Cauda Equina

[Beazy]

Chris and Sandi, I really appreciate both you both being so candid with me, and the fact that you are both functioning out in the real world again gives me hope. I've been housebound since september, and its getting me down. I miss work, and while i'm alone, all my friends are working. At weekends I am at home while they go out to bars. My life will never be what it once was, but i guess i can still hope that i'll get some control back. Control to work, to shop, to sit for more than ten minutes. I've been told the cauda equina nerve was so badly damaged, they felt it was their duty to tell me it will not heal, and that i should not expect it to. The catheta bag is a bit embarrassing, i'm not sure how you coped walking around with that. I hide mine in a handbag when i have my physio appointments. I've been shown the ISC's and my doc ordered me some, but i'm terrified that i wont be able to put it in the correct place, it is all numb and foreign, what if i hurt myself, i wouldn't feel it? The constant flow from my bowels is distressing, and I cant get used to the smell. In toilets you never really notice the smell, in a pad you cant miss it. Trouble is, i dont feel when i've had a movement. Its a hard thing to deal with. But, having you guys to talk to about it, you dont know what it means to me. I was feeling seriously depressed. I thank you both for your input. Bea

[Beazy]

You are diagnosed now though, yeah? Plus, what does all those acronims stand for?

Originally Posted by Chris54

The pathetic thing is, the doctors have never diagnosed me with CES. I asked about one month post-op and was told not to go there, that it was not CES!! Now two years later, all the symptoms, but not that diagnosis. In my quest to find out what was wrong with me, I had a Myelogram. 4-5 months later I had a MRI/contrast and it shows ARC at a different level than what was operated on. I don't believe I had ARC at surgery or that it occurred then. It is nerve entrapment or injury occurring during surgery. I truely believe it is from the hardware and narrowing of the canals. Possible a pedicle screw near the S1 or the cage. I await a 2nd surgery for foraminotomies at the L4,L5, S1. Also a Lamininotomy of the L3/L4 where there are bone spurs. They will be removing the hardware also. I have tried all the drugs for urination, nothing. You have to watch some of them, they will drop your blood pressure real low. I have to carry a bag with catheters everywhere I go. I have a supply of lube and adult diapers also. I actually have had security follow me around and they follow me into the restroom. I now just pull out the catheter and they take off running. I guess they just get on their phones and say, Not a Terrorist! Just a little humor in this sad situation I had some bowel movements after coming home from the hospital. Then the back pain increased and the constipation to the point I can't sit down on the toilet. I found out about manual evacuation on line. If I had waited for a doctor to educate me, I would have been 10 months post-op. I accept these things as somewhat normal routine now. I would keep them, if only the pain was gone. I still pray for a full recovery from the second surgery though. The urologist can help you learn to do the self catheterization. That's way better than having the one with the hose and bag strapped to your leg. The gastrologist did test and found that there was nerve damage that was controlling the sphincter muscles. I retrograde if I even try love making. They said they will get to that later. Only men retrograde and it is only important if you want to have children. I hope they find something for this CES, ARC, and CRPS/RSD real soon. A little over two years ago I had never heard of these words. Hang in there. I always feel there is hope.

[Chris54]

Bea, They have never diagnosed me with CES. Do I think I have it? Yes I do. I accept it. The doctors don't. There is a thread started a few days ago by Moldova. It is Chris.... It does have all these other conditions listed and what they generally are. The symptoms of different ailments can be simular to these things. I hope my doctors are right and I don't have CES.

[Baybreeze]

I really don't know the answers but I have had similar things happen to me and don't know if it's just coincidence, but they always seem to happen when I have a large herniation. I get ALOT of urinary issues. At first I can hardly go at all...seems like a few drips come out. That will last a week or 2, then all of a sudden I have to go constantly, though not much still comes out. I actually wrote down the time for 3 days of everytime I went all day & all night. I was going between 20 to 30 per day and night. Then once I either got steroid injections or took oral steroids, it all went away! All of a sudden I was going full force maybe 3 times a day & never woke up at night. Then next herniation, it all started again. This spring when I had severe sciatica and numb foot, etc...this happened, but I also became severely constipated. I comtemplated going to the ER...I didnt go for abbout a week, no matter what I took or drank. And that was before I got any painkillers. And the pain was unbearable..every teeny little strain struggled for caused massive waves of pain along my sciatic nerve and in my rear. UGHHHH

I was checked by my Gyno for interstitial cystitis and had a CMG test. I had no IC and the CMG test didnt show anything. However, when I these tests done, I was not in the middle of a herniation. My gyno didnt think my bladder issues were caused by my spine problems b/c he said the bladder nerves are under the tail bone area. But did say I should ask my surgeon about it. He gave me scripts for Detrol LA to try....one thing it does seem to help is not having to wake up all night to go, I only got once for some days.

I just saw a new PM the other day and totally forgot to bring this up & ask him about it. I'm going to ask when I get my epidural, though...plus next time I see my surgeon i'll ask him.

[sandim]

Originally Posted by Chris54

The pathetic thing is, the doctors have never diagnosed me with CES. I asked about one month post-op and was told not to go there, that it was not CES!! Now two years later, all the symptoms, but not that diagnosis. In my quest to find out what was wrong with me, I had a Myelogram. 4-5 months later I had a MRI/contrast and it shows ARC at a different level than what was operated on. I don't believe I had ARC at surgery or that it occurred then. It is nerve entrapment or injury occurring during surgery. I truely believe it is from the hardware and narrowing of the canals. Possible a pedicle screw near the S1 or the cage. I await a 2nd surgery for foraminotomies at the L4,L5, S1. Also a Lamininotomy of the L3/L4 where there are bone spurs. They will be removing the hardware also. I have tried all the drugs for urination, nothing. You have to watch some of them, they will drop your blood pressure real low. I have to carry a bag with catheters everywhere I go. I have a supply of lube and adult diapers also. I actually have had security follow me around and they follow me into the restroom. I now just pull out the catheter and they take off running. I guess they just get on their phones and say, Not a Terrorist! Just a little humor in this sad situation I had some bowel movements after coming home from the hospital. Then the back pain increased and the constipation to the point I can't sit down on the toilet. I found out about manual evacuation on line. If I had waited for a doctor to educate me, I would have been 10 months post-op. I accept these things as somewhat normal routine now. I would keep them, if only the pain was gone. I still pray for a full recovery from the second surgery though. The urologist can help you learn to do the self catheterization. That's way better than having the one with the hose and bag strapped to your leg. The gastrologist did test and found that there was nerve damage that was controlling the sphincter muscles. I retrograde if I even try love making. They said they will get to that later. Only men retrograde and it is only important if you want to have children. I hope they find something for this CES, ARC, and CRPS/RSD real soon. A little over two years ago I had never heard of these words. Hang in there. I always feel there is hope.

Chris,
It was only when I went outside on my own to figure out what the heck was happening to me , that I finally got answers. I had all of the textbook CES symptoms. Immediately after my first fusion surgery, while still in the hospital, when they moved me, the pain was excrutiating, the morphine drip did nothing and I thought that I would die. Instead of having numbness in my left calf, and a moderate foot drop, it became a complete foot drop, and bilateral numbness, including the soles of both feet, big toes and the last two toes on each foot, inside of my thighs and perianal area. I have never felt pain like that before in my life. I had a almost 7 hour surgery on Thursday, they sent me home on Saturday morning, without bothering to check if I could go the toilet by myself. In fact, they never even asked. I couldn't feel it, anyway. I told them that something was really wrong, but was told it was just post op pain and swelling and it would go away.
By Monday, I could barely stand up, couldn't feel my legs or feet at all, and was in excrutiating pain. I also developed a post op infection, so I called the doctor's office and told them again, about not being able to go the bathroom, the spreading numbness, the pain......they told me to take colace.
After about three months, I finally was able to go a little to the bathroom on my own, but was up and down all night and day because I couldn't empty. I couldn't tell when I had to go as far as bowels and had no ability to push anything out. It was a nightmare.
I finally got fed up with being told that it was "failed back surgery", and when I totally lost control over my bladder again, I got scared and said enough is enough and started to seek out other opinions on my own. That's when I finally was told that I developed CES after the first surgery, and that it was not going to get better.
I know this much, and that is that my surgeon did not listen to me after my first surgery, because if he had, he should have recognized CES. Every doctor that I saw since then has said the same exact thing. I think that you need to seek out other opinions and bring the topic of CES up and see if they believe the same thing happened to you, because it sounds like it did to me.
I'm sorry that you are having such physical difficulties, I know how hard it is to deal with.
Anyway, you can also look up Cauda Equina Syndrome Support Groups and you will find the group. If we were allowed to post the links, I would but we're not.
I know that many of the members have gotten some improvement over time, but that in large depends on the length of time that the nerves are compressed.
I had a second surgery in August 2007 to try to decompress the canals and the nerve roots at L3-4, again L4-5 ( revision and redo of fusion- hemilaminectomies, etc), and L5-1 . So far, I'm not seeing any real improvement but I had to try anyway. I also was diagnosed with arachnoiditis from the myelograms and injections, and probably the damage from the first surgery.
Hang in there friend,
Sandi