surgery-faulty reports

[Guest guest]

This post it to let U all know something I found out today.

As some of U know, I met with a neurosurgeon a month ago re 's

symptoms. I am not getting any reports mailed home anymore, not even

to 's attention (she is her own guardian.) Perkins is helping me

to get them-otherwise, I would have nothing in print. The report they

were able to send home for me from the neurosurgeon was not the MRI

results, nor was it the doctor's report. Instead, it was the

doctors " casual " summation of our visit. It consisted of the minimal

findings of the eval.that we discussed at that appt.

Today, perkins arranged for me to meet with a neurologist who travels

from Childrens to Perkins 2x monthly. He had the critical reports.

1. MRI report 2. the doctor's findings.

Now, I have spent one insane month educating myself on the

conditions, symptoms,causes, post-surg. response, etc.etc.etc., and

debating-because had so few of the full range of symptoms.

It turns out, that the " doctors official report " contained CRITICAL

information, including other diagnoses, and extension of findings

that I was NEVER made aware of.

Granted, one month ago, I, myself, would not have had enough

knowledge to know the full significance of the information I saw

today. But, now being aware of the full findings-there is no question

that surgery is an absolute necessity. And furthermore, that would

have been obvious to me far earlier in my research had I been

informed. If this turns out to be a case-of the doctor informing me

of only what he thought I could handle, or some other

ridiculous " need to know " basis-I certainly can't yell at him right

b4 putting my daughters life in his hands. but somewhere here is

something that we all need to be aware of, and hopefully can guard

ourselves from so that we are not a victim of such lack of

information.

I am truly shocked-but as I think of it, I have seen the same type of

behavior from her orthopedic dr. whom I believe is a surgeon (we have

not had that type of surgery.) It was certainly true 20 years ago

that the cardiac surgeon and I had virtually no discussion-it was a

cardiologist that I sat with for my questions and explanations. but U

can believe when I say I resent the hell out of not being properly

informed.

So, (very long-sorry) I'll attempt to contact neurologist tomorrow &

ask-why was I not given this information-why was I not referred to U

for this information..we'll see what answers come up-but in the mean

time-dear friends-please take note. Peace(?)