Author: D W

For that August 20, 2014 appoint, Dr. C. asked us if we needed a couple weeks to process and come back to ask questions, or if we thought we were comfortable with the general plan.  There was no pressure.  Nothing he had told us was out of line with things I’d read online, and we all knew she was going to have to have surgery either way.  Dr. C. had more than earned our trust with his knowledge and demeanor, so we said we were comfortable going ahead and scheduling.  Surgery was to be scheduled for November 2014, and we could schedule a final consult if we wanted it.

Dr. C. personally called my cell phone a couple weeks later.  He told me after looking through all the x-rays and MRI, he didn’t think he could stop at L3 but would have to go to L4, so she would be fused from T4 (4th thoracic vertebra) to L4 (fourth lumbar vertebra).  He was afraid he couldn’t get enough correction stopping at L3, and that she might progress further if he didn’t go to L4. It was a punch in the gut considering that what I’d read online said fusing to L4 means quite a loss of mobility/flexibility and increased risk for spine issues later in life.  I asked him what the increased risk meant–would she have pain from now on, or just a possibility of issues later?  He explained that she should be fine without pain after healing from the surgeries, but would simply have a greater risk of further fusion by the time she’s 40.  He also said he wanted to break up the surgeries into 3 phases rather than 2, using the first surgery for anterior (front) lumbar release (disc removal) and fusion, the second for anterior thoracic release and fusion, and the third for hooks, screws, rods, and fusion.  He made sure I had no further questions, and after telling him no, I hung up and cried.  You never want your child to go through something like this, or to have a possibility hanging over her head that later in life there may be other related issues.  I wanted this to be the permanent fix to her scoliosis.  But I reminded myself that the surgical techniques they use now are amazingly advanced from the techniques they used just 20 years ago.  Surely those techniques will advance even more in the next 20-30 years?  I told her that night what Dr. C. had said, explaining there’s a chance she’ll need more surgery by the time she’s 40, but she shrugged it off.  40 seems an eternity away to an 11 year old.

A week or two later, we got a call from the surgery scheduler telling us when the surgeries would be: Nov 10, 14, and 17.  She told us we’d receive paperwork for each surgery and instructions.  She’d also have pre-surgery lab work to do, which would be detailed in the paperwork.  And there we hurried up and waited, celebrated her 12th birthday, went ice skating since she won’t be able to do that for awhile after surgery, and otherwise tried to pass the time without dwelling on things too much.  We opted to set up directed donation blood from family members, and we set to work getting her blood typed and lining up the donors.  Pre-surgery labs were scheduled for Oct 23, 2014, and we also scheduled a final appointment with Dr. C. to discuss the final plan.  He told us he would still like to stop the fusions at L3, but also still thought he’d have to go to L4.  We asked about the risks for back issues later in life.  DH wanted to know if the risk could be quantified.  Dr. C. said it was a good question but difficult to answer given all the variables involved.  He said the best guess he could give was a 20% chance of needing further fusion, but that if Girl Child maintains a healthy weight and exercises, she may be able to avoid back issues altogether.  He showed us a model spine and talked about the titanium hooks, rods, and screws that he’d put in her back to straighten her out.  We then went to the lab appointment where Girl Child proceeded to rock her way through everything they asked of her.  They were great at explaining to her what would happen both for labs and on surgery day, and they answered all the questions we each had.

Throughout all of this, Girl Child has impressed us with the strength and courage she’s shown.  She joked about her future scars being her badges of honor.  She talked about wanting to just get it over with so she can get out of pain. Only occasionally, and only as we got closer to the surgery dates did she express nervousness.  She actually didn’t want me to tell her 9 year old brother she was feeling nervous, because she didn’t want him to worry.  Tucking her in the night before the first surgery, she told me she was actually worried that we would get updates on her during surgery, but she couldn’t get updates on how we were doing while she was in there.  Talk about melting a mother’s heart….

So that brings us to surgery and our scoliosis warrior becoming Titanium Girl.  I look forward to seeing her posts and the things she shares in this journey which is more hers than ours.

It was Monday, August 11, 2014.  After packing up books and electronics to occupy ourselves with in the likelihood that our worked in appointment would take several hours to get to, we picked up Girl Child from school and headed to the spine center. We weren’t even sure if we were going to see the same doctor (Dr. C.), but when we arrived, they told us we were still seeing him.  We filled out the paperwork and settled in for the anticipated long wait, but they called us back within 5 minutes.  We spoke with an assistant first, and when she got a look at the x-ray, it was a repeat of the scene with the front desk nurse; she picked her jaw up off the floor then proceeded through a series of questions.  She asked Girl Child if she had any headaches (not unless she needs new glasses), issues with bathroom accidents or difficulty going to the bathroom (none of that), any pain (yes), any numbness or tingling (no).  Then she told us Dr. C. would be in momentarily.  We again figured we would be in for a long wait, but he came in a minute later.

He stood in the door and took the sight of us in. “You all look nervous.”  We told him that looking at the x-ray, we knew we had reason to be.  He sat down to start looking through files.  “Ah, you’re the folks who came this morning!  I glanced at it, but the nurse just told me I’d be seeing you guys today no matter what, and I know better than to argue with her, so I told her to bring me a sandwich for lunch.”  We liked him immediately.  He called up the x-ray and said, “Yep, she’s the real deal.”  He measured her curves–an S-curve–at 84 on top and 91 degrees at the bottom, then he looked at us and said he was  probably going to ruin our day in one fell swoop.  Don’t read any callousness into that.  His demeanor was not remotely callous but rather a magical and difficult-to-describe combination of honesty, kindness, and light-heartedness where he could reasonably inject it. We told him we’re fairly well educated and appreciate candor.  He told us there are only three options for scoliosis treatment, the information I already knew.

“We can wait and see,” he said.

I said, “That’s not a wait and see curve.”

“No, it isn’t.  We can do a brace, but you know what?”

“That’s not a brace curve, either, is it?”

“No, it isn’t.  So we only have one other option: surgery.”

We’d known it since we saw the x-ray the night before, but Girl Child had not really processed this yet.  Dr. C. told us we’d need some more x-rays as well as an MRI, because of the speed with which her curves progressed.  While most adolescent scoliosis has no known underlying cause, it also typically doesn’t progress from zero to train wreck in the course of a year unless there’s something else going on to cause that. One big thing he was looking for was something called “tethered spinal cord” where the spinal cord gets stuck along the spinal column and tugs as the child grows. There were about three other unpronounceable issues he was looking for as well.  On an up note, he told us Girl Child’s case actually isn’t the worst he’s ever seen (127 degrees!!!), which was actually very comforting to me.  He also told us a little of his background as a member of the Scoliosis Research Society who studied with the doctor who literally wrote the book on spine surgery.

As soon as he walked out of the room to get the x-ray set up, Girl Child began sobbing, fearing this big unknown of surgery.  The radiology tech came in and found her sobbing in my arms, and she talked to her for a bit, telling her it’s understandable to be afraid of the unknown, but that she’d feel so much better once she is fixed up.  We took the x-rays that day, and the MRI was scheduled for  that Friday, Aug 15 with a follow up at his office on the following Wednesday, Aug 20.  She told us she didn’t want to hear the word “surgery” since it was so scary for her.  Instead, she decided we should use a euphemism for it: “fluffy ice cream”.  We gladly used this euphemism, knowing how hard this all was for us to face much less how much harder it would be to face it at 11.  That night when I tucked her in, she told me she wasn’t scared of the word surgery any more, and that she had accepted it.  I was floored at how well she was processing through things.

Girl Child did amazingly well with the MRI, never showing fear or nervousness.  They scheduled it at the children’s hospital, so the staff were all very kind and very good at explaining what to expect.  We joked around about going into Magneto’s Lair and living to tell about it.  We got dinner together afterwards and set about having a normal-as-possible weekend not worrying about the results.  I’d hoped since she wasn’t having neurological issues that the MRI would show no  underlying problems, and I felt strangely calm about the whole thing. Wednesday came and we were back in Dr. C’s office.  He gave us the best news possible: no underlying complications.  She just has an incredibly rare case of adolescent idiopathic scoliosis that progressed much faster and much further than typical.  He got another few x-rays: bending toward each side and an x-ray under traction where she held onto the table and he pulled her ankles.  He joked around with her about the lead apron and neck shield he was wearing, asking if she thought it would be the latest fashion, and he promised not to pull her in half for the traction x-ray.

After looking at those x-rays, he said her curves looked fairly flexible, and he figured he could correct at least 50%, which is the typical correction aimed for in surgery.  But he also told us that the goal wouldn’t actually be to make her perfectly straight–they actually can’t completely correct curves so large–but rather the goal was to give her a balanced spine.  He also wanted her to be able to walk down the street and no one ever notice any difference compared to anyone else.  He talked about needing to do the correction as two surgeries: one surgery would go in the front side, remove a rib,remove vertebral discs, and fuse vertebrae; the other surgery would go in through the back to add screws, hooks, and rods and fuse vertebrae on that side as well.  He was hoping he could stop the fusions at L3–the third lumbar vertebra–because stopping there meant the least chance for back problems later in life.  However, he emphasized how important it is to plan plan plan, and that he would be studying her images a lot in the coming weeks to devise the best plan.

It was a lot to take in, but he gave us ample time and attention for questions.  Girl Child asked about pain, and he told her he wasn’t going to lie, removing a rib would especially hurt, as would other things he’d have to do, but that he promised her pain would be controlled with a pain pump when she needed it.  At one point, she looked at us and said, “I’m tired” (which she says a lot), and he looked up immediately and asked her very seriously, “What can I do for you today?”  Her tiredness had nothing to do with the scoliosis, but his very serious concern for her was comforting, and his recognition of her as someone who should be fully involved in the discussion was exactly what she needed.  Throughout everything he and his staff have shown the utmost in caring, concern, and kindness, and it’s really helped us…

(To be continued…)

Allow me to back up and tell the story, though I’ll apologize now, because it’s a long one, even though it only covers several months.  In late July 2014, I thought I saw Girl Child limping as we walked across a parking lot.  I asked her if she hurt something, and she said no, and went on walking seemingly normally.  Several days later, she was running around outside with our neighbor girls, and our neighbor noticed a funny hitch in her step.  I asked her to walk in front of us, but she walked just fine.  No hitch. No limp.  But several minutes later, after going back to playing with the girls, and once she was no longer self-conscious about it, I saw it too.

As we walked home, I was walking behind her, and I noticed that her right shoulder blade was sticking out noticeably in a shirt that was tighter than she typically wore.  I began to worry, thinking something was broken.  But how could she have broken something without knowing it?  I pulled up her shirt and saw a huge hump in her lower left back along with that eerily prominent right shoulder blade.  She looked crooked.  I told her to stand up straight, and she said she was.  But she was leaning to her left, her right shoulder sitting higher than the other. The worry turned to panic, as I let slip, “Oh my God, what’s wrong? Something’s wrong,” and unfortunately my panic caused her to become afraid and tearful.

Something clicked in the dark recesses of my mind. This must be scoliosis. Scoliosis is fixable. Right??  Then a snippet of a half forgotten conversation with my mother-in-law from probably 15 years ago bubbled up.  My sister R.’s daughter A. had to have rods put in her spine because of scoliosis.  Did this run in families?  I emailed my mother-in-law, and she wrote back that yes, her sister’s daughter and granddaughter had it and needed surgery; she had it, though exercises in gym class took care of it for her; and her father had had it.  I took a picture of Girl Child to compare online, and it quickly became clear this must be scoliosis.

Girl Child had last gone to her pediatrician in March 2013, and her doctor had screened her for scoliosis at the time and found no issues.  But she wasn’t actually due for another well visit until October 2014, because we’d gotten off our usual well visit timing.  I immediately called and got her an appointment for 3 weeks later, the earliest I could get her in.  Meanwhile I had world class tearful freak outs to DH, my sister, and cousin, and I’m not generally a tearful kind of person.  I started looking back at pictures from the past year, and it looked to me that Girl Child’s shoulder started dropping in the fall of 2013, probably 6 months after she’d been screened by her pediatrician.  And she’d occasionally complained of her back hurting over the course of the last school year, but she’s a middle schooler with tons of books and binders in her backpack, so I hadn’t thought much about it.  Maternal Guilt was overwhelming; how could I have missed it that long??  I watched her at band concerts sitting with presumably good posture, though in pictures, you can see one shoulder dropped.  I had watched her swim in swim class over the summer, thinking she had a beautiful clean line in the water, when all along her spine was twisted up.  The answer to how this went unnoticed, which still doesn’t entirely assuage my inner guilt trip, is that at 11 years old (at the time), we don’t bathe and dress her, so we don’t see her naked hardly at all, and shirts and winter coats can easily hide things like that.  A gradual change over a year or 18 months when you see someone every day doesn’t necessarily register.  What’s more, the schools in our state no longer do scoliosis screenings, so people don’t necessarily even think about scoliosis anymore, unlike decades past when families would get letters detailing the results.

At our pediatrician’s appointment at the beginning of August 2014, she looked at Girl Child and said some cases of scoliosis are “wait and see” cases, mild enough to not worry about, but that hers was significant and required an xray and referral to a spine doctor.  She scheduled the appointment for us–2 months out, though on a waiting list for an earlier appointment if possible–and sent us for an xray that we would need to pick up to take with us to the spine doc appointment.  The report the radiologist sent to our pediatrician that day lacked a measurement of her curves, but it did say she had “marked curvature.”

Now, I’m a researcher.  Not in the sense of running scientific studies, though I’ve done that, too.  No, one of my big coping mechanisms is to research everything I can about a problem.  Knowledge comforts me, even if it’s knowledge I don’t necessarily want to have to face.  So I did a lot of research in a short time.  I found that the most common form of scoliosis, Adolescent Idiopathic Scoliosis, as the name implies, shows up in adolescence when kids hit their growth spurts.  It’s a spine deformity marked by abnormal side to side curving and twisting of the vertebral column.  It can present as a C-curve, with a single angle of curvature, or as an S-curve with two angles.  Around 2-3% of adolescents have some level of curvature of 10 degrees or greater, but only 20% of those kids need some kind of treatment for it–0.3%-0.5% of total children .  The number of kids needing surgery for it is even smaller. For reasons unknown to medical science, girls are 8 times more likely than boys to progress to a point where treatment is needed.  “Idiopathic” means unknown.  Despite scoliosis being one of the oldest documented deformities, stretching back to ancient times, we still don’t know what causes it.  30% of scoliosis kids have a family history of it, but the actual cause and mechanism by which the spine starts curving remains a mystery.

There are really only three options for treating scoliosis, depending on the severity: wait and see, which includes stretches and exercises that don’t have any actual studied effects; for moderate curves back braces are used, though they don’t actually ever correct scoliosis, only keep it in check as the child grows; or surgery for the worst cases, requiring steel or titanium rods and fusing multiple levels of the spine. We desperately hoped Girl Child’s case would only need a brace, but looking at her back, it was hard to believe the kind of curvature we saw would be something she’d be expected to just live with into adulthood.  Still, we had hope.  And then we picked up the x-ray.

Knowing we needed it to take to the spine doc appointment, I picked it up to have on hand in case we were able to get an appointment earlier than 2 months away.  Looking at the files on the cd, they were in a format not readable by typical image programs, but that night after the kids were in bed, DH was able to find a program that could display the image for us.  And this is what we saw:

You don’t have to be a radiologist to know that’s bad.  No one’s spine should ever look like Harry Potter’s lightning bolt scar.  No one’s ribs should be vertical. Knowing then that we would be looking at surgery, we were scared.  We resolved that I would start calling the spine center’s office in the morning to try to get an earlier appointment, but I worried they would simply write me off as an overly worried mom.  We didn’t sleep that night.  The next morning, Girl Child asked if we’d gotten the image viewing working to see her x-ray, and we told her we had.  We showed her, and she said, “Huh..that looks kind of scary,” but she kind of shrugged it off and headed out to the bus.  DH told me he downloaded the x-ray image onto his phone and that he planned to go down to the spine doc’s office and show them in an effort to get worked in sooner.  A picture’s worth a thousand words, right?

And it was.  When DH showed the image to the front desk nurse, she had to pick her jaw up off the desk before she asked if she could take his phone and go show the doctor.  She came back out a minute later and said he’d see us that very day at 1pm. We were simultaneously relieved and terrified.  If he was working us in that day, we could quickly get answers and a plan, but it also meant the case must be every bit as bad as we’d feared when we first opened that image….

(To be continued…)

After Girl Child’s first surgery was rescheduled, she was given a brief reprieve from the liquid diet, but had to go back to it in the afternoon before the rescheduled surgery.  After seeing her brother off on the bus to school, I helped her with her pre-surgery shower. In an effort to prevent infection from surgery, she was required to wash with a special germ killing soap (chlorhexidine) and would also be required to wipe down with wipes soaked in the same stuff during her pre-surgery procedures on the surgical floor.

We were due to arrive at the hospital at 11:30 in preparation for the 1pm showtime, and despite the hospital’s parking garage being completely full necessitating us parking in the garage for the hospital next door, we made it right on time.  They called us back and began running through the various questions about medical history and medication reactions, down payment for the surgery itself, etc.  The anesthesiologist, Dr. J., met with us and talked over anesthesia and pain control.  DH mentioned to her that he and his mother have a history of waking up quickly–too quickly–from anesthesia, and Dr. J. made a note of that.  She walked us through the various potential adverse reactions, none of which were very likely but had to be disclosed either way.  She was very kind and spoke directly to Girl Child as much as to us about what to expect. I got teary when I told Dr. J. that Girl Child was worried more for us, that we’d be getting regular updates on how she was doing, but that she would be asleep and unable to get updates on how we were holding up.  I hadn’t wanted to tear up in front of her, but maintaining that brave face was really hard.  We signed the first of what was sure to be many consents during this process.

A nurse came in to start the IV, using a very clever tool that numbed the skin with a CO2 cartridge of lidocaine before the needle stick.  Then she handed Girl Child a hospital gown and me some warmed chlorhexidine wipes so I could do the pre-surgery wipe down.  Dr. C. arrived just as I was wiping her down, and once finished he came in and marked her for the first surgery: a stark line 6 or 8 inches long running along her left flank from just under her shoulder blade down and around to the front rib cage.  He talked about the game plan for this first surgery, which would remove the discs from her lumbar vertebrae.  The overall plan has been to fuse the fourth thoracic vertebra (T4) down to the fourth lumbar vertebra (L4), but we’ve hoped there would be a chance he could save L4.  We asked him if he thought he could stop at L3 today and see what happened, and he’d clearly already been giving this exact plan some thought.  He said he didn’t want to “buy the bridge” as it were, and that he could indeed stop at L3 and take L4 on Monday during the last surgery if need be.  He would need to see what things looked like once he got in there, but that was going to be his plan.  We were relieved; we knew he was taking this decision very seriously.  After checking with us to make sure we had no further questions, he left to get his scrubs on.

Next a nurse in scrubs, E., stepped in and talked about the spinal cord monitoring that would be her job to watch.  She was very sweet and showed Girl Child how she’d have to wear her surgical mask in the OR, but that she’d have a big smile on it for her behind the mask. She even gave Girl Child a big smile and pulled up the mask while she smiled, her eyes continuing to smile above the mask. It definitely put Girl Child at ease.  She told us we might see some pin pricks in various places after the surgery where different electrodes were attached to send impulses from Girl Child’s head to toes to ensure everything was working as it should. With a final smile Spinal Cord Monitor Nurse E. left.

A nurse came to administer the “loopy juice”–versed–in Girl Child’s IV. This was to make her calm and unconcerned in the face of being wheeled away from us.  I asked if the parents couldn’t get in on the versed action, but for whatever reason, they said they couldn’t do that.  I really think this needs to be an offering–bring your kid for surgery, get a couple hours’ worth of anxiolytics.  The versed kicked in, and Girl Child was indeed loopy.  Every.single.thing.we.said brought about a giggle, and she slurred her words more than any drunk fraternity guy I ever knew.  I took a video to show her later of how she answered my questions of her grade in school, instrument she plays, whether she’s qualified to operate a motor vehicle.  Then they asked if we wanted to get some hugs in, and that meant the moment was here, the moment where I had to watch them wheel my baby girl down that long hallway and away from me.  We gave her hugs and suddenly they were wheeling her away and a nurse was pulling us aside to show us some other paperwork. I hurriedly waved to Girl Child before turning my attention to the materials the nurse was showing us.  They didn’t even seem that important, and in retrospect I decided it may have been an intentional (and admittedly genius) method of distracting us as our child was wheeled away from us.  Thanks to that nurse, I didn’t break down, though I’d been on the verge of it for quite awhile.  After we finished going through the papers she had for us, she showed us to the surgical waiting room where we camped out, waiting to hear any news about her progress…