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Sunday, May 27, 2012

Scoliosis: affecting life and pregnancy

Scoliosis is a subject dear to my spine. I've had it since elementary school, though I didn't always know what it was. What is scoliosis? Its a disease within the spinal skeleton that causes the spine to grow into a curve instead of straight up and down. When I was in 1-2 grades, kids poked me in the back and laughed at my protruding shoulder blades. They referred to me as the girl with boobs in her back because basically thats what it looks like to a bunch of kids. Later, at 12 years old, I was walking through a thrift store that my mom frequented a lot. The owner was a nice elderly lady. Well, one day while walking through her store she started staring at me strangely. She came up to us and asked if I had been diagnosed with scoliosis yet. I had never even heard the word before and though my mother had, she never really noticed anything being odd. The lady pointed out some helpful hints for spotting the disease:
  1. If wearing an outfit that zips up the back - the zipper often curves to one side with more progressed cases.
  2. If a person having scoliosis bends over to touch their toes, you will see the shoulder blades protruding at various degrees. One might be higher than the other. This goes for the hips as well.
  3. While standing straight (as a person having the disease can) one side will be lower than the other. One shoulder will appear to be slouched down and standing flat footed can be impossible for more severe cases as mine was.
Well, as you can guess, a visit to the pediatrician led to a visit to a pediatric orthopedic specialist. The best in the region I believe. He was the highest ranking doctor in his field at the time. Doctor R. J. Cummings (http://www.healthgrades.com/physician/dr-robert-cummings-xsvqy). He was very patient, explained everything clearly, and most importantly he never tried to butter up the truth. He told it like it was.
My case was far from usual. First, I had a double curve or S curve. This is where the bones in the spine curve to look like one large S instead of a straight line. Secondly, when they measured the degrees of each curve (tells them how far from a normal straight line it is), I had a 52 on the top and 58 on the bottom. Those are big numbers. First question they had was, "Are you feeling any pain or discomfort?" Well, no? Back pains were never any issue for me. I felt like a normal, healthy 12 year old. The next thing they wondered is why no one noticed until it had progressed that far. Well, mom didn't really notice much as it was. And while I noticed (I got teased for it remember?), I thought it was yet another manifestation of me being oddly different from everyone else. (Which suited me just fine since I enjoyed being the odd one that never fit in anyhow.)

So what does this mean? Well, when you have a more severe case like mine chances are slim that you can get by with a body brace. Mild cases that require treatment but not surgery, can be treated with the use of a body brace that straightens the torso and keeps a person in a rigid position until the bones are taught to grow in a straight line again or until they stop growing altogether. Moms sometimes love this idea for teaching their kids how to sit straight. Ever have your mom say, "Sit up straight! Don't slouch!" Body braces keep you straight whether you like it or not!

For my case and similiar cases, this wouldn't work. I was growing still and at a rate of 2 degrees a month I think it was, it wouldn't have taken much longer for me to end up in a wheel chair paralyzed and in constant pain. Surgery was needed as soon as possible. I began donating my own blood towards my surgery. 1 pint a month for 4 month. Its the safest way and provides for the better healing experience since a body is used to its own blood rather than having to be introduced to someone elses.
The surgery is called Spinal Fusion. For milder curves, 1 rod will be attached or fused to the bones with a few screws. As the bone grows, it follows the shape of the rod ensuring that it stays straight. For a case like mine, 2 rods were needed. The rods were fused with 4 clamps (2 on each side) and lots of screws. I was quite tall with a long torso though. The first surgery I had (out of 3) was done later the same year I was diagnosed. It went very well. Recovery included some strict rules for the next 6 months.
  1. No bending.
  2. No heavy lifting.
  3. No twisting or turning.
  4. No jumping (really is a bummer when you love trampolines and jump ropes).
  5. No strenuous activities that could put pressure or stress on the spine.
I learned to do a lot of things differently. I learned to pick up things with my feet since I couldn't bend. My legs grew stronger since I had to squat down to pick things up if they were too heavy or awkward to get with my feet. I learned to like the couch since I couldn't sleep in my own bed comfortably for quite some time. I got used to having my mother come and help me bathe since I could only stand there and get the front of me. For someone who enjoyed her independence, it was a trial and half.
At 15 years old, I'm having pains in my lower spine. So when I go for another check up, they take a closer look at my X-rays. I find out that a screw had broken and was needing to be replaced because the curve was starting to grow again. Thus started the jokes about bionic girl needing her bolts tightened.... Normally a girl stops growing when she starts her menstrual cycle. May I point out, I'm not normal. I was still growing even though I should have been done 4 years before. Either the growing bone broke the hardware or the hardware broke allowing me to grow sideways again. So, surgery 2 commenced.
All was well for the next 3 years. In between surgeries I developed arthritis in my lower back and hips. This is normal when something metal is installed in the human body. Its often noticed when the weather changes. You feel it in your bones that a storm is coming, that rain is on the way. Just before I turned 18, I started having some pretty strong pain. Thinking that something might have broken again, we went in to check up on it. Everything appeared normal. X-rays showed nothing broken or damaged, blood and urine tests came back normal, and even the bone scan showed nothing out of the ordinary. I also had no fevers indicating infection, but then I don't think I've ever had an infection. Doctor Cummings decided to take the hardware out. I prepared for surgery #3.
It was only after he opened me up and took out all that metal that he found a severe infection eating away at the bones in my lower spine. During the operation, a PICC line was inserted. A PICC line is a peripherally inserted central catheter. (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheterIts used to administer antibiotics over an extended period. The line was inserted in my right arm peripheral Cephalic vein, ran across my chest, and ended directly in my heart for optimal deliverance of the antibiotics. The original strand of infection was not easily diagnosed so I was released from the hospital with a temporary antibiotic that they later changed when the culture came back. For the next 9 months, I once again followed the strict rules, but I also had to be trained to give myself the required antibiotics to kill the infection. They had to be administered everyday, twice a day for 9 months non-stop. It was interesting going to work and having co-workers stare or shudder as I unrolled the outer line and started the long process in the break room. Its a multi-step process that can take about 10 minutes to complete.

  • First you clean the insertion part.
  • Then you flush the line with saline solution to clear out any blood that may have flowed into the tube.
  • Next you put in the antibiotic (always checking to make sure air bubbles are out first). This one was the slowest part.
  • Next came another dose of saline solution. This stuff gives you a very cold feeling as it runs up your arm and across the chest.
  • Finally you put in the heparin lock to seal everything in place. It always gave me a bitter metallic taste in my mouth.

After everything was settled from the final surgery, the doc released me with a clean bill of health. He told me I could live a normal life and do pretty much anything that anyone else could. (Military didn't agree though.) The one warning he did offer was this: getting pregnant and having a natural birth may be difficult for me. I'm not 100% straight in the spine. My shoulder blades still protrude more than normal and my hips are not in perfect alignment with each other. One hip sticks out  farther.
Getting pregnant hasn't been the problem. I've got the 3rd bun in the oven right now. The pregnancies themselves, however, have had their very difficult moments. My first son was pretty smooth sailing until the end. Towards the end I had a lot of back pain. But then.... I also gained 45 pounds with him and had a lot of water weight gain that made everything hurt. My second son was harder. Even at the very beginning there were days when I could barely walk and I had to quit my job because of the pain getting to be too much. This third one has been the hardest of all.
When you have scoliosis, your spine doesn't curve and change like it should. When you have the spinal fusion operations, you are stuck ram rod straight. You never change or curve besides the normal bending over or tilting to the side. With exercize, you should be able to train your back to become quite flexible though. But during pregnancy, your spine won't accomodate the baby the way it needs to. My babies seek to curl up on my lower spine pinching the nerve and causing severe pain. If I move in just a certain way, it causes me to freeze up and begin to fall. Simple things like bending, walking or even driving hurts. Another problem during pregnancy that a scoliosis patient might face - not being able to breathe well. Since there is no room and things are crammed up anyway, your lungs may not be able to expand as well as they do normally. You find yourself out of breath doing simple tasks or even while walking.
I've done a lot of research on these things. I've seen many different doctors and gotten many different suggestions for pregnancy and labor issues.
  • When you are not pregnant, exercize regularly. Build up the muscle strength in your back. It helps strengthen the bones. Doing sit ups, crunches, and weight lifting can help.
  • Take calcium supplements. Build up the nutrients in your bones.
  • During pregnancy, keep as active as you can without pushing your limits. Ask your doctor what they think is best for you since everyone is different.
  • Water exercizes are always the best! It supports your extra weight and takes a load off. I like just floating in the water sometimes.
  • If you are having trouble breathing, relax. Straighten up and stretch out.
  • Some people have the option of physical therapy. For someone like me, this is not so much of option. Most health care providers see me as a liability and don't want to take a chance on me trying something and getting worse.
  • Tylenol is about the only over the counter medicine you can take for pain. I don't suggest you take it too often though. It is a blood thinner.
  • Heating pads are wonderful! So are hot showers and hot baths. Heat therapy soothes the muscles and relaxes you.
  • Maternity belts can be helpful as well. They offer extra support under the belly and around the back.
  • Discuss labor options with your healthcare provider. I couldn't lay on my back for very long. It was excrutiatingly painful. So for my second sons birth I had a midwife and gave birth at home. I endured the pains while walking around and standing in the shower in intervals.
  • But no matter what - take it easy! If you have someone who can help you when things get tough, I strongly advise you to ask them.
I hope someone finds this information useful. Or at least learned something. Scoliosis affects so many people in so many ways. Chances are you know someone who has at least a mild case even if they don't realize it.


  1. My daughter is 4 years old. She was diagnosed with true scoliosis last year, just after her birthday at 3. 6 months later when they took a 2nd set of xrays, they put her in a body brace. She sees a chiropractor now too, her next appointment is in a couple of weeks and I hope they have better news for us.

    1. Icey - Wow, I'm sorry to hear that she has it, but very happy they caught it so young! Hopefully the brace should guide her growing bones in the right direction so that she won't need any surgery. Whoever caught it is amazing! Best of luck to you guys.