Hi Sandi, nope, i'm not seeing a urologist, and the neurosurgeon who operated to remove the spinal disc and fusion has said there is nothing more he can do for me. They passed me onto a spinal unit, which is more focused on spinal injuries, but the nurse i cried down the phone to the other day said i was not really their patient, ie they are doing me a favour! Its like nobody is looking out for me, i'm left in lirabo, and if it was not for the internet i'd not survive this. The pressure of trying to cope with constant pad changing and cleaning while trying to recover from major surgery is almost unbearable. I wrote down a list for my next GP visit to ask about Urologists, uroneurologists, andrologists, sex therapists, counsellor, and gynaecologist. I seen these advised on the oldcity web site in relation to CES. I have so many worries and concerns, yet it feels like i've been packed off and forgotten about. How long have you and Chris suffered CES? ps what did PM stand for and isc? I'm only on my third month of having CES and only one month since it was diagnosed, does that make sense? Bea
M
monkey5
Guest
apo22, i haven't had any surgery as of yet,lets hope i don't need to!
Love, Monkey
Love, Monkey
S
sandim
Guest
Bea, Yes, hon you do make sense and I remeraber those same panicky feelings when I was first diagnosed.
I would recommend that you see the following doctors for starters, a good neurologist, a neurosurgeon ( board certified in spine surgery), a uro-gynecologist or urologist, along with a Pain Management doctor to help control the pain issues.
If there is any chance of getting some of the pressure or scar tissue off those nerves, you will need a neurosurgeon to do that. My original surgeon was an orthopedic spine surgeon, and he is the one who missed my post op CES. The regular neurologist will do some testing to see if there is function to the nerves and will have some suggestions for medications or treatments.
The urologist will probably offer to do urodynamic testing, which is basically to see how much you can empty on your own, if you leak or loose control of your bladder, and if you are retaining urine. There are some medications that you can try to help with that, although I did not have success with them, I know others have. I have to Intermittent Self Cath ( that's what ISC means) several times a day, but at least with that, I don't have to worry so much about loosing control of my bladder outside anymore. It's does a nuraber in your head at first, but once you get past that, I have found that it is more helpful than anything.
I've had it now for almost two years. Those first months were the scariest, I knew something was horribly wrong but got the poo poo, it's just post op swelling talk.....well it wasn't and it isn't.
I won't kid you Bea, CES is no picnic, but the sooner you can get into see a neurosurgeon, if there is a chance for those effected nerves to have a chance to recover, that is where you should start. I know that you're scared, I was too and I'm sure that Chris had a hard time adjusting at first as well.
If I can help, please feel free to ask.....and look for that support Group......it will help.
Sandi
I would recommend that you see the following doctors for starters, a good neurologist, a neurosurgeon ( board certified in spine surgery), a uro-gynecologist or urologist, along with a Pain Management doctor to help control the pain issues.
If there is any chance of getting some of the pressure or scar tissue off those nerves, you will need a neurosurgeon to do that. My original surgeon was an orthopedic spine surgeon, and he is the one who missed my post op CES. The regular neurologist will do some testing to see if there is function to the nerves and will have some suggestions for medications or treatments.
The urologist will probably offer to do urodynamic testing, which is basically to see how much you can empty on your own, if you leak or loose control of your bladder, and if you are retaining urine. There are some medications that you can try to help with that, although I did not have success with them, I know others have. I have to Intermittent Self Cath ( that's what ISC means) several times a day, but at least with that, I don't have to worry so much about loosing control of my bladder outside anymore. It's does a nuraber in your head at first, but once you get past that, I have found that it is more helpful than anything.
I've had it now for almost two years. Those first months were the scariest, I knew something was horribly wrong but got the poo poo, it's just post op swelling talk.....well it wasn't and it isn't.
I won't kid you Bea, CES is no picnic, but the sooner you can get into see a neurosurgeon, if there is a chance for those effected nerves to have a chance to recover, that is where you should start. I know that you're scared, I was too and I'm sure that Chris had a hard time adjusting at first as well.
If I can help, please feel free to ask.....and look for that support Group......it will help.
Sandi
About 10 months post-op I had a micro-wave on my prostrate to see if this was causing the problems. It wasn't. I tell everyone if you have to squeeze to urinate, see someone fast. It's not natural. If you are not emptying out completely you run the risk of kidney problems and infection. I usually don't know when I have to have bowel movement or when the bladder is full. Sometimes the saddle area and groin lets off a little, then it comes right back.
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 worRAB. Hang in there. I always feel there is hope.
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 worRAB. Hang in there. I always feel there is hope.Chris i had a similar problem, at first i could not feel the pee, i could only hear it, and rapidly this turned into my having to squeeze out the urine. I'm now fully cathatorised and wear nappies, and I too have been told i will need to do manual evacuation for my bowels for the rest of my life. If it was just the bowels or bladder, you can learn to cope, but not knowing if i can have sex, if i will get any kind of sensation, or even whether or not i'll be able to have children is all very unsettling. CES sufferors sometimes get a prolapsed worab, i'm just hoping that has not happened. I am taking comfort that you guys are here talking about it, even if sitting at the pc hurts, lol. Its just an erabarrassing topic to bring up with people. One day i'm walking along Manhattan exploring, a month later having a spinal op that has changed my life.
M
Moldova
Guest
I have nerve damage after my fusion surgery. I don't have control over my bowel or bladder.
I have all of the symptoms Sandim wrote about, and this is all is symptoms of CES in complex.
Often our PK causing horrible constipations but it has nothing to do with CES. And it's true that it's hard to control - seems nothing is helping.
CES is much more than just constipations or retention. My friend has retention due to his prostate problem, but it's not CES.
The best would be if you could go and check it with your Dr. who is familiar with this condition.
I have all of the symptoms Sandim wrote about, and this is all is symptoms of CES in complex.
Often our PK causing horrible constipations but it has nothing to do with CES. And it's true that it's hard to control - seems nothing is helping.
CES is much more than just constipations or retention. My friend has retention due to his prostate problem, but it's not CES.
The best would be if you could go and check it with your Dr. who is familiar with this condition.
S
sandim
Guest
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 nurabness in my left calf, and a moderate foot drop, it became a complete foot drop, and bilateral nurabness, 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 nurabness, 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 sounRAB 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 merabers have gotten some improvement over time, but that in large depenRAB 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
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 nurabness in my left calf, and a moderate foot drop, it became a complete foot drop, and bilateral nurabness, 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 nurabness, 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 sounRAB 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 merabers have gotten some improvement over time, but that in large depenRAB 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
L
ladybug8372
Guest
The dr that I saw was just for a second opinion. I mentioned my problems, and he said that it has nothing to do with the back. Thats its either due to inactivity, lack of fiber, medications, or not enough water. Inactivity...Im not as active as I used to be...but still move around. Fiber...I have increased my fiber intake..not only using Fiber Sure, but also eating Raisin Bran for awhile now. It used to be that if I got constipated, one to two days of Raisin Bran, Id be back on track. I am not taking any medications. I drink water here and there, definitely not enough...but I started yesterday drinking 60 ounces a day....so gonna give that a shot while waiting for my appt to be made with the neurosurgeon.
I cannot go to the ER with this situation, as this is a workmens comp case. As long as I stay on top of things and dont let myself get compacted....I think I will be ok til I get the appt with the dr. Nerve damage??? well...thats totally out of my control.....due to WC, I havent had a dr since June....up until the one I saw last week...which he isnt my dr....just for a second opinion and recommendations. so...more waiting for me to get a dr. So, theres nothing I can do. Im out of work and cannot afford to rack up bills that WC should be paying for, so my only option is to try to keep things as under control as I can. If things havent improved by the time I see the other dr, I am going to printout the info on CES and tell him that I believe that I have it.
I cannot go to the ER with this situation, as this is a workmens comp case. As long as I stay on top of things and dont let myself get compacted....I think I will be ok til I get the appt with the dr. Nerve damage??? well...thats totally out of my control.....due to WC, I havent had a dr since June....up until the one I saw last week...which he isnt my dr....just for a second opinion and recommendations. so...more waiting for me to get a dr. So, theres nothing I can do. Im out of work and cannot afford to rack up bills that WC should be paying for, so my only option is to try to keep things as under control as I can. If things havent improved by the time I see the other dr, I am going to printout the info on CES and tell him that I believe that I have it.
S
sandim
Guest
No, you can develop it as a result of surgery as I did. It can be caused by many things and unfortunately, there is so much misinformation about it out there, that even the doctor's don't always recognize what is right in front of their faces......as in what happened to me.
Sandi
Sandi