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Help - daughter 3 mos post op - still in pain

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  • Help - daughter 3 mos post op - still in pain

    I need your help. Does anyone know of anyone that has not recovered quickly from the surgery? It seems like everyones children have had great recoveries. My daughter is 3 months post op. She is still having quite excrutiating pain. This is pretty much constant. (not as bad of course as when she first came home but bad enougth that 5mg. Percocet does almost nothing.) She says it feels like someone is inside her "pinching" and "pulling things" She had anterior surgery. She also has chest pains and says it hurts when she breathes. She is in more pain when she breathes deep. She is still on Percocet, which she take twice a day that helps a little bit but not enough to be able to function normally. She is 17. She is still not back in school yet - doing homebound. She wants nothing more than to feel good and get back to school. There is no way she can go back at this point because some days she can hardly move, and others she has to lay down because of the pain after only a couple of hours. We have gone to the mall and on walks, but if she does that she is right home and in terrible pain after that. Her surgeon says that "only adults ever have pain after 6 weeks - kids her age never do" and told me to stop giving her the pain medication (which our GP prescribed and the surgeon was very unhappy about that) and just tylenol sometimes. She is getting very depressed not and franlky is a mess! She is also angry with the doctors for not taking her seriously. They are not checking to see of anything could be wrong, and are not also not assuring her that this could be normal. Just basically ignoring her symptoms and acting like they couldn't possibly be real. The side of her incision around her abdomen is swollen still also. Is this normal. It is very tender and you can't even go near her and she flinches. Can anyone please help????? We feel like no one will help us.

  • #2
    Get a second opinion! Getting the brush off from your daughter's surgeon is unacceptable. She's almost right. Kids almost never have pain 3 mos. postop. But, some do. There could be nothing wrong, but I'd want to be certain.

    --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

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    • #3
      I agree with Linda. This *may* be normal, but you need to know for sure. Her symptoms could mean something more serious. Not being able to breathe well isn't good. She needs help from someone who will listen. I hope you find good answers for her soon. It's hard to be positive when the pain gets in the way of your thinking clearly. Good luck to you.
      Carmell
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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      • #4
        Originally posted by LAL
        The side of her incision around her abdomen is swollen still also. Is this normal. It is very tender and you can't even go near her and she flinches. Can anyone please help?????
        I don't think the incision site should still be swollen, I don't think my daughter's site was ever that tender, and especially three months out. I'd get to a doctor who listens to your very valid concerns. pat

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        • #5
          Yes, you should take her for a second opinion. I don't remember having much pain at 3 months post-op.

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          • #6
            Your daughter may be a "kid" by age standards, but she is closer to being and adult. Compared to me, she is young, but I bet there is something else (perhaps infection) causing the pain. My dughter is 2 years post-op and she still has pain sometimes. Mostly from overdoing things. For me, after 3 days on morphine, I was not given any more pain medicine (my father worked in law enforcement and didn't want to see me get addicted to pills.) Get a second opinion!
            T12- L5 fusion 1975 - Rochester, NY
            2002 removal of bottom of rod and extra fusion
            3/1/11 C5-C6 disc replacement
            Daughter - T7 - L3 fusion 2004

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            • #7
              LAL, I would definatly get a second opinion for your daughter. At 3 months post op discomfort can be expected, but she should be able to return to school, etc. If she is still in pain it needs to be addressed. After my first surgery I was in the same place as your daughter, I had a posterior surgery and after my first week out of the hospital I knew something was wrong. It turns out that I had pneumonia and ended up in the ER, but was able to clear it up with antibiotics. I also had some other set backs, but thought that it would get better with time. At 2 months post op (kinda long) I went back to school half time and it was really exhausting. By the time I had finished 1 period I was ready to go home and sometimes after 3 periods (my school had 8 periods) I couldnt take it anymore. The pain never went away, there was a constant pain in my back by my ribs and I felt helpless. Like your daughter I continued to be on heavy painkillers and tired easily. Luckily my surgeon addressed these issues with me and after months of thinking maybe it is just healing, maybe it is this, maybe...we figured out that my instrumentation was aggrivating me and took out the right rod since that was the only side I ever had pain on.
              Your daughter is old enough to know when she hurts, where she hurts, and how bad she hurts. A doctor can not tell her that she does not or should not hurt and if they do they are sadly mistaken.
              I hope that she starts to get some relief of pain soon. I know that it is hard to function when you cant do regular activities, sometimes even hard to think through the pain. Hope she can keep her head up.
              Feel free to email me, my email address is luv2icesk8lots(AT)aol.com (replace AT with @).
              Mandy

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              • #8
                Thank you for all of your replies

                Thank you for all of your replies. I have been taking her to a family doctor because the surgery was done out of town but he really doesn't know anything about the surgery. Other problems have also come up like excessive hair growth (dark, thick) covering her entire stomach and abdominal area (she never had any of this before). It is a bit thicker closer to her incision, but really all over and growing in a pattern like a man would have. This just started about a month ago. I don't know if its related to the surgery or not, but it seems her hormones have also gone haywire. The family doctor tested her tese toterone level and T3 and T4 and they came back within normal range. She is in a post op brace which she was supposed to wear 3 months. The surgeon did add on another month of wearing the brace saying the fusion is not "as far along as he would like". She literally cannot function with the pain she is having.

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                • #9
                  Hi...

                  Check out hirsutism:

                  http://www.emedicine.com/derm/topic472.htm

                  --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


                  • #10
                    hair all over?

                    I suggest seeing a gyn doc and a endocrinologist to get at the root of it. (No pun intended).
                    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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