Cauda Equina Syndrome 101 List

Cauda Equina Syndrome 101 List

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

***Material on this Website is provided for informational purposes only. It is not a substitute for medical care, rehabilitation, educational consultation, or legal consultation. This Website contains general information which may or may not apply to individuals. This Website can not and does not address each individual’s situation and needs. I encourage all persons with chronic illness, their family members and concerned parties to seek professional advice for any specific questions and concerns. I have made every effort to insure that content is accurate, correct and current and am not liable for any unintentional errors. Links to other Websites and contacts have been carefully chosen, but do not imply endorsement and I am not responsible or liable for their information and contents. Under no circumstances, shall the authors and publishers be liable under any theory of recovery for any damages arising out of or in any manner connected with the use of information, services, or documents from the site.***

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.

Scotch tape on feet can help with nerve pain. For some reason it can block the signals and the vibration type of feelings.

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. Educate them if possible. Bring in materials specific to what you are experiencing.

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.

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.

.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.

Carrot juice as also been helpful for some people with constipation

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. 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.

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)

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)

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.

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!!!

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!

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!

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.

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 (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!!!

I WOULD NOT see a chiropractor. A chiropractor is what did this to me as she tried to align my spine and ended up rupturing a disc, causing CES.

Try physical therapy. But make sure you get a good one that specializes in nerve injury. Otherwise the exercises they give you are not that great and might harm you. You might also want to make sure they work with you. Some PT’s think they are god and that their program works. Unless you do what they say, you are not trying hard enough. I have had a bought of that and it hurt me in the long run. Luckily after my second diagnosis, I found a good PT that was willing to work WITH me and not AGAINST me. The trouble with PT is that some exercises off set muscle groups and you end up hurting more.

Get support through http://www.caudaequina.org. It helps knowing you are not alone.

3 Responses to Cauda Equina Syndrome 101 List

  1. Pingback: answers about Cauda Equina Syndrome | midnightdemons7

  2. kate1975 says:

    Yes I think this is some of what I deal with, some of the time, because of a spondolitic spondelothesis. My doctor was clueless about all of my health issues, so I left him and have not found someone to replace him. Thanks for this list.

    Kate

  3. Pat Barwick says:

    I’ve been caring for my mother for the last few years and she used to get ferocious leg cramps, usually late at night. After trying everything I ended up trying Caleb Treeze which I found on Amazon. It’s mostly Apple cider vinegar. Every time she got those cramps I’d run to the fridge, shake it, grab the cup of orange juice I’d have ready, and get a tablespoon (?) of the Caleb Treeze down her with the oj right after to cut the taste. It stopped the cramps in about 30-60 seconds every single time. After several times, she completely stopped having them for over a year now! Hope this helps someone!

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