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I had a Spinal Tap

05/06/11

  04:31:38 pm, by The Dreamer   , 3581 words  
Categories: General, Appliances, Healthcare

I had a Spinal Tap

They scheduled the MRI for the afternoon of March 30th...I was already going to be late into work that day due to an appointment with my primary that morning...so I opted to just take the whole day off. While I was in my morning appointment, my primary was looking at a note from my sleep doc and mentioned that it looks like I'm going to Stanford.... News to me!

I went to sleep doc's office to inquire about it...and they said they had faxed a bunch of stuff (including the results of a January 2010 EEG, that I have never seen results for though I had asked about getting them a couple of times....but when I asked this time, I was told that I couldn't get them... had to ask the original doctor about them, which I found out was the neurologist that I'm seeing now) And, were on the assumption that they were done and it was all up to Stanford now.

I contacted Stanford, and they admitted that their referral system isn't very good...but they were then able to locate the fax and that they would be contacting my sleep doctor on next steps...specifically getting the CSF hypocretin level testing. Though Stanford said they were just agreeing with the results and didn't think there was any reason for testing. I hate that...happened when I was referred to sleep doc, first appointment he listened to me and wrote stuff down...next appointment those notes were gone and he had the referral letter from my doc and he agreed with those findings and didn't see anything further for him to do. Which is why I was kind of annoyed that I needed to get a referral to see neurologist, even though insurance didn't require one. I didn't want him to be tainted by what prior docs had written. Which is why it seemed good that when he looked at the MSLT summary, he wanted to review the data for himself....

Later I heard Stanford had tried to contact my sleep doctor, but he was on vacation.

Later I got a call from his office, they reported that I did have the HLA for Narcolepsy and that for definitive testing I needed to get a spinal tap for hypocretin testing. And, because Stanford is the only place that can do the actual work, they won't do this test for me and that I would need to contact Stanford to arrange to go there for it. After some thought I realized that they were just saying that they wouldn't do it because its not their policy to send out for testing...or something like that.

Over the years, I have encountered insurance plans that strongly prefer that all lab work done by our doctors go through LabOne. In Ohio, my doctor was part of a larger group and they preferred to do all testing in house. This was charged as an out-of-network service, so I then switched to the other provider that my employer offered...so that not only was my primary in-network, but the onsite lab was also in-network. Then I moved to Kansas...and at that time, some plans had LabOne and other plans did not. And, that was a factor in which plan I choose. Since then, the plans have changed to where all plans use LabOne. The advantage is that insurance covers 100% of the LabOne charges, while other labs are subject to the normal in or out network co-insurance. But, the office where my primary and that sleep doctor are in, they had posted that when Kansas went to all plans using LabOne (Jan 1, 2010)....they wouldn't participate in that. I wasn't too concerned, since they are covered as in-network...and I had a bad experience with LabOne back in Ohio.

Namely, I had called LabOne on where I could go, went way out of my way to get my labs done there...and then they refused to pay for it, because it wasn't a LabOne facility. They later admitted the person who had told me to go there was wrong and said they would pay....but they never did.

And, I'm told the nearest LabOne facility to me is in Topeka....

Well, heard they don't recommend you fly in and out for a spinal tap...in fact should avoid doing lots of things, like flying, for 4-5 days following a spinal tap. And, that there should be places in town that can perform the spinal tap. I tried checking google, but "Spinal Tap Manhattan, KS" mainly returned results for the other Spinal Tap....though people I spoke to weren't aware that Spinal Tap had ever performed here in Manhattan, KS. Seems everybody's search tools are getting fuzzier and fuzzier. I'd rather get 0 hits when I'm entering more and more words trying to get specific, instead of getting more and more hits and getting further and further away from what I'm looking for.

Though I wonder if its because I've turned safesearch off at home.... U-(

Though I did get some hits associating Neurologists and Spinal Taps, but it didn't identify a particular one in the area.

So, I decided that I would leave this to when I saw my Neurologist next (April 29th, 2011). I had intended to write out a list of things I wanted to ask and say for the next appointment...but between being busy and being forgetful....I never got around to writing it out anywhere.

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1 comment

Comment from: The Dreamer [Member]  

OMG, if I had known the side effects of a spinal tap were going to hurt so much….I’m not sure I would’ve continued with it, especially since I had gotten a diagnosis from a different doctor a few days before it.

05/08/11 @ 13:39
Now instead of subjecting some poor random forum to a long rambling thought, I will try to consolidate those things into this blog where they can be more easily ignored profess to be collected thoughts from my mind.

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