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Thank Goodness For Support

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!

  Member Comments About This Blog Post:

L*I*T*A* 1/15/2011 9:28PM

    keeping you in my thoughts and prayers....
wish i could wiggle my nose to help you find your answers....
hang in there....
blessings and hugs........lita

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AMANDAJCD 1/15/2011 8:33PM

    Wow Cyndi -- thank goodness you stay so well-informed! And your primary care doctor sounds awesome (not so much the pain management folks). Please, keep us posted. You're in our thoughts.

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SLENDERELLA61 1/15/2011 8:04PM

    Oh, Cyndi. You are really smart to read as much as you can and try to find relief for yourself.- So sorry you are going through all this. Hope the MRI pinpoints the cause and that you get the treatment you need. Hang in there!

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HEALTHY4ME 1/15/2011 8:02PM

    OMG that is scary, I work in nursing and to turn blue and grey OMG that is not good as you know. but yea maybe something is pressing on a nerve or whatever to make you lose circulation like that. I am intetested to know your story. I hope you get some answers asap and if you don't get warm or get your colour back please go to emerg.
HUGS and wow you are strong!!!!

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WILD4STARS 1/15/2011 7:59PM

    OMG ~ I would have been terrified. Prayers that someone finds and fixes whatever needs to be fixed. SOON!!

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TURTLEKIDS 1/15/2011 4:37PM

    Hang in there. I would be begging to be hospitalized if it was me. You poor dear. Praying you get some answers and relief soon.



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AQUAGIRL08 1/15/2011 3:29PM

    My pain tolerance is really high for chronic pain. The problem is that it's too high and that is dangerous. My pain management doctor just isn't getting it which is why I have the neurologist appointment already set up. Thanks for your support!

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DONNABRIGHT 1/15/2011 1:35PM

    Oh my gosh, I feel like you must be one of the bravest people in the world not to be running to the emergency room. Your pain tolerance has to be really high. I ppray you get some answers and some relief this week.

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My MRI Is Next Friday

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.

  Member Comments About This Blog Post:

EILEENV3 1/11/2011 1:24PM

    So glad you'll get your MRI. As a patient, you are SO right to stand up for yourself.

I agree with the others re looking into a different doctor.

Good luck & hope the pain level will subside. emoticon

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SLENDERELLA61 1/10/2011 8:32PM

    Oh, Cyndi! It certainly should be simpler. So hope that MRI you have endured so much to get is helpful. And even more than that, I hope your pain ends. -Marsha

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SANDIEMAC1 1/9/2011 4:34PM

    wow! even my neurosurgeon (AKA dr prada for his shoes) isn't THAT bad.....although they did check me in and forget i was in the waiting room for over 2 hours....i guess it's easy to do that in a place the size of USF? although mine also acts totally clueless when i tell him that my back (L4-L5 and L5-S1) hurt MORE after he inserted his buttload of titanium than it did before he re-arranged it all. i'm at a loss...i worked in a fairly urban (tampa) ER and the staff seemed to be more up on complete strangers than these guys are on ESTABLISHED paitents....

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TGEVING1 1/9/2011 12:24PM

    Holly crap! Yeah I would suggest that you find another doctor. Its obvious to me that he doesn't care about his patients. His resident has more concern for you then your doctor. emoticon

At least your scheduled for an MRI appointment. emoticon


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  Seriously, you need to find a new doc. Maybe he's just not very smart (Every class has someone who graduates at the bottom of their class) or worse, maybe he just doesn't care (too busy to even think of his patients as people or has no capacity for compassion) but in any case that is one scary guy. Most patients don't know how to stand up for themselves and he obviously isn't used to someone not passively trusting him thus the game playing instead of being honest right up front with you. When I think that he has might have your life in his hands makes me say run, don't walk, run to find another doc! You deserve a better one and they're out there. emoticonGood luck with your MRI. I'll send some good vibes your way. emoticon

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DONNABRIGHT 1/9/2011 9:47AM

    My gosh, is it time to move on to some new doctors???????

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SLIMMERJESSE 1/8/2011 9:24PM

    You are so right to keep on top of these docs. My friend who is an 8 year terminal illness survior carries a file full of her medical papers and has often had to correct docs who either forgot the correct meds or did not know what to do. She is alive by her own savvy, truly. I hope you continue to be fearless about speaking up. Good for you.

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L*I*T*A* 1/8/2011 9:22PM

    well the main thing is you are going for an mri this coming week!!!
wow that was a quick appointment too...........
prayers answered...
blessings and hugs....lita

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Two Weeks After My Injection

Wednesday, January 05, 2011

Here it is, two weeks after my injection and I'm still having problems. Instead of helping me the injection created issues for me. Pain and more pain created by the shot plus now I have to limit how much I use my left arm. My migraines came back with a vengeance and many of the therapies that I spent two weeks in November learning, I can't do because of the limited motion due to the electrical shocks that I'm experiencing daily. On a positive note, the severe muscles spasms that I was having 24/7 in my right arm (after the shot) suddenly slowed down yesterday. That was a welcome relief! I couldn't feel any pain from them, they just made my arm and hand shake. They were more annoying than anything.

Tomorrow is the day that I have my appointment with the doctor who gave me the injection. I need for him to understand just what this injection has done to me. He needs to understand the amount of pain I've had to endure because of the injection and just what effect it has had on my body. I need to know if any of what I'm still experiencing is permanent. I need an MRI and an expert who can guide me. The whole way I was treated by the surgical center staff and by this doctor's staff has destroyed my trust in him. I don't think this doctor is the person who is the expert I want to guide me, yet I'm going to have to rely on him to give me a referral for an MRI.

When I go tomorrow, I will not verbally attack the doctor. I will try to work with him. I want to find out why all of this happened. If I am antagonistic, I will shut down the lines of communication and I'll never find out what went wrong. My focus must be on gathering information in order to get better, not on pointing a finger and making accusations. I need medical attention, that much is obvious. I need an MRI and if I have to be nice to the doctor to get one, I'm going to be nice.

  Member Comments About This Blog Post:

DONNABRIGHT 1/9/2011 9:49AM

    You have the patience of a saint - good luck on that appointment.

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L*I*T*A* 1/5/2011 8:17PM

    hoping and praying all works out for you....
blessings and hugs.............lita

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SLENDERELLA61 1/5/2011 6:50PM

    You are very wise to keep your goal of getting well as the top priority. So sorry you've been through all this. It would be very normal to be very angry at a doctor who cause you such great pain. Your plan to get your MRI and then seek the right person to guide you sounds good. So hope it works out for you. Please take care. Be extra good and kind to yourself. You deserve it. -Marsha

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SLIMMERJESSE 1/5/2011 4:21PM

    I'm not a litigious person, but if this escalates, you may want to find an attorney on contingency. I have had a situation in the past that nearly killed me (literally). I didn't go after the two medical establishments involved due to several factors that would take a book to outline, however, I should have. If this shot causes unintended consequences that escalate, you not only have the shot itself to blame, but the medical people who are not responding to your urgent need. You may want to keep a journal of dates, times, and to whom you spoke to create a record and paper trail. Include info on when you got the shot, and roughly how much pain and where each day. As many facts as possible. I'm hoping for your quick return to feeling well, but just in case, I would really document all this. What worries me is how they have not gotten you back in there for addl help with your pain.

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Taking a Stand, Making a Decision

Thursday, December 30, 2010

As many of you know, I've had reaction to the cervical shot that I had on December 21. I contacted the doctor's office and they in turn contacted the doctor ( who is on vacation) and who told me that I should feel better in about 4-5 days. Supposedly I should have felt a great deal better by Sunday and should have been able to resume my normal activities. I waited but I've never felt better, so I decided to try to go to water aerobics on Tuesday. I was going to just walk around in the water, maybe do a few water weights and then come home. I reigned myself in and didn't do anything strenuous. In fact, I used a floatation belt in an effort to minimize any impact and kept all of my motions slow and easy. I attempted to use the water weights but after several bicep curls I suddenly started to feel pain in my head and neck. I stopped using the weights immediately.

The pain started before I pulled the car out of the parking lot. By the time I arrived home I felt horrible. I headed straight for the telephone and called the doctor's office again. I asked to speak to my doctor or any doctor who might be in the office. Imagine my surprise when I was told that all of the doctors were on vacation and would be out of the office until January 3. I reminded the woman who I was, what my past problem was and then told her that I had never gotten much better and how going to water aerobics made me much worse again. Her answer to that was that she would send my doctor an email and let him know and she could call me back when he answers. That was when something inside me snapped!

The next thought that ran through my head was, "What's going on here?" I explained that once again I was in terrible pain instead of getting better and that the doctor said I'd be better by now. All his office could tell me is that they'd let him know. They kept asking if I want to cancel my injection for January 4. Last time I wanted to discuss it with the doctor. He still wanted to proceed with the injection but then again he is the same guy who is still unavailable to talk to. This time when they asked, I said yes cancel it. I want an MRI. They informed me that in order to get an order for an MRI I have to come in for an office visit with the doctor to get him to write the order. I made and appointment for January 6. I am going to dig my heels in and insist on having an MRI before any other treatment. It has been well over a week and I'm still having problems from the shot. This tells me that something else is going on that bears looking into. I've already decided that if he won't write me an order for an MRI, I will go to my primary care physician, explain the whole situation and get her to write the order. I think I need some answers before any doctor proceeds with anything further.

  Member Comments About This Blog Post:

SLIMMERJESSE 1/5/2011 12:11PM

    Yikes, what a runaround. Sorry you are going through this, and I hope for a good resolution promptly for you.

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EILEENV3 1/2/2011 2:50PM

    Good for you. It is your body. Our bodies send messages to us. I'm glad your paying attention to yours.
May 2011 be the year you can get relief from pain.

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L*I*T*A* 12/31/2010 9:17PM

    let's hope and pray all works out better in 2011.........
keeping you in my prayers....
blessings and hugs.......lita

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DONNABRIGHT 12/31/2010 8:33AM

    Amen! You go, girl! It's your body and you have the right to FEEL GOOD! If they won't help you, find someone who will.

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Problems With Tuesday's Procedure

Thursday, December 23, 2010

I had major problems with Tuesday's procedure. As some of you may know, I agreed to the procedure as a compromise with my doctor. I agreed to do two procedures and if they weren't successful, he would do an MRI. To his credit, he has credentials a mile long and has worked in a level I trauma center for 10 years so he knows (I think) what he is doing. He has taught cutting edge information at well known medical schools recently and has a wonderful reputation. That being said, the staff at the surgery center let me go home even after I told them that I was in crushing pain on my left side. The left side pain was a issue when I came to him and I voiced a concern because it was increasing over time. Fast forward to Tuesday. It was so bad when I left the out patient facility that I couldn't stand up straight. This should have been a red flag to the nurses at the facility and they shouldn't have let me leave without being seen again by my doctor. Instead they told me to take some Tylenol and go to bed when I got home. I asked permission to take a pain medication that I had left from an accident a year and a half a ago and they checked and said that would be fine. So I went home at around noon.

It took me almost until midnight to get the pain under control. Yesterday I was still in pain but it was tolerable without the medication. I still had electric shocks and muscle spasms going down my left arm into my hand and back and muscle spasms going down my right arm and hand. I had difficulty using my left arm/hand yesterday and my head and neck were throbbing. I had had enough so I decided to call the doctor's office to let them know everything that had transpired. Much to my surprise, the doctor had gone on vacation for the Christmas holidays. I was furious and told the person who answered the phone that I needed to talk to somebody. She said that if I would tell her in detail what had happened, she would call him and tell him everything and call me back. She asked me if I wanted to cancel my next injection appointment and I said I wanted to see what the doctor said first. I made this phone call at 9:30a.m.

At 2p.m. in the afternoon, the doctor's office called me back. The woman I spoke to in the morning was the same person who called me back. Suddenly the doctor's office was very apologetic about my experience on Tuesday. The doctor still wants to move forward with the second shot but he wants to assure me that I will not leave the facility without the pain under control and a pain management plan in place. The woman told me that pain after this procedure is common but my reaction was very rare and that they will watch it and me very carefully in the future. She said the down side of a reaction like mine is that my arms, back, shoulder, neck and head may be sore for up to five days after the shot and I have to rest according to my pain level. That did not make me happy because this is Christmas week.

Today I woke up and although still very sore, I am better. The electric shocks and the severe muscle spasms have subsided quite a bit. My head, neck, back and arm still ache but I'm able to use my arm and hand again. My husband is furious at the whole situation and I don't blame him. I know he felt helpless as he watched me suffer and he was even more angry when he found out that the doctor went on vacation. I was secretly happy to have interrupted his vacation with my phone call after all the pain and suffering I had gone through. I also filled out the survey (in detail) that the surgery center put in my hand as I was leaving on Tuesday. I signed it and put my phone number. My guess is that they will never call me after they read it. It wasn't all bad. I was fair and there were some positives that occurred before my procedure. It will be interesting to see what their response will be if they have one.

  Member Comments About This Blog Post:

DONNABRIGHT 12/25/2010 8:56AM

    Thank heavens you stood up for yourself - sometimes we just have to stop being nice and let someone know we HURT! I trust you are better and enjoying your Christmas. God's peace and blessings be with you and your family today and in the new year.

Thank you for all your support and helping me learn to say no when I needed time for me.

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SLENDERELLA61 12/24/2010 12:17AM

    OH, Cindy. So sorry you went through all that pain, especially since it was undoubtedly unnecessary. Very frustrating. Let's hope for a Christmas miracle, that you are comfy and well. Take care. Do your best to rest enough. -Marsha

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L*I*T*A* 12/23/2010 11:21PM

    am so sorry to hear...........
hope you are feeling better now....
blessings and hugs..........lita

emoticon emoticon emoticon

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WILD4STARS 12/23/2010 2:11PM

    GGRRrrrr. . . . . Oh, it is so irritating when people don't do their jobs. And especially when they don't do their jobs AND don't listen to me. I mean seriously, you're there for pain management, you shouldn't leave in more pain than when you arrived !! Glad you got their attention. I'll be you have their undivided attention on the next trip. Hope you're well on your way to feeling better.

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EILEENV3 12/23/2010 1:26PM

    TO YOU: emoticon emoticon emoticon

TO YOUR MEDICAL STAFF emoticon emoticon emoticon

Hope you feel better! emoticon

Comment edited on: 12/23/2010 1:27:12 PM

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