I just read a few posts from people asking/begging for help, and many replies suggest getting a second opinion. Similar posts and replies seem to be made every day. I'm going to toss in my 2 cents and stress how important it is to get 2nd, 3rd, or even more opinions for any serious condition.
Getting feedback from the Spine-Health community can certainly be supportive and informative, but if you have a problem with something like surgical complications or pain or medication, and your doctor is not immediately helpful, the first thing you should think of is to go see another doctor ASAP (and if necessary, a 3rd...). That doesn't have to mean you change doctors. If nothing else, what you learn from talking to another doctor may help you work more effectively with your first doctor.
I'd also like to suggest two books to anyone going through medical/surgical dilemmas such as the ones discussed on this forum.
(1) How Doctors Think by Jerome Groopman (a physician at Harvard Medical School)
(2) YOU: The Smart Patient by Michael F. Roizen and Mehmet C. Oz (these are "the Oprah doctors;" the book is kind of hokey and somewhat unrealistic, but does have some really good info and insight)
I've recently read them and believe they are helping me in figuring out what to do for myself. I think both of these books prompt you, as the patient, to think about what you really should expect (and can demand), what you should not, and how you can best work with your doctor. Don't assume these books take it easy on the medical profession and dump all the responsibility on patients. While they certainly support the medical profession and have great things to say, and they do both encourage a lot of patient participation and pro-activeness, they are both critical of doctors and "the modern business/system" of medicine.
In How Doctors Think, Dr. Groopman describes some of his own experiences, including his own unsuccessful spinal fusion years ago that he blames more on himself (in hindsight) because he hadn't taken enough time to explore everything and had pushed for a solution, and more recently his going to 6 surgeons and getting 4 different opinions until he was convinced he had the right diagnosis and treatment plan for another problem. Even as a physician himself, he's had to deal with many of the problems we've all experienced in working with doctors toward a solution to our pain.
BTW, if anyone has other suggested reading material, I'd like to learn about it.