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Does anyone here have CES? I saw my Dr at dinner last night & he brought it up. Was wondering if anyone else may know first hand what they have been through. I have been reading about it and most of the symptoms are there. But I have read that it needs to be diagnosed early. Any thoughts oe comments?

My doc's have never diagnosed my condition as being CES, but I have most of the symptoms (spinal nerve damage). If your incontinence is caused by some form of spinal nerve damage you might have CES if your spinal nerve damage was causd by injury.

Why do you ask the question? Do you think your condition might be CES related?

John

Again the Dr brought it up to me in a conversation when we saw one another at dinner last evening. But it did start right after lifting something heavy and in reading about it I have most of the symptoms...not all

You might want to ask your doc about CES. From what you've described regarding your injuy it does not sound like you have CES. Unless I'm wrong, anyone who has this condition will also have a GREAT deal of pain. I had a lot of pain when I had my injury and was not able to walk for several weeks following surgery (discetomy). I had the discetomy to relieve pressure the discs were having on the spinal nerves L4/5. The spinal injury I had damaged L4/5 & S1. I have what is defined as a "nurogenic bladder", but the nerve damage is the same as CES. In addition to the nerve damage caused by injury, I also have degenerative disc disease,...... and to a lesser extent (not major) some scoliosis of the spine is also present. All of these factors take there toll over time. The degenerative disc disease is on going and is compounded by having nerve damage. Over time, little by little, I became double incontinent because of my spinal condition. I have an apt with my doc tomorrow because I'm having pain in my left sacroiliac joint. At this point, I have no idea if the pain is related to any pre-exising spinal condition. What I do know is this new condition (sacroiliac joint pain) adds a new chapter to my exising medical conditions.

If your injury was "sever" and did any damage to the spinal nerves then its very possible you may have some form of CES. What does the MRI show?

John

Its interesting that I really never had any pain. I do get the numbness in my groin, left leg in the back of it & it goes down to the back of my knee. Sexual function is not there. And the control of my bladder comes & goes. On a good day I leak a lot & on a bad day if I lets say, tie my shoe or just sometimes bend over I seem to pour at a faster rate. Recently (the last two weeks) I've had a problem with bowels. I get the feeling that I need to go but by the time I get the feeling its too late. Sometimes I can catch it in time but mostly its just too late. I've been passing gas without any warning. So several of the symptoms are there but not the pain. (for which I'm glad in that respect). I also have had no trouble walking but both legs feel weaker than they used to.

Several months ago I had an MRI & that did not show much according to a different Dr. I do have to say that I was not impressed with him that much. The suggestion yesterday was from my family Dr.

Any ideas??

Thanks for your concern Johnstone!

Don

Numbness is one of those things that comes and goes. I still get that in my left leg/thigh down to my knee from time to time. It really all depends which nerve(s) you damaged before you can begin to understand how it will effect you. It took years before I started to have any bowel problems and I think it was a combination of degenerative disc disease and nerve damage that caused me to eventually lose control.

Talk to your doc's about having another MRI, or CT scan done. To the best of my knowledge, CES can not be caused by strain so if you have CES it must have been caused by a disc since you did not directly injure the spine with any type of blunt force. Not having any sever pain does not compute for CES but I'm no doc. Having a new MRI will show all the damage to the spine and nerves so this is the best way to find out what is causing the issues you are having. Good luck.

John

After years of suffering with what I though was a quirky bladder I was diagnosed with CES several years ago. Evidently I was either born with a benign tumor in my cauda equina or developed one at any early age. The symptoms for most of my life were limited to very poor bladder control. My bladder control worsened in the late 80's, and other symptoms started to appear (leg and back pain). Evidently the tumor calcified and broke up on its own, but did some significant nerve damage over the years. The pain is all but gone now, but the bladder issues remain.

I experience severe urge and reflex incontinence. I will occasionally use meds, but most of the time manage my incontinence with diapers. Aside from the fact that the meds don't work that well for me, I don't like the side effects and am not comfortable with the unkowns associated with the long-term use of these drugs.

Thanks for the post. I know first hand what your talking about. Do you use a TENS unit? If you have pain it might help. It helps me to a certain degree and something is better than nothing.

I have been diagnosed by two doctors for having CES. I can't feel when my bladder is full anymore. I have little to no warning for bowels. I have almost constant pain in my legs. I take gabapentin and morphine to manage pain. The nerve damage in my spine is being caused by scar tissue and a slightly dislocated L4 vertebra that is resting against the root nerves behind it. I can pop it further out of place with little effort. My legs start going numb when that happens. When I get it popped back in place my feet feel like they are bursting in pain.

Oh the joys of back problems.

_________________
When life hands you a lemon, make lemonade.

You know, I read this stuff on here that you guys go through and it makes me greatful that I just have the Bipolar Disorder. Yea, it causes me alot of problems. I've lost some jobs and had some other complications from it, but it doesn't cause me any pain. It just sounds like you guys with CES are in alot of pain all the time. I talk with Johnstone quite frequently and he tells me about all the pain he has. I am so thankful that that is not a life I have to live. Bipolar disorder and wearing diapers is not painful.