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.

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