I went to a Neurootologist which is a very rare disipline and very difficult to get into. He looked at my Brain MRI for about an Hour discussing what he found and did his examination. He said "We often don't determine a cause". He refused to look at my neck because he only works on the brain. So while the neck is tied directly to the brain (Go figure) he made no attempt to explain any vertigo as a result of neck problems. Odd because the brainstem extends into the neck for practical purposes.
So while not a waste (it confirmed what 3 ENT's already said, it's not your ears). The Neurotologist said that if I didn't get better in 3 months (That was more than a year ago) to come back and repeat the tests.
I chose not to do that as not only are the tests expensive ($500 to $700) they are about the most unpleasant experience you can have. They induce the vertigo with hot and cold water in the ear (Caloric Testing) 4 times!!! Each time you are spinning so violently (If you have a problem like I do) that you wish you would just die. I've been through a lot of unpleasant procedures but that is by far the worst. I'll take the needle long before that.
I have been to 4 Neurologists.
Neurologist #1. The first had his physcians assistant do all the testing. He looked at what she did and just nodded. Then I had to ask him to test me for Benign Postional Vertigo. It tested negative. Then that was it. He wrote me a prescription for Neurontin and sent me on my way. He told me to call him if it didn't get better. I did and he would never take the call.
Neurologist #2. Had a friend drive me to this one (a 200 mile round trip for me at the time). Showed up about 2:25 for my 2:30 appointment. At 4:30 that brought me into the patients waiting room, Weighed me all that kind of stuff. At 4:45 the Doc came in and put my MRI films up on the board and started to look at them. He showed me areas of problems (I had seen my films many times but a 2nd opinion was certainly welcome). He told me to walk back to his office. It was about 4:55 at this time. Then he looked at the Clock told me that he was not going to be able to do anything else that day and to schedule another appointment. Needless to say I left and did not return.
Neurologist #3 - Too long to mention. Did a pretty through work up. Somehow concluded that I had a spinal fluid leak. Because I told him I get headaches in the suboccipital area (I do) so scheduled me for a Bloodpatch for a "suspected leak". Bloodpatch was very unpleasant and made no difference. On a return visit to talk with him he told me to go see another Neurologist that he knew and when I got done seeing him to come back. I had no confidence in this guy after that. I knew another patient of his that he never diagnosed after 7 months, but finally they guys family practice Doctor figured out what was wrong with him.
Neurologist #4 - Same old reflexes tested. Told me he would have a surgeon friend look at the MRI's. Never happened, I drove out and got my films so I could take them to a surgical consult.
I'm not a Doctor shopper. But my experience has been very poor with picking Doctors out of the Phone Book. And almost no one will see me because I don't have insurance even though I do have the ability to pay. One even told me to drive her over $300 cash before they would schedule me an appointment.
So I just sit here and suffer. Because I can not afford 20 minute $300 office visits. They just look at me and say I don't know and send me packing.
Thats the reality. I've burned through $50,000 in these "pretend" Doctors. And I haven't really worked in 3 years now. So it's not intended to be a sob story. It's intended to point out the reality of a person who does not have insurance trying to get medical care. And if you don't have insurance the rates are sky high as almost everyone jacks up your price even though you can pay. And I always pay at the time of the visit up front.
I have found a Pain Doctor I kind of trust and that's about it. But so far what he has asked me to do I've done but it has made no real difference.
That's it. I'm not stubborn I'm easy to work with but I'm also not stupid and I'm not interested in Anti Depressants they all want to push on me. I've been on many meds and none of them did anything for me but make me worse. When I am in very high levels of pain I will take a Norco. I have about 5 5mg pills left from a subscription that is a year old. I get tired of trying to fight to get a prescription filled for the only Med that brings me any relief at all. And in a months time I may or may not take a single pill. I save them for the very worst days; those days when the pain really flares up. Usually my pain is mild and burning; it's the Vertigo that is the killer.
I saw the Digital Motion Xray is just flexion and extension. And I know there is no real 3D imaging technology. But you would think that because the neck actually does move to the left and the right that it is certainly possible that the instability could be created in a plain other than up and down.
Anyways thanks Mark. I appreciate what you do. Hopefully I'll be in the box soon and this will all be moot. Until then I just keep doing what everyone else seems to be doing. Suffering through every day.
So if you could pm me a name or two of Neurologist you trust I would try and take it from there.
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