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Arachnoiditis board


[QUOTE=Chris54;3328515]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.:mad: 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