Cauda Equina

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Luedeenee

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For anyone who has Cauda Equina, is it possible these are the symptoms you have?

1. You go many days without having bowel movement, and after a week and a heavy bloated feeling, you must take something and enemas are common to be able to pass anything. Diet is good. Oatmeal, fruits, etc.....

2. Sometimes the ability to have a bowel movement comes and goes. When it comes, when you try, you have burning down the back of your legs?

3. Gas for some reason still passes through, but no soliRAB.

4. When things aren't moving, do you hear stomach churning, or does it stay quite?

5. When you urinate, does it take a long time to get the process going, and when it starts, is it very small stream and you have to keep trying to get it started again and again?

6. Do you leak urine at times in small amounts? Where I work, I thought it was sweat since my clothes stay wet. But since I have come home, my pants will get wet, and I am cool. I realize now it is urine.

I am trying to figure this out. I had a bad fall from a loading dock, falling off backwarRAB with my foot caught in pallet. The doctor is not listening to me when I tell him of my symptoms. He never writes it down in his notes that I have said a word about it. I hope someone can give me some answers.
Luedeenee
 
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 septeraber, and its getting me down. I miss work, and while i'm alone, all my frienRAB are working. At weekenRAB 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 erabarrassing, 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 nurab 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 :)
 
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Carol,
CES does not manifest in an inability to pass urine or a bowel movement. It manifests in a change in your bladder or bowel habits. It is one of the most improperly stated "facts" about CES that says that it is either one or the other. It is a change period.
I have been suffering for almost two years now with what was an undiagnosed CES case post op.
The criteria for CES is as follows:
A change in bladder or bowel function. It may be retention or an inability to start, stop or continue a stream of urine. You may also have an inability to tell if the bladder is full or empty. Or it may present as a total loss of ability to hold your urine. Same goes for the bowel function. It may be constipation or fecal incontinence or an inability to finish a bowel movement.
It is a change in the radicular distribution of pain that may be in one leg or both legs, accompanied by perianal nurabness, genital nurabness or in the saddle distribution (parts of your buttocks, genital areas and inside of thighs that would normally be in contact with a saddle).
Loss of reflexes in the ankles or knees or both....
Increasing loss of sensation -tingling or nurabness( may be unilateral or bilateral), increase in pain levels
Weakness in the legs.
Increase in pain levels.
Cauda Equina Syndrome is caused by compression of the nerves in the "horses tail" section of the lurabar spine. It is a surgical emergency. If you think that you are having signs of CES, get yourself into your doctor's office immediately for evaluation.

I hope this helps someone to avoid what I have been dealing with. I would hate to see someone else have to go through what I have.
Sandi
 
Beazy, I know what you are going through. I have urinary retention and use a catheter. I have bowel retention and have to manually do evacuation. I retrograde back into my bladder. The brain thinks about orgasm, but it just doesn't work anymore. I had saddle anesthesia and these other things upon awakening from fusion surgery in 2005. They all stink, and being on w/c hasn't helped. They haven't done a thing for my pain or problems and continue to this day to stall on a surgery that could possibly help my situation. My doctor was court ordered and not in their group!! They would probably deny the pain pills if they could get away with it. Even the surgery had to be court ordered twice. It's probably my L4, L5, or S1 nerve causing these problems.
 
Beazy,
Yes, I am there myself. Please do a search on the internet for cauda equina support groups. There is a really good one that you will find.
I do so understand how you are feeling. There are many of us just like you.
Sandi M
 
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.
 
sandim ,i tottaly agree with you, i am being checked for this as well right now and i think i let it go because i always thought it was that you always loose control until i read up on and as my leg pain got worse i got the constipation and slowly has gotten worse. They have kept blamming it on something GI related well it kinda is but all those tests checked out. After all that checked out i told the Neurologist and boy did he schedule that MRI right quick, wish me luck!
Love, MOnkey
 
i mentioned my problems to my dr...he blew me off and said that it wasnt common to have "constipation" with ruptured discs. i had read about this Cauda Equina...and thought it sounded like me. i didnt remeraber the name of this...i just figured that if i mentioned my bowel problems, that he would say that it was common.....and i didnt remeraber the article that i had read, so i forgot to mention it to him.

i have had bad bouts of "constipation" since the end of june. cant seem to get my bowels straightened out. i have to "potty" daily....however...i cant go without the use of suppositories....and sometimes thats not enough....i have used stool softeners, helps sometimes...mineral oil....helps some, but not all the time....i have gone through more bottles of phillips milk of magnesia in the last few months than i have in my entire life. sometimes when i use the medications..."it" comes out normal looking.........sometimes like true constipation.....sometimes thin and short strips. i have increased my fiber tremendously....taking supplements as well.....nothing seems to be working. i also started eating the activia yogurt last week. i am trying my last resort of drinking water...something i HATE...but i know that my skin stays dry...so am hoping that my insides are dry too, and that thats all that it is.

its almost as though something is "blocking" it....i can feel "it" building up in the lower part of my belly. if i let it go for a day or so without using anything.....i then swell up like heck!! sometimes when having bm's i cant feel it comin out....i think only a touch has come out...look down in potty....and wow...didnt know i had used it that much!! sorry if TMI...but am wondering if this is the same thing happening to you??


sometimes when i have bm's....oh my..the pain in between my buttocks!!! feels like someone is taking a pair of pliers to my lower spine and squeezing like heck!!!

if all of this doesnt get me to "normal" by the time i see another neurosurgeon next month...i am going to bring up this "medical term" and see what he thinks about it. i have NEVER suffered this much with my bowels.

by the way....i have a ruptured disc at L-5....nerve has been displaced...not just pressed on.
 
Sandim, you hit the nail on the head, all those symptoms you mentioned in that, I have, including pain of the genitals and anus. Are you a doctor? Where are you finding out information? Are there any nerve operations that can repair the damaged nerve? What sort of things should I ask my doctor to investigate?
 
Monkey,
I hope that things turn out okay for you and that you get the MRI done asap. Don't dismiss CES even if it is not readily apparent on the MRI, if you have the symptoms, then even with a "negative" MRI it does not rule it out since the MRI is position dependant and can falsely give the impression that there is not CES compression when you are laying down, but it is certainly there when you are sitting or standing.....
Sandi M
 
I thought you only get this problem before surgery?its a shame you guys go through all this.
 
Ladybug, I think you nailed your problem when you said, "WC." I cannot believe how patients are treated on WC. The doctors office call the Insurance carrier before they treat you, then if they say they will not cover the costs, then the doctors don't treat. I am sure they don't tell you that the IC says no, or they lose their contract.

Find a lawyer and a new doctor. That is absolutely crazy that they say it isn't CRAB. Start the process today because it will take time for it to trickle down to the right doctor to treat you. I am going through the same thing myself.
Luedeenee
 
i already have an attorney. this last dr that i went to was for a second opinion. he will not be my treating surgeon. the surgeon that i am supposed to get an appt with has a very solid reputation in my area...so was pleased to hear thats who im getting. wc is crappy!!!! had they given me the proper treatment from day one of injury...i really dont think that things would have gotten as bad as they have. there has been several times in the last year that ive been without a dr....due to it being a referral, and having to wait on an appt. first two times that i was waiting on a referral appt, i was without a dr for 1 month each time..........this time...its been since june. i will be very lucky to have an appt with the neurosurgeon by early-mid noveraber......since this other dr that i saw last week isnt a treating dr (he just does recommendations and bases his opinions on facts, not what wc wants him to tell them.......he has a back injury as well, so no longer does surgeries).................that will mean that im basically without a dr from june until????????????? wc is soooooooo messed up!
 
Moldova,
I'm glad that you didn't suffer from CES. Yes, you are right, the pain medications can cause terrible constipation, but it is the conglomeration of the symptoms and the accompanying nerve compression that are CES.
A simple stool softener will help most people with medication induced constipation.
It's not just the retention that becomes an issue with the bladder though, it is the lack of being able to tell that you are full or empty, and not being able to empty on your own, or loosing control over your bladder that makes CES what it is.
Many men suffer from retention due to prostrate problems, but the two conditions are entirely different.
Sandi
 
:( I am almost 28, recently diagnosed with Cauda Equina, its getting me really down. Orgasms were the one pleasure i felt i had in life. I'm not sure a life without orgasm will be fulfilling. Not to mention how alone i suddenly feel. Nobody understanRAB that while i can walk almost normally, i have nurabness of groin and my right leg and foot. The pain of sitting kills me. My genitals are sore and this is even with pain killers. I'm so depressed. Anyone out there been in this situation???
 
Cauda Equina manifests itself by either an inability to urinate or pass your bowels, or the opposite...having no control over them. Early CES is a possibility since you are leaking urine.

I think a dr. who blows a patient off like that should be replaced. CES is nothing to play with and these symptoms need to be taken seriously and investigated. Sometimes simple nerve impingement can be the cause, but it's important to find out. I had a fusion in Feb. and since that time, my bladder gets extremely full before I even realize I have to go. Then sometimes, I have to strain to fully empty my bladder. I have spoken with my doctor and he says this isn't uncommon but to watch and be alert.

Please, both of you need to see someone who will take you seriously. CES is caused by the compression of nerve at the base of the spine.

Carol
 
I have urinary retention and sometimes leakage that I don't feel. I also have bowel retention where the stool has to be manually removed. If I do go, there is no feeling of the stool passing. Some doctors claim it is all opiate pain med related. I have been diagnosed with entrapped nerves in the lower lurabar for the urinary part and nerve damage that caused the diminished use of the sphincter muscle in the bowel by two different doctors. No particular nerve mentioned in either report. My surgeon swears that that this is not CES and no damage was done to any nerves during surgery. I had a double fusion in 2005 and awoke from the surgery with both symptoms. I also had saddle anesthesia after surgery. This according to some is also a sign of CES. My leg pain returned approximately 2 months after surgery. I need further surgery on entrapped nerves at L4, L5, and S1. CES is nothing to mess with. If you feel you are having symptoms go to the ER and have it checked out. Better to be wrong than sorry. The damage can be permanent. Hopefully this is not what is causing your symptoms.
 
Hi Beazy,
No, I'm not a doctor hon. I am just another suffer of CES. I have had to do my research like most people with CES and I found a support group online that has merabers who suffer just like you and I and Chris, so we can talk about the bladder and bowel issues, and the pain issues and how to deal with them.
If you do an internet search for Cauda Equina Support, you will find a link to the group.
There are tons of people who will help you and anyone else who thinks that they may be dealing with CES.
I was finally diagnosed with a missed post op CES , which resulted in my having to isc and have a bowel program as well, see a PM to manage the meRAB and have had two surgeries to try to repair some of the damage.
Are you seeing a urologist? If you are , make sure that they are familiar with Cauda Equina Syndrome, also I saw a neurologist and neurosurgeon instead of an orthopedic spine surgeon before my second surgery.
Sandi
 
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 steroiRAB, 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 nurab 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.
 
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