Regular relapses. "Phantom pains?"

Symptoms and Treatments
1

I am 5 years post-surgery. My recovery was very gradual the first year. But, since 2013, my good and bad days became quite distinct - and abruptly predictable!!! I have three highly functional, relatively pain-free days with high energy. But, every 4th day, ALL my symptoms return. Has this happened to anybody else?

Every 4th day, all the Chiari symptoms of paralysis, pain, confusion, spasms, clumsiness, etc… return. For 24 hours, I once more become the same ‘vegetable’ I was before decompression surgery. When the 24 hours are over, I return to normal. Energy returns. Coherance returns. I become human again!

This pattern of losing every-4th-day to returning (or - never healed in the first place?!?!?) has become so predictable, I’ve been able to map out my calendars for the past 4 years. I label these bad symptom days as “Crash” days. I have not missed ONE SINGLE CRASH DAY - the symptoms come exactly on time.
Not only do these Chiari symptoms return every 4th day, but they also return every 12th WEEK - for a whole week! I call this every-12th-week relapse as my “Wipe-Out-Week.” The symptoms during the “Wipe-Out-Week” are usually much more severe than the every-4th-day Crashes. Again, I can plot on my calendars when these “Wipe-Out-Weeks” will come - and they’ve NEVER been late. Always on time.

No one seems to know why this happens. Why are these “Crash Days” and “Wipe-Out-Weeks” so regular and predictible? My neurosurgeon couldn’t even answer that.

My guess is this: The brain stem is responsible for the body’s cycles. The brain stem knows when to wake you up - make you sleepy. For women-folk, it knew when to instigate the menstral cycle. It controls a persons ‘biorhythms,’ etc… So…! I concluded that since it is my brain stem that has been victim to the “Chiari squeeze,” somehow the brain stem’s clock has been damaged. Therefore… regularly re-occurring Chiari symptoms??? I am only guessing about this.

I wish I had a more definitive answer to the REGULAR reoccurring symptoms. All my aquaintances ask me over and over HOW and WHY I have these every-4th-day crashes without fail. I would really like a good answer to give - other than the brain stem clock response.

Does anybody else experience this same regularity of returning symptoms? Does anybody know why this is happening?

2

Hi there. It is a perplexing situation when symptoms seem to defy logic and explanation and doctors are baffled with no solutions. I hear you. I have/had symptoms, while not the same as yours (what two chiarians have exactly the same symptoms!), they share commonalities. Set time periods with predictable symptoms that do not make sense (“you know, the MRI is fine”!) yet are not psychosocial.

What I have found is that I fall into a number of categories that are producing my symptoms.

  1. the NISE Syndrome category (neurological-immunological-sympathetic-endocrinological Syndrome. Long title that basically means that my environment and diet are not compatible with my body. Symptoms that fall into this category for me are: brain fog, funny pain, not responding to physical therapy treatment, and more

what did I do? ketogenic diet for 3 month then added probiotic and prebiotics
ONLY THEN was I able to start with specific physical exercises to address my other categories

  1. Central Pain sub-classification Central Co-ordination Pain

    subjective reports are heaviness, weakness, clumsiness, poor co-ordination, one side of the body may break down, whole limb pain/pain that does not follow a pattern, can’t hear out of one ear, odd symptom patterns, variable aggravating factors, parts of the body may feel different, and more. A long list!

Basically the brain is not interpreting sensory stimuli in a manner that makes sense to the brain. The brain can transform the information into pain and other strange symptoms. Mighty is the brain!

Treatment is a series of exercises from the following categories

A) Midline (both sides of the body exist and need to cross the middle)
B) Neurodevelpment Reflexes (integrate reflexes that should no longer ne present)
C) Tactility (help your skin to feels things normally)
D) Proprioception (where are your body parts in space)
E) Oculomotor Function (are the eyes working well together)
F) Postural Reflexes (does your body have the reflexes that it should have)

  1. Neuropathic Pain (does not resolve unless the previous two categories are addressed. Many different pain descriptions - tired of typing - which do not respond to NSAIDS nor muscle relaxants. A good neurological assessment with good understanding of neurodynamic testing needed.

Treatment is correct movement pattern along nerve routes, neurodynamic exercises (Neuro-orthopedic Institute is a good educator and resource center), taping if in acute situation, and appropriate medication if called for (lyrica)

This is what I have found that is working, not a band-aid, for my own complex set of symptoms and aggravators. It was not easy to find the help and knowledge.

It is not that no one knows what is wrong with you but that you have not found the right people with the knowledge base that can fully assess you, not make guesses, and offer you the knowledge and tools to help yourself as they guide you on the treatment path!

Good luck in your quest to find answers. Treatment is out there!