Hurray and WOW

I got my book today. Conquer Chiari. The first thing I did was to flip to the section - Living with Chiari. And what do you think is the first section in it?? PAIN. I thought it was just a fluke that I was having this arm pain but apparently it is very common for patients with Chiari. I figured that after the decompression, I was back to "normal" and was having pain separate from that. Now, 15 years later, I find out that is not the case. According to Rick Labuda, the author of the book, "surveys have shown that pain is the single most common, and likely most difficult problem CM/SM patients face after surgery. It is likely that many reading this right now may be experiencing some type of pain, be it a burning pain for no reason, or painful muscle spasms in the neck and shoulders. For many in the Chiari community, pain is a way of life." That opened my eyes to the fact that there is a lot more to Chiari than I knew. And a lot more that other people need to know as well. I understand why my first PCP told me that it was "my cross to bear". He didn't know any better. It even says that since pain involves perception, there is no way to know how much pain a person is feeling other than how they describe it. Let me tell you. It is almost impossible to describe the pain. You would think that after years of being asked over and over, I would be able to do it. But a couple of weeks ago when the Neurosurgeon asked, I still couldn't. The closest I have ever been able to come is this... It starts at the top of my shoulder/bottom of my neck and throb/burn/shoots through the shoulder, elbow and down to the thumb. It is especially painful in the elbow, wrist and thumb, as well as the shoulder and neck. Periodically I will have shooting pains across the base of my scull/back of the head (on the right side only). Now, take that pain and have it intensify about every 15 to 20 seconds with exceptionally painful periods about once every 5 to 10 minutes. Try to cover up the pain by "grinning and bearing it" so you look like a normal person and people don't look at you like you are crazy.
I have been getting killer heartburn since I started taking the Percocet so the Pain doc perscribed Dilaudid which, apparently, is some serious stuff. I guess it would be, considering it's generic name is Hydromorphone.
That is enough for tonight. I am hoping to get some reading done and will be able to let you know more about it all tomorrow.
Thank you for taking the time to read my story.