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knee surgery

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  • tjohns7147
    My son TJ is 9 now and having some problems with his knee. At birth both knees were in extension. However, while the right knee still has limited flexion, the
    Message 1 of 15 , Mar 2, 2010
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      My son TJ is 9 now and having some problems with his knee. At birth both knees were in extension. However, while the right knee still has limited flexion, the left knee is now quite flexed and unable to straighten. His left side is weaker overall compared with the right. The orthopedic wants to do a procedure where he would attach the top of the knee to the femur to limit growth above the knee. This would allow growth below the knee, hopefully into extension. If anyone has any experience with this type of problem and or procedure, I would appreciate any input you may have.

      Thanks in advance,
      Sharon
    • M71665@aol.com
      We are having similar problems. My son was born with his left leg extended. Both legs don t bend. The kneecaps are not in the right place. We tried surgery
      Message 2 of 15 , Mar 4, 2010
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        We are having similar problems. My son was born with his left leg extended. Both legs don't bend. The kneecaps are not in the right place. We tried surgery once on one leg to replace one kneecap in its proper place which was supposed to help the leg bend. It didn't work. Now the doctor wants to do surgery on his other leg to try it again. Originally we spoke about surgery to extend his left leg to even out his 2 legs.
        Now the doctor saw a "new technique" and wants to try it on our son.
        Any suggestions?





        [Non-text portions of this message have been removed]
      • SHARON JOHNS
        TJ s knees are in place. His left knee cap is now or always has been?? malformed. It will not allow the leg to straighten, even with orthotics. The procedure
        Message 3 of 15 , Mar 5, 2010
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          TJ's knees are in place. His left knee cap is now or always has been?? malformed. It will not allow the leg to straighten, even with orthotics. The procedure would be a temporary one where the doctor would place a clip to attach the knee to the femur and later remove it once enough growth had occurred to straighten the leg. The concern is that it will interfere with his growth in height. I am wondering how you deal with having your son's knees in extension? TJ will soon have trouble sitting in the back seat of the mini van due to leg length.

          Thanks,
          Sharon


          [Non-text portions of this message have been removed]
        • TAHARTT@aol.com
          Sharon, My Ana s legs are in extension with her knee caps on the side. As she does walk she has gained passive flexion though she is still pretty straight
          Message 4 of 15 , Mar 6, 2010
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            Sharon,

            My Ana's legs are in extension with her knee caps on the side. As she does walk she has gained passive flexion though she is still pretty straight legged. The surgeon currently doesn't feel that we can gain anything with surgery - especially since she walks now and we don't want to endanger that. Henry has one knee in extension but since it is his shorter leg we have never done anything with it.

            Good luck!

            Traci Hart-Thomas
            Mom to 8, 2 with AMC






            -----Original Message-----
            From: SHARON JOHNS <tjohns6@...>
            To: avenues2 <avenues2@yahoogroups.com>
            Sent: Fri, Mar 5, 2010 6:55 pm
            Subject: [avenues2] knee surgery




            TJ's knees are in place. His left knee cap is now or always has been?? malformed. It will not allow the leg to straighten, even with orthotics. The procedure would be a temporary one where the doctor would place a clip to attach the knee to the femur and later remove it once enough growth had occurred to straighten the leg. The concern is that it will interfere with his growth in height. I am wondering how you deal with having your son's knees in extension? TJ will soon have trouble sitting in the back seat of the mini van due to leg length.

            Thanks,
            Sharon

            [Non-text portions of this message have been removed]







            [Non-text portions of this message have been removed]
          • M71665@aol.com
            I have the same problem with my son. The doctor wants to do the kneecap surgery on his left leg, but we already tried doing it on the right leg and we
            Message 5 of 15 , Mar 7, 2010
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              I have the same problem with my son. The doctor wants to do the kneecap surgery on his left leg, but we already tried doing it on the right leg and we didn't't get much flexion from it. He is walking great now, But the doctor wants to start with the left kneecap. (The right one is still dislocated, even after the surgery). We are not sure what to do. He walks fine, no difficulty. Do we leave him alone or start up with a surgery that didn't bring any success the last time?
              Michelle






              -----Original Message-----
              From: TAHARTT@...
              To: avenues2@yahoogroups.com
              Sent: Sat, Mar 6, 2010 9:47 pm
              Subject: Re: [avenues2] knee surgery





              Sharon,

              My Ana's legs are in extension with her knee caps on the side. As she does walk she has gained passive flexion though she is still pretty straight legged. The surgeon currently doesn't feel that we can gain anything with surgery - especially since she walks now and we don't want to endanger that. Henry has one knee in extension but since it is his shorter leg we have never done anything with it.

              Good luck!

              Traci Hart-Thomas
              Mom to 8, 2 with AMC

              -----Original Message-----
              From: SHARON JOHNS <tjohns6@...>
              To: avenues2 <avenues2@yahoogroups.com>
              Sent: Fri, Mar 5, 2010 6:55 pm
              Subject: [avenues2] knee surgery

              TJ's knees are in place. His left knee cap is now or always has been?? malformed. It will not allow the leg to straighten, even with orthotics. The procedure would be a temporary one where the doctor would place a clip to attach the knee to the femur and later remove it once enough growth had occurred to straighten the leg. The concern is that it will interfere with his growth in height. I am wondering how you deal with having your son's knees in extension? TJ will soon have trouble sitting in the back seat of the mini van due to leg length.

              Thanks,
              Sharon

              [Non-text portions of this message have been removed]

              [Non-text portions of this message have been removed]







              [Non-text portions of this message have been removed]
            • Patty Clarke
              I am curious, if he is walking well now and the surgery did not work on one knee, what is the doctors’ reason for suggesting this surgery? I remember when I
              Message 6 of 15 , Mar 7, 2010
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                I am curious, if he is walking well now and the surgery did not work on one knee, what is the doctors’ reason for suggesting this surgery? I remember when I was 14 having back surgery for my scoliosis and my doctor was away and his replacements was doing rounds. He was showing the students my lack of range of motion in my shoulders and one knee. I use a wheelchair full time, do not walk but transfer full weight bearing (just to give a bit of history). He started showing my knee how little it bends and talked about doing a knee release, I said “will it make me walk” ad he looked at me like I had no right to speak during his “lesson” and he said no it will make your knee bend 10 more degrees. I said so what that is not going to make a difference, why would I go ahead with useless surgery after having three surgeries for my spine which is necessary but knee surgery is stupid!!



                He was not impressed with this mouthy 14 year old and when my doctor returned I told him what this guy said. He was furious and said that no one would be doing any surgery on my knees and surely would not without my consent, and he (the other surgeon) had no right discussing this with students in front of me without my parents or him (my surgeon) present……at least back then there were some surgeons that had common sense and looked at function not challenge as the motivator to do surgery just because they could. I suspect some surgeons do surgeries this way but I hope not, kids with disabilities are not experiments…….



                Patty.



                From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf Of M71665@...
                Sent: March-07-10 6:15 PM
                To: avenues2@yahoogroups.com
                Subject: Re: [avenues2] knee surgery






                I have the same problem with my son. The doctor wants to do the kneecap surgery on his left leg, but we already tried doing it on the right leg and we didn't't get much flexion from it. He is walking great now, But the doctor wants to start with the left kneecap. (The right one is still dislocated, even after the surgery). We are not sure what to do. He walks fine, no difficulty. Do we leave him alone or start up with a surgery that didn't bring any success the last time?
                Michelle

                -----Original Message-----
                From: TAHARTT@... <mailto:TAHARTT%40aol.com>
                To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
                Sent: Sat, Mar 6, 2010 9:47 pm
                Subject: Re: [avenues2] knee surgery

                Sharon,

                My Ana's legs are in extension with her knee caps on the side. As she does walk she has gained passive flexion though she is still pretty straight legged. The surgeon currently doesn't feel that we can gain anything with surgery - especially since she walks now and we don't want to endanger that. Henry has one knee in extension but since it is his shorter leg we have never done anything with it.

                Good luck!

                Traci Hart-Thomas
                Mom to 8, 2 with AMC

                -----Original Message-----
                From: SHARON JOHNS <tjohns6@... <mailto:tjohns6%40msn.com> >
                To: avenues2 <avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com> >
                Sent: Fri, Mar 5, 2010 6:55 pm
                Subject: [avenues2] knee surgery

                TJ's knees are in place. His left knee cap is now or always has been?? malformed. It will not allow the leg to straighten, even with orthotics. The procedure would be a temporary one where the doctor would place a clip to attach the knee to the femur and later remove it once enough growth had occurred to straighten the leg. The concern is that it will interfere with his growth in height. I am wondering how you deal with having your son's knees in extension? TJ will soon have trouble sitting in the back seat of the mini van due to leg length.

                Thanks,
                Sharon

                [Non-text portions of this message have been removed]

                [Non-text portions of this message have been removed]

                [Non-text portions of this message have been removed]





                [Non-text portions of this message have been removed]
              • Betty Hicks
                My response would be leave things alone if he is walking great now. I really hate doctors who see that these kids are using their hands great or walking
                Message 7 of 15 , Mar 7, 2010
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                  My response would be leave things alone if he is walking great now. I
                  really hate doctors who see that these kids are using their hands great or
                  walking great, they just seem like they want to experiment and see if a new
                  technique would work with out knowing the outcome for sure. I would just
                  leave things alone, and this is from an adult who has AMC and has actually
                  been thru a similar situation.



                  Betty

                  "Kindness in words creates confidence; kindness in thinking creates
                  profoundness; kindness in giving creates love"





                  [Non-text portions of this message have been removed]
                • Betty Hicks
                  Patti, You and were thinking the same thing. And I agree with you 100% on this. But there is some thing else I should say, if the child has not started
                  Message 8 of 15 , Mar 7, 2010
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                    Patti,



                    You and were thinking the same thing. And I agree with you 100% on this.
                    But there is some thing else I should say, if the child has not started
                    walking yet and they have all these issues, maybe give it a try BUT, in this
                    case, the child is walking and walking great, why do something that might
                    make his walking worse. Man I hope I didn't sound like a bit-there, didn't
                    mean to, but I have been in situations where the people thought it would be
                    better for me and all it done was make things harder.



                    Betty

                    "Kindness in words creates confidence; kindness in thinking creates
                    profoundness; kindness in giving creates love"





                    [Non-text portions of this message have been removed]
                  • M71665@aol.com
                    Thank you all!! My son is not only walking, he is skipping and starting to run! That is why I don t know why I should start playing with his legs if I don t
                    Message 9 of 15 , Mar 7, 2010
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                      Thank you all!!
                      My son is not only walking, he is skipping and starting to run! That is why I don't know why I should start playing with his legs if I don't have to!! Now his doctor has always had the same view as us. This is the first time we ever disagreed! I just want to make sure I am not causing him any harm.
                      Deeply grateful to have you all there!
                      Michelle






                      -----Original Message-----
                      From: Betty Hicks <missbetty37@...>
                      To: avenues2@yahoogroups.com
                      Sent: Sun, Mar 7, 2010 9:54 pm
                      Subject: RE: [avenues2] knee surgery




                      Patti,

                      You and were thinking the same thing. And I agree with you 100% on this.
                      But there is some thing else I should say, if the child has not started
                      walking yet and they have all these issues, maybe give it a try BUT, in this
                      case, the child is walking and walking great, why do something that might
                      make his walking worse. Man I hope I didn't sound like a bit-there, didn't
                      mean to, but I have been in situations where the people thought it would be
                      better for me and all it done was make things harder.

                      Betty

                      "Kindness in words creates confidence; kindness in thinking creates
                      profoundness; kindness in giving creates love"

                      [Non-text portions of this message have been removed]







                      [Non-text portions of this message have been removed]
                    • Betty Hicks
                      Michelle, I don t want you to think I m being a bit-about this but I think you would do more harm if you went ahead and let the doctor do the surgery. Like I
                      Message 10 of 15 , Mar 8, 2010
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                        Michelle,



                        I don't want you to think I'm being a bit-about this but I think you would
                        do more harm if you went ahead and let the doctor do the surgery. Like I
                        said before I have been in situations where the therapists thought they knew
                        what was best for me and they were sadly mistaken, I actually had a doctor
                        step in and tell them to stop doing what they were trying to do, and tell
                        them to quit telling me that he ordered all this when he didn't. I know
                        this is a doctor that wants your son to have this surgery but the way you
                        describe him, he definitely does not need this surgery, and you need to
                        stand your ground on this.



                        Betty

                        "Kindness in words creates confidence; kindness in thinking creates
                        profoundness; kindness in giving creates love"





                        [Non-text portions of this message have been removed]
                      • Patty Clarke
                        That is so true about the therapist. After my back surgery my physio got me back up on braces and my doctor, all be it a few years later told me and the
                        Message 11 of 15 , Mar 8, 2010
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                          That is so true about the therapist. After my back surgery my physio got me
                          back up on braces and my doctor, all be it a few years later told me and the
                          physio that I should not be up on braces again because of the strain it is
                          putting on my back and hips..bummer he didn't say this earlier...my beef
                          with physios, it seems like I always say they don't feel successful unless
                          the child is upright on two legs even if it is not in the best interest of
                          the child...



                          Patty.



                          From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
                          Of Betty Hicks
                          Sent: March-08-10 12:54 PM
                          To: avenues2@yahoogroups.com
                          Subject: RE: [avenues2] knee surgery





                          Michelle,

                          I don't want you to think I'm being a bit-about this but I think you would
                          do more harm if you went ahead and let the doctor do the surgery. Like I
                          said before I have been in situations where the therapists thought they knew
                          what was best for me and they were sadly mistaken, I actually had a doctor
                          step in and tell them to stop doing what they were trying to do, and tell
                          them to quit telling me that he ordered all this when he didn't. I know
                          this is a doctor that wants your son to have this surgery but the way you
                          describe him, he definitely does not need this surgery, and you need to
                          stand your ground on this.

                          Betty

                          "Kindness in words creates confidence; kindness in thinking creates
                          profoundness; kindness in giving creates love"

                          [Non-text portions of this message have been removed]





                          [Non-text portions of this message have been removed]
                        • M71665@aol.com
                          Thank you Betty. But this is supposed to be the top doctor for Arthrogryposis! I don t know who to turn to anymore if not him. what does everyone do in
                          Message 12 of 15 , Mar 8, 2010
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                            Thank you Betty.
                            But this is supposed to be "the top" doctor for Arthrogryposis! I don't know who to turn to anymore if not him. what does everyone do in this situation? how do we find the best doctor for our kids? And this was the one for so many years!!






                            -----Original Message-----
                            From: Betty Hicks <missbetty37@...>
                            To: avenues2@yahoogroups.com
                            Sent: Mon, Mar 8, 2010 3:54 pm
                            Subject: RE: [avenues2] knee surgery




                            Michelle,

                            I don't want you to think I'm being a bit-about this but I think you would
                            do more harm if you went ahead and let the doctor do the surgery. Like I
                            said before I have been in situations where the therapists thought they knew
                            what was best for me and they were sadly mistaken, I actually had a doctor
                            step in and tell them to stop doing what they were trying to do, and tell
                            them to quit telling me that he ordered all this when he didn't. I know
                            this is a doctor that wants your son to have this surgery but the way you
                            describe him, he definitely does not need this surgery, and you need to
                            stand your ground on this.

                            Betty

                            "Kindness in words creates confidence; kindness in thinking creates
                            profoundness; kindness in giving creates love"

                            [Non-text portions of this message have been removed]







                            [Non-text portions of this message have been removed]
                          • SHARON JOHNS
                            I have always gone with my gut. We declined a shoulder surgery for TJ because we really couldn t see any significant benefit for him in terms of improvement of
                            Message 13 of 15 , Mar 8, 2010
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                              I have always gone with my gut. We declined a shoulder surgery for TJ because we really couldn't see any significant benefit for him in terms of improvement of function. He does very well with his hands and arms as they are.

                              We have also used Shriners as our go-to for a second opinion when we were not sure about what the doctors at Children's Hospital of Pittsburgh were suggesting. Shriners has always concurred with CHP's treatment suggestions, so we have stayed with CHP as it is more local to us. I'm not sure if you have a Shriner's available to you, but they have always been wonderful.

                              I am not sure of your son's age, but the one other thought I had is to consider the future. Is the surgery being suggested something that will make a difference in the future? We have seen significant change with TJ as he grows (I.e. his left knee going from extension to flexion) and it really snuck up on us to the point where he is now. His walking has become very difficult from about 2 years ago when he would walk almost all the time to where he now walks very little.

                              Hope this helps,
                              Sharon
                              ----- Original Message -----
                              From: M71665@...<mailto:M71665@...>
                              To: avenues2@yahoogroups.com<mailto:avenues2@yahoogroups.com>
                              Sent: Monday, March 08, 2010 10:53 PM
                              Subject: Re: [avenues2] knee surgery




                              Thank you Betty.
                              But this is supposed to be "the top" doctor for Arthrogryposis! I don't know who to turn to anymore if not him. what does everyone do in this situation? how do we find the best doctor for our kids? And this was the one for so many years!!

                              -----Original Message-----
                              From: Betty Hicks <missbetty37@...<mailto:missbetty37%40ameritech.net>>
                              To: avenues2@yahoogroups.com<mailto:avenues2%40yahoogroups.com>
                              Sent: Mon, Mar 8, 2010 3:54 pm
                              Subject: RE: [avenues2] knee surgery

                              Michelle,

                              I don't want you to think I'm being a bit-about this but I think you would
                              do more harm if you went ahead and let the doctor do the surgery. Like I
                              said before I have been in situations where the therapists thought they knew
                              what was best for me and they were sadly mistaken, I actually had a doctor
                              step in and tell them to stop doing what they were trying to do, and tell
                              them to quit telling me that he ordered all this when he didn't. I know
                              this is a doctor that wants your son to have this surgery but the way you
                              describe him, he definitely does not need this surgery, and you need to
                              stand your ground on this.

                              Betty

                              "Kindness in words creates confidence; kindness in thinking creates
                              profoundness; kindness in giving creates love"

                              [Non-text portions of this message have been removed]

                              [Non-text portions of this message have been removed]





                              [Non-text portions of this message have been removed]
                            • Patty Clarke
                              If you have a good rapport with this doctor don’t write him off by all means. Just ask more questions and say you will think about it, and perhaps you can
                              Message 14 of 15 , Mar 8, 2010
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                                If you have a good rapport with this doctor don’t write him off by all means. Just ask more questions and say you will think about it, and perhaps you can then say you want a second opinion who would he suggest? I did this with my hip surgery and the surgeon gave me his colleague who was the head of the department and both docs differed, in the same department and I went with the head doc and the original surgeon met with him discussed the plan and the original doc said he would do the procedure……..



                                Just keep dialogue with questions, asking for other opinions and time to digest and defer to look at the knee surgery at a later time if your son shows sign of trouble down the road with the knee…..any reasonable doctor will surely respect all of these ways to make a decision……



                                Patty.



                                From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf Of M71665@...
                                Sent: March-08-10 7:54 PM
                                To: avenues2@yahoogroups.com
                                Subject: Re: [avenues2] knee surgery






                                Thank you Betty.
                                But this is supposed to be "the top" doctor for Arthrogryposis! I don't know who to turn to anymore if not him. what does everyone do in this situation? how do we find the best doctor for our kids? And this was the one for so many years!!

                                -----Original Message-----
                                From: Betty Hicks <missbetty37@... <mailto:missbetty37%40ameritech.net> >
                                To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
                                Sent: Mon, Mar 8, 2010 3:54 pm
                                Subject: RE: [avenues2] knee surgery

                                Michelle,

                                I don't want you to think I'm being a bit-about this but I think you would
                                do more harm if you went ahead and let the doctor do the surgery. Like I
                                said before I have been in situations where the therapists thought they knew
                                what was best for me and they were sadly mistaken, I actually had a doctor
                                step in and tell them to stop doing what they were trying to do, and tell
                                them to quit telling me that he ordered all this when he didn't. I know
                                this is a doctor that wants your son to have this surgery but the way you
                                describe him, he definitely does not need this surgery, and you need to
                                stand your ground on this.

                                Betty

                                "Kindness in words creates confidence; kindness in thinking creates
                                profoundness; kindness in giving creates love"

                                [Non-text portions of this message have been removed]

                                [Non-text portions of this message have been removed]





                                [Non-text portions of this message have been removed]
                              • Tracey
                                What top doc for Arthrogryposis do you take your son too? I go to Shriners in Philadelphia, my surgeon there specializes in AMC & is rather new on the
                                Message 15 of 15 , Mar 11, 2010
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                                  What "top doc" for Arthrogryposis do you take your son too?

                                  I go to Shriners in Philadelphia, my surgeon there specializes in AMC & is rather "new" on the scene of being a specialist in this diagnosis. By new I mean he hasn't been in practice 30 years, which in my opinion makes him more aware of newer techniques. Don't be afraid of second opinions! Getting an opinion never hurts anything & remember everything is simply an opinion, you can take it or leave it.

                                  Ask questions about long-term expectations if the surgery is done versus isn't. Can it wait until (or rather if) his function level starts to decline or does the surgery need to be done to prevent a decline that can't be reversed. I had knee surgery for an extended knee. It was done the "old" way so my result wasn't stellar.

                                  --- In avenues2@yahoogroups.com, "Patty Clarke" <pelclarke@...> wrote:
                                  >
                                  > If you have a good rapport with this doctor don’t write him off by all means. Just ask more questions and say you will think about it, and perhaps you can then say you want a second opinion who would he suggest? I did this with my hip surgery and the surgeon gave me his colleague who was the head of the department and both docs differed, in the same department and I went with the head doc and the original surgeon met with him discussed the plan and the original doc said he would do the procedure……..
                                  >
                                  >
                                  >
                                  > Just keep dialogue with questions, asking for other opinions and time to digest and defer to look at the knee surgery at a later time if your son shows sign of trouble down the road with the knee…..any reasonable doctor will surely respect all of these ways to make a decision……
                                  >
                                  >
                                  >
                                  > Patty.
                                  >
                                  >
                                  >
                                  > From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf Of M71665@...
                                  > Sent: March-08-10 7:54 PM
                                  > To: avenues2@yahoogroups.com
                                  > Subject: Re: [avenues2] knee surgery
                                  >
                                  >
                                  >
                                  >
                                  >
                                  >
                                  > Thank you Betty.
                                  > But this is supposed to be "the top" doctor for Arthrogryposis! I don't know who to turn to anymore if not him. what does everyone do in this situation? how do we find the best doctor for our kids? And this was the one for so many years!!
                                  >
                                  > -----Original Message-----
                                  > From: Betty Hicks <missbetty37@... <mailto:missbetty37%40ameritech.net> >
                                  > To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
                                  > Sent: Mon, Mar 8, 2010 3:54 pm
                                  > Subject: RE: [avenues2] knee surgery
                                  >
                                  > Michelle,
                                  >
                                  > I don't want you to think I'm being a bit-about this but I think you would
                                  > do more harm if you went ahead and let the doctor do the surgery. Like I
                                  > said before I have been in situations where the therapists thought they knew
                                  > what was best for me and they were sadly mistaken, I actually had a doctor
                                  > step in and tell them to stop doing what they were trying to do, and tell
                                  > them to quit telling me that he ordered all this when he didn't. I know
                                  > this is a doctor that wants your son to have this surgery but the way you
                                  > describe him, he definitely does not need this surgery, and you need to
                                  > stand your ground on this.
                                  >
                                  > Betty
                                  >
                                  > "Kindness in words creates confidence; kindness in thinking creates
                                  > profoundness; kindness in giving creates love"
                                  >
                                  > [Non-text portions of this message have been removed]
                                  >
                                  > [Non-text portions of this message have been removed]
                                  >
                                  >
                                  >
                                  >
                                  >
                                  > [Non-text portions of this message have been removed]
                                  >
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