@grandmar
I guess I shouldn't have said bedridden but pretty close. I basically just go back & forth to the bathroom. I only leave the house to go to Dr. appts. I can't stand long enough to cook anything or do anything and I'm having low pressure headaches (caused by the spinal fluid filling the cysts up & not leaving enough for the brain) that keep me from doing the most simple things. It's so frustrating!

I live in Northeastern WI. There are a bunch of neurologists around. I don't understand why a good one is so hard to find. Every doctor or other medical professional I've asked either tells me they have no good recommendations or have no idea. The couple good ones I found are booked out like 3-4 months!! I've been looking for a decent neurologist for quite a while. I already have a neurosurgeon. He is in Dallas, TX & he is the best. There are only several neurosurgeons in the U.S. that specialize in what I have. It's a touchy surgery. I really need the surgery done but my insurance is denying it. We are in the process of filing a grievance. Truthfully I think there are a lot more people that are called "chronic pain patients" that have the same thing.. I have multiple Tarlov cysts in my sacral area that are now pushing on the cauda equina (nerves at the bottom of the spinal cord) They also found a tehered cord which pulls on my spinal cord and makes it impossible to bend over lower than my knees and it's very hard to try to stand up straight. I can't stress enough how important it is to advocate for yourself!

@grandmar
My appointment with the neurologist was alright. He was not rude, he let me ask questions, etc. too. Everyone, including 2 different doctors and his reviews scared the crap out of me. He was nice but it was a dead end appointment. So I have nerve stuff going on in my shoulders, hands, lips, the low pressure headache, thoracic spine, hips, sacral, sciatic, tethered cord, bladder, bowels, etc. Seems very odd to me that he said it wasn't his profession (being a neurologist) and pointed me toward pain management and a neurosurgeon. I have already been turned away from the same place by neurology, neurosurgery, and orthopedics saying they couldn't do anything to help me. My PCP set it up and purposely didn't mention that I was turned away by his colleagues. I already see pain management and had to explain that the other doctors turned me away. Sounds like he was going to talk to them. He said that way I wouldn't have to go all the way to Dallas, TX for surgery. There's no way I would go to someone else that doesn't specialize in the kind of cysts that I have considering how touchy the surgery is. I don't know, I guess I'm left a bit confused about who you go see when you have nerve issues and yes, I'm being sarcastic. LOL Anyone else have any input?