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.
Saturday, January 15, 2011
I went to see my primary care doctor on Thursday for two reasons. The first reason was to bring her up to speed on what was going on with me just in case something happened to me. The second reason was because I was having a strange reaction as my pain medication was wearing off and I wanted to make sure I wasn't having a circulatory problem. When I have a really bad pain spike and I take the prescription the pain management doctor gave me (take every 8-12 hours) at about hour 6.5 after taking the medicine I begin to turn gray. At hour 7 my lips start to turn blue and my hour 7.5 my finger nail beds also start to turn blue. By hour 8 I'm in crushing pain and I take another pill. One hour after taking the pill everything is normal again.
My primary doctor assured me that my circulation was fine. If I had a circulation problem, taking a pain pill wouldn't make the problem go away. She did mention that the pain was driving my blood pressure up. I asked her if she felt that it was causing my system to shut down when I turned blue, she looked angry and said tersely, probably. She gave me a steroid injection to help the inflammation and pain in my left arm (which has helped) , two prescriptions - one to protect my stomach and the other a steroid- a request for a faxed radiologist report for my MRI and an emergency appointment for a neurologist for Wednesday, January 19. She said I need treatment of some kind immediately. She told me to go home and call my pain management doctor and tell him that she had checked me out for circulation and put me on a steroid. Then she said to tell him in detail what I told her about my lips turning blue etc. After that she said I was just to rest for the remainder of the day.
I got home, picked up the phone and called my pain doctor's office at l:56p.m. I told them exactly what my primary doctor instructed me to tell them. They took down the information and my phone number and said they would phone me back. At 2:03p.m. the doctor's office called me back and said they needed me to come in on Tuesday, January 18, with a copy of my MRI films and my pain medication. That had to be the fastest response time on record from them! Usually they take at least 4 hours to respond. They also wanted to know if it had happened more than once. I said yes, it had.
Friday, I had my MRI. They had to stick me four times in order to put the contrast dye into me. When the MRI was over, my upper body went into spasms and shakes from having been still for so long. It was horrible and I felt so out of control! Then it just stopped. I got dressed and waited for my films and drove home. By the time I stopped at the bank and got home, my husband said that I was already gray in color but I felt no pain. I felt nothing at all in fact. I ate lunch, took my pain medication (it made me turn back to my natural color again) talked on the phone, did some paper work and used the computer. My husband came in from work and took me to run two quick errands and we came back home. Five hours had passed since I had my pain medication. He told me that I didn't look so good - I was turning gray and I was cold to the touch. I decided to go to bed. That's when the pain started and my lips turned blue. I wrapped myself in blankets to get warm and tried positioning my arms to take the pressure off my cervical spine. I'd read about this on a medical web site specializing in the spine, and I lay like this for l.5 hours. I didn't know what else to do. OMG! It worked! My color came back, the pain subsided and I got warm again. I am just at a loss as to what is going on with my cervical spine. Thank goodness I read that article because it gave me some relief and I didn't have to take another pill. It will be interesting to see what the MRI says!
Saturday, January 08, 2011
My doctor acted surprised at the all of problems I told him that I've been having. He didn't even remember that I had his office call him the day after my procedure. This makes me wonder if they even called him or if they just emailed him and just said I had pain etc. I can't figure it out.
During my appointment on Thursday, I first saw the second year resident doctor who was doing his rotation for pain management. He was very thorough and asked me lots of questions; many more than even my doctor asked me either at the office visit or before my procedure. He also took copious notes which pleased me. After he left the room, I sat for at least 45 minutes and waited. I figured that my doctor probably was scrambling around in his office and reading everything in my chart - getting his "ducks in a row" so to speak. I think my doctor was avoiding me for as long as possible. There weren't that many patients when I came in but I could hear people going up and down the hall opening and closing doors. I noticed that I was put in an examining room at the end of the hall, away from all of the rest. I chuckled to myself when I saw where they put me. Did they honestly think I was going to have a screaming fit? Maybe.
After cooling my heels for 45 minutes, both the resident and my doctor came in the room. My doctor asked me a few questions and then turned his attention to the resident. They did this little Q & A thing about symptoms and diagnosis (it seemed rehearsed to me) and I sat patiently and listened until my doctor made a comment about my last MRI. He said that he saw the radiology report but that he hadn't seen the films since I hadn't brought them. I told him that I had and he said that he doubted it. I knew that was a set up, so I jumped in and corrected him on that since I had to go to a lot of trouble to get the disk containing the MRI images. I explained how I had to set up a special appointment to get the disk, right before my initial doctor's appointment with him, so I'd have it for him to look at. All he could say to that was oh. I told him how disappointed I was that he didn't even look at the disk with the MRI on it after all of the trouble I went to to get it.
Then, right in front of this resident, I repeated the same argument I gave him the first time I saw him when there was a different resident in the room. I told him that there was significant growth on a cervical bone spur near the spinal cord between 2007 and 2009 and I was advised by two neurosurgeons to watch that spur's growth. Before doing any procedure I wanted and MRI. My doctor convinced me to compromise and do two cervical epidural injections. For me, the injection has made the last three weeks a big blur of pain and I've lost much of the normal use of my left arm.
The doctor explained how the procedure went normally without any complications and nothing abnormal showed up on the fluoroscope x-ray. I made the comment that it couldn't have been too normal if the result for me was crushing pain for the last 16 days. He told me that even the worst reactions only last 3 days. My question for him was, "What is causing all of this? If you look at my blood pressure, you can see that I'm in pain. This morning it was 117/79 . It's off the charts from just driving over here." The doctor said he didn't know. I said I want an MRI and he said that would be a good idea. I need one with contrast because I have a bone fusion and he agreed with that too. He also insisted upon giving me a prescription for the pain because it is spiking my blood pressure up too high which could land me in the hospital with other problems. When the pain starts to crush, I'm not supposed to tough it out because it can be dangerous. I'm also on restricted activity. This means no workouts and only slow walking until we know what is wrong with me.
On my way out of the doctor's office, I saw one of the women working in the office putting some papers back into my chart/folder. So, I had been correct and they did make me wait while they studied my chart and compared notes. Interesting to know. I will file that little tidbit for future reference. My MRI is on Friday January 14, in the morning.
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