I had true faith and confidence in my doctors until this happened. It is not that I think they did anything per se to cause it but I definitely know that they have been negligent in disseminating information to me regarding my condition. My orthopedist (who performed my surgery) has only told me that my nerve roots have been damaged.
I had been diagnosed with sciatica when I was a teenager (I am 44). I never really had any back pain. Off and on my leg would bother me over the years. It was not until after my children were born that the leg pain got increasingly worse and more frequent. My internist prescribed the usual stuff NSAID's and I had a nerve conduction study done which showed I had some nerve damage.
I was out on disability for a month last February/March due to excruciating pain in my leg. It was then that I had my first MRI and was told I had three herniated discs. Hindsight, I look back now and realize I had some tell tale symptoms. In addition to the numbness in my foot and thigh my butt would get numb and I would find it very uncomfortable to sit. I had to use one of those donut things to sit on.
Last fall I was running to catch a bus and hurt my back. I never even associated the back pain with my sciatica because I always only had pain in my leg. Well I went to my orthopedist he gave me some painkillers and told me to come back in a week. I went back and by this time I had developed serious numbness in my butt and vaginal area. He asked me was I having problems urinating or moving my bowels. I told him no. He never even mentioned CES, never told me to be wary, that it was a medical emergency if these symptoms developed. He prescribed methyl-prednisolone and home I went.
That night the pain in my back was so bad I had to crawl to the bathroom to use it, if I stood up and walked I was in tears. Friday morning I thought I felt better because most of the pain was gone, but I had developed what I now know was saddle anesthesia. I called his office and told them the numbness had significantly increased and I was told to continue with the methyl-prednisolone to give it a chance to work.
Not knowing what was happening I continued on my merry way, I was uncomfortable but nothing horrible, by Sunday morning I could not urinate and had created a hemorrhoid by straining to move my bowels. It was then that I went to the emergency room. They thought I possibly had a bad urinary tract infection. There was still no mention of CES through all of this. Monday I had another MRI and two of my three herniated discs had completed ruptured. Still no mention of CES with the catheter in me because I could not PEE!!!
Tuesday morning (my husband's 43 birthday, probably why I remember the date and day so well) I had back surgery to relieve the compression. They removed the catheter the next day and I still could not urinate. They prescribed Flomax and Urecholine, which helped, but I left the hospital doing the self-catheter routine. The Urecholine made me feel like I was having a nervous breakdown so I did not take that for long.
I finally heard of CES 3 months after my back surgery. My regular internist (who is not in network and has been my doctor for years) found it unusual that my functions had not returned to normal and wanted me to see a neurologist. I went to an in network HMO (AENTA) doctor and to get a referral to the neurologist that my internist recommended. I told her what had happened and the first thing she said was it sounds like CES. She sent me for a MRI that day and sent me to the neurologist. He in turn only told me there was no evidence on the MRI that anything was happening post surgically to exacerbate my condition. He said that if my nerve function returned it could take upwards of a year or more. Still he did not mention of CES to me.
Throughout this whole thing I have been kept in the dark. Thank God for the CES group!!!! I am lucky though at how fast things happened, that was in my favor I think. It has been almost 6 months since my surgery and my vaginal area and butt are still numb. I do limp but am not in a lot of pain like some. I still take Flomax to help me urinate, I really have to push to do it. I no longer need to do the self-catheter. I can sit comfortably now thank God. Also I still have one small centrally herniated disc, which scares me.