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  • Saw Ortho Yesterday-3rd Surgery Needed

    Let me start from the beginning. I saw my ortho in July and found out that I herniated a disc between L4-L5. I had 3 steriod injections to see if those would help with the symptoms at all (and they didnt) so I went for follow up yesterday with my surgeon to discuss other treatment options.
    I will start by saying that I am kinda frustrated with his PA's because they are kinda off their game right now. They (there are 3 of them) all thought my herniated disc was something else and that it would spontaneously resolve itself. One of them came in yesterday and just wanted to leave it for awhile longer while I can barely function. I have seen the physical SIGNS of curve progression that I noticed on myself before the first surgery so I asked about an x ray (which I had not had since May so didnt think it was totally unreasonable) and he finally went and got the doctor. He didnt think I needed it because i "looked symmetrical" but did one anyways because I felt that I needed it, and sure enough my curve had gone from 20* to 30* below the fusion.
    It is now clear that there is narrowed disc space on the right (the side of the herniation) and that the only option is surgery for both the curve and the hernitation. He wants to extend my fusion that stops now at L2 down to L4 doing a complete discectomy at the L2-3 levels and L3-4 levels and a partial discectomy between L4-5.
    My biggest fear is being a college student and the amount of time recovery takes. My last surgery was a hardware removal and the recovery was really short. I was able to drive to school where I lived in the dorms and go back to bed and rest after each class. This year I transfered to a different school that takes me an hour to get to and then there is the length of the class itself. With my first surgery I had some complications and wasnt able to go back to school for 2 months (and even then it was only half time). I want to wait this out till next summer, but dont know that I can live with the pain that long. If I do it at christmas I face not being ready to go back to school and totally burning out.
    I am totally overwhelmed right now. I was honestly expecting another surgery as the day got near (I knew the pain feeling all too well) but did not want to admit it and would try anything to avoid it. In the meantime I am going to begin taking Celebrex along with the Norco I am already taking and see if that is able to control the pain while working my way down the Norco. My doctor is also giving me a brace to wear so that I can keep the symptoms under control as long as possible. Now the hard part is getting my insurance to pay for it.
    Sorry for ranting. I know this is kinda long. Any thoughts on timing or past experiences would be great. I dont want to put my education on hold, it is the most important thing and is what i schedule around.
    Mandy

  • #2
    Hi Mandy,

    I understand the dilemma you're in. I will share my opinion but that is only what I think and you think about it for yourself and do what you think is best, of course.

    I think waiting until next Summer can make the situation not only painful for you, but can the curve get a lot worse, according to your ortho? I would think about that. If not, and these new meds can help your pain, then maybe you can consider getting surgery then. I know school and your education are very important, but health comes first and if you really don't feel like you can go on until the Spring/Summer, maybe you should consider getting this done earlier. I don't know more about your school sitaution, meaning if you can postpone your studies by one semester(next Fall instead of this Winter).

    Take time to think and take care, and keep us posted.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

    Comment


    • #3
      I understand what you are saying. I would consider postponing my studies if I ABSOLUTELY had to, but one requirement to stay on my parents insurance is that I HAVE to be in school. Bitter sweet. It isnt a rule from my parents but of the actual insurance company. I dont know if they give exceptions after major surgery, but after surgery I definatly dont want to be kicked off when I need it (I cant work full time and go to school full time enought to get benefits).
      I definatly dont want to live like this for a year because it is hard for me to walk distances and I avoid doing things that a "normal" 19 year old would do (I dont like to go to amusement parks and walk around, instead I rent a wheelchair or I will be bedridden for a couple days). My back goes "out" often but that is something that I have learned to cope with and usually just grin and bear it. I want my leg and foot to wake up from this awful sciatica type pain that I have from the herniation. My surgeon didnt say how much he expected it to progress (or if he did expect it to progress) but his original opinion of my lumbar curve was that it was compensatory and in fact, after the first surgery it had a good correction and derotation. It was not until now that I had the progression (and he relabeled it as structural, wishes he could go back and label it as double major instead of just a major thoracic curve).
      I am going to talk to my mom tonight and see what she thinks is best (I know that she will have good insight because she is a teacher). and I am also thinking of scheduling an appt with my school counselor to decide when would be the best academically to have the surgery.
      Ok, I am rambling again. Thanks for your insight sweetness.
      Here are my x rays from about 3 months post op (first surgery) and my appt yesterday. I was shocked at the diff.

      Comment


      • #4
        You're not rambling on,

        I see the difference. Did he say that having one of your rods taken out could have made the curve increase(at least not helped the curvature)?

        I wonder how long you have off at Christmas time, b/c you're young and even if it takes months to get over the nerve pains, the initial healing is mostly done in the first month or so, and with pain killers you could maybe go back to school and not worry about it too much, that's something to think about.
        Last edited by sweetness514; 10-06-2006, 02:27 PM.
        35 y/old female from Montreal, Canada
        Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
        Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
        Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
        Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

        Comment


        • #5
          He said before that removing one rod would not affect the curve, but did not say anything about it yesterday.
          I think my christmas break is about 4 weeks. I am not exactly sure as this is my first year at the new school. I must be able to drive when i go back to school (meaning look over my shoulders as well) and this will be a lower lumbar fusion. That is my main concern with school. My complications before were mainly pulmonary (lord willing they will not even touch up near my ribs again).

          Comment


          • #6
            That's another question I was going to ask-how long would the incision be and how many vertebreas exactly they would work on, but seriously if it's only lumbar, that can be quicker to heal from, instead of lumbar and thoracic.

            What I noticed with my surgery last year was that the fact they opened me up even more was what was hard to recuperate from, the stiffness and scar tissue. I was opened from T4 to L3.

            You sure are mature for your age and I know you're dealing with it in the best possible way right now, but even so I know how it must be frustrating to know you have another surgery to go through but hopefully this will really help with your pain. I hope you make a decision you can find peace with and keep us posted.
            35 y/old female from Montreal, Canada
            Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
            Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
            Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
            Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

            Comment


            • #7
              At this point he thinks he can just extend the fusion without opening the whole incision from the previous surgeries. My current fusion is from T4-L2 and he wants to extend it to L4. He thinks that like my current fusion he can get away with just one rod (or at least I think that is what he said) but I dont know what that would mean for increased movement in that area, etc. Also, if he doesnt replace the old rod, it seems like there would be a gap in the 2 rods between L2-3 which would concern me because that is where he wants to do a complete discectomy and i dont want a non-union. I put that on my list of questions to ask at my next appt with him.
              I definatly think that only having 2 or 3 vertebra fused will be a shorter recovery than my original 11, I just cant get this thought from my head. He also said that he would do his best to not open the whole thing by derotating the lumbar, but would replace the old if he had to so it seemed like he hadnt fully decided. I didnt really give him a chance to think about the surgery before I went to the appt though. Oh well. I will pray for the best, minimal surgery.
              Mandy

              Comment


              • #8
                Hi Mandy,

                I think I got on and off this post about six times. It affected me that much. I just have to chime in.

                You are in a very tough position, but Sweetness is able to give you the best adivce. She's wise and she's been through it!!! It's hard to make the decision that you have. Education or health!!! There's probably a way you can have both, at least I sincerely hope so. I truly think it's a damn shame that the Insurance company decides your promising future!!!

                I'm obviously insurance stupid, but there has to be someone out here that can find a way to help you through this!!! It pisses me off that a young, intellegent person like you, that's wants an education to better themself, has to choose between your health or your education. What's wrong with this picture!!!

                Shame on our system,
                Shari

                Comment


                • #9
                  Originally posted by CurvySAT05
                  At this point he thinks he can just extend the fusion without opening the whole incision from the previous surgeries. My current fusion is from T4-L2 and he wants to extend it to L4. He thinks that like my current fusion he can get away with just one rod (or at least I think that is what he said) but I dont know what that would mean for increased movement in that area, etc. Also, if he doesnt replace the old rod, it seems like there would be a gap in the 2 rods between L2-3 which would concern me because that is where he wants to do a complete discectomy and i dont want a non-union. I put that on my list of questions to ask at my next appt with him.
                  I definatly think that only having 2 or 3 vertebra fused will be a shorter recovery than my original 11, I just cant get this thought from my head. He also said that he would do his best to not open the whole thing by derotating the lumbar, but would replace the old if he had to so it seemed like he hadnt fully decided. I didnt really give him a chance to think about the surgery before I went to the appt though. Oh well. I will pray for the best, minimal surgery.
                  Mandy
                  I'm not a doctor, and I don't want to give you advice in the sense that I know what you should do, but I know one thing is that since you will be having surgery again, make sure you are SURE that he's doing the right thing-in the sense of what to do so you don't have surgery again in a year. The thing about my ortho is that he also said that if my fusion was solid, no need for rods, or he could even just replace the big one with a smaller one. I have read many things on this site to know to trust myself and that's it, just like you knew you had to see what was wrong with your back, even if they didn't think there was anything wrong. A lot of doctors are like that, they worry only when they see something wrong and until then they tell us not to. So I told him to replace everything and he did what I asked.

                  having thought about it, I would wait until you can get the best surgery you need to, and remember hardware is the only thing that makes a fusion solid. If you have to wait until next Summer to figure it all out, maybe that's wiser. I also wanted to seek many opinions and I did. You should take your time, ask questions and think about what's best, but remember that even if surgery is no piece of cake it is MUCH better than the first one and you will heal quicker from it.

                  Hope you get the answers you need, we're all thinking of you, and take it a step at a time, don't rush it.
                  35 y/old female from Montreal, Canada
                  Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                  Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                  Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                  Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                  Comment


                  • #10
                    Hi Mandy...

                    I'd like to encourage you to get a second opinion. If your .jpgs are labelled correctionly, it looks to me like your curvature has returned since your rods were removed.

                    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


                    • #11
                      As for the school part...

                      This might not be true of Canadian schools, but my college allowed students to remain enrolled and simply take a "sabattical" for a semester for things like this. I would think your school would work with you to make sure your insurance needs are met as well as your health needs. At the very least, you could enroll in one class, making yourself a part-time student, and perhaps speak with the professor about an ammended attendence schedule for you. I had numerous professors who were more than willing to work things out with me for health issues like this. Also, does your school offer online courses? Maybe you could take those and thereby remain enrolled.

                      Comment


                      • #12
                        have courage

                        Good luck to you. A/P surgery is not easy. YOu need to get your doctor to be straightforward with you about the recovery period. Youth is certainly on your side. My first fusion was from t-2 to t-11 in 1969. Without rods, I had to stay flat in a total body cast(plaster in those days) for 6 months and then it was cut away from my neck and shoulders and I was allowed to walk again, but for 3 more months I wore a cast. That was my junior year in high school and I went to classes via a telecommunication device-very obsolete by today's standards. A classmate carried a voice communicator to classes with her and plugged me to a wall socket and I could hear class discussions fom my hospital bed at home. One day a substitute almost gave the whole class detention because when she took attendance she couldn't figure out who the ventriloquist was answering to my name. Of course my classmates wouldn't let on, they just laughed like crazy. Finally she ripped my communicator out of the wall. Anyway, when I was 23 and in college, I discovered my lumbar had curved and broken. So I had T11-S1 fused and a rod inserted. It was much nicer to get up and go after that surgery. The rod had to come out a year later. I was okay for about 7 years. Then, as you said, "I knew from experience" I started suffering from substantial pain, leading to a complete refusion of T11-S1 and anterior fusion L2-L5. No rods were used and I had a very, very long recovery. Again I wore a full body cast for 9 months and used a cane for about 18 months. Then guess what...in 1996 more refusions, rods inserted in the lumbar area, and discectomies L2-L5 for the second time. Last month I finally had those rods removed because screws were impinging nerves for the past 10 years and I was over it.
                        I know what it's like to dread going to the doctor and hearing the bad news. I know what it's like not being able to finish college. Not being able to hold your 2 year old child in your lap. Not being able to live you life the way your friends do, the way you hoped to, or even the way it was a month ago. But a lifetime fraught with painkillers, limited activities, and disappointments taught me to say this:
                        "Take care of yourself. Unfortunately this is the only body available to you, it's up to you to take care of it to the best of your ability. Do not stress yourself with insurance problems or school breaks. Take time to seek a second opinion. Understand exactly what is going to be done and prepare yourself to dedicate the appropriate amount of time to your recovery. Presently I am fairly well fused T2 to Sacrum and out to both iliac crests. I have scews securing L5 to my hip bones, but no guarantees for the future. Try to keep in mind that surgeons are not gods. They don't always know what to expect themselves. I have met VERY GOOD doctors and VERY BAD doctors. Follow your instincts. Have Faith. Walk softly and carry a big stick.
                        Jeralyn is Queen!

                        Comment


                        • #13
                          Originally posted by JERALYN

                          I know what it's like to dread going to the doctor and hearing the bad news. I know what it's like not being able to finish college. Not being able to hold your 2 year old child in your lap. Not being able to live you life the way your friends do, the way you hoped to, or even the way it was a month ago. But a lifetime fraught with painkillers, limited activities, and disappointments taught me to say this:
                          "Take care of yourself. Unfortunately this is the only body available to you, it's up to you to take care of it to the best of your ability. Do not stress yourself with insurance problems or school breaks. Take time to seek a second opinion. Understand exactly what is going to be done and prepare yourself to dedicate the appropriate amount of time to your recovery. Presently I am fairly well fused T2 to Sacrum and out to both iliac crests. I have scews securing L5 to my hip bones, but no guarantees for the future. Try to keep in mind that surgeons are not gods. They don't always know what to expect themselves. I have met VERY GOOD doctors and VERY BAD doctors. Follow your instincts. Have Faith. Walk softly and carry a big stick.
                          Jeralyn,

                          I have read many posts and I have been moved before from just about everybody on this forum, but I can honestly say that no truer words have been spoken and I am deeply touched by everything you have said, and hope you have good health in the future as well
                          35 y/old female from Montreal, Canada
                          Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                          Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                          Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                          Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                          Comment

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