too much brain to contain.

We were supposed to Brooklyn this weekend, but here we are in Philly, again. I had some sort of sinus thing, maybe even a mild case of Tonsillitis, flair up this week. That cleared up, but then I started having some Chiari problems. I was diagnosed with it about 3 years ago and was in pretty bad shape for the first year. I've felt a lot better since then, but in October I started having some pretty bad autonomic nervous system issues, which my doctors ignored, as usual. When they went away in January, I shrugged it off and hoped that they wouldn't return, but this week they came back pretty bad.

I started doing some research and talking to local Chiarians on a message board. I found out that in all this time, despite growing research and growing awareness (especially the Extreme Home Makeover episode), Doctors, mainly PCP's and Neurologists are completely uninformed and uneducated about Chiari. It really saddens me that I, along with many others, have this condition and cannot receive adequate recognition, let alone even any kind of treatment, from any doctor. I'm stuck taking copious amounts of over the counter pain relief just to get through the day and sleeping pills to get through the night. If I keep that up, it will cause secondary problems. I've decided to take matters into my own hands and attempt to get real treatment for this.

I've made some friends on the Chiari message board and I've found out a few things:

1. There aren't any neurologists in Center City Philly who are competent enough to treat Chiari, even non-surgically.
2. I am exhibiting symptoms of a tethered spinal chord, which is related to Chiari. I didn't even know this existed.

It seems as though I really need to get to the Chiari Institute in Long Island ASAP for a proper consultation, especially to stop any further nerve damage, if I do in fact have a tethered spinal cord. A visit to the institute will include two days of doctors visits and testing, and will require transportation and a hotel stay. There are many problems with this:

1. I don't have out of network insurance benefits.
2. I don't have any money.
3. I don't have a job.
4. I can't work if I'm in this much pain.
   
5. I don't have a doctor who acknowledges Chiari that could even write a letter to my insurance company for me, and I will most likely need 3 letters from 3 different doctors
6. By the time I get letters and money, it might be too late. I might have irreversible nerve damage.

Thankfully, I have talked to someone on the Chiari board who saw a neurosurgeon in Bucks County who, although may not treat Chiari, at least knows about it and may be willing to write a letter on my behalf. So now, I have to see my PCP and get a referral to see this neurosurgeon, which I'm betting will not be an easy task. And if that doesn't work, I will have to switch back to my old PCP and try to get them to refer me.

Can I just say that the health care system in this country sucks without worrying about George Bush tapping my phone line? All of this bureaucracy and red tape is ridiculous. I suppose if you were wealthy, it probably wouldn't be a problem, but for the rest of us it really sucks. What kind of message does that send to the American public? You'll be well taken care of if you can afford the right treatment and to pay out of pocket, but if you can't pay up, you're screwed.

Also, can I say that medical schools need to stop churning out arrogant doctors who will not listen to their patients. I don't understand how neurosurgeons and neurologists can be so unaware of Chiari. Supposedly its rare, but 1 in every 1,000 people have it. If there are 300,000,000 Americans, that means that there an estimated 300,000 people in the US. Gee. I don't know about anyone else, but 300,000 doesn't seem that rare to me?

So here I am, sitting around on St. Patrick's Day weekend, again. But I'm ok with that. I've realized that my life doesn't center around drinking, and it hasn't for a long time. I think I grew out of that a long time ago. My friends are pretty cool in that we do a lot of stuff that doesn't involve drinking, which is funny because a lot of them are in their early twenties and I would sort of expect that from them. I think that shows a certain level of maturity.

Enough of my rambling. I hope we make it to the Furniture Show tomorrow. Mine and Matt's two year anniversary is Tuesday, and I'm hoping it won't be overshadowed by any impending doctors appointments.