Honestly not sure how to keep from losing it right now. Just read the referral from my PCP and the thing is full of lies - including a diagnosis of "dizziness and giddiness." Feel like I just got flung off the high speed merry-go-round!
Has anyone ever had to go up against something like this? I know I can appeal the decision from my insurance company but, how can I ever compete with the nonsense that my doctor wrote in her referral.
She basically claimed that I made up the whole thing and didn't even mention that my neurologist is on board with it. She further claimed that I want to see Dr. Heffez despite being informed that surgery is not indicated and that the visit will not result in any useful information. To top it off, she lied about my symptoms and the conversations that we have had with one another.
I'm sure there are a multitude of ethical issues in what she is doing but I don't know how I could ever prove it. I thought finding Chiari and Dr. Heffez was the beginning of a new bend in the road. Feels hopeless.
Thanks everyone for being there so I can write this. Sitting with it swimming in my head is making me feel so alone right now. I had to get it out.
don't feel bad thinking about this craziness; happens all the time. is this an hmo or ppo? remember, opinions are like a---holes, everyone has one. I bet she's an hmo pcp getting kickbacks for no referrals to costly specialty care. if heffez thinks you are chiari, then he'll have the proof to override that. also, remember, pcp stands for previously-cared for-patients, now they don't. I avoid them like the plague.
I agree with Em, just do it yourself. Get a new primary, she STINKS! My immediate reaction is to think that she is spiteful because she doesn’t understand and feels insecure. Heffez probably will never read her notes, and if he does wouldn’t give it a second thought. He understands how the community views Chiari, I asked him about in my consultation- People in med school just aren’t taught, that simple. He will look at tangible evidence: MRI, symptoms, and neurological findings. Don’t worry.
Thanks all. I am back at it again this morning and it helps to have support and perspective. I am already looking for a new PCP - you are so right that this is not acceptable! My neurologist called me personally to ask if there is anything she can do to help things along. So, at least one ally.
My guess is, the PCP does feel insecure. Imagine, an untrained civilian thinking he knows more about his body than she does with all her training. Whatever. I'm trying to shake it off and remember that I can't expect everyone out there to have my best interests in mind.
I'll keep you updated.
Oh, and no Spiderman yet. Poor misguided kid down the street is a Batman fan. At least I didn't get caught.
Also, thanks for the perspective on Dr. Heffez. At this stage, I get so stressed that some note in my record from a doctor who doesn't understand will halt my diagnosis in its tracks. Deep down, I know this isn't true. But, tell that to my lizard brain.
Also, the “giddiness” diagnosis may just be for the purpose of getting a successful referral in regards to your insurance. I see that diagnosis code come up a lot at work with brain related testing.
My daughter has Chiari and she runs into this all the time. People treat her like a drug addict, a hypochondriac, and like she's crazy. When she reads her notes her Drs have written most of what she has told them is not in them. What is there is negative. She's on long term disability and the disability insurer repeatedly asks for conformation that yes...she still does have a birth defect and yes she is still in pain every day.
Life for her is tough enough. Why do so many others have to make it SO MUCH HARDER and STRESSFULL!!!!!
I'm so sorry. For me it wasn't the PCP or neurologist who held things up, but rather a team of seven neurosurgeons where I live who believe that Chiari I malformations don't exist! Despite my cerebellar tonsils hanging right out of my skull on the MRI before their very eyes, they wouldn't operate. I remember the NS who did do my first surgery holding up the same MRI the others saw and saying "anyone who doesn't call this a Chiari is grossly mistaken. My way around the first seven NSs was to change insurance from a HMO to BCBS during open enrollment so that I would be covered out of state. One of the first seven wadded up and tossed his notes at me and clenched my arm so badly it hurt. Sounds like I'm exaggerating, I know. Three others came in the room and stood with their legs at a stance and their arms folded looking at me. I remember thinking, "It takes four grown neurosurgeons to confront a girl so sick she can't sit up without fainting?" Humerus looking back, but I was scared of them at the time. Anyway, know you're believed and not alone in having doctors oppose and belittle you. Can you change insurance companies to one that doesn't require referrals? I realize you'd need to wait until open enrollment, but that's better than never. It's what I had to do.
So many stories of doctors who belittle and negate their patients' suffering. I am glad I'm not alone because I've always felt a bit like, "what is it I'm doing wrong." At the same time, it does make me wonder about the state of our health education if it is churning out doctors who lack creativity and compassion.
You're right, Worriedmama, it is hard enough to be sick without all this to deal with. I think that without all the support I get, I'd just lie down.
Good that you can laugh now, Maggie, but I can imagine that must have been awful. One doctor is enough for me. I am planning to switch to another provider when the opportunity presents itself but that won't be until June. So, for the moment, I'm stuck with this. And, in fairness to the insurance, they have been very good about paying things. The doctor's referral kind of invited a denial.