answers about Cauda Equina Syndrome

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The information in midnightdemon is not intended to substitute for medical professional advice but is to be used only as an aid in understanding this condition. This site is not maintained by physicians. No medical decision should be made based on information in this site. A physician should always be consulted for any health problem or medical condition. This site is a compilation of CES patients’ thoughts, ideas and discussions, which we hope you will find useful, but it is not medical advice.

My doctor is an idiot at times, especially when it comes to treating CES. He thinks that because I have no back pain, I should be ok. What he doesn’t realize is the damage is in my foot/ankle and that is what is causing me the most pain.

WHAT IS CES?

The syndrome arises through nerve damage to the cauda equina, the horse’s tail of nerves that come after the spinal cord.

There is a specific pattern:

Severe pain in radicular (nerve root) pattern: back, buttocks, perineum(saddle area), genitalia, thighs, legs.


Loss of sensation: often tingling or numbness in the saddle area.


Weakness: in legs, often asymmetric (one side)


Bladder/bowel/sexual dysfunction: incontinence / retention of urine; incontinence of feces; impotence/loss of ejaculation or orgasm


Loss of reflexes: knee/ankle reflexes may be diminished, as may anal and bulbocavernosus. (a muscle of the perineum, the area between the anus and the genitals)

Any of these symptoms arising suddenly is a medical emergency and should be treated as such. These are the red flags of CES. You do not need ALL of these symptoms to have a case of CES. Any compression of the Cauda Equina nerves (shown through an MRI) IS CES!

I have had CES, Cauda Equina Syndrome, for the past 12.5 years. In the first few months it was difficult. I didn’t have supportive people in my life I could go to because there was no one I could find that knew what CES was. Recovery was slow. Painfully slow. It took almost a week till I was able to move the toes on my foot after surgery. It took almost three months to learn to walk with just a cane. Luckily the first go round did not affect my bowels or bladder. I had some retention of the bladder but this was thought to stem from my use of opioid medication. My surgery was at the L4/L5 level on the left side.

My second surgery (yes you can get CES twice) was at the L2/L3 level and it really caused me to become disabled five years later. At first my left leg was affected and still is. I still get nerve pain in my thigh at times, especially if I sit too long. My ankle/foot is another matter.

When I first got CES, I fell and sprained my left ankle while it was numb. Because I had no sensation in my foot/ankle I didn’t realize the extent of the damage until feeling came back, weeks later. Then I resprained my ankle in 2010 and again in 2011. This invariably lead to a condition known as CRPS (complex regional pain syndrome).

I have what I term CES-Lite. I didn’t have the textbook case of CES, where you lose function of your bowels and bladder, sexual function, weakness in one leg or both, loss of sensation in the saddle area, etc. I just had leg and back pain. My CES was caught within the 24-48 hour window. Anything greater than that risks permanent nerve damage.

It is possible to recover from CES. You just have to give yourself a LOT of time and perseverance. What one goes through is not going to be the same for another, even if they have had the same surgery at the same level. It is possible to walk again but you need to work hard at it. Going to a physical therapist that has had nerve damage experience is very helpful. Typical recovery time is anywhere from 9 months to two years or longer. It all depends on the circumstances the individual has faced and if the surgery itself didn’t cause more damage. This is all my opinion and I am not a medical professional. I am just writing this to inform those that come to my site looking for answers to these questions.

See my page about CES 101 to help with nerve pain and other complications from CES.

CES: Stuff we don’t talk about in normal conversation

CES Stuff we don’t talk about in normal conversation

Bowels:
Could be incontinent, constipation, or loose stool. Everything that is your worse thoughts about it can happen. I know I usually write about pain and depression but I also get a few people that have Cauda Equina Syndrome looking for information/. So I decoded tp talk about the bowels because it is the most horrifying, indignant, humiliating business that someone with CES goes through.

Because we no longer have normal nerve function of the bowel, our pooping system is a mess. We need to keep track of what we eat, what gives us the runs. Also need to keep track of when we go. Forgetting when we last went can give us huge consequences such as impaction to an all out marathon of spending the day on the can.

Most CESers are on a variety of medications that cause constipation. It sometimes can take what seems like a stick of dynamite to get things going and then when they do, all hell breaks lose. Other times we push and strain just to get a rabbit pellet out. This kills me when it happens because it feels like I am pushing a softball out of my anus and instead it’s nothing more than a tiny golf ball. Then because the stool is most likely hard, you get hit with nerve pain so bad you want to pass out or blow your brains out. Nerve pain in the rectal area is so painful you wish you never have another movement again. Sometimes this pain goes away, other times it doesn’t and you are stuck with proctalgia for days. This type of pain is different than the ball in the butt feeling. The ball in the butt is a constant sort of pain that is always there. This nerve pain is like a red hot poker going right through you, causing you to feel pain so internally like you never had before. Luckily I don’t have this pain every day or I would commit suicide. It only happens when I pass hard stools.

I do suffer from incontinence at times with loose stool. I’ve found that I cannot tolerate cottage cheese like I did. It causes the runs and I am on the toilet for the day.

Most CES sufferers try to have a bowel regimen. It involves either the use of laxatives, enemas, stool softeners, or fiber. In some cases, manual evacuation of the bowel is required because the bowel is so weak you can’t push it out. Occassionally or maybe more than not there is the danger of impaction. That usually requires a hospital visit and it can be humiliating.

Getting used to the anxiety of going is not something to take lightly. There are days I don’t leave the house because of fear of an accident. There also are times where even at home I dread going to the bathroom because I don’t know if it will be good or bad. Sometimes even while on a regimen there will be days of miscues and accidents. Finding one that actually works for a good length of time is like finding a secret formula. One day this will work, another day something else will. Everything you have taken for granted before this happened to you is lost. And there is no greater loss than crapping your pants.

Some people have found it helpful to have a poop day. It is a day that is set aside just for that reason, though you can’t always rely on that one day to go. Luckily my condition is not that severe that I require it, but it something to keep in mind to have some measure of dignity and control that we have lost.

Living with CES is hard. You need to keep track of so many thing, fluid intake, bowel output, bladder output, where your feet are at all times so you don’t trip over them. It’s crazy. It’s been a difficult twelve years living with this condition. I’ve lost my dignity more times than I can count. It’s such a shameful condition. Some people can brush it off after the hurt and even laugh about it afterwards but some people are like me, can’t, It hurts not being able to control bodily functions like you used to. It makes you want to throw caution to the wind. Mobility is another issue. If you can’t walk fast enough to the bathroom, that is the worst. Most find that they need a commode near their bedrooms for this reason.

Post CES (Cauda Equina Syndrome)

These are a few suggestion for those suffering from Cauda Equina Syndrome, post op and are recovering from cauda equina syndrome.

  1. Scotch tape on feet can help with nerve pain. For some reason it can block the signals and the vibration type of feelings.
  2. Don’t expect doctors, nurses, or any other health care professional or specialist to know about CES. They just have a vague clue or the textbook version and will not be really helpful in dealing with your suffering. Find someone who is!!
  3. Muscles spasms can be helped with magnesium supplements containing magnesium hydroxypatite, citrate, and oxide. Vitamin Shoppe (www.witaminshoppe.com) sells this version as magnesium complex for women but men can take it as well. Be careful though as too much mag can cause diarrhea.
    1. Quinine (hyland leg cramps, also found at vitamin shoppe) is useful as well as the other drugs your doc might provide. Drinking Tonic Water also can help.
  4. For bowels, senna is good. Taking too much can cause cramping as I found out much to my chargrin. This is available in multiple forms, from pills to tea.
    1. Miralax is also good as it loosens up stuff. Only downside I found when taking it daily is that is can cause watery stools. Some people have found this helpful, others not.
    2. Although the docs might prescribe fiber, it might back fire as it can cause gas with friends. Use with caution. If you are the health conscious type, veggies and bulk foods will work.
    3. Carrot juice as also been helpful for some people with constipation
  5. If you have numb feet, be careful/mindful of walking outside during hot weather as it is very easy to get burns on hot surfaces such as decks and patios. Checking the areas for blisters, scratches, or cuts is also a good habit to get into after walking on the sand on beaches to make sure you didn’t injure yourself. Consequences can be severe infection to ulcers that don’t heal.
  6. For foot or any ulcers that don’t heal, try Manuka honey. It is popular in the UK (United Kingdom) as the treatment for ulcers or wounds that do not heal to traditional treatment.
  7. Foot/leg/ankle nerve pain is common. It is characterized by burning, stabbing, shocks, jabbing, jolting pain that wakes you or prevents you from a sound sleep. Medication for this is trial and error as not everyone reacts the same. Common drugs used to treat this are:

                                                               i.      Gabapentin (neurontin), lyrica (pregablin), lamictal (lamotrigrine)

                                                             ii.      Tegretol (carbamazapine), zonagran (zonisamide), Trileptal (oxcarbazapine)

                                                            iii.      Trycyclic antidepressants such as amitryptaline, nortriptaline

                                                           iv.      Cymbalta (duloxetine)

  1. Bladder problems. Self catherization is common. Having a “bathroom bag” is important for outings and to store trips. These include a change of clothes, underwear, diapers, or other essentials to toilet care, including baby wipes (non alcohol preferred). Use of purell or other antiseptic lotions in the bags can help decrease UTI’s (urinary tract infections)
  2. Bowel problems can be reduced based on diet and a routine. Some people have found it helpful to set a day a side to use as a “bathroom day”, others use the remedies above to make sure they go, though if continent, diapers are available and can be purchased discreetly through the internet, if you are shy like me in purchasing them through Walgreens or CVS. Use of wipes are helpful as not everyone can feel they have gotten everything and helps prevent skid marks.
  3. The embarrassment of an accident cannot be underestimated. It is a loss of dignity that hurts like hell. Write to the group about it helps. Don’t keep it inside. You are not alone with this!!!
  4. Use of any omega 3, flax seed oil, evening primrose oil (for women, helps with menstruation) and other anti oxidants can help decrease inflammation. Found in various health food stores. Does take a while to build up so please be patient!
  5. Alpha liniolec acid (ALA, though not to be confused with the omega 3) can help. Some people take 600-1200 mgs. This can cause your urine to smell like asparagus but increasing water intake helps. These are found in various health food stores. Like for use of the above, does take a while to work. Please be patient!
  6. Yes it is possible to have kids after CES with the right care and that the baby and mother is ok physically. Always consult with a doctor about this, though we provide opinions we are not health care professionals.
  7. Check vitamin D level. Even if ok, should supplement. Vitamin D deficiency has been associated with chronic pain as well as other chronic immune disorders/diseases. Since I have been replenished, I have not had a bout of bronchitis/pneumonia. It takes a while, especially if you are low (<20) to build up your levels, even with prescription strength D. Supplements should be 1000 IUs or higher and taken every day until level is between 40-70 then taken every other day to avoid toxicity (>100 but this happens if taking a LOT of d (>10,000 IU/per day over a period of time). Just my opinion!!!! Most doctors do not know the full benefit of being D deficient versus non-deficient . Research this if you like but it helps to be a normal level than not in the long run!!!
  8. Get support through www.caudaequina.org. It helps knowing you are not alone.