Posted 7/16/2008 6:37 PM (GMT -6)
To answer your question about whether or not you would be in worse condition or not is kind of complicated.....it depends on what level the CE nerves were/are compressed at. Each spinal level has two nerves that exit at that level, and so the higher the compression, the more damage you would see at/below that level, because the higher up the damage, the more nerves are compressed....and it also depends on the degree of compression. If it is a "mild compression" of the Cauda Equina, it may only effect one or two nerves, a moderate one might effect 4 or more, and a severe compression would of course effect more nerves, again depending on the level. That's why you will see people with CES who have such varied symptoms and different areas of the lower body that it effects....
A compression at L3-4, would effect the body in the L3 and 4 dermatomes, along with L4-5, L5-S1, S1-2, S3-4, S4-5......one lower, say at L5, would effect the L5-S1dermatome, and all of the Sacral nerves.......if that makes sense....
I hope that I haven't confused anyone.....
Anyway, given the length of time that you have had this compresion assuming that it is CES related, I would guess that your symptoms have leveled off, as long as there isn't anything else to cause a further compression.
I know when it first started, I had the saddle numbness, and extreme low back pain, so severe it had me screaming when they tried to move me.....I wanted to die, and I mean that literally. I have never felt pain so intense in my life.
I also went from a partial foot drop to a total over the course of the 6 and a half hour surgery and my waking up...and I added my right leg being effected, it became numb from my low back down to my sole of the feet.....my left leg prior to surgery, had a patch of numb area in the L4-5 dermatome, and when I woke it was just like the other one, just more severe. It was like someone had removed my legs, buttocks, and low back and I just couldn't make them do what I wanted them to do.....
Over the course of the next 16 months, things continued to go downhill, and some settled down, as the not being able to tell I had to use the bathroom was replaced by urgency issues, where I didn't leave the house until I knew exactly where the bathrooms and nearest benches were, and I knew that I could make it that far.....otherwise, I stayed home. The numbness settled some too, in that it was /is still there, but it is slightly different than it was at first....and my numb soles were also burning if I put on shoes.....that was painful!
I don't know if I am allowed to put links here, I have to ask Chutz, but there is a support group out there for those who have or think they may have Cauda Equina. There are a few thousand of us, all over the world, but probably less than 100 of us regularly post. There is a wealth of knowledge in that group regarding CES, and how it effects us all differently. They saved me, many times in the beginning of this.
As far as the urologist goes, he should have done urodynamic testing, which includes testing the nerves in the area, then he could have told you if there is nerve damage to your bladder or not. I know that my urologist did, right after it was done.
I also tried different meds to see if they might help, but they often don't when there is nerve damage, but he hoped that they might, even a little since I was retaining far more than I was able to put out......so if they didn't help, I was going to have to go through with the cathing thing......
He was very, very supportive during that too, so I bless that man, for knowing what CES is, and how to best help me...
As for your question about what they do, if it is discovered early- right after the onset of symptoms and diagnosed for what it is, then early decompression of the effected nerves is the standard treatment, which usually means a laminectomy....or fusion surgery.
If the nerves are decompressed quickly enough, and they weren't damaged too severely, then they might recover over some time....but because they are spinal nerves at the lowest end of the spinal canal, no one can really tell you if they will or will not recover.
In my case, the nerves at L5-S1 are like old lace, dried out and extremely fragile and similar to tissue paper in that my neuro said that if he touched them, he was afraid he would crumbled them....so he left them alone....but he did try to decompress the nerves at L3-4, L4-5 again, but I haven't had any improvement in my situation yet.
In fact, I am now using a manual and motorized wheelchair to get around, and a scooter too......but my situation was one of the extreme cases, and left far too long to try to do anything about it......it's not always that way. There is another woman who had a herniation at L5-S1, and she had no surgery and has no symptoms to this day.....so it can be very, very mild to nothing residual happening to cases like mine and others......
Anyway, whatever it is, I hope that you don't find yourself dealing with it. And if Chutz says it's okay, I will post a link to the other group.
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..