Tuesday, July 1, 2008

Neurosurgeon appt

Today I had my neuro appt. and once again, my hope was crushed! I am so tired-of all of it. The doctor told me that my case was "too complicated" for him to handle and he referred me out to the neurosurgeons at the University of South Florida. I am so frustrated-I feel much like a "ping pong ball", being bounced from doctor to doctor! It seems everyone is interested in seeing me and reviewing my case but no one wants to do anything about it! I just keep getting passed along to the next doctor. The doctor today told me that I need a biopsy of the tumor, but that it would be difficult since they would have to go through bone to get to it. I just do not understand why we are still even talking about this tumor! I thought it was already decided what it was (a giant notochordal rest)-all the docs I have seen have said that it may not even be the source of my pain-since I have so much other "stuff" going on in the same area of my spine. I asked the doctor why we can't just "fix" all the other stuff and find out if that makes me better. He said that I need a spinal fusion and that he no longer preforms them since they only work 50% of the time (those odds seem a lot better than the odds I face with out surgery!). Anyhoo, I am back at square one-I have called USF-it doesn't look like they even take my insurance, but they are looking into it. I do not know where to go from here-I have considered calling an orthopedic surgeon that is local-even though everyone I have talked to has told me that I should only see a neurosurgeon. I have also considered calling the doctor from Washington State University, who has been kind enough to view my films and offer any help she can. She has emailed me and called me several times and she has even given me her direct cell phone #-she has done a study on Giant Notochordal Rests and has used my case at the university. Now that I have medical insurance she may be able to get the surgeons there to help me. I am just so tired-I do not feel like dealing with it at all. I just want to go to sleep-I want to give up on even trying to get help. It is emotionally draining for me to have to continue getting my hopes up, only to have them crushed again. This has been going on for 4 and 1/2 years now-I am just so tired of it. I have already been given the "trust God" speech from my Mom (I love you Mom! :) )-it is not that I do not trust God, it is just that I am tired of being in pain and waiting (hoping) to get help. Well, once again, my "realness" is showing-huh? I have always said I am "real" on this blog-the good, bad and the ugly included! Thanks for "listening". I need a nap now!

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