Jeannine 

Review for Chiari Malformation

  • Age 35-54
  • Female
  • 130 lbs
  • 5' 7"
  • Amsterdam, NY
24
Aug2017
  • Injury Status Recovering
  • Do you have syringomyelia No
  • Chronicity 18+ Months
  • Number of Surgeries 1
  • How much did pain interfere with your day-to-day activities in the past week? All the time
  • How much did pain interfere with your enjoyment of life in the past week? Somewhat
  • What best describes your pain level on average in the past week? Discomforting
  • Doctor/Care Giver Dr Joseph Finizio
  • headaches Several times a month
  • Neck pain Often
  • difficulty swallowing All the time
  • dizziness Multiple times per day
  • Numbness and tingling All the time
  • bladder and bowel dysfunction No

Treatment Ratings

    Almost Cured
    Surgery with dural opening,
    Improved
    NSAIDs - Anti Inflammatory drugs, Massage, Rest, Meditation, Wait and See

To keep my body going I try to stretch and get as much exercise as possible. Keeping the body muscles moving will keep them from locking up. It is a constant thing for me but I stay mostly functional in life and can often hide it. (If you don't hide it people think you are whining and looking for attention. Hiding it is a must!)
If I can't exercise or stretch I will definitely have more pain and it takes a bit to get me back to my regular pain status. It's like body upkeep.
:)
Every single thing I do has required me to relearn how to do each thing again. How I walk, lift my head, breath, laugh, sleep, absolutely everything is something that is constantly on my mind. I need to only move my head certain ways. I need to pick things up differently. Things as small as a pencil or something bigger and heavy all require me to think about how I am holding my head, my arms, my hands, my back muscles, my legs, my feet, etc. If I move any of those parts a little to fast or without thinking about impact on the rest of my body, I can be in very hefty pain for days. The last time something really took me down for many days, I was looking sideways and up at the same time (something I try to never do) and then was startled while in that position. It froze up everything and took days to relax those muscles enough to function.
Some of these questions were difficult because it assumes I currently have a doctor.
After leaving a neurosurgeons office in tears I gave up on doctors and just lead life very very carefully. That was about 9 years ago and I live with constant numbness, I am dizzy about 50% of the time and have pain often. I refuse any narcotic/opiod and have had doctors not want to work with me because I refuse addictive medicines. A sign that a Neuro has zero Chiari experience is if he just throws pills at you to make you go away.
The basic story of the last (useless) Neuro visit that made me give up on my care ...
First thing was an Xray. Chiari is about lack of brain fluid flow. Not bone structure. This part of the visit annoyed me but was not important enough for me to question it. He was the doctor so I would follow.
Now for the actual reason this doctor is useless ...
In every very large medical book that claims to have every disease listed, Chiari is always the same basic paragraph. The paragraph talks about the cerebellar tonsils in the brain stem but doesn't really give any actual information. It is written like a book report a smart 3rd grader would write. There are a million of these "every disease" books in Barnes-n-Noble/Books-a-Million/etc. and they are created for worried old ladies or hypochondriacs. And with every single one of these books the Chiari entry is the same. (If it has Chiari in there.)
So I went because I was looking for vitamin and exercise suggestions. I brought a 2 page small print document of problems I was having. The list was organized by sections of the body. This was so we could discuss types of exercise.
He glanced at the papers and threw them aside.
He then leaned back in his chair trying to look like he was intelligent, experienced, knowledgeable, ... And then he repeated that same exact useless paragraph that is in those big "every disease" type of books. He envisioned himself to sound so smart and trustworthy and only came off like an uneducated jerk.
I tried directing the conversation to the main one or two issues and he tried to give me Valium. I tried asking if he had suggestions for ... He then got mad, told me I was fine but causing problems in my own head. I used the Valium Rx to wipe my tears on the way to the car.


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