After Two Years Magec Rods Replacing Traditional Rods… Or Not!

I received a call from Cincinnati Children’s Hospital informing me that Cole needed to be seen by Plastics for his next rod lengthening for March 2023. I was quite confused and, of course, insisted the Doctor call me to explain because Cole has had this procedure five times now since having the traditional growing rods placed August 2020 and we’ve never seen plastics. The lady delivering the message insisted that Plastics has been in the operating room everytime Cole has had a lengthening, but I know that’s impossible. Mark and I are so inquisitive and understand everyone in the room during one of Cole’s procedures. Not to mention I sign each and every authorization form along with each surgeon that is in the room with him. Meanwhile, I wait two weeks for someone to call me back and when the nurse practitioner from Orthopedics calls me, she drops some incredibly surprising news. The surgeon plans to swap out Cole’s traditional rods with MAGnetic Expansion Control (Magec Rods), pronounced magic. In all seriousness there is nothing magic about them. There have been many recalls, countries that ban them, and they don’t work any better than the traditional growing rods. Some patients swear by them and other patients (that have had issues) hate them. The huge advantage of the Magec rods are the lengthenings. They are substantially less invasive. In fact, no anesthesia, no cutting open the back, and no hospitals. It’s a clinic appointment, approximately twenty minutes long. Magec rods differ in how they expand. These rods are lengthened using powerful magnets in 3 to 6 month intervals using a short, non-invasive procedure. Due to Cole having so many lengthenings and now swapping out the traditional rods with the Magec rods, the surgeon wants plastics to perform the closing to ensure aesthetically it looks good and is done as perfect as possible. I end the call still insisting I speak directly to the surgeon because I have questions, lots of them. Go figure, the surgeon is on a mission trip and won’t be back until mid February.

The most ironic part of this whole situation is last August after his last lengthening, we specifically asked the surgeon about Magec rods and he stated Cole was much too small. In fact, I specifically, recall him stating that Cole was nowhere near big enough for MAGec rods. We’ve been advocating for Cole for eight years now and we’ve come across a significant amount of medical errors so we always make sure we do our due diligence. It’s important for me to understand how in August Cole was much too small and now fours months later, minimal growth, no new xrays, or even being seen by the surgeon, he’s suddenly big enough and scheduled for Magec rods.

If you’ve read my first blog (almost three years ago) on Cole getting scoliosis surgery, you know I was completely devastated when we found out Cole wasn’t a candidate for MAGec rods. Literally, after he came out of surgery six hours later and us expecting him to have MAGec rods. I had done a substantial amount of research on both the traditional growing rods and MAGec rods and had my mind set on MAGec since it’s much less invasive and requires less surgeries. Prior to having my son the most difficult daily decision my husband, my daughter, and I made was what to eat for dinner and where our next vacation would take us. The last eight years has, seriously, been daily decisions pertaining to the well-being and health of my miracle son. Some would believe and most do believe, you simply do what the Doctors tell you to do. The problem with this and I never would have known, prior to Cole, is they truly don’t have the answer and they are guessing based on historical data. I can tell you this, pretty adamantly, there is not much (if any) historical data when it comes to Cole. He is completely unique! The other thing that is imperatively important to understand is that each surgeon or Doctor has their specialty. The analogy I like to use is a handyman. Sure, there are some people who are a “jack of all trades” and they can do electric, plumbing, drywall, flooring, framing, etc. However, it’s a high probability that if you hire an actual electrician, who is an electrician by trade and has practiced for twenty years, you will have a better and more up to code finished project compared to a handyman that understands electric and maybe has done it a couple times. Now, this is certainly not always the case, there are always exceptions to this rule. In Cole’s medical situation since he has some type of anomaly from head to toe, the only two people that truly keep track of his entire body are Mark and I. I can’t even tell you how many times one Doctor has tried to prescribe a medicine, but it either can’t be taken due to his kidney or shouldn’t be taken due to his airway anatomy. Some would believe that maybe your pediatrician should be the Doctor that keeps track of everything, but I assure you, with these medically fragile kiddos it does not work like that. Mark and I are constantly researching, speaking to every Doctor, and controlling each and everything we can control.

When you really aren’t in control of a situation and it’s completely out of your hands, you have only one choice… Accept it! Trying to change reality is a battle you will almost certainly lose. I went a step further in this psychological battle and I convinced myself that growing rods were better for Cole than MAGec rods because they’ve been around since 1950s compared to the MAGec rods that have only been FDA approved 2014. However, every six months after the surgeon has to reopen Cole’s back and lengthen the rods, seeing my son in pain and discomfort for weeks absolutely breaks my heart. During this time of discomfort and pain makes me want the MAGec rods so he doesn’t have to continue enduring this every six months. Post surgery, every time, I ask the question, “Is he big enough for MAGec rods?” Inevitably, the surgeon tells us no and he has a long way to go before that happens. Now with zero notice we are being told, suddenly, Cole is big enough and planned to get MAGec rods in March of 2023.

As I reflect on how I feel, one would think, I’d be jumping for joy that he is finally a candidate for MAGec. Here’s what is really going through my head. How do we know he’s truly a candidate? What happens if he gets to the operating room, they open him up, taking the growing rods out, and the MAGec rods don’t fit? Should we be putting him through this extensive procedure which means days in the hospital? Should we be telling the surgeon we want him to simply have a lengthening and nothing else so Cole goes home the same day? Have these growing rods been lengthened to their full extent? Should we wait until they have been lengthen fully to do any swapping? Should we get a second opinion? I joined a group of other parents whose children have scoliosis and there have been so many new medical enhancements for treatment of scoliosis. Late 2019 the FDA approved vertebral body tethering (VBT) as a treatment for pediatric scoliosis. In the VBT surgery, the spine is accessed from the front of the child rather than the back. A flexible cord (tether) is attached to the vertebrae. The surgeons make a few small incisions between the ribs, using a tiny camera through the chest cavity, placing screws along the spine to hold the tether in place. Immediately after surgery the curve should show improvement. The curve will then continue to improve as the spine adjusts to the tension on the tether as the child’s spine grows. This new innovative option allows the spine to move and bend, enabling range of motion in the back. The options are beginning to feel overwhelming. To a significantly lesser degree, it’s like going to a restaurant with a huge menu and not knowing what to choose because there are too many options. The difference is, this is a massive surgery, it’s my sons life, and this decision can not be taken lightly. I begin researching which Doctors developed these new innovative medical technologies and surgeries for scoliosis and how many patients have had this and the percentage of success versus failures. This becomes complicated and overwhelming to say the least. If we were to do one of the innovative surgeries, we would need to introduce Cole to a different hospital, group of Doctors, in a different state. To some, this may not seem like a big ordeal but I assure you, it is. Cole is extremely complicated from a medical perspective and we have only truly felt comfortable in Cincinnati. We do know and we are prepared for, in his near future, to introduce him to Boston hospital because they are (hands down today) the best in the world for kidney transplants. However, right now, I am not sure I am ready for a new hospital, new Doctors, and a bunch of opinions on how to fix him.

Meanwhile we schedule the appointment for plastics, they want to see Cole in person prior to the actual surgery. In addition, we bundle all the preoperative procedures as well so we aren’t coming to Cincinnati for just one appointment. We meet with plastics and she is extremely informative on how she wraps the muscles around the rods and utilizes integra since these smaller kiddos have less room and skin. Integra serves as a scaffolding for the growth of a neodermis. Blood vessels and other cells migrate into the matrix and begin to lay down a new layer of dermis. The impermeable silicone layer serves to close the wound and prevent fluid egress. I, of course, ask a ton of questions to fully understand exactly what she will do in the operating room and any and all potential issues. I also bring up that the surgeon had originally stated Cole was too small for Magec rods and now all of a sudden he’s scheduled for them. The plastics surgeon simply said, yes, sometimes we change our minds. She said it very nonchalantly and I get it when it comes to what shirt you want to wear for the day. However, when it comes to a massive surgery for my little guy who has literally endured so much, it needs to be much more thought out. As the Doctor and I were talking I noticed Cole signing away with the resident. It was so awesome, they were full blown in an ASL conversation discussing animals and how many dogs the resident has, what color, and what their names are. It seems so simple and we certainly take it for granite, when we just have a simple conversation with another human being. However, not nearly enough people know ASL so Cole is extremely limited of who understands him and who can communicate with him. We wrapped up the appointment feeling pretty comfortable with what plastics was going to do and how long it was going to take.

The closer we got to his surgery date, the more uneasy I was feeling about this whole ordeal. The Surgeon being out of the country and unavailable only made it worse. I was so conflicted in thought. On one hand I had been waiting for this MAGec rods and wanted so badly for Cole to have these so we could say good bye to surgery every six months. To outsiders, it may seem like just two times per year. However, there are weeks of preoperative things to complete, a tremendous amount of anxiety, hospital stays, anesthesia, and weeks of recovery. On the other hand, I was so nervous of the thought that Cole would have his entire back opened up, current rods taken out, and finding out in the operating room that he’s too small. This would require unnecessary days sleeping at the hospital, several more weeks of recovery time, and increase chance of infection and issues. I ended up reaching out to Dr ABC which is a team of Doctors that invented the ASC and VBT which is the flexible tether versus the rods that are bolted to the spine. I spent a significant amount of time on a call with them discussing Cole. At first thought, they didn’t really believe Cole would be a candidate. Mostly, due to him already being implanted with the rods. After one year or so it is very common for rods to auto fuse. Auto fuse is, essentially, where bone grows together in the spine and if this takes place the flexible tether will not work. I was asked to send xrays and many other things pertaining to Cole so they could review his case prior to us making a visit to New Jersey. I also asked their opinion on swapping out to MAGec rods in March. Their response was an adamant no, regardless, whether he was a candidate for tether or not. They explained that everytime you open up the back and take rods out, you run a higher risk of issues. They insisted that if he’s had the rods for two years and so far so good, don’t take the risk. I felt more confident in the direction that I was leaning which was just the traditional lengthening and not the MAGec rods, but there was also guilt I felt. The guilt was coming from the fact that, perhaps, Cole would have been a candidate for the tether had we not implanted him August 2020. Then the reality kicked in for me and the truth is, we prolonged surgery as long as we could and the rods ensured that his spine didn’t begin crushing his organs, so I can’t look back on that decision and only forward.

Speaking of forward, we were only weeks away from surgery and I still hadn’t heard back from the surgeon. In all fairness, I knew he was out of the country until February 13th so to expect a call before that was completely unrealistic, but the minute the 13th rolled around I was anxiously awaiting. I finally received the call February 20th in the evening. Literally, 9 days before surgery date. I explained my concerns and asked all my questions and his response was simply, you’re the one that has been wanting MAGec rods. It took me a minute to take a deep breath and just continue focusing on making the right decisions pertaining to Cole and not getting offended by anything else. We had an in depth conversation and agreed on not moving forward with the MAGec rods. We landed on just doing the traditional lengthening, which he has had 5 times, I can’t help but think about the importance of open lines of communication. I’m, literally, shocked that he would say, “well, you’re the one that wanted MAGec rods.” He then proceeded to explain that the traditional lengthening is easy for him and its extremely probable that Cole would be too small for MAGec and we would find that out in the operating room. All of this, absolutely, flabbergasted me. I get it! Cole is not his child, he’s mine. I’m not a surgeon, he is! However, shouldn’t a risk versus reward assessment be done in any type of procedure? I quickly turn my irritations into energy being effective and efficient at completed all the tasks and arrangements that need to be completed prior to surgery.

Monday, February 27th while getting ready for school I inform Cole that he will go to school Monday and Tuesday, Wednesday we will be going to the hospital for spine surgery. His initial response is no, I don’t want to go to the Doctor. I explained that it’s not an option, we have to because he has rods in his back that need extending and that’s the only way for him to grow. I never really know how much he really understands, but one thing he understands fully is his hatred for surgery. He tells me he doesn’t want tape. This kid hates tape on his back because he knows what goes on must come off. It’s brutal pulling the tape off two weeks post surgery and he’s not the only one who cries when we do it. Later that afternoon, I received an email from his teacher informing me that Cole had a hard time paying attention and just wasn’t himself today. As soon as I read that, I immediately responded with a reminder that he will have spine surgery on Wednesday and that I had informed him Monday morning. I go through this constant debate over when and how to tell Cole about these procedures. He doesn’t like surprises and he appreciates knowing his schedule. However, he knows how much pain and discomfort he feels everytime he has this spine surgery and he, obviously, doesn’t like it. We had the conversation numerous times and by Tuesday evening, he had it all figured out. He said, first the doctor will put him to sleep, then he will wake up, and go home. He, specifically, said no lengthening of the rods and no tape. I could see him fighting back the tears and I couldn’t help but to pick him up , give him a huge hug and tell him he’s such a brave boy. Now maybe that’s a statement you just tell people to make the situation better. However, I truly do believe Cole is the bravest boy I’ve ever met. In fact, it absolutely destroys me inside to see his fear, watch him fighting back the tears because he’s too proud to cry, and for him to beg not to go to the Doctor. These are the times that I wish, again, I could make all this go away for him. I have a small pity party, (in my head) just for seconds, because my total focus is on him and ensuring I’m answering all his questions and reassuring him that he’s done this before and is always ok. I inform the kids we have to go to bed early because Mom and Dad and Cole have to leave at 3AM to get to Cincinnati by 10EST. Lexi and Cole wanted to play and Lexi wanted to cheer up her brother because her heart always hurts when his does. They went in the basement and competed for Grandma’s attention while they did performances. Roller skating, aerial silk, swinging, and dance performances. Lexi had taught Cole how to go upside down on the aerial silk and he did exactly that. Grandma looked like she was going to have a heart attack and the more nervous she became, the more the kids wanted to do dangerous things. We ended up allowing them to stay up later so they could continue having fun. After all, I knew that after that evening it would be a while before Cole could do any of this for sometime post surgery.

We wake up at 2:30AM, but truthfully, I’m not certain I even slept a wink because my mind was playing overtime and I knew I had to wake up extremely early. Lexi begged us to wake her up to say bye. She was so concerned about us not doing this, she wanted to set her alarm at 2AM. I was adamant that she didn’t do this because alarms do not wake her up, just everyone else in the house. Our goal was to walk out of the door by 3:15AM and we were in the car by 3:13AM. We grabbed the ventilator, swapped out the dry circuit since the humidity chamber requires a second outlet and the truck only has one. We ensure we have oxygen tanks for post surgery. We stopped his feeds at 2AM, but have food for after surgery. It’s second nature, at this point, for Mark and I but it still amazes me how efficient we are with so many medical necessities and apparatus’ that are required to travel with this little guy. I really thought Cole would sleep, but not at all. We got in the car and he was wide eyed, playing Roblox, and sporadically asking about the Doctor. A couple hours into the drive, Cole says he needs to go to the bathroom. We stop at the only place (gas station) that’s open at 5:000AM and it happens to have multiple claw machines. For anyone that knows Cole, his weakness is these dang games that are totally rigged and weighted and stuck together to make it almost impossible to win things. Nonetheless, I’m negotiating with him trying to get him to go to the bathroom first. While in the bathroom he tells me to go back to the car and get my purse so I have money for the machines. I, of course, do not just immediately run to the car and simply wait for him to be all done with the bathroom. Much to our surprise when we get out, Mark is prepared, with dollar bills so Cole can get his claw game fix. $3 later and no toy, Cole was not very happy about leaving. The truth is, if he wasn’t on his way to surgery, the likelihood we would be even played those games is low. I have a soft spot on days like this where I feel like he could ask me for anything and I’d give in.

We arrive at Cincinnati Childrens Hospital at exactly 9:42AM and we check in right on time at 10AM. As soon as we arrive, Cole begins signing that he doesn’t want the Doctor to lengthen his rods or put tape on him. He wants to be gassed, go to sleep, wake up, and then go home. It’s so hard to tell him that the lengthening is necessary when he is fighting back tears, it makes it easier to just simply tell all of the Doctors that he doesn’t want a lengthening and doesn’t want tape. There are so many different Doctors from different departments that come in. Plastics, anesthesia, orthopedics, residents, etc. All of them committed to no tape and no lengthening. The orthopedic surgeon said he will try his best. Cole told both anesthesiologists that he was ready for laughing gas and to go to sleep. Every person that walked in to his pre-op room was asked if they have a dog. It was the cutest thing watching all these people show off their dogs to Cole on their phones. One lady dressed up her dog for Christmas and Cole told her the dog looked mad. Cole was so happy and everyone was committed to keeping him happy. I, jokingly, told Cole it’s a prerequisite to have a dog in order to work at this hospital. Right before noon we walked together to the room where Cole is put to sleep and I stood by his side the entire time. He held his head up high, was more brave than any other kid out there, and just ready to get the show on the road so he could go home. We walk into the room and he saw the CT scan machine. I didn’t tell him this part because, honestly, I thought he’d be sleeping at this point and deemed it unnecessary. We explained we just needed him to go to the next table so they could put him to sleep. He obliged as he was showing all these people (who gave him their undivided attention) a picture of his bengal cat, Kneesea. As soon as they hooked it up to his trach, I told them this stuff usually has him out within twenty seconds. The lady said it usually takes a couple minutes and sure enough, 15 seconds and his eyes started rolling back and we were laying him down. I’m not saying that these people don’t know their job, but when it comes to Cole after hundreds of times, I’ve got it nailed down. I kiss his check, say goodbye, and of course shed some tears. No matter how many times we’ve done this, it doesn’t get easier just more familiar. He’s still my baby boy and I still wish for him that none of this had to happen.

Coincidentally, today happens to be in the upper 70s in Cincinnati. We decided to walk to lunch which is a approximately a couple miles. We have a favorite place called Mio’s which has good food, good beer, and even better fried pickles. Anyway, we eat lunch and on the way walking back we were called and informed the orthopedic surgeon was done and he was able to adjust 1cm or so. We met with the surgeon and he stated Cole did just fine, has another four to five lengthenings with these rods, and plastics is closing him up. It’s now 2:25PM and we get called to meet with plastics. They were able to close him up, although she stated that he is very small and the hardware is very big so it’s definitely a challenge and takes a little longer. She informs us that she will now be a part if every spine surgery to do the closure. She did end up using integral and expects it to do well. Overall, she stated that we should only be concerned if there is drainage, leakage, or anything out of the norm during healing. We, anxiously, await for the PACU to call us. When they call that means that Cole is out of surgery and we always ensure we get back there before he wakes up. Sure enough, by 3PM we get the call. We walk back there as fast as we can and the anesthesiologist explains how things went and all the narcotics (we previously discussed) that were used. He also mentioned he didn’t give the extra 1ml of morphine due to our request, but it was in his pocket and he could do this via I.V. if needed. We have had issues with Cole just waking up and nurses and doctors deciding to give him pain meds because he wakes up unhappy. I don’t want to give Cole pain meds because he’s unhappy, but I’m more than willing to give him pain meds for pain. Nonetheless, Cole wakes up and he is very upset because they did the lengthening and the tape and he told everyone not to. He also signed that his back hurts. I opted to have the 1ml of morphine administered to ensure he wasn’t in pain because he looked very uncomfortable. We did all the discharge paperwork, got his meds for home, and we were out of there right at 4PM. Right now he is sleeping, peacefully, in the truck with me in the backseat. I’m really hoping that he has a speedy recovery and back to his baseline in no time, but I know for a fact that he will be down for the count at least until this weekend.