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  • #16
    Originally posted by Pooka1
    It further seems to me that certain folks do NOT believe this is his "usual" patient experience and think he is deliberately misrepresenting the "best case" as his "usual" case. I guess they get that from comparison to their experience but I think what we have to compare is other examples that are as close to my daughter's as possible, not random cases out there.
    Sharon, I have said nothing different than others, so enough with the "certain folks".

    I never said he was "deliberately misrepresenting" anything, and I find it very strange you'd say so.

    If he is a scoli surgeon he would certainly have "usual" cases, but you have never said he is one. That unanswered question ("Is he?") is the ONLY thing above that wasn't also written by someone else.

    And (although I'm sure you don't see it that way) your limited exposure to - and understandably miniscule knowledge of what constitutes - typical, atypical, or "random cases" is exactly *why* people here (including myself) have willingly spent their time attempting to answer your questions.

    Best of luck to you.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

    Comment


    • #17
      Hi Sharon,
      Perhaps you could talk to some of his other patients who he thinks are similar to your daughter's situation? For me, this was VERY helpful in preparing for my son's surgery.

      I think most doctors don't really know the details of what goes on once patients get home - they get a brief rundown at the 1 month or 6 week follow-up, but most of that time is spent with the dr answering patients questions - not discussing in detail their recovery so far. Just an idea.............
      And we all hope your daughter has a very fast recovery - even quicker than "average"!!
      -Cara
      Cara, Mom to Nathan
      Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
      Boston Back Brace 8/07 – 12/07
      VBS 12/10/07 Boston Children's Hospital
      Dr. Hresko
      40 Degrees before VBS
      11 Degrees now!! (2012)

      Nathan's VBS Video

      www.vertebralstapling.com

      Comment


      • #18
        Hi ladies,
        Just thought I'd throw in my 2 cents.....Maria, Pam and Mary Lou have made some great points. My son was in no position to return to school 3 weeks after his surgery. Having just gone through this surgery with my son 3 months ago, it's still quite fresh in my mind. Once I saw what he went through, returning to school was the LAST thing on my mind. I wasn't sending him back until he was 100%. His health was my ONLY priority. This surgery is HUGE and and if your surgeon has suggested that 3 weeks is the average for returning to school, I find that to be overly optimistic. Chris started his tutors at 3 weeks and he was wiped out after a 2 hour session. Certainly some kids might be ready to return at 3 weeks, but the average seems to be 4-6 weeks. I contacted his school prior to the surgery to set up homebound instruction which he was entitled to after being out for 5 consecutive days. He was entitled to 10 hours/week - 2 hours per subject. Quite frankly, he did better with the one on one instruction because he couldn't fall asleep like he would normally do when he was in school. I also found that Chris' teachers were very lenient with him and let some things slide. It also doesn't hurt to show them the scar.

        Sharon, if I remember correctly, your daughter is middle school age. Something else to consider is getting permission for her to leave class 5 minutes early to avoid the crowded halls and getting an extra set of books for home. Also, you want to make sure that she is accomodated during fire drills and other evacuation drills.


        All the best to you. I will keep your family in my prayers.
        Lori

        Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
        Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
        Dr. Flynn is an AMAZING surgeon!

        Comment


        • #19
          Originally posted by mariaf
          Hi Sharon,

          I"m not sure that anyone thinks he is deliberately misrepresenting things - I certainly doubt that he would do that deliberately. That's why I used the Dr. Betz comparison. I think when Dr. Betz said to me regarding VBS "2-3 days" in the hospital, he meant if everything goes perfectly. To him that may be the norm because he does not expect, going in, that say, the chest tube might have to remain a bit longer, etc. And there are a LOT of kids who do go home in 3 days - but the average stay (this is a guess) might be 4 days for example.
          Ah okay but do you see what you are saying? You are saying you think he in fact MEANS "best case" when he says 2-3 days. And you are probably right.

          But I can only point to the wording of the material and what the surgeon told me. I think we can rule out that referring to a "best case" when he says, "Usually, your child is able to go back to school 3 weeks after the surgery." Do you think he would say that if he really meant "best case?" It sounds to me like he is reporting on the average outcome of his actual patients. We will see. And I will certainly ask him when I see him to clear this matter up.

          Originally posted by mariaf
          I think what people are trying to say (again I could be wrong) is that from all the parents we have heard from (and some of us, including myself, have been talking to scoli parents for several years) getting "almost back to normal" in three weeks after fusion just doesn't seem to be average. Could it happen? Of course! I think we just wanted to make sure you weren't setting yourself or your daughter up for disappointment.

          What's that saying? Prepare for the worst but hope for the best!
          See I don't equate "returning to school" with "almost back to normal" as you just did. I think I can help her at school (resting in the van at lunch, carrying her bag, etc.) so that she can comfortably return BEFORE being "almost back to normal." She is driven and I am going to make sure she doesn't overdo anything but she has certainly gone to school without being "almost back to normal before." This is a kid who was one of only ~10 kids out of ~450 to get all A's last year for her grade. She read the 3 weeks as an average and said she hoped she would be back at 2.5 weeks. Now I don't read it as an average but I do believe that the "usual" patient is back between 3-4 weeks. Call me crazy.

          sharon
          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


          • #20
            Originally posted by Pooka1
            See I don't equate "returning to school" with "almost back to normal" as you just did. I think I can help her at school (resting in the van at lunch, carrying her bag, etc.) so that she can comfortably return BEFORE being "almost back to normal." She is driven and I am going to make sure she doesn't overdo anything but she has certainly gone to school without being "almost back to normal before."
            sharon
            Sharon,

            You are absolutely correct - I DID equate returning to school with being "almost back to normal". I did this because that's how I would feel if it were my kid - if they weren't at least ALMOST themselves, I would not want them sitting in school feeling poorly, etc.

            That's just me. Also, the last thing I would want would be my kid catching a virus or something ON TOP of recovering from fusion.

            I admit I tend to err on the side of caution when it comes to my child's health - even over school, sports, etc.

            Just last week David was getting over being sick, he was recovered for the most part but still coughing and he got mad because I made him miss his basketball game - I know basketball isn't school but believe me, it wouldn't have mattered, his health would still be first and foremost. The rest, I feel, they can make up for or catch up on.

            That being said - those are just MY feelings, for MY kids - I am not trying to inflict my beliefs on anyone else and again, I wish your daughter all the best and a quick recovery.
            Last edited by mariaf; 03-19-2008, 07:07 PM.
            mariaf305@yahoo.com
            Mom to David, age 17, braced June 2000 to March 2004
            Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

            https://www.facebook.com/groups/ScoliosisTethering/

            http://pediatricspinefoundation.org/

            Comment


            • #21
              Originally posted by LorDon
              (snip Chris' experience...) I contacted his school prior to the surgery to set up homebound instruction which he was entitled to after being out for 5 consecutive days. He was entitled to 10 hours/week - 2 hours per subject.
              Okay here I think the tutoring kicks in at a different point here. The orthopod said the county doesn't authorize tutoring unless the child is out 6 weeks. He said she would likely be out 4 weeks and wouldn't qualify. And my understanding of the printed material from the surgeon is that the child must be out 4 weeks to qualify and that since most kids are back by 3-4 weeks, they will not qualify for a tutor. (I typed it verbatim upthread... see what you think it means. Maybe I have misinterpreted it.)

              Originally posted by LorDon
              Quite frankly, he did better with the one on one instruction because he couldn't fall asleep like he would normally do when he was in school. I also found that Chris' teachers were very lenient with him and let some things slide. It also doesn't hurt to show them the scar.
              But see she doesn't want to miss work and I don't want her to miss work. I don't want her excused... she needs to learn the material. And I think she can do this but we will see. I'm not going to let her push herself too much on this.

              Originally posted by LorDon
              Sharon, if I remember correctly, your daughter is middle school age. Something else to consider is getting permission for her to leave class 5 minutes early to avoid the crowded halls and getting an extra set of books for home. Also, you want to make sure that she is accommodated during fire drills and other evacuation drills.


              All the best to you. I will keep your family in my prayers.
              Thanks for that advice. I'll remember to ask the school to make those accommodations. Her twin is in the same classes (except elective) so maybe they can just leave her set at home and use her sister's set at school.

              Best regards,
              sharon
              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


              • #22
                Originally posted by mariaf
                (snip)
                That being said - those are just MY feelings, for MY kids - I am not trying to inflict my beliefs on anyone else and again, I wish your daughter all the best and a quick recovery.
                Maria, I think I would feel that way if my kid was in grade school. But she is in seventh grade in advanced classes. They move quickly and I think she can catch up if I help her to physically get through the day.

                sharon
                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


                • #23
                  I'm with you Maria. I, too, err on the side of caution which is why Chris didn't return to school until 7 weeks. He did 1/2 days for 2 weeks and returned full time at 9 weeks. Could he have returned sooner? Sure - but why would I rush him back? They need time to heal. This surgery shouldn't be underestimated. I can't stress that enough. Even though they START to feel better, their body is still healing and they shouldn't be overdoing anything.

                  I was also concerned that Chris would catch a virus because it was the middle of the winter. If he coughed or sneezed it was painful. I can't even imagine how horrible it would be if he caught a stomach virus and was vomiting.
                  Lori

                  Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
                  Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
                  Dr. Flynn is an AMAZING surgeon!

                  Comment


                  • #24
                    Originally posted by Pooka1
                    This is a kid who was one of only ~10 kids out of ~450 to get all A's last year for her grade.
                    That's great, but how is it relevant to fusion surgery?
                    Fusion is NOT the end of the world.
                    AIDS Walk Houston 2008 5K @ 33 days post op!


                    41, dx'd JIS & Boston braced @ 10
                    Pre-op ±53°, Post-op < 20°
                    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                    VIEW MY X-RAYS
                    EMAIL ME

                    Comment


                    • #25
                      Originally posted by Pooka1
                      Maria, I think I would feel that way if my kid was in grade school. But she is in seventh grade in advanced classes. They move quickly and I think she can catch up if I help her to physically get through the day.

                      sharon
                      I don't think it has that much to do with age - at least not in my mind - my other two kids are in High School and College. And just yesterday I told my daughter to stay home because she had an awful headcold, cough, etc. So, again, being perhaps the overly protective mom, it would not make a difference to ME if my kid was in 4th grade like David or in 11th grade like his sister - I would still worry about health over schoolwork. Maybe I hear my mother's voice from when I was a kid saying "health comes first"!
                      mariaf305@yahoo.com
                      Mom to David, age 17, braced June 2000 to March 2004
                      Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                      https://www.facebook.com/groups/ScoliosisTethering/

                      http://pediatricspinefoundation.org/

                      Comment


                      • #26
                        Sharon,
                        6 weeks sounds like an awful long time to be out before being entitled to homebound instruction. You might want to check with your district about that.

                        I'm just curious whether you have asked your surgeon how many spinal fusions he has done. That was a big concern of mine when we were deciding on Chris' surgeon. He has been doing spinal fusions for 16 years and does 2-3 per week. I see that you are located in NC, may I ask who is performing her surgery?
                        Lori

                        Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
                        Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
                        Dr. Flynn is an AMAZING surgeon!

                        Comment


                        • #27
                          I'm in a foul mood today and a gun in my hand would be a dangerous thing! I shouldn't be posting feeling like this because I may say something offensive!
                          Well here goes.....

                          What the hell!!!!! Why all the fuss about what the doctor or the literature says about when children "normally" return to school!!!! It's your child and SHE'LL be the one to tell you when she's feeling up to it! Unless of course your trying to organise time off work to be at home with your child then I can understand why you really need to get an indication of time off - I'm sure many people DO find themselves in this position if they're a working parent, so I sympathise if that's the case!

                          For me, yes, Elysia has recoved VERY quickly BUT...... there is no way she is returning to school until we see our Surgeon at the 6 week (which actually works out to 6 weeks and 6 days) appointment. We didn't go through all of this to go back to school too early and have some bozo kid come racing around a corner and knock her over and damage all the surgeon's hardwork! So precaution is my motto and I don't care what anyone says - I'm wrapping my child in cotton wool until I know this fusion is strong and ready to face the world! Child is ready but SPINE is not.

                          As for school work - she's been keeping up with the Maths work - she's probably going to go back to school and blitz the exams with all the one on one she's been receiving from me. She's only in her 2nd year of high, so there's no pressing exams around the corner for another 3 years for us! I think she'll manage to catch up on the 6 weeks that she's missed. Plus if you talk to anyone who home schools their child, you'll find they don't need 6 hours of lessons a day like a normal school day. Because it's one on one - 15 minutes equals a full school lesson because it's just you and them not 25 other kids.

                          Well that's my five cents worth - hope I haven't offended but Sharon I tore myself to shreds before this surgery looking at what was "normal" - nothing is "normal" when it comes to Scoliosis - the variables are many.

                          Hope everything works out perfectly for you all in the end.

                          Regards
                          Del
                          Elysia 16 in Feb 2010
                          Sydney - Australia
                          Feb 2008 Fused T5-L1 and 5 ribs removed.
                          Dec 2009 - Crankshafting
                          Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
                          L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

                          Comment


                          • #28
                            Originally posted by Aussiemum
                            We didn't go through all of this to go back to school too early and have some bozo kid come racing around a corner and knock her over and damage all the surgeon's hardwork! So precaution is my motto and I don't care what anyone says - I'm wrapping my child in cotton wool until I know this fusion is strong and ready to face the world! Child is ready but SPINE is not.
                            Great post, Del,

                            I am glad I'm not the only one who stays up at night and worries about things like this - LOL!

                            I also think what you said about one-on-one help with schoolwork being so effective makes perfect sense.

                            Whether it be a mom who home-schools or a tutor - it's a big difference from the classroom.

                            I know it is different, but my daughter really struggled with math her first year of HS. Seems that her grade school did not prepare her properly. She got some tutoring and caught up in no time and I can tell you it was the one-on-one aspect that made the difference - in just an hour or two a week!
                            mariaf305@yahoo.com
                            Mom to David, age 17, braced June 2000 to March 2004
                            Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                            https://www.facebook.com/groups/ScoliosisTethering/

                            http://pediatricspinefoundation.org/

                            Comment


                            • #29
                              Originally posted by LorDon
                              Sharon,
                              6 weeks sounds like an awful long time to be out before being entitled to homebound instruction. You might want to check with your district about that.

                              I'm just curious whether you have asked your surgeon how many spinal fusions he has done. That was a big concern of mine when we were deciding on Chris' surgeon. He has been doing spinal fusions for 16 years and does 2-3 per week. I see that you are located in NC, may I ask who is performing her surgery?
                              I asked him how many spinal fusions for AIS he as done. He said hundreds.

                              He also has some experience with the minimally invasive technique and said he didn't think it was ready yet in terms of instrumentation.

                              Are you familiar with surgeons in NC?

                              sharon
                              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


                              • #30
                                Originally posted by Aussiemum
                                (snip some straight talk!)
                                Well that's my five cents worth - hope I haven't offended but Sharon I tore myself to shreds before this surgery looking at what was "normal" - nothing is "normal" when it comes to Scoliosis - the variables are many.

                                Hope everything works out perfectly for you all in the end.

                                Regards
                                Del
                                Thanks Del for that! I know S may not be "normal" in terms of recovery time. That's why all I can go on at the moment is the surgeon's representation of his other patients, especially those whose cases most resemble my daughter's case. For now. We'll see if he is correct.

                                Best regards,
                                sharon
                                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

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