warning: rant

[Guest guest]

I hope no one minds that I'm putting this on the list, but there have

been a lot of posts lately about patients being dismissed and

ignored. And there are also a lot of people expressing their fear of

undergoing surgery or going to the wrong doctor. So this is my way of

addressing both issues.

As a general rule, I believe in avoiding negative people and not

wasting a second with an uneducated and patronizing doctor.

However... in the real world, we have to choose between two options:

tolerating a certain level of abuse or trying to survive without any

human contact whatsoever.

I actually went a few years without seeing a doctor. I became ill 13

years ago, and I had gone to all the specialists and had all the

tests. The only diagnosis I came away with was Chronic Fatigue Immune

Dysfunction Syndrome and no one had a treatment for that. It wasn't

until a couple of years ago that I heard about the cross-diagnosis of

CFIDS and ACM, so I decided to start the testing process all over

again.

Of course, as you know, the only thing that's tested in most doctors'

exams is our patience. I've been told countless times that I'm just

depressed and there's nothing wrong with me, but the doctor will

reluctantly refer me to someone else, or order a test, anyway, just

to humor me. And that's usually a best-case scenario.

As I wrote earlier, I went to MCV recently for a post-surgery follow-

up. I was not examined in any way. I told Dr. Young and his panel of

residents and interns that my symptoms hadn't improved and I thought

that I should have another tilt table test and MRI done. I even

defended my request by telling them that I needed post-surgery

results for my disability claim. They told me that they wanted to

refer me to a behavioral therapist, put me on Ritalin, and that I

should " snap out of it " .

Although, that was a bit disappointing, it wasn't surprising. It had

taken me over one year to get the initial consultation with Dr.

Young. I had to start at the local clinic because all referrals have

to come through them if I want the state to pay for most of the

bills. The first two neurologists recommended anti-depressants. Part

of their sales pitch for these drugs was the fact that up to 90% of

their patients were taking them. I declined and went back to the

clinic to start over with a new general practitioner. When I arrived

at the clinic, I discovered that the appointment wasn't with a new GP

after all, but with a psychologist.

The psychologist gave me a referral to see a neurosurgeon, which was

Dr. Young. And he gave me the referral to see Dr. Rosner, the expert

second opinion, which was my goal from the start. The visit with

Rosner was over $500, not including the hotel. So I finally had

confirmation that I needed the surgery, but it would take years to

get to have the sugery in N.C. Rosner's waiting list is so long, and

I'd probably have to be a resident of that state in order for his

hospital to cover any of the expenses of an elective surgery. So I

went back to MCV, still debating which surgeon to move ahead with,

but I didn't have much of a choice.

During one appointment, I mentioned to one of Young's interns that

I'd prefer Rosner because he's the better of the two in regard to the

CFIDS-ACM connection (after all, they consulted him, didn't they?).

The intern quickly corrected me. " Dr. Young is the best. " Okay...

Dr. Young has a wing named after him at the hospital, so no one

defies him. I learned that in ICU when Dr. Young was allowing me to

have only 400 milligrams of ibuprofen for pain. I was screaming for

more pain medication and I even had a living will in my chart

stating, " I want to receive as much pain medication as necessary to

ensure my comfort, even if it may hasten my death. " But Young thought

I would become addicted to anything stronger and his minions admitted

to being powerless to help me. Meanwhile, I was given an antibiotic,

which was derived from penicillin, despite the bracelet that I was

wearing that clearly stated my allergy to penicillin. I vomited up

chunks of blood and my face swelled up, etc. It was a torturous

experience all-around and in the end, I had to have my mother smuggle

me in some extra pain medication.

And the best part is that when I appealed my Social Security

rejection, the reviewer of my case looked at my hospital records, and

upon seeing how little pain medication I received, he concluded that

I must have had a smooth and quick recovery. And that the surgery was

a success. Oh, sometimes I laugh so hard...

Now, I'm still sick, I don't have a neurosurgeon, and I'm still

trying to get the post-surgery tests. I've gone back to the clinic a

few times to try to get the tests ordered. Finally, they ordered a

tilt table test 3 weeks ago, but the hospital hasn't called with an

appointment time. It turns out that the woman in charge of scheduling

my test doesn't think that I need another one because I already had a

positive tilt table test before the surgery. It seems that there

isn't a person in this state who sees a need for comparing pre- and

post-surgery test results!

At this point, I'm hoping that maybe that the judge at my disability

hearing, or one of the doctors involved with that, will see a need to

order more tests. But then they're working for the opposition, aren't

they?

So after almost 2 years, I'm back in the same place. The place I was

in 13 years ago. But I still want to encourage people to keep seeking

treatment.

Go to that condescending doctor, even if it's just to get a referral

to a better one. But don't let anyone adversely affect you. If you

know you're sick, don't let anyone tell you that you're not. If you

know that you need surgery, make them listen to you. If you think

surgery isn't right for you, don't let them talk you into it. You

have to be the authority on your condition. Most doctors aren't

willing to research how a medication will affect someone with your

disease. There is no incentive for them to go out of their way to

help you. Don't believe that all physicians have altruistic

intentions. Sometimes they're just getting kickbacks from drug

companies. This shouldn't be news to anyone here. But I've seen

people defer to the opinions of bad doctors simply because they

assume that a title guarantees superior knowledge. You will find help

along the way, but it's always ultimately your decision and your

health.

Sorry for clogging up you mailboxes.