I share the pain of these posts and have been debilitated since 2012. I finally learned why so many doctors lie to our faces about these tumors not being the cause of our symptoms: GREED. I am no longer able to Ork now snd am on disability and have noticed ever since, I don't get diagnosed with ANYTHING because doctors don't want to perform the service at the Medicare agreed price if they can do it for someone whose insurance pays more, which is often twice as much. They will order loads of testing or procedures that nurses have to do, but anything really involved by a top doctor like a brain tumor in a really hard to reach area like skullbase (I have a rare neurenteric cyst which I bet isn't even that rare-it was just impossible to find out what it was until electronic records came into being. Doctors used to tell me I had a tiny benign brain tumor and would keep an eye on it. Then I was able to look up the name listed in the differential diagnosis. Then a radiologist noted it could only be a neurenteric cysts due to signaling attributes with contrast. So I read everything about NC and discovered they were called differed names and also we're rare and always should come out no matter the size due to caustic cyst contents and leakage and repeat rupturing causing chemical meningitis and eventually becoming malignant. Even the area of the brain mine is located in, the Area Postrema, is emetic and causes nausea and vomiting, which I have had bouts of all my life and related to the dizziness and now I am dizzy and nauseous all the time but unable to vomit (read why that happens and not good considering the caustic stuff getting trapped.) I was lied to by three different neurosurgeons in Milwaukee and found out about another one who had come from Philadelphia, Dr. Kassam. I was so hopeful and they ordered all kinds of MRIs and when my consultation came, in walked not him but a different surgeon who said she had no experience with neurenteric cysts and told me it could not be causing my sypmtoms because it was protected (omg-straight out LIE) And not touching anything. All lies. Would not even order a spinal tap when I said I thought it had to be leaking. Only said will do another MRI in a year to see if gets bigger (which has no relevance with a neurenteric cyst, plus an earlier mri showed brain sag from spinal fluid leak which I have since found out and they would have seen). A few months later I got a spontaneous cranial fluid leak and it was coming out my ear, nostril and a pore near eyebrow where I had terrible face rash. I called the neurosurgeons and the assistants/nurses talked and agreed NOT to tell the surgeons. Omg! That type of behavior must all come from the top and you know isn't done to those with the good insurance or paying out of pocket. They should not say they accept Medicare or lesser types of insurance that don't pay as well if they're going to lie and ruin people's lives, but we all know what greed does, and how people rationalize their actions in their minds. Or they simply don't care. So, you need to be aware of this. I am going to have to go to Mayo now and the drive will be absolutely horrific and sickening. No other choice though since they don't do insurance and you turn that in yourself. I will have to pay for whatever isn't covered by cashing out more of my retirement, which I have had to do before since becoming so disabled by this tumor in the last 6 years. It has plagued me throughout life and totally ruined many of the years while my daughters still home but luckily not small. The horrific headaches and pressure in my head and noise and limbs now numb and feel weird and pain all over and in back of neck plus heart palpitations and can't control blood pressure and all the cardiology tests when it's the brain stem, which controls breathing and blood pressure, causing all of the issues. Do your research. Report this fraud to the Joint Commission and Federal Medicare Fraud or whatever applies when you're well enough. They'll keep doing this as long as they keep getting away with torture and murder, which is exactly what this is. Mental and physical. Just horrible. My heart goes out to you all and those of you trying to help loved ones. Bless you!!!