#53 - Broken Neck

After years and years of treating Addison's Disease with multiple major surgeries, I had found myself with a new complication. A collapsed neck.

In 2008 I had begun to have trouble with tingling and numbness in my hands, up my arms then in my feet and legs. One day, my husband and I were shopping at Target and while pushing the basket I found that my feet were not listening, suddenly I could not pick up one foot and move it forward. I stood there frozen and dumbfounded. What was going on? My husband had been standing there waiting for me to catch up to him with a puzzled expression on his face. I said to him, "My legs, I can't walk." It was strange because my legs were supporting me, but they could not move forward in stepping motions. We both stood there not knowing what to do, but we knew something was really wrong. I tried to not panic.

I held onto the basket and shuffled my way to the car. It deeply scared me. But, I had no idea it would be a sign that my neck had collapsed so severely as to impinge my spinal cord to the point of a pin-sized space letting spinal fluid through. My spine collapse involved three vertebrae and the injury also caused a lesion to develop in the C2 area of my spinal cord.

Within one week I'd had multiple MRI's, X-rays and had seen a top Neuro-Spine surgeon with St. Luke's Episcopal Hospital in Houston, Texas. It was an emergency surgery; he said I needed the surgery "last month." By this point, I had also been experiencing moments of having sudden trouble breathing, but it wasn't due to lung issues, it was more of a functioning problem, as if my body were struggling to go through the motions required for breathing. It wasn't a good feeling. The neuro-spine surgeon explained that my spinal cord was so severely impinged and so high up on the cervical part of the spine - to the area that controls breathing. I'd be in unspeakable trouble if my spine collapsed the rest of the way. The surgeon explained that no paramedic would be able to help me in that situation. My surgeon was kind, gentle, yet very straight-forward, my neck had broken and collapsed, in multiple locations. He scheduled me for a rarely performed double-spine surgery to reconstruct and stabilize my spine.

I discovered that when you have a spine injury very high up the spine, you need a surgeon who also can perform brain surgery --- a neuro-spine surgeon. The spinal cord is inflexible that high up. Mistakes at that level in the spine can have devastating results - the higher the injury and surgery, the higher the risk for catastrophic permanent damage or death. No spine surgery is without risk, but a serious cervical spine issue definitely involves more factors that can impact your body for life in greater ways. Personally, I'd rather not have ANY spine issues. The entire spine is a miraculous bit of sculpture. However, lower in the lumbar area, they can actually push the spinal cord aside a bit and have more room for maneuvering during surgery, but the cervical spine area has absolutely no room for movement or error. My surgeon also performs emergency brain aneurysm surgery for St. Luke's; he is an amazing healer.

Something that appalled and educated me with my own condition was how a person could basically walk around with a broken neck. That is what I had done for quite some time. Actually, my neck hurt me a lot; caused me to have bad headaches, but I'd become so accustomed to living with body aches and pains that it just blended in with the rest. If I rushed to the doctor for every ache and pain, I'd be settling in for the long haul. So, I've learned to live with pain and issues. Unfortunately, my pain tolerance level is extremely high and this does not always serve me well. That is something that runs in my family.

I thought the pain was related to muscle strain. However, now looking back, I remember hearing clicks when I turned my neck certain ways and I would sometimes hear a sudden squishing sound as if fluid were straining through a narrow tube. On a quiet night, lying in bed, when moving my neck, I could hear these sounds as they were happening so close to my eardrums. And yes, I had definitely tried to explain this to several doctors but they always looked at me as if I'd just come from Mars. If they would have done a simple neck x-ray, they would have seen the spine collapse.

The surgery was brutal. It took approximately five-six hours with the surgeon knocking me out to first install a stabilizing halo onto my skull. Special staples attached the hallo firmly to the skull. They performed the front body part of my surgery first, going through an incision made across my neck, rebuilding bone with cadaver bone, putting in metal plates, screws, etc., and then they actually flipped my body and began going through the back of my neck. Now tackling my cervical back, they shaved several inches up the back of my head, made a five inch incision and did the same thing at the back of my neck, closing the incision with about 30 neatly lined staples.

A special stiff neck brace went into place and would have to stay put, even during showers, for the next three months. The surgeon said my neck was extremely instable and the double-spine surgery was required for my situation. Most people only need either the front or back to be stabilized, not both sides, but my neck was jello.

The surgeon believes this cervical spine collapse to be mostly attributed to steroid dependency. He explained that many people who are steroid dependent, for one reason or another, end up with it impacting their bones. He said he wished to give me a pretty-bow-tied answer, but even with steroid replacement values being carefully monitored, it is still a synthetic substance that has side-effects. Period.

Steroids cannot be taken without thinking there would never be a potential problem. But, this is why it is so critical to take Calcium and Vitamin D when on Steroid treatment along with exercising, even a little. Turns out, I did have a bad Vitamin D deficiency that had to be treated with prescribed medications. Maybe my spine collapse could have been avoided if I had known that I should have more aggressively fought these steroid side effects from day one of treatment of my Addison's. I had been taking supplements, but it obviously wasn't enough to prevent a spinal collapse. It might have happened anyway. I'll never know. However, one thing I do know is that I am on a strict regiment to take these supplements every day, especially since bone density tests show I have had Osteopenia - my bones began showing changes within two years of developing Addison's Disease and I was only 35 years old. Good thing is...with my supplements and with time, my bone density tests are showing my bones to be stronger than before. Bone is constantly rejuvenating tissue; it can be treated with some damage reversed, so never give up.

Today, I have limited mobility in my neck, but most people meeting me would never know I'd had spine reconstruction, unless they also see the scars. I had the surgery in January of 2008 and recovery was brutal. I was 39 years old and unable to move around freely. Since I was cut open and reconstructed with spinal fusions from both the back and front of the neck, I experienced terrible swelling that barely allowed me to swallow my own saliva. The pressure from the swelling upon my throat and the trouble breathing was most disturbing. For a few weeks, eating was nearly impossible, nothing but thin fluids could pass down my throat without getting lodged.

The neck brace I was forced to wear for so many months was often stifling and hot and inflexible. I could not lie in any position without being in terrible pain because I had incisions in front and in back. That particular April, my 3rd month in the brace, was very hot and I often felt claustrophobic, but knew I couldn't take it off. If your neck is covered at all times, without reprieve, you'd be surprised at how much heat it produces. After the initial three months had passed, I was allowed to wear a soft neck brace, but it had to be worn for considerable time as well. The brace pressed painfully against the staples in the back of my neck and everything combined would lead me to tears of frustration, many times.

After surgery, it was challenging to re-learn my limitations for neck movements. I had to figure out how far downward I could look, how far upward, my limits for side to side movements were carefully determined and figuring out how to lie down at night with pillows propped just right since my neck was fused at three levels was another hurdle. All were subtle changes, but definite changes.

I never went to physical therapy, but my surgeon said that I did better than most patients and had excellent range of motion so he didn't see a need for me to sit through physical therapy. I believe my success had to do with surgery experience; I'd learned a long time ago after several surgeries that you must get moving through the pain. You shouldn't over do things or ruin the surgical alteration, but you must fight through the pain.

A serious complication through recovery was the strain it caused on my Addison's Disease maintenance. As usual, this was the most difficult part of balancing my health. The constant pain the new installed hardware was causing, the incisions, the tugging staples and stitches, the swelling...all of it led to difficulty for my Addison's. Stress dosing is rather mentally disturbing as you are laying there recovering from a major surgery that was likely attributed to the very steroids you need to take to live another day. It can mess with your mind.

As a normally low-dose patient, I fought the emotional downside of Addison's and took my medicine like a good girl who happened to still thoroughly enjoy life.

Since my spine surgery, I eventually was able to sleep at night without hearing crunching and clicking and squishing. The surgeon said I'd most likely not regain the feeling in my hands and legs due to the spinal cord injury, but I did regain more than he ever thought imaginable. I no longer have problems walking as I did that scary day in Target before my surgery and the sudden gasping for air as my throat and lungs went haywire has also stopped.

On some days I have difficulty moving. If it is cold I am very achy. Sometimes I have swelling and pain because the hardware is irritating the surrounding tissue and scar tissue may tear and burn. But, the hardware must stay in place because my neck would not be strong enough for removal. If I had just needed fusion by itself, that would have been great, but I required structured support on a permanent level. I can tell you one thing for sure...it's a good feeling to know that my neck is securely attached with fusion, plates, screws and cadaver bone. What would have happened if I didn't have surgical intervention? What if my Addison's disease was not controlled enough to allow me to survive such a surgery? I can only imagine how things would have progressed under different circumstances. I am nearly as good as new! I look forward to being given a chance to live a long, full life.

Since my surgery, I have been blessed to make contacts with people who have Addison's/Adrenal Insufficiency from around the world, I have been learning that many of these people have suffered with bone issues, fractures, surgery for bone issues, dental deterioration and other issues related to steroid treatment. Choosing life on a day to day basis is our first choice, facing the repercussions of side effects is something that might or might not follow. If you have had such side effects, please let me know. Knowledge is power. That is why it is imperative that we savor every day and a good reason to take those supplements!