Wednesday, January 26, 2011
By my calculations, either today or tomorrow, I should hear something from the Mayo Clinic regarding whether or not they will see me for surgery. Perhaps they won't see it as urgently as I do and will take their time calling me back, I don't know. I will only give them until this afternoon/tomorow morning and then I'll call them and ask. I've got to be proactive and my own advocate. There is a fine line between being a pain in the neck and being an advocate for yourself. I'm even willing to be seen as a royal pain in the neck at this point. My condition, pain and anxiety allows me this luxury.
Monday, January 24, 2011
Today, I devoted to bringing my migraine/chronic pain management doctor up to speed on what has been going on with me over the last month. (A doctor who was doing a fellowship with her department was the person who sent me to the acute pain management doctor who gave me the epidural in my neck without doing the MRI first.) I didn't actually speak directly to her because she was seeing patients but I did have a long talk with one of the nurses there who knows me. He took notes and asked me to fax him a copy of my MRI report because he was going to sit down with the doctor during lunch and discuss my issues with her. He promised that he would call me back this afternoon and tell me what she said and try to answer my questions if possible. That sounded very reasonable to me, so I faxed the report, got a few things at the grocery store and came home.
True to his word, around 3:15p.m. he called me back. He and my doctor reviewed everything I had told him about the procedure that I had on December 21 and my reaction to it and my current condition. She reviewed my MRI report and agreed that I should move my chronic pain management treatment away from her (due to the distance) to an acute pain management treatment closer to where I live. This was due to the fact that I have difficulty driving long distances now and I need stronger pain medications than she likes to prescribe. (She would rather fix the problem than put a band aid on it. I agree but I'm currently in a holding pattern here with loads of pain.)
The nurse said that my doctor feels that I definitely need surgery. If the Mayo Clinic doesn't work out for me, I need to either get my primary care doctor or my new pain management doctor to refer me somewhere else for surgery. The nurse told me to come up with a plan B just in case, so that I'll get the surgery that I need. The nurse made that very clear. This is the third doctor to look at my MRI report and tell me that I need surgery. The first two doctors also looked at the MRI films and said that they saw other things on them that the radiologist didn't put in the report. I know from the way that I feel, that this is something that won't go away by itself and hearing the doctors say it validated those feelings. Now I know I'm not crazy.
What was good about today was that when I was making telephone calls, I felt like I was taking back some element of control over my life. I now have an appointment set up with a new acute pain management doctor for February, I still have support from my migraine staff (even though they now think I might not have migraines once I have surgery) and I didn't feel like I was twiddling my fingers as I wait to hear from the Mayo Clinic. All in all, a successful day.
Saturday, January 22, 2011
Wednesday, after being vertical, either by sitting or standing for 5-6 hours I had a strange thing happen. I started to lean way to the left and I was tripping over my feet. This really scared me as well as my husband and I went to bed immediately. Thursday, when I woke up, I continued to lean slightly to the left.
I called my primary care doctor's office to bring her up to speed on Thursday and to enlist her help with my issue about pain management and finding a phone number to call the Mayo clinic. I also mentioned the issue about leaning that I'd had the night before. I told the nurse that there was no rush to call me back because everything was under control for now. Thursday evening around 6p.m. I got a call from my primary's nurse telling me that I needed to go to urgent care and get myself checked out. She also gave me the information for my other two issues.
Friday morning I went to urgent care. I was still leaning a little to the left. The doctor initially had a bit of an attitude and couldn't understand why my neurologist wasn't called instead of my primary, why I had waited so long to come in and why I had so much information with me when I came into urgent care. She ordered blood work and a CAT scan to check me for a stroke and blood abnormalities. They were all negative. I was so relieved! I think she was relieved too because she was a lot nicer when I sat down with her and went over the results. The whole thing was scary business. I told her that I had been referred to the Mayo clinic in Jacksonville and that I was becoming very scared. She told me to go home and call them immediately and get the ball rolling to find out what was going on with my cervical spine.
When I got home from urgent care on Friday, I called the Mayo Clinic. They had not received any referral yet from my neurologist. They took down all of my information. I also had to fax them a copy of the radiology report for my latest MRI. Once they get that faxed report, the neurosurgery department will review my report and the Mayo Clinic will contact me and let me know if they will agree to see me. If they do, they will set up an appointment with me. I am anxiously waiting to hear what they say. I'm praying that they can help me. I know even with insurance it may be expensive but it is a treatment that I feel that I most likely need to have in order to have any quality of life.
Wednesday, January 19, 2011
Yesterday my sister went with me to my pain management doctor's appointment. We took the films from my MRI along with my pain medication. When it was finally my turn to be seen, the nurse practitioner came in the room and started talking to me. The doctor was in surgery downstairs. The more I talked, the more alarmed she became. I handed her the MRI films and I asked her if I could possibly have copies of the radiology report. She started to read over the report and she told me that there were many reasons that I was experiencing so much pain. So I decided to ask her some questions about the effect that the injection might have had on the condition of my spine, knowing full well that she wasn't qualified to answer my question. She asked me to hold on a minute and disappeared from the room.
The next thing we knew, my doctor appeared in the room in surgical scrubs along with the same nurse. He wanted to take a look at the MRI films himself and read the radiologist report. Apparently he put his next procedure on hold downstairs in order to come up to see me. His facial expression was fairly surprised at the condition of my cervical spine. I looked him straight in the eye and started asking questions about whether or not I would regain the normal use of my left arm. He hedged and wouldn't give me an answer. He gave me three options for pain treatment but not for necessarily fixing my problem. First, living off of pain medication - not an option for me. Second, having more injection procedures - not an option for me. Third, finding a neurosurgeon to fix my spine surgically. He asked to see my pain medication bottle; which I handed to him. He asked me a bunch a questions about it - wasn't sure it was prescribed by him - and seemed surprised at the "take every 8-12 hours" directions. He said that needed to be take every 6 hours. (I'm thinking to myself, "You're an idiot!") Then he wanted to tell me about another procedure he could possibly do on me. I told him that he was never going to touch me again. He suggested a referral to neurosurgery and I said USF and he wrote me a referral. At the front desk they said ,"You didn't want to set up another appointment did you? You can just call us when you need us, okay?" I'm thinking, like never!!!
Today, Wednesday, hubby and I took the MRI results and radiology report to a neurologist to see what he had to say. This doctor actually listened to everything I said and read the little computer print out with my personal information that I attach to all the forms that I fill out at a consultation.
He said that the turning gray, the blue lips/finger nails were most likely from a spinal compression that wasn't caught by the MRI. (Perhaps positional?) He thought pain medication and injections would do nothing to fix the problem. He had only two recommendations. First, he recommended traction. I have tried manipulation/traction of the neck by a physical therapist which was ineffective.
Second, he recommended surgery. We asked him if this would give me back use of my left arm and he said most likely. Of course, in case he was wrong, he couldn't say a simple yes. That was kind of depressing. But, in way, he did give me hope. He said that I need a very specific kind of specialist and I will need to go to the Mayo Clinic in Jacksonville to seek out treatment.
Hubby and I discussed the options and decided to go with the Mayo Clinic in Jacksonville. We anxiously await hearing from them in the near future.
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