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Fact is Stranger than Fiction

eajosepheeajoseph Posts: 315
edited 06/11/2012 - 8:37 AM in Chronic Pain
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< :*


  • That is great to hear that you are cancer free. That must have been awefully scary, especially when your doctors act like it's no big deal. One of my CT scans mentioned fatty infiltration of the liver with sparing of the the fossa or something like that so of course i start researching and find all this stuff about liver failure and hepatitis and cirrhosis. so of course i start assuming the worst bc of all the narcotic pain meds i'm on. turns out it's just from my cholesterol being high which is hereditary for me and has something to do with my lipids. Point is, that scared the heck out of me so i can't even imagine how scary that must have been for you. and the neurosurgeon, also a Dr. Jerk, made me feel like such an idiot about it. i think that some neurosurgeons deal with stuff like that so much that they become ignorant, instead of more knowledgeable with experience, to a patient's fears and feelings.
  • I'm still pretty new to this site but really love it & all the great people. I am soooo sorry you had such a terrible experience and horrible scare. Very, very glad you do not have cancer and found doctors that are much more caring and supportive.

    I, too, have had some really awful experiences with prior doctors and learned the hard way how to stick up for myself. What would we do without the good doctors who have beating hearts? lol

    I wish you the very best and you live to see your great-grandchildren get married!
  • You have had quite a year so far but I am SO glad to hear that you are cancer free. My guess would be that Dr.Jerk is an idiot and maybe should not be practicing medicine. I had a horrible experience about 10 years ago when my husband was very sick and on life support in ICU. Long story short, the Dr that he had almost killed him! After I officially fired him from my husbands care I found out that all of the orderlys and nurses nicknamed this guy Dr. Death! The moral of the story is just because they have a degree and the title of doctor don't ever assume that they are competent. It is a real shame but we really have to be proactive in our own care and sometimes that means researching and diagnosing ourselves. Good luck and I hope that things get better for you.
  • Wow...Your Dr must have been a real piece of work. To be so mighty acting after you caught him making such a error. He needs to be reported. But, that aside, I am SO GLAD that you are ok,,no cancer.. I mean. How scared you must have been. I understand, trust me. I dont know about this tumor and Iowa City Drs cant give me a % as it is so rare. But Honey, I am so sorry I wasnt there for you. How awful. I hadnt seen you on, or anything.
    I hope that you are doing better. I want to know the rest of the story. I am here for you, night or day, girl, Just PM me anythime. Keep me informed and let me know. Love, Robin Hope this makes sense, Im tired.
  • You know what they call the guy who graduates last in class, don't you? Yep DOCTOR =)) For real I visited the site of Custer's Last Stand in 2007. It was facinating, and in the museum they had the list of his class at West Point. Yep, he graduated last! And we KNOW how that turned out. :D Tace care all.

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