recently. She said as I recall that it came on some time after surgery and was related to the position they'd put her arms in during the long hours of surgery (above her head). Makes sense to me. Hers went away w/ PT - again AFAIR.

          Might be worth asking her about it.

          Hang in there. By your left arm only, I guess. Poor dear Jen. So scary.
          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

          Comment


          • #20
            Jen-- I think I hadn't read (or had forgotten) about ALL that you are doing when I initially posted. You have had such a major trauma done to your body, and it needs to heal. If you are trying to do normal housework and take care of your children, which I'm sure your heart and your mind are saying you need to do, then that is too much. Is there a family member that can come and stay with you for a little while and help do the work part? You really need to heal-- and you could still cuddle with the kids and read stories and things like that. Or if finances can manage it, could you have someone come in to do housework and laundry once a week or something? Or could your husband? You might need to have a heart to heart talk with yours, if you are not improving soon, and explain that it is just too much for you, and your body is not getting better because you need to let it rest and recover. Not because you don't want to do the work, but because it needs all your strength just to heal. My husband worked his full time job and he fixed our meals and did the laundry and housework (yeah, not the greatest, but it was fine...) until I was able to resume doing those tasks. You might think about that. It's amazing how much energy it takes for your body to recover and heal. Best wishes.
            Last edited by Susie*Bee; 07-17-2010, 09:00 AM.
            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


            • #21
              I have a 20 year old babysitter come to my house 3 days a week (for 8 hours). She comes in, takes care of the kids, does all the laundry, cleans up the toys at the end of the day, and does some light cleaning around the house. She even drives me to physical therapy (which is an added plus) and drives my son to camp during the day. She is wonderful. The 3 days she is at my house she makes me breakfast and lunch. The only thing is that she leaves at 5pm so then I have to prepare dinner. My husband is useless when it comes to laundry, housework, etc. He can't cook either. It makes me so jealous when I read about the husbands who get more involved and cook and clean. Mine does none of that. Then I have a cleaning lady who comes to my house 1 time per month. So I do have help. Then on the other 2 days, my mom and sister take my kids all day and bring them to the pool club since it's summer.

              Anyway, susiebee, I was wondering, did you have this arm/pectoral/shoulder pain at around 6 month post op? I am wondering if the shoulder pain has anything to do with the fact that I am in a neck brace and without it my chin is basically on my neck. So it could be pinched nerves from the neck radiating down my arm.

              I hope it gets better!

              Jen
              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


              • #22
                Yes, I still had a lot of tenderness in that area. I don't remember if it was actual pain or not. I did not have the neck issue. It does sound like you have a lot of help.

                If it could help any, when I started back to work many years ago and my kids were old enough, I posted directions on how to do the laundry (and other basic jobs around the house-- how to dust, how to do the dishes, etc.) in very simple terms so that any idiot could follow them... My hubby said he used them as he did the laundry... I'm sure yours could learn to turn the oven on and heat up a frozen dinner or order up a pizza-- or do a little grilling. Most kids like hot dogs... Maybe you could push him a little to help; just do it gently. Take care!
                Last edited by Susie*Bee; 07-17-2010, 04:52 PM. Reason: adding on...
                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


                • #23
                  I know that when I have my three littlies (grandaughters, just turned 2, 4 and 5), I never stop. I could not have managed them until at least 6 months post op. Even with the help you have, which is great, there are still times you have to do things yourself, and even this might be too much given your neck and arm problem, which does sound a bit like a pinched nerve to me. Did you contact your surgeon/gp about that severe pain you had/are still having?

                  I think a little gentle urging to your husband might ease the situation up on yourself, if at all possible. Maybe some time off work in the form of annual leave?

                  But it IS still early days for you and this should improve a lot in the next 6-10 weeks, but some healing time now sounds to be in order. Easy for me to say, I know.

                  Has there been any improvement with holding your head up since you began wearing the neckbrace?
                  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


                  • #24
                    Uggh. I feel for you JenM. I have been there with having to put the kids to bed when I have an awful stomach flu or a couple of times mastitis when I was nursing my daughter. It SUCKS--and that wasn't major surgery.

                    Thoughts: Could you have your sitter come a half hour later in the morning, so she could leave a little later and put dinner in the oven? We sometimes use one of those Dinners by Design type places where the dinner is basically made and in the freezer. Expensive, but it might be worth it for a while.

                    Also, is it possible your drooping neck and shoulder/pec pain are related? I'm thinking I would be on the phone to the surgeon about this again. It doesn't seem like your pain should be WORSE at this point. UNLESS...are you not taking enough pain medication? Maybe this should also be talked about with your doc.

                    Anyway, I hope you are well stocked up on Diego/Dora, etc. videos and using them--without guilt. As someone said on a different thread, this is the time to take care of MOM, so you can take care of them later. Hang in there -- and keep 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


                    • #25
                      Not to create family tension, but I just posted about this in the kyphosis thread running (though I edited out a good deal, as it was getting too long). The bottom line here is that if we don't take every precaution now, regardless of cost pretty much, those we love are apt to end up with far more burdens down the road from our inability to remain independent.

                      It's awful to look at someone like you who by one standard has so MUCH help already! But maybe it's not enough. And remember too, this initial healing period which is so crucial is (only) a matter of months for most of us.

                      But the potential cost down the road, of missteps ...in more surgery, in our pain, in our children's health (mental and physical), of a spouse's worry and lost work time...What else are savings for?

                      It takes adopting the long view - and much of it IS precautionary. The risk is incalculable, though. The future comes sooner than we think - speaking as someone who (with a little more bad luck) is now having to explore painful cost:benefit calculations about nursing home care.

                      God forbid, certainly! But God doesn't forbid as much as S/He ought to, in my observation... The time just flew and those little ones I was prioritizing over my health are now young adults still needing to focus on their own life challenges. You're not doing anyone any favors to pretend these long term risks aren't real. At the very least, if things aren't optimal, we want to be able to look back and know we didn't cut corners. As Ed says "we only get one chance to do it right".

                      This is true of raising children, yes, but of our own survival too. How can we separate between the two, ultimately? They need us to be there all the time. That includes not having to worry about us later on too. Later on being now, for my sons.

                      Hopefully, not in our future though - not for a long time, anyhow. No one's body lasts forever.
                      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

                      Comment


                      • #26
                        Hi Jen...

                        I'm so sorry this has gone on so long.

                        I had a lot of shoulder blade pain after my surgery, and found it very frustrating. I don't, however, think it was as severe as yours. I did find that any activity that caused me to move my chin toward my chest aggravated the pain.

                        I wonder if you can figure out a way to really relax and recover for a week. If you get really inactive for a decent amount of time, it might tell you whether there's something really wrong, or if you're just trying to do too much too soon. Would it be possible to get some friends to make some meals for the family? And, get your husband to at least take care of the kids at night, and get them into bed. If the house gets dirty or cluttered, so what?

                        If you do nothing but care for yourself (and take some walks) for a whole week, and your pain doesn't get any better, I think it would then be time to call Dr. Boachie's office and get someone to see you. When pain borders on unbearable, it's time to act.

                        I hope you get it worked out.

                        Regards,
                        Linda
                        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


                        • #27
                          Jen--
                          I feel so bad for you. I was lucky to have lots of support from my husband, my grown daughters and friends who took turns bringing in meals twice a week. They came up with a system. I could not have done it alone at all for many months. I still find picking up my little grandson a strain when I do get to see him. Having 3 little ones and trying to do this even part of a day is way too early in your recovery. I think Linda and others brought up some good ideas. Just a thought--did you and your husband read the D. Wolpert book--I can't think of the title right now. It would drive home the gravity of the surgery and importance of recovery. Good luck to you. Janet
                          Janet

                          61 years old--57 for surgery

                          Diagnosed in 1965 at age of 13--no brace
                          Thoracic Curve: 96 degrees to 35 degrees
                          Lumbar Curve: 63 degrees to 5 degrees
                          Surgery with Dr. Lenke in St. Louis--March 30, 2009
                          T-2 to Pelvis, and hopefully all posterior procedure.

                          All was posterior along with 2 cages and 6 osteotomies.

                          Comment


                          • #28
                            Hi, Jen.
                            I'm really feelin' for ya. I have grown kids, two still at home, almost 18 and 20. However, I also tend my grandson, almost 2, full time. I had a mild meltdown today because I don't feel like I get the help I need around my home. I'm just wondering if I will be in your same predicament when I have my surgery. I'm doing a LOT of things right now that are aggravating my pain and the doc is pretty upset with me AND my family for not helping me more. I'm trying to plan ahead and get all the canning done. I'm making recipes and canning them for "future" use. Is there any way that you can survive on TV dinners until your arm and shoulder feel better? I know with little ones, you are on the go, no matter what AND it's hard to be away from them. My hubby doesn't cook either, so when my big day comes they better be happy with easy, easy, easy meals out of jars and out of the freezer. The hard thing about this surgery, as I'm learning, is that the healing time is sooooo long. Families need to learn to understand that you are not all better after a week or two like most surgeries. Is there any way that you could get your hubby to understand how difficult this is for you and at least learn to throw in a frozen pizza or lasagna or something so you don't have to? Also, is your 3 year old potty trained? Changing diapers for me can be difficult when I'm in pain. Also, potty training is so difficult, too. It seems that when they are this age, they tend to hang on your neck a great deal during potty time, like when pulling pants up, etc. Maybe you can take note of some of these things that you may not even be aware are hurting you, then address them and get some help or make alterations in how you are doing things. It is nice that you have the help you do, but with little ones and a hubby gone at night, is there someone who can stay with you, at least when you are having a bad night? Sorry if I'm rambling. I'm just trying to come up with some things you might find helpful. I hope you feel better soon!

                            Rohrer01
                            Be happy!
                            We don't know what tomorrow brings,
                            but we are alive today!

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