I have Cauda Equina Syndrome (CES). Most people when I tell I have this look at me like what the heck did you just say. I'll admit I had never heard of it until the home health nurse visited me for the first time after I had to have an emergency decompression surgery for two slipped discs in my lower back that left me with a lot of symptoms that ironically, after I googled CES, found out why I had them.
The problem is many health professionals including ER doctors do not have a clue either, which ends up with many having long lasting symptoms of this disorder and some becoming paralyzed even. There is a 48 hour window to get the pressure off the Cauda Equina nerve before there is permanent damage. I happened to be right at that 48 hour mark. I won't even go into the ignorance I experienced at the small town ER I went to and the pain I endured until I was transferred to where I received help.
I feel a sigh of relief when I say I have CES to a new doctor office and ask if they have heard of it and say yes. Explaining it can become exhausting. Of course not every CES person has the same symptoms so I still have to say the symptoms I have from having it.
Most people I know personally know I just have something wrong with my back. Sometimes it's easier just to let them think that instead of getting into the intricacies of my CES symptoms, which can be embarrassing to discuss. And I do have something wrong with my back. I was born with a congenitally narrow spine/shortened pedicles which caused me to have Degenerative Disc Disease which caused the two discs to collapse on the Cauda Equina nerve that caused CES when I was 34 years old.
It's been a hard, long road and will be seven years this month since it happened. Basically there is a three year improvement period of symptoms and what you still have after that you are stuck with. So I know I have to live with what I've been dealt unless there are new advances in spinal chord injuries and permanent nerve damage. You wouldn't believe how tickled I was when I could stand on my tippy toes for just a millisecond. Little things you took for advantage suddenly become monumental. I've had three back surgeries now and am looking at some more. Not to mention other things going on with my health at the moment that exacerbate the problem. I was lucky in that I can still somewhat walk, although I know the day is coming I will be wheelchair bound, and that I don't have to self-catheterize.
I would urge anyone with low back problems and especially ALL medical personnel to learn the symptoms so that people can get the help they need ASAP. There should be no excuse for doctors to not know about this condition, but don't count on it.
Thank you Melissa. I have a friend who was wondering what CES was, I have it too, and this was handy, so I posted it. I had some stenosis and several herniated disks that went into CES about 2 years ago when I had my surgery. I keep hoping that it will not get worse and have been told by my doctor that it was just a chance occurrence, but it scares me to think that I might still wind up in a wheelchair.
ReplyDeleteYou are welcomed Lois. Check out Joe Sheppard's Awareness for CES page. I also have a page on facebook called Get a Clue about Cauda Equina Syndrome. Feel free to check it out. I try to post articles and informative stuff as well as memes and such. This blog is a little rag a muffin and about whatever I feel like writing about though, and I'm sure CES will come up again in the future. I understand your fear of ending up in a wheelchair. I've had other problems going on making my back pain even worse and have taken to riding the electric carts at stores, letting people push me in a wheelchair if it's a long distance somewhere, and using that God awful walker again since I've been having horrible thigh spasms and falling. Hurts my pride but I suppose it could be worse. ;) Anyway, I wish you well and hope you do not get worse or ever need a wheelchair
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