re: Frustrated & Waiting (still)

[Guest guest]

I am feeling so frustrated and disheartened in not getting any answers from

my neurosurgeon. It's been two days now and I'm still awaiting his call

back. Serious crap is going on and I feel like the only thing I can do is

" pace the room " -- I call, my PT calls and are told the same old thing .. I

will leave directions with him to call you as soon as he can. Well that

isn't soon enough. I spoke to another receptionist this afternoon in his

office and he was of course in the OR as I expected him to be, both today

and yesterday and stated now there is fluid build up in the area around and

just below my incision above my tailbone -- I've never had this ever thus

being concerned and worried. I'm fortunate enough to have great PT -- if it

weren't for Nick I'm not sure what I'd do. PT's do not normally give out

their home or cell numbers but he's given me both. My fear is Dr. Chi (Nsg)

is going to call Monday evening and I'm going to draw a blank and forget

what my concerns were and look like an idiot. I do know I'm being much

tooooo hard on myself. I'm wondering if it is Syringomyelia -- as the NIH

states and documents onset in persons btw the age of 25-40 and how there can

be long periods of stability and then there can be relapses.

The second major form of syringomyelia occurs as a complication of trauma,

meningitis, hemorrhage, a tumor, or arachnoiditis. Here, the syrinx or cyst

develops in a segment of the spinal cord damaged by one of these conditions.

The syrinx then starts to expand. This is sometimes referred to as

noncommunicating syringomyelia. Symptoms may appear months or even years

after the initial injury, starting with pain, weakness, and sensory

impairment originating at the site of trauma.

The primary symptom of post-traumatic syringomyelia is pain, which may

spread upward from the site of injury. *Symptoms, such as pain, numbness,

weakness, and disruption in temperature sensation, may occur on one or both

sides of the body. Syringomyelia can also adversely affect sweating, sexual

function, and, later, bladder and bowel control.

*

I've always had issues with excessive sweating -- this coming on board when

I was approximately 25. I sent this information along to my PT via e-mail.

I'm just not sure why no one looked into this before. I've never had a

myelogram but had EMG a year ago this April and it did not show anything

majorly wrong and came out as my PT and Nsg expected. I called and spoke to

Nick (my PT) this evening at his house and mentioned the fluid build-up was

getting worse and spreading so he's instructed me to take a soft (sewing)

measuring tape and after marking a centralized marker on my back by the

middle of incision -- measure around my waist and keep note of the figures.

I am also going to just plain measure the size period as it's not so much

puffy (outwards) as it is fluid spreading from side to side.

I went in to see the billing person at my pain doctor's office as well as

sitting down with his nurse and Dr. Delore stated he wants to see me and

will not charge me for the next few appointments until I get things figured

out. Dr. Delore's nurse Kathy of whom I love said how have you been getting

by with so little percocet. I said I was upset and scared and did not know

how to even make alternative treatment plan with him -- so I stayed away in

shame. I see him Monday. I've been silently struggling and doing quite well

with hiding my pain. I tend to " stay away " when things get bad rather than

asking for help. It's extremely hard for me to do -- as I still feel I'm a

burden.

I'm soooo fed up and scared. My mom does not know about any of this other

than me mentioning a recap from my first initial visit to Dr. Chi (Nsg) last

November -- Chi decided on the " wait and see " approach -- and unless

anything new, progressive or drastic occured -- he supported continuing as I

have been with PT and pain management. Now things have changed. Not saying I

want more surgery .. who the hell would .. but I also do not want to see me

get to the point where-in it's too late to prevent further damage. Feeling

down and in a bad spot right now .. I went and got the teddy bear off my bed

and blanket .. made myself comfortable in my chair here put my feet up and

held him tight. It helped with anxiety some but not enough .. it's tiring

keeping this all from my parents, especially my Mom. But I'm the type of

person who likes to figure things out, have a plan and then share if need

be. But, I teeter on the subject b/c she has not been supportive in the past

-- in the end leaving me more upset and alienated. Her guilt and denial is

her's alone to one -- I have enough to deal with already. She somehow see's

it as " me competing " for who's " sicker " and said to me point blank there can

only be " one " sick person in this family. Feeling very emotional and anxious

to point of tears tonight and quite afraid .. And my pain levels are high

once again after being managable for 2 weeks or so. They're back up to 8

after being down to a 5 during the day.

I tried calling my friend on the west coast .. to talk to but she

was out. I'd call my best friend but he travels a lot and I'm not sure

where he is at the moment. and to top everything off .. yesterday was the

one year anniversary of my Gram's death, she was 91. I miss her greatly.

My psychotherapist called yesterday saying she had to cancel this Tuesday's

appointment as she was " unexpectedly " called out of town .. I only see her

2x a month and now I have to wait another week .. don't think I'm going to

be able to make it ... as this week's already been difficult enough. But,

alas there's nothing I can do as she's not here. My mom and housemate is

flying out to NOLA on Wednesday to return the following Monday. Fuck. Hate

this crap sometimes. Thank you for letting me vent.

--

Dileas, Dochas, Agus Gra,

~ With Faith, Hope & Love ~

_________________________________

“Do your little bit of good where you are; its those little bits of good put

together that overwhelm the world.”

-- Bishop Desmond Tutu

(1931- ) Nobel Prize for Peace 1984

" Ask questions from your heart and you will be answered from the heart. "

-- Omaha Nation Proverb