I am so sorry that I have not posted for so long. A lot has happened and I'll try to get you guys caught up without writing War and Peace.
)( And I promise to get caught up on the posts I haven't read. Things went horribly wrong near the end of August.
Positive note first. I saw a Neurologist and LOVED her. I feel as if she's going to try and help me figure out what is wrong.
Here comes the horror story. I saw my Neurosurgeon, Dr Jerk, the day after the Neurologist. I had spent a great amount of time re-reading my MRI and CT reports. I have not gotten better. I have neck, shoulder, arm, hands, and fingers to add to the pain list. I want to know what the heck is wrong. If this is as good as my life will get, I want to know so I can try to accept it and move (slowly) on. I asked Dr Jerk about something I found in my reports but didn't understand. A CT report from April said I had lytic lesions on my L5 vertebra. I asked Dr Jerk about it and was told that the report did not say that. Of course, I stood my ground and said yes it does. I silently kicked myself for not bringing my copies of the reports to the appt.
Dr Jerk finally said he would go and review my reports again since they were scanned into the computers. He comes back and says it's not there. LIAR! He finally says that there is something systemically wrong with me. But that's it. He walks out without saying a word. I picked up my stuff and left in tears. Went straight to my copy of the reports and found the reference to lytic lesions in under 1 minute.
Had to see PM the next day so I made a copy to deliver to his office. The office was closed for a meeting. Came home and called them. Asked them to pull up the report and had them find the information I was asking about, show it to him, and let me know what this means.
The next day, Friday, he has the appointment setter call me to say that he is going to talk to another doctor about me and is referring me to an oncologist! WTF! Dr Jerk has not said a word to me at this point; she says somebody will call back with more info. No idea what is going on. I panic and call my primary and neurologist. They could not believe what was going on. The appointment setter calls me and says here's the name and number and that I need to be seen immediately. HUH? If this has to do with the lytic lesions, why was this ignored for 4 months and it took me bringing it to his attention? My primary and neurologist each called me twice that day to see how I was and ask what they could do. They both called me on Monday and Tuesday to check on me. Talk about good people being doctors.
My primary spoke to the oncologist office for me and the dr there called to speak with me. Ended up having a CT with contrast that Monday and then seeing her. Could be infection but probably not. Could be from surgery but probably not. Could be multiple myeloma most probable. I don't remember anything else from that appt. My best friend was with me; she got the dr to write a rx for Ativan.
Next day I receive a letter from Dr Jerk saying that I had made uneducated and irresponsible comments and decisions. Also, I had irrevocably damaged the dr patient relationship and that he would no longer participate in my care. I had no intention of seeing him again after I walked out but that letter was over the top.
Same week I did a full skeletal survey and it came back unremarkable! hooray! Did bloodwork in mid-September that came back negative! Hooray!! Oncologist spoke with my New Neurosurgeon (Dr. Powers) and a head of radiology. They all feel that I am almost certainly cancer free. Will repeat the CT in mid-November.
A biopsy would have been done; however, it was difficult to find a radiologist that felt comfortable doing one at the approach that would be required. A neurosurgeon could do it but would most likely need to remove my hardware first, biopsy the lesions, and replace the hardware. no thanks
Dr Jerk has not heard the last of my name. I guess he's never heard of a patient bill of rights. I went from fearing that I would not see my little girl start Kindergarten in the fall to being pretty confident that I will be around for a while. I thank God every day for that. I have never been so terrified in my life.
Chapter two to follow. Need to go to bed but wanted to update you guys first. >:D<