A New member...

[Guest guest]

My name is Jackie and I was invited here a few weeks ago by Sally. I

have a CM1, subarachnoid cyst, hydro, three bulging cervical discs,

and hypolordosis, among other unrelated (?) conditions. I had a

craniotomy and cyst decompression surgery in May '02, which was not

successful. Then I had a low-pressure shunt implanted (in the cyst)

in Oct '02, then a revision for a programmable shunt on Dec '02.

Needless to say, I continue to suffer with chronic pain and fatigue

in my neck, shoulders, and head.

My heart aches for everyone here. I know what you are going through.

So very few medical professionals understand our condition(s). I've

experienced the gamut of professionals, from one neurosurgeon making

a joke about my cyst leaking through my skull, to countless drs

telling me I should not be experiencing any pain ... there's nothing

wrong with me.

I want to share with you all a memory of a classmate of mine when I

was in high school back in the very early 70's. I believe her name

was Diane. She was very pretty, studious, and kept to herself. No one

really knew her well. She had a very large head. She had

hydrocephalus. This was just before the shunt became available. I

cannot imagine how that poor girl suffered. She seemed so sweet. I

never saw her after 10th grade.

Today we have available to us a crappy deck of cards, but at least we

have something to work with. Diane didn't have any options. We do.

Opportunities may be few and far between, but at least we have them

and we can touch them; we can pull an Ace out of the deck every now

and then. I thank God for that.

It's a most difficult decision to come to when we realize that we may

have to undergo further surgery, and I believe the time may have come

for me to consider this. Medication, physical therapy, acupuncture,

meditation, prayer, reiki, mind over matter .... the list goes on ...

all of which I have tried. Masking the pain with drugs has been the

only solution so far, and it is a weak one.

I contacted TCI a couple of years ago via e-mail and, of course, they

advised that I come to see them. I also recently wrote to Dr. Rosner

via e-mail and received the same response. As nauseous as my belly is

right now, I feel moved to see Dr. Rosner in NC.

If anyone can give me insight, input, anything about Dr. Rosner,

insurance matters, anything at all, I would really appreciate it. I

feel completely blind right now about the potential visit.

Again, I appreciate everyone here ... very much. I know how difficult

this journey can be and my hearts swells with compassion for you all.

Keep looking for those Aces!

God is with us and All is well.

Jackie