Cauda Equina Syndrome?

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Regular Member

Date Joined Apr 2010
Total Posts : 442
   Posted 4/14/2011 1:02 AM (GMT -6)   

Hi There...I usually hang out over on the fibromyalgia forum, but I have a question I thought someone here might be able to help with.


In June of 1985, I fell from a height of about 4 feet backwards with no opportunity to stop my fall.  My tailbone area landed on a rock.  For the next six months, I was in such extreme pain I was placed on pain meds and had to sit on a donut wherever I went. 


After the accident, I had to stop all physical activity.  I was in the middle of the season playing league softball and tried to play one game and had to quit in tears.  I had children at home and had a small daycare.  I remember I couldn't pick up the baby I cared for and could barely get down on the floor to play with her.


In the next few months, I remember having to go to the doctor and he had to dilate my urethra several times because I couldn't urinate.  My left superficial femoral artery also grew very large and very painful.  I had to elevate my leg at night and sleep with my leg propped up on pillows because of the pain.


I took a desk job that fall.  In November of that year (1985) I went to the doctor to see about getting the vein stripped.  Instead of focusing on the vein, he said my uterus was prolapsing so bad it was outside my body, and I also had one ovary prolapsing along with my bladder.  I had noticed that I couldn't keep a tampon in when I had my periods.  I had never had any health problems before the accident except for headaches. I think if someone can break a bone after a bad fall, it is also a possibility to tear supporting ligaments inside the body in a bad fall.   He said I needed to have a hysterectomy, my ovary taken out, and my bladder suspended and that we would do the vein later.  We went ahead with the surgery in January of 1986, but by the time it came to do the vein, I didn't have any insurance because my husband lost his job and we had to move.  Even after the bladder suspension, I have continued to have problems with frequency and urgency to urinate.  I still wear pads because of dribbling.


I was diagnosed with fibromyalgia in 1996 after having had problems for at least 10 years (after the fall).  Also, I finally had the vein stripped in 1998, but the toll it had taken on my ability to stand and walk was horrible.  I went to see one doctor in the early 1990s and he dismissed my pain and told me to quit wearing tight pants.  If he had noticed, he would have seen that my left thigh was very much bigger in size than my right thigh.  I wasn't as outspoken then as I am now. 


In 2004, I was in a freak car wreck and was pulled by my car for about 15 feet before letting go and falling back.  Since then, I have had more problems and pain in my hips. I was treated for bursitis in both hips in 2004.  I was told by the physical therapist that my hips were out of alignment, that one was pointed up and out and the other down and in. He thought they had been that way since I had the accident in 1985.  I don't know if the physical therapy was able to fix that.  I was living temporarily in a bigger city at the time I had the therapy.  When I moved back to my small town, my physical therapist tried to find someone in my small city who knew something about fibromyalgia, but he couldn't and I didn't have any more physical therapy.   


In February of 2009, I was started on a special physical therapy program in the big city for people who can't exercise.  It is the same physical therapy program that Olympic athletes get (I can't remember the name).  It basically vibrates your limbs.  I was told that when it was on my arms, in the time I could do three arm lifts, the machine could do thirty.  I continued with that program for several months until it came to the point that I couldn't afford to drive up there several times a week and also because my hips were not benefiting from the therapy.  Instead, my hips hurt worse.  I don't know if it was due to the therapy or driving four hours round trip for the one hour therapy or whether it was the fibromyalgia flaring.


In June of 2009, I had several weeks of increased physical activity and after that my buttocks hurt so bad all I could do was lie on the couch.  I couldn't sit or lie on my back.  I believe I got a Toradol shot at that time.  I have had the same pain off and on since then and have been on Vicodin for pain relief.  I am also on muscle relaxers for the fibro.


Last fall (2010) I had my first episode of sciatica.  Since then I have had, I believe, four episodes.  Each one lasts longer than the other.  I have had two episodes of wetting the bed and one episode of fecal incontinence.  I also have episodes where I go to the bathroom and when I wipe my backside, there is fecal material.  The only relief I get from the sciatica is from Valium and Toradol shots.  Monday I will have a pelvic exam and then an MRI without and with contrast to see if I have any nerve damage in my lower lumbar spine.  I do have a 1 inch fatty tumor on my sacrum that causes me pain and they say it can't be removed.  I imagine when they do the MRI it will show whether the tumor has grown.


Does this sound like CES to anyone?  My doctor has mentioned it but hasn't been in a big hurry to do anything.  I saw her last week. I had been told by my doctor that I can have a Toradol shot every other day for as long as I need them, and I try to make one last 3-4 days, and then the pharmacist told me that I can only have FIVE Toradol shots my entire life because it has an FDA black box warning on it and she won't complete filling the prescription for more than five shots.  I'm very confused about that but will ask about it Monday when I go to the doctor.


Any opinions? I have heard that CES can be slow onset, but I don't know much of anything else about it. 


Thanks for staying with me this far.



Veteran Member

Date Joined Apr 2010
Total Posts : 2261
   Posted 4/14/2011 3:18 AM (GMT -6)   
Hi Donna. I'm sorry I don't know anything about Cauda Equina Syndrome. I just wanted to drop by and welcome you to the chronic pain forum. You have found a family of really wonderfully supportive people here. I hope you get relief for your pain really soon. Take care.

Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

Forum Moderator

Date Joined Feb 2003
Total Posts : 15835
   Posted 4/14/2011 4:08 AM (GMT -6)   
Hi BW oh, I am so glad that you posted over here. Please, please go to and print out the information on Toradol and give it to your dr. It clearly states Toradol is a short term drug to be used, no longer than 5 days. I was given Toradol in trigger point injections and my NP told me then it could only be used so many times and that was it, I did not know why as he did not say. After going to and seeing that it can cause a stroke or heart attack if used longer than 5 days because of how it changes up hormones or a perforation in the intestines and stomach bleed I understand why he said this. He is a dr and he should have known this BW. At least with him being a dr I sure would have thought so anyway. If you have already used it this year I would not have any more injections. You are right, Toradol is wonderful for pain. Its just a shame that it can cause so many bad things. I did not look to see if there was black box warning listed but it would not surprise me if it has it considering how dangerous of a drug it can be.

I know very little about CES, however, we have a member by the name of Mrs123 that has this condition and hopefully she will see this post and she can sure help you out. So, please keep checking back to see if she has posted something here for you.

Anyway, I wanted to pop on and tell you about the Toradol and give you the website of so you can inform your dr no more Toradol and why. Also, welcome aboard to the CP forum we are glad to be here for you.
Moderator Chronic Pain Forum

Regular Member

Date Joined Apr 2010
Total Posts : 442
   Posted 4/14/2011 10:03 AM (GMT -6)   
Thank you, Loretta and StrayDog. I went to the site after I talked to the pharmacist and saw the warnings. My question is, if Toradol is so dang potent, then why are all other NSAIDS given free rein? People take all forms of them every day, sometimes for life, and they basically have the same potential to cause as much damage as Toradol, just perhaps over a longer period of time. I mean, my dad was give Vioxx once and had a stroke. What they told me when I first started getting injections was that the injections bypassed the stomach and therefore weren't that dangerous. But I will not take any more shots. I surely don't want to end up worse than I am now. Thanks for the reassurance.


Forum Moderator

Date Joined Feb 2003
Total Posts : 15835
   Posted 4/14/2011 11:16 AM (GMT -6)   
I cannot really answer your question except they say it is like an opiate in strength and of course, none of the NSAIDS are near that strong. It does work very well, I can say it did for me. But, it does worry me your dr using it so freely and it makes me wonder how many other patients are receiving it as you did and that just scares me to death. I do hope you will taker a printout to him the next time you have an appt.You may save someone's life by doing that.

Take care.
Moderator Chronic Pain Forum

Veteran Member

Date Joined Dec 2007
Total Posts : 1230
   Posted 4/15/2011 10:39 PM (GMT -6)   
Hello BWFM,
I'm Sandi, or better known as mrsm around here......I am the one that Stray mentioned that has Cauda Equina Syndrome, twice in fact.
A broken tailbone can cause all of the problems that you spoke of in the early part of your post. It can take months to heal and be painful for even longer. I know this because I fell and broke mine several years ago after falling off my basement steps. smhair   When I broke mine, I couldn't sit, stand or lay down for several weeks for more than a few minutes at a time and only then using a big, huge pillow!
It is entirely possible to tear ligaments and tendons with a fall like the one that you took. It is possible that you may have caused damage to the nerves that run to the bladder and bowels too by fracturing your tailbone. Did you ever have xrays to determine the placement of the fracture? Mine was fractured and displaced, so depending on where you fractured it and you may have displaced the tailbone as well or caused compression of the nerve roots.
If you injured the nerve roots to the bladder and bowels and are pushing on your stomach or using your muscles in the stomach to push out urine or feces, that may have caused the prolapse.  Not being able to retain the tampon could also be related to the prolapse. Unfortunately, pushing on the bladder or bowels or using your stomach muscles to try to empty your bladder or move your bowels can cause you to have difficulty dribbling after doing it for a period of time.
The hip pain can be related to spine problems but it can also be related to the way you walk and not to the spine at all. The only thing that will answer is an MRI or CT scan to evaluate any problems with the hips and/or spine.
Cauda Equina is usually caused by a massive herniation or a sudden trauma to the lumbar nerves in the spinal canal.  There are definative symptoms and signs, along with the results of a physical exam, and radiologic exams ( MRI's and CT scans/myelograms) that rule it in or out. You don't mention the most common symptoms of Cauda Equina Syndrome, which would be the red flags that would indicate that CES is something that needed to be ruled in or out.
To me, it doesn't sound like it is Cauda Equina Syndrome , but I am not a phyiscian, only another back patient who happens to have had/has it twice.  Chronic CES is very similiar to the acute type but has been there for some time. Even given the difficulties you have with your bladder and bowels, it doesn't sound like a chronic case of it either.  It does sound however, like you may have caused damage to one or more of the sacral nerves that go to the bladder and bowels and that may be the cause of the difficulties you are having with those organs.
Sciatica is an inflammation of the sciatic nerve that runs from your back, down through the legs on both sides.  Inflammation in that nerve can contribute to the problems that you are having with your hips as can inflammation in some of the other lumbar nerve roots.
Stray is correct, that toradol is not supposed to be used for more than 5 days. Under any circumstances. I would not take it again , no matter what. There are other medications that your doctor can use to help manage the pain , other than toradol if you need an anti- inflammatory.
I would also suggest that you see a orthopedic board certified spinal surgeon or a spinal neurosurgeon who is board certified to see what is causing the sciatica and to really evaluate you for the fatty tumor and any possibility of surgery or pain management so that you are getting the proper care. GP's are not equipped to handle complicated spine issues or pain management long term.
The website above lists the symptoms of Cauda Equina Syndrome. I hope this helps.

New Member

Date Joined Nov 2005
Total Posts : 12
   Posted 1/20/2012 8:00 PM (GMT -6)   
@mrsm123, Nice to meet someone on here that also has CES!!! not that I'm glad to be here looking for someone that also has it (I would'nt wish it on my worst enemy) but, I was hoping this site had a forum for us but, I see it don't...It's so hard to find someone that understands! I just turned 36 years old (female) and suffered from CES Dec.25, 2011 and just 2 weeks ago had my 3rd surgery for it...YEP 1 year 3 surgeries :(
anyways I would love to join up with you if you would like?
I mostly go to Cauda Equina syndrome group on Facebook since there is so little out there for us!

New Member

Date Joined Feb 2012
Total Posts : 1
   Posted 2/23/2012 6:29 PM (GMT -6)   
Hi, I signed up on this forum just to respond to this post. I am 30 years old and I have Cauda Equina Syndrome. I developed it in Feb 2011 and had emergency decompression surgery 30 hours later. Mine was a slow onset , and caused by a herniated disc to T12 , L1. This is the highest possible disc you can get CES at. Any higher and you get in to technicalities. You would then be searching for Conus Medularis Syndrome.

Only a Neurosurgeon can Diagnose and Treat and Repair CES. It is a SURGICAL EMERGENCY! You have 48 hours to be decompressed. You must have huge amounts of IV, Coritcol Steroids while you are waiting for surgery. Otherwise the injury to the nerves are likely permanent.

For those of you looking for more of us CES Suffers. We are all over on Facebook. There are several dozen of us, and we vary in age from 26 to 60.

I will try and post a link if it will let me as a new member.

I would like to let you all know, that I have had Great Success with Nucynta for pain. I just switched to Nucynta ER and so far it does not work as well but it does need to build up.

Veteran Member

Date Joined Jan 2010
Total Posts : 3557
   Posted 2/23/2012 6:36 PM (GMT -6)   
Hi Justmenkc...

Welcome to HW...FYI but this particular post was started back almost a year ago...So even though someone posted in it a bit ago...We encourage new members like yourself to start a new thread introducing yourself so that we can get to know you better...That would be using the button Post New Topic...

There was just another thread started about CES so there are a few people on the boards who also have this..

The one thing we can all empathize with no matter what our source is, is that we all have pain..'s a great board and I hope that you will stick around to share more...
SB and "the pup who snores loudly" 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
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