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  • #31
    Renee,
    Thank you for giving me the list of questions that I should ask at the pre-op appt. Keep it coming! I'm starting to keep a notebook of all of these things. I would feel so much better getting to see what kind of equipment that he will be hooked up to and the model of the spine with the instrumentation attached. I really don't do well with the shock factor, so I really want to be prepared.

    Melissa or Rose, did you get to see any of this at your pre-op at CHOP?

    When I try and tell my husband what we should expect, he gets really freaked out and doesn't want to hear about it. He said he is having nightmares about it and he would rather just see it at the time and deal with it. Is anybody else's husband like this? I just want to have as much information as possible.

    Emma, I will be praying that your daughters curve doesn't get any worse or better yet, improves. How old is she? I know you've mentioned that she is in 7th grade. I also have another son who is in 7th grade and he's 13. How is her pain at this point?

    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!

    Comment


    • #32
      Hi Lori,

      I haven't pulled out my notes, but should be able to get to them by Monday. When is your pre-op appt.? Something that just came to mind though, if they do need to fuse higher in the back & they have to deflate the lung, etc., will he need a chest tube after surgery? I don't know if this is something automatically done as a precautionary measure or only if there is a complication like an accidental nick/tear on the deflated lung). Maybe someone who has experienced this could help clarify this. This may not apply to your son's situation, but just in case....

      I was the one who did all the researching (and freaking out ) my hubby didn't seem to want to know much until surgery time. He finally went to the pre-op appt., plus both of us donated blood along with Joe and he did take him to get some of the pre-op testing done. When it came time for Joe's surgery, it was my hubby who fell apart a few times in the waiting room. I was surprised at how well I held it together, it was only after they told us Joe was out of surgery and he was ok that I cried. I think I was holding my breath up until that time! Anyway, point is I think it is somewhat of a common reaction for men. It's in their nature to want to "fix" things, and it's hard on them when they can't.

      Got to go. Take care, I'll try to get my notes together in the next day or two.

      Renee

      Comment


      • #33
        Hi Renee,
        I am so mad that I still don't have a surgery date, let alone a pre-op appt. Dr. Flynn at CHOP is doing the surgery and we last saw him on Sept. 14 at which time we decided on surgery. His assistant told me that she would call us with a date. After waiting 2 weeks I finally emailed her and asked her if we were on the surgery schedule. (she said that email is the best way to contact her). She ignored the 1st email, and after I sent the 2nd email (which wasn't as nice as the 1st one) she quickly responded. She told me that she needs to meet with Flynn to go over the surgery schedule before she can give me a date. 1 more week has gone by. I emailed her on Friday. No response. I emailed her again today. No response. I am fuming. I even explained in Friday's email that Flynn told us that he doesn't want to wait very long to do the surgery. CHOP is the top rated Children's Hospital in the nation and I realize that they are very busy. Am I wrong to assume that I should have a surgery date by now? Am I just being an impatient, hysterical mother? Please tell me. Thanks for listening to me vent.

        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!

        Comment


        • #34
          Lori,

          I am so sorry you are going through this. You are right. It doesn't make sense. A top hospital like CHOP. Usually they can't wait to talk about surgery and schedule it. What is going on? When I called over the summer they were making a change with their phone system. That was a pain. But when I got through, they actually let me get on Dr. Dorman's surgery schedule before Nicole was ever seen by him. I couldn't believe it. When we met with Dormans and we started talking about surgery, they asked me if this was our 2nd, 3rd, opinion, etc. We told them we were done getting opinions, we were going with them and we were already scheduled.

          Summer is usually the busiest time for spinal fusions because a lot of families plan it so their kids don't miss school. So I don't get it.

          I would keep calling and tell them that Chris's curves are getting worse every day and that Dr. Flynn wanted it done ASAP.

          Now I remember when I called, I told them that Nicole's curves were really bad and getting worse every day and we needed surgery as soon as possible. They really seemed to respond to that.
          Melissa
          From Bucks County, Pa., USA

          Mom to Matthew,19, Jessica, 17, and Nicole, 14
          Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

          Comment


          • #35
            I called CHOP and finally got through to Dr. Flynn's assistant. I figured she could easily ignore another email, but it would be much harder to ignore a real voice on the other end of the phone! She was very apologetic for not getting back to me sooner. I think she detected a note of annoyance in my voice which prompted her apology. I asked her if she had gotten my 2 emails and she said she did. I wanted to ask her why she didn't reply to them, but I decided that it wasn't worth arguing over.

            Chris is scheduled for surgery on December 12. I finally got a date, so why do I feel worse now than I did before? I've felt sick to my stomach ever since she told me.

            Any advice on when to tell Chris? Do I wait and tell him in another month or is it best to give him time to adjust to it? I really don't want him worrying about it for the next 2 months - I'll certainly do enough worrying for both of us. Any thoughts?

            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!

            Comment


            • #36
              Lori,

              Everything you are feeling is normal. There is always anxiety waiting for the next appt., even more so when a date is set for surgery, that sets off a whole new tangent of concerns and emotions. I liken this scoliosis journey to a rollercoaster ride...the bad dream kind where you're going straight up and down with wild twists and curves.

              As far as when to tell Chris is really up to you. You know your child best and how he might handle this. Maybe sit down with your hubby first and talk it over with him, then maybe you could both talk to Chris. In my situation, I told Joe as soon as possible to let him adjust. I didn't want to spring it on him close to surgery time. I let him know as things progressed, because with school, I tried to arrange things around his schedule with schoolwork & finals, stuff like that. I also got him on a really healthy diet, daily multi-vitamin and tried to get him exercising to build up lung strength & doing stretches to help flexibility. Did you schedule a pre-op appt. also? By next month you will need to start scheduling for blood donation (if needed) and all the pre-op testing.

              You have a great support group here, everyone will do what they can to answer questions & help you get through this. When you do decide to tell Chris, and if he has questions & would like to talk to another guy who has been through this, I am sure my son (who is 16) would be happy to chat with him.

              Take care,
              Renee

              Comment


              • #37
                Lori,

                I am sorry you are not feeling good about getting your date. In time, hopefully you will start to accept this and actually look forward to having this surgery done once and for all. I told Nicole the second we got the date and then we told the whole world. You are in a similar situation. We had a few months to wait, as well. Her curves went up during that time and it really confirmed we had done the right thing by having surgery.

                We have a neighbor who is having it done a week after Chris at St. Christopher's.

                I agree with Renee that it is so much better to prepare mentally and physically for this than to have it sprung on you. As always, you have all of our support. Chris will do great and he will start the new year off with a straight back and one major worry off of all of your heads. No more increasing curves.
                Melissa
                From Bucks County, Pa., USA

                Mom to Matthew,19, Jessica, 17, and Nicole, 14
                Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                Comment


                • #38
                  I think that you are absolutely right Renee. The scoliosis journey is just like a roller coaster ride. The only problem is, I HATE ROLLER COASTERS!

                  Renee and Melissa - I think you are both right. We decided that it's best to tell Chris sooner, rather than later. I need to get a hold of myself before I tell him though. It certainly wouldn't be good for him to see me burst into tears as I am telling him. We are going to talk to him about it over the weekend. Thank you for your offer Renee to have your son chat with Chris. I'll mention it to him. I did tell him yesterday about starting him on a multi-vitamin, getting enough rest and eating really healthy (actually he is really good about that already) and getting exercise. Renee, did your doctor prescribe a vitamin or did you just buy one off the shelf? When I spoke to Flynn's assistant, she didn't even mention having him take a vitamin, so I did. Thankfully I knew enough to ask from reading so much on this forum.

                  Chris' pre-op appointment is December 3. Melissa, during your pre-op appt. with Dormans, how much time was actually spent talking to him? Flynn's assistant is supposed to be sending me some info. regarding blood donation etc. How far in advance do you need to do that?

                  Thanks for all your help ladies,
                  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!

                  Comment


                  • #39
                    Hi Lori

                    Having the surgery date brings a new reality to the whole situation, I was having anxiety attacks but only when I was alone, I find I am always calm and in control when I discuss anything with Sheena, I think you'll find that to be true too. I am much better now (we've had 7 months to ponder and worry over this) and am ready to go through with it.

                    About blood donation, we were told to get it done as early as possible to allow the blood to build back up as much as possible. In our case, we were told as early as 6 weeks before surgery, we're going this Sunday to donate, that will still give her 4.5 weeks before surgery. She's donating one and my husband is donating one for her. My doctor didn't recommend iron pills, but i took the advice of others here and put her on a multivitamin with iron several weeks ago. I think blood banks have different guidelines as far as storage, you can contact whichever one you're going through for more information. I also found out that directed donor units from a family member have to be irradiated and that shortens the length of storage to 28 days.

                    Take care, looks like our kids will be having surgery within a few weeks of each other, I'll be sure to post and let you know how ours goes.

                    Comment


                    • #40
                      Hi Lori,

                      I got Joe taking vitamins on my own, the dr. did prescribe an iron supplement to be taken a few weeks prior to, and for about 2 weeks after surgery. Even better than the vitamin though, is a healthy diet. Lots of proteins, iron rich foods, fruits/veggies high in vitamin C will help the body repair itself after surgery. Here are a few more questions, sorry if some seem redundant:

                      Name of anesthesiologist that will be assisting. How many surgeries of this type has he/she assisted on? Will you have an opportunity to meet with him/her prior to surgery? (you could ask them what type of anesthesia used, their procedure in administering, how they monitor during surgery, generally how long it takes to "wake up" once surgery is over, what complications might arise, i.e. headache, nausea, etc. and how this is treated.

                      With anterior approach, will a rib need to be removed (thoracoplasty) to access the spine?

                      Describe instrumentation to be used and placement on vertebrae. Who manufactures the hardware?( Through this, I learned that the dr. helped develop the hardware used and is a consultant for the manufacturing co.)

                      If pedicle screws used, what are risks of neurological complications in placing on thoracic vertebrae?

                      What is proximity of pedicle screws to aorta/blood vessels & is there any risk of screws puncturing these vessels?

                      Are there ever occasions where the monitors might not "pick up" a nerve being compromised? Have any patients shown complications post-surgery that weren't detected during surgery?

                      Will a brace be needed post-op?

                      What are chances of increased stress leading to future degeneration on the unfused segments below fusion?

                      Hope this is helpful & not too confusing

                      Renee

                      Comment


                      • #41
                        OMG!!! Renee, where were you with all those awesome questions when Nicole was having surgery? I didn't ask so many of them!!!!! Especially the specific ones about the screws. Yikes!!!

                        Our anesthesiologist at CHOP was talked about by the nurses as a genious. He was also a cardiologist. Can you imagine that. Meanwhile he seemed like such a regular guy, which is what the nurses said about him as well. The entire team has an amazing reputation.
                        Melissa
                        From Bucks County, Pa., USA

                        Mom to Matthew,19, Jessica, 17, and Nicole, 14
                        Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                        Comment


                        • #42
                          CHOP gave me the phone number of the local red cross and they gave me all the info I needed. We were very lucky to have spent a good deal of time with Dr. Dormans during pre-op. He answered all of our questions and we didn't feel rushed. But most of our questions were asked at the appt. before when we discussed the surgery.

                          A multivitamin over the counter is good.
                          Melissa
                          From Bucks County, Pa., USA

                          Mom to Matthew,19, Jessica, 17, and Nicole, 14
                          Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                          Comment


                          • #43
                            We were just told to use an over the counter multi vitamin w/ iron, ended up using Flintstones chewables (she hated them, but the ones you swallow were too big for her--I have 2 whole bottles that will never be used ). They told me to have her on the vitamins for 2 months prior, and 2 months after surgery. And, feed iron rich foods, I read somewhere that vitamin C helps the body absorb the iron more easily, so I kept pushing the orange juice, too! Must have worked as her blood count was 15 prior to surgery (they said that was excellent), and she did not need any blood (they used the cell saver). She was not eligible to donate her own, weight was too low, and absolutely no one in the family was her blood type, so, we were going to use a blood donor, something that I really stressed over. Thankfully, it wasn't even needed! Also, I bought exercise balls to keep her flexible, and we used them at least once a day, they seemed really good for bending and stretching exercises for her, and flexing the spine over the ball.

                            Try to take it easy and not worry too much. We were soooo busy all summer I didn't think about it too much, then, the last 2 weeks I kept fretting about everything. Once it is over, I had such a sigh of relief. Hopefully, everything will go well, there is alot of good advice here for you.
                            Last edited by emma12; 10-11-2007, 03:06 PM.

                            Comment


                            • #44
                              Hi Renee,
                              What can I say but WOW! Do you work in the medical profession? Once I picked my jaw up off the floor, I scrambled to write down all those AWESOME questions in my notebook. I must admit, after I read your post, I felt really, really stupid! I would never, ever, in a MILLION years thought to ask some of those questions. You are so incredibly informed (as are lots of other people on this forum!) I thank God every day that I found all of you wonderful people.

                              Did they use pedicle screws for your son's surgery? Pardon my ignorance here, but if they don't use pedicle screws, then what type of screws do they use as an alternative? Did Joe have a brace after surgery? I remember Melissa mentioning that Nicole might need to wear a clam shell brace after her surgery.

                              Emma, Sherie and Melissa - thank you for all your input as well.

                              Sherie - I'll be anxious to hear how Sheena's surgery goes. I'll be thinking about both of you and stalking the forum hourly for your first post!

                              Melissa - do you remember the name of Nicole's anesthesiologist? Darn. A cardiologist AND an anesthesiologist....I'm starting to feel stupid again......

                              Thanks again ladies,
                              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!

                              Comment


                              • #45
                                Lori,

                                Nicole went to school today. She went to 3 classes and then came home. It was a success. I was so worried. I felt like I had just dropped her off for a few hours at pre-school. Her friends all decorated her locker, but since she is not going to her locker for now, she didn't get to see it.

                                I am sorry that I don't remember his name. But I am sure you could find out. He was the head of the team. Believe me, I didn't ask any of those specific questions about placement of screws. But remember, Lori, you are not talking to someone who is going to say, "Gee, why didn't I think of that?" You are talking to a top surgeon at a top hospital. Ask him how many spinal fusions he has done and you will be assured that he knows what he is doing. Dr. Dormans has done about two thousand, I believe.

                                Anyway, about the vitamins. I break the ladies vitamins in half with my hands and Nicole swallows them. She hates them, but hates Flintstones even more.


                                Totally off topic but I have to share this. Our puppy Roxy (a little white bichon) just got her Halloween costume. She is going to be a ballerina. It is a pink tutu. Please, please, don't think any less of me. I really am very normal. But she is so cute and looks so cute in this. Since I have to go out with Nicole and all of her friends (help carry heavy candy bag and take her home if she is tired) may as well bring Roxy along.
                                Melissa
                                From Bucks County, Pa., USA

                                Mom to Matthew,19, Jessica, 17, and Nicole, 14
                                Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                                Comment

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