CAUDA EQUINA SYNDROME.

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Potsie
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Date Joined Oct 2009
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   Posted 3/9/2010 9:22 AM (GMT -6)   
Does anybody know anything about this?

Chutz
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   Posted 3/9/2010 1:36 PM (GMT -6)   
The Cauda Equina is at the end of the spinal column where all of the remaining nerves that feed the legs, etc come out of the base of the spine. They are in a bundle in the 'caudal' area of the spine and because they have the appearance of a horses tail that's why the word 'equina' is part of it's name.

Is this an area where you have a problem? Or need more information??

Chutz
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

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(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Potsie
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Date Joined Oct 2009
Total Posts : 291
   Posted 3/9/2010 2:18 PM (GMT -6)   
Chutz, I already have Sciatica, but I've developed a new pain in my lower pelvic area. My lower back and leg pain is feeling worse. I'm also having new pains in my other leg. I googled to see what I could do for Sciatica, and was led to CES. Went to the doctor, but she thinks it's an intestinal infection. I don't think it is. I googled it and I don't have the symptoms. I'm waiting to hear back from the urine and blood tests.

Chutz
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Date Joined Jan 2005
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   Posted 3/10/2010 12:39 AM (GMT -6)   
Gosh Potsie!

I think I'd be a bit frustrated at this point. Hang on and we'll be here any time you need a should to lean on. Feel free to email me any time...OK?

Chutzie
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Potsie
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Date Joined Oct 2009
Total Posts : 291
   Posted 3/10/2010 12:50 AM (GMT -6)   
Thanks Chutz. I got my results and both my blood and urine tests came back normal. So, what do I do next? She says to finish my Cipro, then come in. We'll go from there.

mrsm123
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Date Joined Dec 2007
Total Posts : 1102
   Posted 3/10/2010 12:24 PM (GMT -6)   

Hi Potsie,

Unfortunately, I am totally familiar with Cauda Equina Syndrome and it's causes and effects on the body, but it doesn't make me an expert.

The Cauda Equina as Chutz explained are the lower lumbar and sacral nerves that exit the spinal cord from L1 down. Each pair of spinal nerves exits the spinal cord at each vertebral level. There are 26 pairs of nerves going down the spine.

The nerves in the Cauda Equina effect the low back, bladder, bowel, hips, private areas of males and females, the legs, and feet and can effect both sensory and motor nerves. You can have damage to a spinal nerve that is just sensory so that it can cause everything from mild disturbances in the things that you feel or don't feel to nasty stabbing, electrical shocks that seem to come out of nowhere and any combination that you can think of in between.

It can also cause motor disturbances - everything from twinges in the muscles from your low back to a complete failure of the nerve impulses that tell a muscle to contract or release. It depends entirely on the severity and location of the problem and what nerves it effects.

CES is a compilation of symptoms that together cause Cauda Equina Syndrome-

 Cauda Equina Syndrome Symptoms

Symptoms of cauda equina syndrome include the following:

  • Low back pain

  • Unilateral (single leg) or bilateral (both legs) sciatica (pain originating in the buttocks and traveling down the back of the thigh and legs)

  • Saddle and perineal hypoesthesia or anesthesia (numbness in the groin or area of contact if sitting on a saddle)

  • Bowel and bladder disturbances

  • Lower extremity motor weakness and loss of sensations

  • Reduced or absent lower extremity reflexes

Low back pain can be divided into local and radicular pain.

  • Local pain is generally a deep, aching pain resulting from soft tissue and vertebral body irritation.

  • Radicular pain is generally a sharp, stabbing pain resulting from compression of the nerve roots. Radicular pain projects in dermatomal distributions (along the specific areas controlled by the compressed nerve).

Urinary manifestations of cauda equina syndrome include the following:

  • Retention

  • Difficulty initiating urination

  • Decreased urethral sensation

Bowel disturbances may include the following:

  • Incontinence

  • Constipation

  • Loss of anal tone and sensation
If you think that you may have CES , then you need to be seen by a board certified spine surgeon immediately, not tomorrow, or next week but today. There is a very, very short window of opportunity to release the compression of those spinal nerves before the damage is likely permanent. And believe me, it is no fun living with the effects of a permanently damaged lower half of your body.
 Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 3/10/2010 1:29 PM (GMT -6)   
Thanks Sandi. I don't know if I have it or not. Would it cause cramping in the lower pelvic area? I feel like I'm on a real heavy period, and the pain in my leg is worse, and I'm also starting to have pains in my other leg.

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/10/2010 3:19 PM (GMT -6)   
Sandi,
Wow, what a great post. I really learned a lot about CES.

Potsie, I am not the expert on this by any means, but I would think from reading Sandi's description that it could cause cramping in the lower pelvic area. It just seems maybe it needs to be identified by a specialist who knows what he/she is doing re: CES.

I hope you can get some help with this soon.

PaLady

Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 3/10/2010 3:23 PM (GMT -6)   
Thanks PaLady.

mrsm123
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Date Joined Dec 2007
Total Posts : 1102
   Posted 3/11/2010 12:04 AM (GMT -6)   
Yes Potsie.
It can cause that type of cramping , but again, it can also be a lot of other things as well. You might want to consider seeing a spine surgeon , either ortho or neuro who knows what CES is and believe me there are a lot of them who don't know .
If you are worried about your symptoms, it is better to make sure, than it would be to wait and hope that it is not and then find out it is.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1102
   Posted 3/11/2010 12:06 AM (GMT -6)   
Thanks PA Lady,
Unfortunately, I learned about it the hard way. Not the way that I recommend anyone else learn, that's for sure. It is a rather humbling syndrome to deal with , since it can and often does result in permanent problems in areas that most of us prefer to keep doctors away from, if at all possible.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 3/11/2010 11:21 AM (GMT -6)   
Well, I went to the doctors. I got real lucky and got a doctor that has seen me in the past for my back. It's a walk-in clinic, so you don't get the same doctor every time. I told him everything's that going on, and without me asking, he prescribed some pain meds and muscle relaxers. He also gave me a referral to get an MRI. The cramping I was having has gotten better, so I didn't bring up the CES. If the cramping comes back, I'll continue to pursue it.

Thanks everybody for all the advice!

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1102
   Posted 3/11/2010 1:31 PM (GMT -6)   
Potsie,
I'm glad that you went to the doctor and saw someone. I am even happier that he knows enough to send you for an MRI to find out what may be causing the problem. I am thrilled that you are feeling a bit better.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 3/11/2010 1:39 PM (GMT -6)   
Thanks Sandi!

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1102
   Posted 3/11/2010 1:56 PM (GMT -6)   
You're quite welcome!
Hope the MRI finds nothing serious wrong. And that you are on the road to feeling a lot better.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 3/12/2010 7:23 AM (GMT -6)   
Potsie, did the doctor schedule you for a re-check visit and if so when is it? You've got my curiosity up. Keep us posted and hope you are feeling better with the meds the doc prescribed.
---Jag---
 
DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 3/12/2010 9:49 AM (GMT -6)   
bsjaguar, what do you mean about a re-check visit?

On another note, last night my leg hardly hurt at all!!

julesy
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 3/24/2010 5:43 AM (GMT -6)   
Hiya,

I have been diagnosed with CES cauda equina syndrome, I had a herniated disc 22 years ago and this syndrome has progressed so slowly I was unaware of it until I started to get constipation and urinary incontinence. Please be warned when I was diagnosed 22 years after the incident I was speaking to my GP and he just said well we knew that, (why did no one tell me) apart from the fact thet I had been trying to get disability benefits and kept been refused, this diagnosis would have made things much easier consequently I had to appeal 3 times before I got the benefit. I have paraylisis down the right buttock down to the toe, sciatic pain and aching. My feeling is that the medical fraternity are so worried about being sued for missing this devastating syndrome that they avoid telling you for as long as possible.

I have been to many different consultants I have been told I have diverticulitis, IBS, hiatus hernia, duodenal ulcer, pelvic inflammatory disease, I have been told I am a hypochondriac, and neurotic, I have been prescribed medications listed as long as your arm, treated for depression, and anxiety, mainly because no-one was listening. Consequently 14 months ago I had a sub-total colectomy removal of the large intestine due to complete failure brought about by nerve damage to the cauda equina. I had been shoved from pillar to post for 10 years before finally I went to see a urologist due to incontinence, and had urodynamics test which confirmed CES. I saw a neurologist and even he did not pinpoint it, (or was he trying to avoid doing so in case I started litigation.)

I would say to anyone with back problems and sciatica watch yourself very carefully because it is not always an acute situation, it can be very slow onset over a number of years. The worst thing I think that has happened is that although I was diagnosed with CES absolutely nothing has been done not even a referral to a specialist, well that is about to change I am paying to see someone, I do not even know whether CES continues to worsen, I have now been told that there is a pioneering treatment which invloves an implant in the spine which aids recovery of the nerves, I am only at start of investigating this I will post more info when I receive.



Onward and upward !

Jules

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1102
   Posted 3/24/2010 9:08 PM (GMT -6)   

HI Jules,

You are correct, there can be a long term form of CES that occurs over time- and also a positional form. What happens in those cases is that the lumbar nerves are compressed for such a long time but may not be a complete compression that happens suddenly due to a herniated disc, but may be because of long term severe spinal stenosis, or worsening stenosis that is moderate, a bulging disc that is compressing the entering or exiting spinal nerves on either side (lateral bulges) instead of central that cause the type of CES that you are talking about. CES, in any form is devastating for the patient. It can and is often missed by those very doctors who should know what CES is and how to diagnose it, but because it is allegedly so "rare", it is often misdiagnosed as failed back surgery syndrome" in those cases where there is damage to either the bladder, bowel or both for some of us. I fall into the later category.

My CES did allow my disability to be approved without a delay but it is not a diagnosis that I would want anyone else to have to list on those forms. It is also a spinal cord injury in the true sense of the word, since it causes sensory and motor problems, in whatever areas that the spinal nerves are damaged. In cases where you have both sensory and motor problems, it is usually because of an undiagnosed /untreated/undertreated spinal stenosis since those nerves are in different areas of the cord and there is damage to both sensory and motor conduction.

I'm sorry that you find yourself dealing with it. It is a long term problem that may worsen if not treated. In other words, if it is spinal stenosis that caused your damage, it might be best to find a board certified spinal neuro or orthopedic surgeon to get the stenosis relieved.

I wish you the best as you continue your journey in getting treatment. Mine was also diagnosed by my urologist.

Sandi


PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


julesy
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 3/25/2010 5:26 AM (GMT -6)   
Hiya Sandi,

Thx for your reply, I am very glad I found this site I have been kept in the dark about all this for years.

My stumbling block at the moment is knowing who is a reputable consultant to consult, I have seen orthos before who have at best sympathised and said get on with life or at worst dismissed my symptoms.

The difference now is that I have a diagnosis all be it years too late. I live in the Midlands UK and I am awaiting an appt with my GP in the hope I can finally get to see someone who will at least listen.

Do you know of any websites where I can find a board cert surgeon ( not sure what board cert means).

Any info you could provide would be most welcome, I hope you are managing, it is a very frightening unstable condition, are you aware of this new treatment the implant, I should be getting some info about in the next couple of weeks I will post any info I get.

I suspected that a condition like this would deteriorate and I can only hope now that I can find someone to help.

I found a good site caudaequina.org it is a support group, very informative.

I wish you all the very best,

Regards
Jules

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1102
   Posted 3/25/2010 7:50 AM (GMT -6)   
Good morning Jules,
Did you ask about surgeons or consultants in the CES group? I also am a member there and I know that we have tons of members from the UK and the posters will recommend a doctor or not recommend one if someone has had a bad experience with one. Ask around there and someone will pipe up with some recommendations about finding a doctor.
As far as the implant that you are talking about, I've read about it here in the US and so far it has had mixed reviews. There aren't any long term studies about the outcomes yet because it is a new medical device. I believe what you are talking about is the X stop implant, correct?
The traditional treatment is a laminectomy to open up the spinal canal to relieve compression of the nerves if it is a central or cord impingement or a foramenotomy or ectomy if it is the nerve canals.
Treatment really depends on exactly where in the spinal canal the impingement of the nerves is located.
I manage as well as I can. There really isn't any other option, other than to give up and I am just too darn stubborn for that......LOL
Board certified means that the surgeon, whether he is a neurosurgeon or an orthopedic surgeon means that they have taken specialized courses and worked along side other board certified spine surgeons- they specialize in treating conditions of the spine- not knees, shoulders, elbows, etc.......you don't want a general neurosurgeon or a general orthopedic surgeon messing around near your spine. You want one who solely works on spines and has taken the extra training and passed the review boards to become certified in spine surgery.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


julesy
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 3/25/2010 11:39 AM (GMT -6)   
Hi Sandi,

Thanks for that, I will certainly get onto joining the CES group it sounds like an oasis in a desert of info about CES.

I find it very strange that doctors over here seem to regard CES as something never to speak about unyet it is the elephant in the room.

This implant I have heard about is set just beneath the skin and sends electrical impulses through the damaged nerves, which can, I understand bring back some feeling. At the moment I do not even know what it is called, I should be speaking to someone shortly who has had this implant and I will give you some feedback as soon as I find out more.

There seems to be an awful lot of CES patients considering I could not get anyone in the medical profession to even mention it.

Cheers
Jules



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