SpineCurve

Recovering in the hospital-1st day

I woke up at about 4 AM the next day to a dark room with the breathing tube down my throat and searing pain down my entire back. The nurses came in and took the tube out and not much is really remembered. I was still pretty out of it. The pain was bad. I had a patient controlled morphine drip to administer the medicine which I think was every 7 minutes. It would beep when it actually dispensed the medicine. So you can press it all you want before the 7 minutes are up and nothing. But when you hit the 7 minute mark and you press it, it beeps. I can remember thinking those 7 minute intervals went by so slowly.

I remembered reading on a website prior to surgery that some people could feel their rods and other couldn't . Well, right after surgery I definitely felt them-a lot (now I don't but for the months I was recovering I was very aware of them). The doctors came in later on in the day and made up sit up. That was about the most painful thing to do.They also have you roll on your side- also a very painful thing to do. I was pretty much in constant pain and the medication just took some of the edge off.

Most of the time I slept. My family came in to see me in the ICU and I would fall asleep while they were talking to me.

How it went: My spinal fusion surgery

So basically how a spinal fusion works is the vertebrae are scraped so they "think" they are broken. Bone is then scraped off of the hip area and laid over the vertebrae so that they will fuse and create one long bone. I like to think of it as changing your finger (which has several small joints and can bend) to being like your thigh bone-one big bone that does not bend. The rods are attached by screws and are implanted as an internal splint while the bone fuses over the course of about 6 months to 1 year. Once the vertebrae are fused, the rods are no longer needed, but they are not removed b/c to do so would involve another major back surgery.

I had a uncomplicated surgery. I checked into the hospital early in the morning, spoke with the anesthesiologist, was wheeled into to the operating room and woke up the next day at 4 AM. My surgery lasted 9 hours and my husband, dad, grandma, and minister's family (his wife and 2 kids who I am very close to) stayed the entire time. I apparently said "Hi" to them that evening, post-surgery but don't remember because I was not fully conscious.

The time in surgery is dependant on how rigid the curvature is and if there any additional measures that need to be done. I had met someone prior to my surgery that had 2 surgeries within 2 weeks-the first one was to remove old Harrington rods that had come loose from the spine and the second one was to put in new rods. These surgeries last I think between 14-20 hours each. My curve was pretty stiff which is why it took 9 hours to straighten my spine to a new and improved 20 degree curve and put in to hardware. I received between 50-60 staples running up the incision of my back plus stitches in my lower/back/hip area and 3 small drain tubes that hung down my back next to the incision (we can see them on my picture).

Preparing for spinal fusion surgery

The advice giving to me by my doctor at the time was to get in as best shape as possible prior to having surgery. It was also recommended that I donate blood because I would be needed it for my surgery.

After months of chiropractic care, massages and physical therapy, I was doing okay and I started exercising regularly, again. I would do about an hour of cardio on the treadmill, elliptical or stair machine. I did strength training for my abs and legs. In retrospect, the best exercises I did were squats for my hips and thighs. This is because after surgery, it is very painful to move and I often needed to rely on the strength of my legs and hips to get in out of bed. My torso was in no shape to assist in movement.

I tried to donate blood, but personally have problems. My veins are small and the blood flowed out so slowly that the blood center stopped it and told that I would not be able to donate my own blood for my surgery. Oh well, not a big deal anyway I later learned.

Attended a support group offered at Northwestern Memorial Hospital and got the chance to talk to other patients post surgery and solicited their advice and listened to their experiences.

I notified my insurance carrier and arranged to future time off at work through my supervisor and HR department. I recently started working there and so scheduled my surgery after I had been there 1 year so I would qualify for FMLA (Family Medical Leave Act-12 week job protection for medical leave). Because of the extensive nature of the surgery I was going to be taking the full 12 weeks off from work for recovery.

Deciding on the details of my spinal fusion surgery

Of course, every one's situation is unique, but there are similarities. I was fortunate to have a surgeon who was as thoughtful as much as he was an expert in his field. Once you decide to have surgery and you schedule the date then you go through a series a doctor visits to prepare for the ultimate day.

On one of my visits we did a push/pull x-ray test and we also did bending x-ray tests. This was to show the flexibility of the spine- where was the curvature locked and where was it compensating for the rest of the curvature. It also indicates how much correction is to be expected from surgery.

During these tests it was determined that my primary curve was limited only to my thoracic spine and that the lumbar curve was solely compensatory. This was good news because it meant that by straightening and fusing only the thoracic vertebrae, the lumbar spine would naturally correct itself without fusion. The less amount the spine has to be fused, the less restriction on movement in the future. The downside is if you don't correct and fuse far enough above and below the curve, the spine could continue to curve post surgery or not self-correct which would result in having to under go another spinal fusion shortly after.

It was decided that I would receive stainless steel rods versus titanium rods because stainless steel is more "flexible" and with me being 30 years old, flexibility was more important. Titanium steel rods are harder, less flexible. There are different size diameters and the like which I did not get all of the details on, but feel confident that my doctor chose what was best for me. I believed this because during our conversation about my surgery, he mentioned at speaking engagements he would show pictures of his renovated bathroom and how painstakingly they pick out all of the hardware, fixtures, colors. He would then liken this to choosing the best hardware options for patients. His thought was, if you're going to put so much effort into bathroom fixtures, why wouldn't you put that much more effort into a person's new spine. It was during this conversation that I found out that many doctors use the same hardware all their patients, with no other considerations than this is what they like to use.

So my spine was going to corrected and then fused from T2-L1 with stainless steel rods screwed into my vertebrae along the length of the fusion.

Worsen Condition-from teenager to adulthood

When I was in high school I was active in theater and dance and wanted to be a professional dancer. I auditioned for the Alvin Ailey School and dreamed of dancing in a modern dance company such as Hubbard Street (why I moved to Chicago from Cleveland). During a rehearsal for Oklahoma, I popped of the ribs in my back. I don't remember how painful it was, but the sound of it echoed throughout the theater. I went to chiropractor to get it fixed (he was the one who diagnosed me as having a dislocated rib- it looked like I had a egg sticking out of the middle of back). He took x-rays and came back to my parents and said, "Did you know she has scoliosis?"

From there we went to Cleveland Clinic for an assessment. At the time I was 17 and had no pain or injury from my scoliosis (other than the rib dislocation that just occurred) and I was told that because I was older, and probably not growing anymore, that the curvature would most likely not get any worse. Since I hadn't noticed the curvature before, I was thrilled to not have to do anything about it. Woo Hoo I was so intent on becoming a professional dancer I did not want to have to face the fact that I might have to make some special considerations because of my curvature. And I didn't want to think that I might not make it because my body wasn't perfect. So I ignored it and hoped it wouldn't be a problem.

Well, it eventually became a problem. I was the poster child of over-doing-it and not resting or taking care of myself. As I advanced in my training and the time I spent dancing and working out, I occasionally would strain my back(once every six months to a year). What would happen is that my shoulder and neck muscles would spasm so bad that I could not move my head or arms. This happened more predominately on the right side where my major curve was located. All I needed to do to treat it was rest, ice it and get a massage. Then all would be right with the world-or at least with my back.

Then one day I really injured my lower back. I don't remember exactly what I did or what was wrong with it, but it was pulled way out of line (that was the first I could notice in the mirror how crooked my body looked). It was very painful and I did physical therapy and traction to treat it. It was painful to walk and move for a long time and I had to admit that my body could not sustain the level of dancing activity that I wanted to do. So while I had stopped dancing to heal the injury, I decided to stop pursuing it as a career and went back to college to earn my bachelor's degree.

Throughout school, I remained active, took some dance classes and worked out a lot. The summer before I graduated, I completed the 1/2 triathlon in Chicago. I rarely had any back injuries (except for a week after the triathlon-I was carrying a very heavy book bag, working out everyday, didn't rest after the triathlon and tried to play ultimate Frisbee). I got a job after graduating working in an office and that was when I started to have more frequent back pain- the neck and shoulder muscles spasms where I couldn't move and they were happening with less provocation.

In January of 2004 I started getting debilitating headaches everyday. At first they started in the afternoon, but then they started coming on earlier and earlier to where they would start at 10 AM. I was taking 10-12 Tylenol a day to try to manage the headaches. I was not feeling back pain, so I didn't know what was happening. I had feeling it was related to my back but didn't know how. I started seeing doctors, took muscles relaxers and pain killers, went to a chiropractor and got massages. After about 2 months, I got relief.

What I discovered in that time was that my curvature was rapidly progressing and the headaches were tension headaches from the strained muscles in my upper back, neck and shoulders. I visited 3 different surgeons in orthopedic and neurosurgery. I was also able to get my old x-rays from when I was a teenager that allowed the doctors to see the progression. I had gone from a 40 degree thoracic curvature and a 33 degree lumbar curvature to a 54 degree thoracic curve and a 44 degree lumbar curve. That averaged out to be about 1 degree a year. That's considered a rapidly progressing curve, especially since I was no longer growing and only 30 years old.

I knew I wanted to have surgery because I was pretty miserable. I could not do any of the physical activities I liked to do, take dance class, bike, swim, lift weights, do cardio exercises, because I was constantly straining my muscles. I was spending all my extra time at doctors and chiropractor offices for treatment so that I could get through a day at work. I did not like living like this.

I was scared of a lot of things regarding surgery. It's not like you can change your mind after having a spinal fusion if you don't like the results. It was going to be a long and painful recovery. I was going to lose the mobility of my spine and I didn't know how this was going to affect my ability to do things. How would this affect me having children in the future? Would I ever be able to dance again? Would I have to have multiple surgeries?

So I decided to have a spinal fusion and scheduled it for later in the year. It was with the 3rd doctor I had seen. The first doctor I was referred to by my primary physician did not specialize in spinal fusion for scoliosis. He recommended someone who was not in my insurance network which left me on my own to try and find someone to do my surgery. I started searching online on our insurance providers site and made an appointment with one doctor who I didn't like because I felt he was dismissive about my pain and didn't think I really had a problem. Then I called Northwestern- because I liked the hospital- and asked who specializes in scoliosis. They told me Dr. Ondra. Once I had met with him, I knew that I had found the doctor I wanted and Northwestern also had a support group for adults with scoliosis. I scheduled my surgery for alter in the fall and got myself ready, physically, mentally and emotionally, as best as I could.