Hi Chloe5080
Sorry you're in so much pain, with no definite answers. In your post you said you've seen 3 Neurosurgeons. If I may ask why a Neurosurgeon? Who directed you, or referred you to them?
I'm asking out of curiosity. You definitely have nerve issues going on. Have you ever sustained any injuries? Do you notice other areas starting to be effected by neurological pain? Or having it in other extremities?
I've lived in horrible pain for 20+ years. In the beginning, before I had any diagnosis I went through hell getting good Drs. When I say "good Dr." I'm talking about a Dr., who really cares about you. One thing I have learned in this painful journey, since early 1990's, through a lot of years of pain, experience, treatment, procedures. And a favorite Dr., of mine, that I've seen for years told me, when I asked for his advice, when in the same month I fired my rheumatologist, as well as my Neurologist, who was "known for being so great!" NOT!
I was so frustrated and so many years of treatment, testing, etc., I really didn't have the energy left to pick a Dr. Too fearful of the same thing. I asked my PCP/Pulmonary specialist, who and how do I choose one, that I know will be good, that will be right? He told me to pick the youngest, Dr. I could find, that specialized in that field, who still had room to grow with his/her patients. That you knew you could get appointments with easily. That weren't, too busy yet, to put you through, like you were going through a factory. I had a good laugh, with him that day about his advice. I thought about it a while and after a few months proceeded to find some new Dr.s.
I knew this was not going to be easy, as I have a long medical history. Tons of medical records. Well, I was surprised. These Dr.s have turned out to be the best Dr.s I could have ever picked. They were God sent. He really wasn't joking, when he gave me that one piece of advice I tell you something else. They don't have that know it all, God syndrome yet, most are really brilliant and up to date on the latest of Medical diagnosis, treatments, diseases that some of the older Drs know nothing of. And normally they have the time, to take the time, to listen to you. Don't get me wrong, I'm not putting down on older Dr.s. In fact one of my Drs. retired and a young Dr. took over his practice. I just knew I was not going to like this Dr. and he was going to mess, with medications and treatments, that it took years to get right.
I was wrong. I've now been seeing him for almost 4 yrs. he's been practicing and he's brilliant. I could not have chose a better Dr. and friend.
I now have MS. I take IV Infusions @28 days for that. As if I didn't already have enough going on!
I can sense your frustration, in your post. I was there years ago.
I hope you get some better answers soon.