Category: cauda equina syndrome

A rant on doctors (CES)

You are diagnosed with Cauda Equina Syndrome. A misunderstood syndrome that is a medical emergency. Yet the doctors never provide adequate after care. They think that once the surgery is done, you should be healed. They don’t tell you it could be up to 2 years or more before recovery is seen. Meanwhile, you become an infant. You have no bowel or bladder sensation. Are given catheters and told to do your own bowel program. I have tried this and has taken me 13 years to figure out what to make me go and what doesn’t. I was fortunate that I didn’t have to use catheters but I know others that do. What really pisses me off is that there is no help dealing with this syndrome mentally. It shatters you to the core. The pain that is dealt with is intolerable. The burning, the zaps, the throbbing, the stabbing. It never ends. You might get relief for a few hours but most of the time you have to learn to tolerate the pain. You want to give up and when you tell someone this, you are thought of as crazy. People don’t understand the mental anguish chronic pain has on you. I am feel so bad for those that didn’t have the help that I did while I was in the hospital. I was on suicide watch a few times but I got through it. I still have strong suicidal feelings because I just cannot tolerate pain any longer. But I am still here, despite these feelings.

Doctors don’t know everything. You may have to see several different specialists to deal with CES. I would strongly recommend finding a psychologist or therapist in your area to help deal with the debilitating pain, disability, and loss of self. Whatever you were before CES, it is now gone. You will never go back to that life. I will never be able to walk a 20 mile walk a thon because I can barely walk around the block without severe pain. As tough as it is, you must get used to this new life. There are no doctors that specialize in CES. Some have never even heard about it and if you look it up in a textbook, I am sure it is just a small paragraph. That is what makes this syndrome so damn frustrating. You have to see a neurologist if you want the best care. A GP or internist is not going to be helpful. Finding someone to listen is also key, though it may be hard to find. Don’t give up looking. They are out there! The weird thing is, as I was in the ER unable to walk, surrounded by neurologist residents and neurosurgical residents, not one of them told me that I had CES. It was my psychiatrist that told! I paged her at 4 in the morning to talk to her and get her opinion on what to do next. I needed to hear her voice because I knew she knew what I had. I have been lucky that both of my CES surgeries happened in the early stages and within the timeframe. Otherwise, I doubt that I would be writing how I recovered. It took a long time to get use of my legs again. I went from walker to cane to AFO to nothing. It didn’t happen overnight. It took months of rehab and perseverance. If I can get through the pain, you can too.