Arnold Chiari malformation

[Guest guest]

Hi all!

This is all new to me and I joined this group today in

hopes of gaining light, clarity, and way to move

forward in my healing and my life.

Several years ago I saw a doctor because I was having

horrible headaches and pressure in my head that was

not going away and seemed to be getting worse. The

headaches were Always on the same side of my head and

in the same spot. They were quite debilitating and all

of the discomfort has made it hard for me to hold down

regular and consistent jobs. That doctor did a scan

and told me I had an Alnorld Chiari malformation that

probably had been there since birth. He then told me

to read about it online and provided nothing more for

me than that.

Last year, I was in 3 pretty bad car accidents. Since

then, my health has been majorly declining. I'm

getting more headaches, I'm having coordination

problems (there are times when it's hard to move my

fingers or pick up change - I drop things alot),

numbness issues in my arms, constant pain the back of

my neck, my head feels full of pressure and heavy

(sometimes like I can barely hold it up), sleeping

issues, trouble focusing, irritability, my throat

feels like it's closing tight (it's hard to swallow),

burning sensations in my shoulders, neck, stabbing

pains under my scapula, my tongue feels swollen,

constant headaches, and sometimes when I stand up from

I get light headed for a moment and feel like I'm

going to pass out; there's probably more too that I'm

forgetting right now.

After the accidents, I was put on temporary disability

and lost all access to my insurance benefits. This

last month my temporary disability ran out. I'm

without income, without a job, without insurance. The

doctor that I have been seeing on a lien, feels that

the Arnold Chiari malformation was aggravated or

worsened in the accidents. He wants me to get a neuro

psych work up - however it's going to cost and I don't

have the money to cover it. He gave me over to Binder

and Binder (social security disability attorneys) to

file for permanent disability recently - which I

learned will take a year and a half to go through -

that is also dependent on the findings of this latest

doctor being enough to make me qualify.

However, my concern is my health. I'm having a hard

time finding people that can help me and life seems to

be getting harder and harder to manage. I'm now

without income, without benefits, and with a declining

health problem that I'm not sure how to work with or

really don't know that much about. I don't even know

if I've been diagnosed accurately or just fallen

through the cracks becuase of my lack of inability to

pay.

I feel supportless. Which is what brought me here. I

don't know what to do, who to go to, or how to get any

help and I'm getting scared. My ordinary life is

getting hard to maintain. It takes everything in me

to do the basics and I've had to alter my life so much

up to this point. Anyway - I'm hoping that by way of

being part of this group, I will get some answers and

possibly a new hope or a vision for a direction and

what to do to get the help I need.

Thank you for lending your eyes....

Take care!

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