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  • New with Questions

    I have been visiting the forum for a while and decided to jump in and ask questions.

    My daughter Elizabeth (13) is scheduled for surgery on Nov 8 in Grand Rapids, MI. We are wondering if anyone has had surgery with Dr. Jeffery Cassidy. And if anyone has had Harrington rods implated by a Neurosurgeon as opposed to an Orthopaedic surgeon. (An acquaintance has told us he would not let anyone but an Neuro touch his child's back).

    In addition we are not sure about using donor bone or her own for the fusion. Is the fusion time shorter, is the risk of infection or rejection increased significantly and is it worth the additional incision and pain?

    Any thoughts and suggestions are much appreciated. The surgery is coming fast and we want to have as much information as possible. We do have a Pre op appointment on the 12th of October and will get some answers there but we also want to hear it from the people who have been there.

  • #2
    Sorry I can't really comment on the neurologist question, we used an orthopedic surgeon. I had read somewhere that neurologists do this type of surgery, I know that our doctor had spinal cord monitoring equipment and a neurology team in assisting with the surgery.

    My daughter had surgery Aug 22, and we used donor bone after much thought and many questions. I did have a post with some good comments from others, there was an especially good link that someone had posted. Can't remember which forum, try doing a search on it for bone graft, I think the post was called bone graft vs donor bone. Our doctor assured us that the risks of disease transmission or rejection through donor bone was very small, if any at all. He also said that he takes bone marrow along with scrapings of the vertabrae to mix with the donor bone so that there are "live" cells to help with the fusion. He has been using this technique for a while and hasn't seen any difference between that and using a bone graft as far as healing the fusion. Additionally, he said his son had needed some type of operation on his leg where he needed additional bone, and they used donor bone rather than taking a bone graft. So, we went with donor bone - he said everything looked great at our 4 week post op appt, it's a little too soon to tell if there will be a problem with the fusion healing or not.

    Hope everything goes well with your daughter's surgery.
    Last edited by emma12; 09-29-2007, 10:20 AM.

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    • #3
      Thanks Emma I went back and read through the "bone graft vs. donor bone" and found that most people are opting for the donor bone and our Dr said he would be taking the "knobs" from her spine as well. The one concern I do have is that she is also diabetic and not sure if that will be a factor in the healing process or not. We will check with the Dr at her next appointment. My biggest worry is the pain from where they take the bone it sounds like that is worse than the surgery itself.

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      • #4
        My 17 year old son is having anterior fusion done (we are waiting for a date) and I don't remember his Doctor mentioning anything about bone graft or doner bone. Is she have anterior or posterior surgery? This is all so confusing but I have learned so much from this forum. The people are just awesome. What are you daughter's curves? My son's are 46/54.

        I also can't comment on having a neurosurgeon as opposed to an ortho. doing the surgery. Chris' doctor told us that he has all kinds of spinal cord monitoring as well. It's really scary though, isn't it? If I hadn't found this forum, I feel like I would be in the dark completely.

        I hope everything goes well with your daughter's surgery.

        Lori
        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!

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        • #5
          sredman,
          Only you can ultimately make the decision of which surgeon to choose to perform your childs surgery. An orthopedic spine surgeon will be more likely to have extensive knowledge of diagnosis and treatment in spinal deformities such as scoliosis, where a neurosurgeon will have more experience with things such as tumors/cysts and chiari malformation. Some doctors are trained both ways. The best thing to do is to interview multiple surgeons and go with the surgeon you feel has the most experience and that you are most comfortable with. Ask the doctor how many scoli surgeries they perform each month/year. You don't want a surgeon who performs many knee replacements, yet rarely touches a spine. Ask for some patient referances who have had the same procedure your child is having and CALL THEM. See if they had a good outcome with your childs surgeon, how the hospital staff was, the quality of care in general. Treat this situation as if you were interviewing the surgeon for a job. You want the one who is going to work the best on your team, not the one who will give 75%, but the one who will give 110% and strive to do their best at all times. When the surgery is done, the job is not over, the recovery is still ahead and the doctor should be in it for the long haul!
          Good luck.
          Amanda

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          • #6
            Well, I don't know if being a diabetic would impact the healing, I'd definitely ask the doctor about that. I had concerns from reading that the bone graft site does cause additional pain and scarring, but, when I asked my doctor about that he said that most kids he sees don't complain too much about it. We did go with the donor bone though, and I was glad she didn't have an additional place to be causing discomfort.

            I agree with curvy's comments, you should feel totally comfortable with whatever type of doctor you choose, they are in it for alot longer than just the actual surgery. And, your doctor should be able to provide you with names of other patients that you should call and talk to. It really helps with peace of mind. We were actually lucky enough to meet a kid who was 2 weeks postop at our preop appointment. They had heard us talking in the waiting room and asked the doctor if we would like to talk to him and his mother, he was doing really well and we felt alot of relief to see him and talk to someone who so recently had had this surgery.

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            • #7
              Thank you all for your comments they are greatly appreciated and give us things to think about. Elizabeth's Thoracic curve is 53 and I really am not sure what the Lumbar curve is since the T is the one we are mostly concerned about and the L is "compensatory" and they think that will follow when they correct the T. They are going in through the back but we are also wondering (and will ask at her next apt) about alternate procedures that I have read about which seem much less invasive with shorter recovery times. If they work we would definitely prefer that route. I will post what we find out.

              Our surgeon seems very comfortable with this surgery and doesn't feel there should be any complications. We did ask him how many of these surgeries he has performed and his response was "over 150" with no major complications or infections which makes me feel pretty confident in his abilities. I have also spoken with our Endocrinologist (her diabetes Dr.) in which I have total confidence about using a neurosurgeon and his comment was that he hadn't heard of any performing this procedure but that doesn't mean it doesn't happen.

              Again, I appreciate all of you input. This forum is awesome.

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              • #8
                Who referred you to the neurosurgeon, an acquaintance or a physician? Did the acquaintance know the surgeon and have a good surgical outcome with him/her? Have you had any 2nd opinions? Is the surgeon using Harrington rods, or are you using the umbrella term harrington rods? There are many different types of instrumentation that are used now. The older harrington rods from the 60's-80's have been shown to cause lots of problems years after implantation and are not (often) used anymore.

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                • #9
                  No one actually referred us to the neurosurgeon an acquaintance simply stated he thought we should find a neurosurgeon instead of using the orthopaedic. The only 2nd opinion we have gotten is from the ortopaedic specialist we were seeing and once she got past the 50 degree mark he referred us to the orthopaedic surgeon.

                  I believe the surgeon actually called them harrington rods they are made from titanium and would be attached to the spine with hooks and screws.

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                  • #10
                    Chris' surgeon said that he uses stainless steel rods instead of titanium. Does anybody know the benefits of using one over the other?
                    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


                    • #11
                      Titanium rods are lighter and stronger than steel. Also if you need an MRI, steel causes problems as they use magnets. The steel causes distortion when they try to read the MRI.
                      As for donor bone, the doctor took the knobs off of my daughter and used donor bone. She has no problems with it. She refers to her donor bone as Sir Francis. When she could not do something at dance recently, and someone commented on it, she told the girl that she was hurting Sir Francis' feelings.
                      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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                      • #12
                        We had our Pre Op appointment on Friday. I think it went pretty well. Elizabeths curve has progressed "a couple of degrees" since August which puts her at 55T and 38L. Dr Cassidy thinks he will get a correction to about 20 degrees fusing T5-T12 (maybe 11).

                        We asked about Anterior vs. Posterior surgery. As I understand it anterior is used more for smaller childred with more flexible curves and is a little more scary because they have to move several organs to get to the back. We also discussed laproscopic surgery which he said was more or less a phase a few years back and apparently wasn't as successful as the posterior fusion.

                        He also assured us there would be a neurologist monitoring spinal cord activity during the entire operation and they would be able to go back and correct anything that caused a problem with the spinal cord.

                        We also met with the blood avoidance team. Their goal is to prevent the need for a blood transfusion. Apparently the majority of children having this type of surgery end up needing a blood transfusion which comes with a number of risks and if you don't need to have one it is better not to. They did a number of blood tests and asked several questions regarding pregnancy and delivery as well as a family history looking for blood disorders. Fortunately our family does not have any of these and the pregnancy was full term with a "normal" delivery. Elizabeth has a hemoglobin count of 14.5 and they said anything less than 12 they would put her on shots of Procrit to boost that count before surgery. They also said they use a machine (I forget the name of it) which actually sucks up the lost blood, cleans it and gives it back to her (AMAZING) so she is getting her own blood back.

                        I would encourage anyone going into this procedure to look into the blood avoidance program. My understanding is that it is a standard procedure at DeVos hospital in Grand Rapids MI but not necessarily everywhere else.

                        So, I guess our next step is to wait until the day of surgery

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                        • #13
                          "Recycling" one's blood lost during scoliosis surgery is the standard of care nowdays. It's commonly called "Cell Saver".
                          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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                          • #14
                            The doctor had my daughter donate 2 pints before her surgery to get back if she needed it. The blood bank liked how easy it was to get blood from her and told her to come back when she was old enough. Once she turned 17, she started donating when she could. She only needed one pint of her blood during surgery and then they gave her the second pint in recovery.
                            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

                            Comment


                            • #15
                              Have any of you needed a hospital bed at home after the surgery? A friend suggested we might need one although the Dr has not mentioned it at all. I will phone the Dr next week and ask but wondered if it was common to have one.

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