While I have been a member of spine-health since 2006, I don’t often post about myself, so many of you don’t know my story. I have contemplated telling this for quite some time, and so I thought I would begin again with a NOT-SO-BRIEF introduction. For any who make it all the way through, I hope I can help you in some small way.
My spine situation began in early 2006, when I stupidly took a tumble in the parking lot at my workplace. What I thought was no big deal turned into something that changed my life forever.
I started with some minor arm pain and numbness, which progressed to severe arm pain and weakness. By late summer of that year we decided that surgery was my best option to find relief and get me back to being the workaholic perfectionist/supermom that was my previous life. I literally worked up until midnight the night before surgery, and stopped again at the office on my way to the hospital the day of surgery to sign a few checks and make sure that everything was ready for me to be gone for two weeks. I had always breezed through surgical recoveries (even big ones), and I optimistically thought this one would be no different. My very busy job, along with my 5 children and husband at home, demanded so much of me that there was no way I could be off work for long. At least that is what I thought.
So, I walked into the hospital on the morning of surgery, ready to get on with things and get my neck fixed. I wasn’t even nervous. The ACDF C5 to T1 surgery took just over 2 hours, and while I was in recovery, the surgeon spoke with my husband, telling him he was optimistic that my issues would be fixed. Uh, I wonder how he could say that.
The first thing I realized upon awakening from surgery was that I couldn’t even budge my fingers. I could raise my arm, but the hand and fingers would not move. Strange feeling to look at my hand and realize that it was paralyzed. I then noticed that my other hand was burning like I had frost bite. This soon spread to the whole right side of my body. By the end of the day, we realized that I had partial paralysis with my legs and hands, and that I had lost bladder control as well. (I eventually found out the bowels were affected too). I remember thinking “it is okay, the doctor will take care of me. Just stay calm and try not to cry.” The pain was unbearable. They termed me a quad because all 4 extremities were affected, but I never understood how I could be a quad and yet be able to move some parts.
The next few months were very difficult as I worked my way out of a wheelchair and learned to accommodate for the weakness. At about 6 weeks post op I developed a DVT (blood clot in the deep veins of the leg). Back in the hospital for that. Released 4-5 days later, home for a few days, and then back to the hospital again for pulmonary embolisms. Then I went to an inpatient spinal rehab unit for some physical therapy and bowel/bladder training. I credit the guys at this rehab unit for getting me walking again. They were wonderful. It was the doctor there who reviewed my films and showed me where my spinal cord was damaged during surgery. He diagnosed me as having Brown Seguard Syndrome, which is typically resultant from a knife wound to the cord. I did not have a penetrating wound, but the damage was there anyway. Interestingly enough, my first surgeon simply said that he did not know what went wrong, had never seen it, and that I just needed to be patient.
So that is how my journey began. I fought through the next couple of years, with many ups and downs. I regained full use of my hands and regained enough strength in my legs to give up the wheelchair, then the walker, then the crutches. I walked clumsily, but at least I was walking. About 9 months post op I began having new symptoms and so some imaging was done, revealing that I had not fused. Oh great! Not only did I have a surgical nightmare, but even after all that, I didn’t fuse?!?!! The doctor ordered a bone growth stimulator, but it was too late for it to help. The hardware was stable, which allowed us to wait and see what happened. We played the stimulator game for a while, but my symptoms continued worsening. It was about 20-21 months post op that a new surgeon gave me some hope.
May 2008 I had an anterior/posterior revision and 2 vertebrectomies with strut grafts, cage, rods, plates, screws, etc. The hope was that by removing the vertebral structures it would decompress the spinal cord enough to stop the new stuff going on with my legs. Also, the revision had to be done posteriorly because of the amount of work needed. So they began from the front by removing the old hardware, cleaning out everything, placing a new plate on the front, and then “gently” turned me over to begin the 6 hour posterior process of removing the bone and replacing with beautiful hardware.
When I awoke from this surgery, I had a small relapse to some of the same symptoms with the first surgery. This freaked me out! But the hand stuff only lasted a few hours, and the legs strengthened daily to the point that they were at my baseline level by the time I left the hospital. My surgeon apologized for not telling me that this was a possibility, but reassured me it was all temporary. I completely trusted this surgeon, so I knew all would be okay.
Well, all was “okay” regarding those immediate post op symptoms, but things are far from okay. The surgery recovery was rougher than I expected, but I am a trooper and fought through valiantly. I was optimistic that this would get me back to living a productive life again. The past couple of years had been difficult on my family, and my children needed their “supermom” back. The injury didn’t just happen to me, it happened to my entire family, and it was an adjustment period for all of us. We were all so hopeful that this surgery would be the answer to giving us back our old life. My job was now history by this time, but I didn’t feel too bad because I had learned that being a workaholic was not what I wanted out of my life. Family is what is important, and while I needed to be able to help support my family, working more than one has to is not good for anyone’s family.
That second surgery was almost 4 years ago. To this day, I still struggle with intense burning pain on the entire right side of my body. Some days my legs are stronger than others, but they are still a problem. I am managing the bowel/bladder stuff, and in fact, it has improved some. A new problem crept up following the 2nd surgery. I require some sort of head support, as my neck muscles just can’t hold the neck up without causing spasming and pain. So if I go out shopping or doing anything that would require me to be upright for longer than about 10 minutes, I take my wheelchair that is now equipped with a good head support. This helps me to live my life, and I have learned to look at it as a tool to help me be involved in life. Otherwise I stay inside my house all the time, and that is not good. I can deal with the leg weakness and pain; it is the head/neck stuff that is kicking my hiney. If I do anything that requires looking down or using my arms out front, the pain becomes severe and I have to stop. So I use my laptop while laying down and it is propped on my knees. I have learned to adapt the way I do many things, and I require help with a lot of simple household chores. This frustrates me tremendously, as I have always been independent and a perfectionist. But what is important is that I am learning to like the new me, learning to adapt, and I realize that I still have value, even if I am a totally different person physically.
Yeah, I get frustrated and I spend many days laying in bed. My pain is never fully controlled because I refuse strong narcotics (did I mention I am stubborn and scared to death of what will happen 20 years down the road if I allow myself to use stronger medications?) Yes, there are many things I want to do that I can’t. But there are many things that I can still do; I am still a mom to 5 wonderful children who need me, any way they can have me. Yes, I worry about being a burden to my husband. He reassures me that he will do whatever is necessary to keep me. Aw, what a sweetheart he is! I have learned to find joy in the little things that I can do. Rather than tackling big projects, I do small ones. I was a wonderful seamstress and this was my passion. I would sew for hours on end and love to see a beautiful dress created by my fingers. Now, someone else cuts the fabric out for me, and I only sew for a few minutes at a time, but I still sew. I had hand controls installed on my car so that I could go back to driving. Ah, freedom again! There are many things that we can do to help us get back to living life. I stick around here on spine-health so that I can help someone who may be going through some of the stuff I did. Through the years I have learned a lot, and if I can share that knowledge with any of you, then that would be a wonderful thing.
So, where am I today? A year ago I was diagnosed with a post-traumatic tethered spinal cord. Basically this means that the cord injury formed scar tissue, which grew and attached the spinal cord to the dura. Rather than the cord being like a piece of cooked spaghetti floating around freely, it is now tied down and doesn’t move. I also have a syrinx at the C5-6-7 levels, which is something we are watching. I am told that both the tethered cord and the syrinx can be problematic down the road, and that they may already be what is causing my symptoms now. I lose use of both legs temporarily—that is very scary! So far, it always comes back, but I have taken plenty of falls, and have been stuck with no way to get up many times. This is where I use the patience that my doctor told me to learn, lol. My journey is not over, it is just beginning. But I have learned to accept it for what it is, and am trying daily to make the best of it.
Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!