What a difference a week makes....

Last weekend I was on cloud 9, knowing I had found my Doc. I should have expected the roller coaster that has the name Chiari would go down at some point :-( Uneasy quite a bit last week, for reasons I am not sure are valid or not but it's MY brain, my health so I am not sure I have to have reasons.

I was told by the Doc's office when I left Cleveland to fill out this stuff online, a survey type asking all these questions regarding my health. This is what they use to "map out" what tests need to be done before surgery. I blanked out on how long it takes from that point to get a surgery date. Maybe it's just me but between me and my 6 kids - I have scheduled MANY surgeries, I have never had to wait to schedule a surgery - this whole concept is just foreign to me. So Monday I call the Doc's office to see how long it takes to get it scheduled. Simple question really. They took a message and assured me this is how it's done.

Wednesday I spoke with a woman on facebook who also went to see Dr. Di for her daughter - she left with a surgery date. Same Doc, same procedure. It just wasn't sitting right that 1) they STILL hadn't called me back and 2)why would office procedures be different for two patients? So Thursday I call back and they were - well, annoyed with me.

She kept bringing up the fact that I had called on Monday. Yup, I did and I am stalking you at this point because - well, you haven't called back and it's now Thursday. In my head I am wondering - what if this were post surgery and I had a question? I explain that I am not trying to be a pest, I just want to know how long I have to wait to know my surgery date. I carry my phone everywhere, I don't want to miss that call. I have anxiety - is it Chiari or just me? Not sure but it doesn't matter. What I am asking for isn't unreasonable. Just keep me informed on how this works, simple. She assures me this is the process and someone will call me back by the end of the day. Despite the fact that this clearly isn't always the process since I have spoke to another patient of theirs, I am not asking to deviate from protocol -I am simply asking how long does it take to have someone call me with the date? Weeks, days, a month? It is now Monday and guess what? Nobody called me on Thursday - or even on Friday for that matter.

Initially I thought I wanted 4 opinions - "experts" in PA, OH and WI and a somewhat (so I hear) experienced but not labeled expert in MI. I had them ranked in my head, knowing it may change once I hear what they have to say. The WI Doc's office was 1rst or 2nd on my list, until they wouldn't return my calls once they got my MRI's. The office had assured me it took only days for that Doc to review films and decide if I was a surgical candidate and they would call me either way. I called twice (weeks apart), never got a call back either way so I crossed them off my list without even going. When dealing with major surgery, states away - the phone is all I have post-surgery. I live in a small town with a crappy E.R. If something goes wrong - is this how they handle it? Ignore you? If so, going to my local hospital isn't a good option since they wouldn't even know what to do with me.

Maybe I expect too much but when I am looking at throwing $100,00 at a Doc, who I am trusting with my life - I expect a call back when they say they will call back. Perfect example - about a year ago I was having ear pain again (major surgery 13 years ago to remove a non-cancerous tumor). I saw an ENT who said I needed another major surgery, there was a hole in my eardrum. I cried. I scheduled the surgery and a few days later called the office with a simple question about an antibiotic. The woman I spoke with was rude and accused me of drug seeking when I wasn't even discussing pain, only the antibiotic. I sought another opinion (at U of M ironically) and was diagnosed with TMD and told to stop chewing gum. My pain left. There was never a hole and I never needed surgery! Was it God steering me? I have to wonder at this point.

So, here I sit, wondering if God is steering me away from Cleveland. The U of M Doc was last on my list. I never canceled my appointment though, for some reason, even when I just "knew" that the Cleveland Doc would do my surgery. My appointment is this afternoon with the U of M Doc.

More irony, I spoke to an old friend I haven't talked to in months on Friday and her daughter's best friend has Chiari and had the U of M Doc do her surgery a few years ago. She was thrilled with him. Hmmmm - makes ya wonder.

Of course I try to filter everything through my fears. Maybe I won't 100% trust any Doc because I really don't want brain surgery. I want to be symptom free so I SAY I want the surgery but the reality is - I don't want to have Chiari. Maybe I am just scared? Maybe I expect too much? Or maybe God is steering once again? We shall see.......