18 Months Ago…
On Feb 11, 2013, I had never heard of Cauda kabayo sindrom (CES). That changed the next day. This very day, 18 months ago, I awoke with no feeling below my waist. Something very wrong was going on with my body! I didn’t know it then, but I was beginning the journey called Cauda Equina Syndrome.
On this blog I’ve chronicled the first year of that journey. I have been very blessed in my recovery, especially given that it took 14 days to have my decompression surgery and not having ANY feeling below my waist. I won’t cover the details of what has been written before, but this update gives a quick look at my progress since the one year mark.
Many neurosurgeons and other physicians say that nerve regeneration only occurs for 12 months, while others say 12 - 18 months is the time in which what healing will happen does happen. My physical therapist told me 18 - 24 months. I don’t know if this is “frontline” info or whether she was just trying to motivate me further than I already was.
For me, the months since my 1 year anniversary have been challenging with some minor regression – but, I am still seeing spurts of significant regeneration taking place. I went through a period of frequent nerve pain in the top of my right foot. This seemed to be aggravated by my evening commute, which is usually around 1 oras 10 minuto. The last 10 - 15 minutes of the drive I would get the “electro-shock” feeling so familiar from other body parts earlier in my recovery.
These were so painful I almost became a dangerous driver. I fell back on my flight training skills – ABC – Aviate (Fly the plane, in this case, drive the car – make sure you don’t run into someone or something), Navigate (Don’t get lost and for the car it means make sure you don’t miss a turn while distracted), Communicate (In the air, we’d get help from controllers on the ground, in the car, this just means Comfort – try to find a position where the pain subsides. Those pains left me about a month ago. As they left, they presented me with a going away present of more feeling in my feet. I now only have impaired feeling in a ½ - ¾ inch band around my foot, beginning about ½ inch above the bottoms of the feet (my toes excepted as they have had feeling for some time.)
My legs have feeling back except for the backs of the legs and inner portion of the buttocks, but only the lower ½ of that and the corresponding front area. That too is a recent improvement. I am now able to walk without assistive device for over 100 paa, but my legs and hips are completely exhausted by the effort and are in moderate pain by the end. But I am improving, slowly but surely, I continue to strengthen and improve.
I still cannot stand for more than 20 - 30 mga segundo, nor sit for more than an hour without problems. This limits my ability to travel and is sorely missed (no pun intended.) I keep pushing to improve. If I don’t, I won’t know how much I can improve. So I work full time, with 2 hours round trip commute time. And I walk whenever I can, to the point of not being able to any more. By the time I get home I am exhausted. I still have not had to have surgery on the torn tendon in my right foot.
Despite that, God has allowed me to lead small groups and classes at church. I am truly blessed. None of us who are afflicted with CES want to stay as we are. We learn to deal with the injury and we fight to overcome as much of its affects as possible. It is easy to look around, seeing people who do not appreciate the simple act of being able to walk. Or run. Or stand for a few minutes. Or travel 6 hours to visit with old friends or many other things. Looking at these will surely lead to defeat, depression, and a downward spiral. Look at what we can accomplish instead! Life is different, not over. It isn’t fair, but then we’ve known that for a long time. I choose to let my disability strengthen me, rather than define me. I challenge you to choose your goal and work for it!