By Anita Crankshaw

I am a 40-year-old female, and as a child I had problems. I always had headaches, difficult in all subjects at school—particularly reading, comprehending and obtaining information. I was slow, and still am to a point. It affects my work, but I push on. Even my speed is slow. I have had back problems for many years only to find out I have nerve damage due to my second child’s birth which left me with two bulging disks. My symptoms have always been there since birth—I just didn’t know how to piece it all together.

In early winter of 2015 I was staying in West Virginia. I was on medicaid at this point. Then, one day, I went to the doctor and said something has to give. She was not about to give in and do serious tests on my head until I told her  that my grandmother on my mom’s side had an aneurysm that caused a stroke that killed her. I told her, “my head hurts that bad.”

I could only imagine what an actual aneurysm felt like, but at last my doctor agreed to do an MRI with contrast. The results came back two days later. There was no sign of an impending aneurysm—but there were three other findings: A 1.5mm pineal gland cyst, A sinus infection, and Arnold Chiari Malformation Type 1 with descending of 3-4mm.

I had a neurosurgeon and a neurologist who I visited enough to know that the cyst is usually noncancerous and can be removed, but the Chiari there is no cure for. It can only be managed by brain surgery if the symptoms reach that level of severity.

Hello

Hello

Of course surgery is a least preferred option because if the symptoms are bad enough then the brain tissue must be getting to close to the vertebras and the pressure can cause problems like hydrocephalus, syrinx, or even causing a patient to become a quadriplegic.

Now that I’m in a different state I have no medical help, no work and must fight for assistance and disability. My hometown where I am now is Statesville, North Carolina. The only advice I can provide for others is to research your disease as best as possible so you can best weigh your options. Never go to the doctor’s office knowing nothing. Always have a second opinion. If you have to have a surgery find the one who specializes in your condition. Do not give up. It can be a pain—but with my two daughters I want to get as much out of life as I can.

1 thought on “Fighting for Diagnostics: “I Begged For Them to Run the Test””

  1. Sissy-Rita Shaw says:

    I to always had problems reading and comprehending what I read, or even remembering it. I would stay after school for extra help for quiz the next day and still get a F,
    I also couldn’t due sports or ride my bike or even run for long my legs would tire out quickly and I would run out of breath and stitch in side.
    I always had problems with anxiety, runs though generations in my family.
    I sprained or broke my ankle 5-6 times, I hurt my head Minot tbi-3times except when skiing and hit a tree I did pass out then.
    In 2005 I started with severe calf pain at age 42, then numb and tingly fingers soon after, in June same year I was struck on drivers side of car while driving to work.
    Rescue left me said I would be okay to get my neck looked at. Went to ER severe whiplash- which I knew because I felt every disc pop in my neck after my head whipped front then back. I picked up my police report and saw that I started writing my daughters 1st name instead of mine and put wrong birthdate. Yet the left me?
    Obviously a concussion at the time my head felt so large and like it was filled with water? I kept touching where my head ifelt IT was but my hand was 6″ away away from my head?
    They started running tests seems I have multilevel stenisos in my neck, a fused Vertabrae in thoracic area from birth.
    And DDD in lumbar and S1 though one Mri with contrast said possible early akyling spondylosis – shiny corner sign? Anyway with all this I ended up with surgery on both feet. Deep injections in spine, trigger in mid back, MRSA from working at hospital, Emg showed abnormalities , dr said my calfs were deformed along with my feet mentioned CMT, but doctors still diagnosis end me with fibromyalgia and peri Neuripathy desease?
    I want a genetic diagnostic test so bad. I am only getting worse, not with pain but now anterior hypopituary, my Hgh is low, my Hgbnh-low igf1 last tested was 37, anemic , and a constant severe sleep disorder where I wake up throughout the night night to move don’t even know what leave me exhausted the next day. My pain went away after foot surgery and 4 yr’s after neck healed. It may be in remission. 1 day I helped move a picnic table and the shooting pain from my neck to hand was so bad, that I remembered what I previously went though and thought right there if it’s going to start again I will not stay in this world to bear it anymore it didn’t last Ast 24 hours, but it made me aware that there is a severe nerve problem and fibromyalgia isn’t the diagnosis to find the true answer ? It’s the diagnosis when they don’t know the answer. None of my doctors or past dr’s except for the one knows what CMT is, it’s sad..years are passing, and I live most of them from my bed. I tell my doctor my legs feel weak, they think I’m fine. I look fine so I should fine right?

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