Medical Merrygoround..

Discussion in 'Spirituality/Worship' started by dash, Nov 10, 2004.

  1. dash

    dash New Member

    I went to the Doctor in my rheumatologist practice who specialize in the spine, pain management and physical rehabilitation because my regular rheumy felt she could help with my neck pain.

    I saw her two weeks ago and she sent me to get an MRI.
    Monday, I went to the office to get the results.

    First off, they had not recorded my appointment. Then they could not find my file. The doctor agreed to see me, and when I went back into the examining room. She talked to me to get refreshed about my problem, then asked questions.
    Like how the microdose prescription of prednisone worked.

    Well fifteen minutes later they find my file, but it doesn't have the MRI report.

    She asks me about the headaches (The one's they thought might me temporal arteritis, but ruled out because I didn't have a high sed rate.) I tell her that I have all these tender spots along my temple and along the back and top of my head. If I press, I can start, or intensify my headache. Also the headaches were not so frequent or intense when I am on prednisone.

    She decides that this is serious and sends me over to see my regular rheumy, because he is the temporal arteritis specialists and thinks that this still might be a viable diagnosis.

    My rheumy decides that there might be a chance I have the temperoal arteritis and says I need to see my ENT doc and get a biopsy of a temporal artery and puts me pack on 20 mg of prednisone/day

    By now they've got a hold of the MRI report. My rheumy reads it and says this is very serious. I have multiple disk problems-bulges, dessication, herniation all along my cervical spine, along with spurs. On top of all this my spinal cord is being displaced and pushed to the right.

    He tells me I need to see a neurosurgeon, and sends me back to the first doctor so she can see the results. Her reaction was the same. She has one of the staff call a neurosurgeon and he fits me in for a special appointment.

    I see him about 30 min. later. He says its serious, but he can't jump to any immediate conclusions about surgery, because it might not help my pain He did a preliminary quick examination. He wants to see how I do on prednisone and give me a more complete workup this Monday and schedule tests.

    I called my ENT to get appointment to schedule the biopsy. He needs to see me first and there are no appointments until Dec. 7. I am frustrated because if I am on the prednisone for more that two weeks, I could get a false negative. I'm on list if a cancellation comes up.

    I know this is a long post but I am frustrated and discouraged. I have insurance, but the co-pays for each specialist is thirty-five dollars and a hundred for each surgical procedure. The pain is starting to get to me. I've got tramadol and vicodin available to me, but it only decreases the pain to about 50%.

    Please pray that I am properly diagnosed and treated. The headaches and neckpain have been affecting my ability to home school and do even light housework.

    Blessings to all,
    [This Message was Edited on 11/11/2004]
  2. Lupian

    Lupian New Member

    YOu have been through so much, you poor thing - this is crazy! They seem to pass you around like a football or a candy dish. Which of them, if any, are your primary doctor - the one you see for real help, the one you make an appointment with when you need help or are scared about something? Talk to that one very frankly about all this nonsense of being passed back and forth which is exhausting you with too many appointments, and exhausting your financial resources with the co-pay. One doctor needs to be overseeing your total care, and needs to put a stop to the back and forth.
    I am praying with you, Della, and so sorry you are going through this.
    Hugs- tomorrow will be brighter
  3. dash

    dash New Member

    I did go to my primary care doc first. She thought I had temporal arteritis too, but the blood test showed the sed rate was not high enough. She thought that I should pursue the headache and neckpain with the rheumatologist.

    My regular rheumy suspected cervical problems and this along with pain management, and rehabilitation were his partner's specialties. He said that she offered a variety of pain relief including acupuncture. He agreed with my primary care doctor that I probably didn't have the artertis problem because of the low sed rate.

    The clincher was by the time I saw his partner. I was off of the prednisone for ten days and the headaches had returned with a vengenance. I was better able to explain where and how it hurt. Because I was not typical in all the blood screenings and its a very dangerous thing, she thought it was enough of an emergency that my regular rheumy see me immediately. The biopsy is the only definitive way to decide. (You can lose your sight permanently if it isn't treated. So they treat first, then test.)

    Because of the nerve involvement in the spinal cord, they can't treat the neck problems without a neurosurgeon.

    My frustration isn't so much with the doctor's personally, but with the situation that I am in with my health. After thinking about it and praying, I am very blessed that I have doctors that listen and pursue things even when convention might say don't bother. Given the gravity of my two "new" problems, getting seen by everybody right away was a blessing.

    Thanks for your post, prayers and hugs. I need all three!

  4. Lupian

    Lupian New Member

    You have such a great attitude and spirit to see it as being put in a circle of good care. I am reminded of that Cancer Treatments Centers of America commercial where the young woman says from the beginning she was surrounded by a whole team, who told her she was in the center of the care, and would be calling the shots. Yes, being able to reach someone quickly is wonderful and to have something rapidly pursued because of the possible risky consequences is a blessing.
    I'm just glad you feel happy and like things were done right and came to a good conclusion.
  5. LindaH

    LindaH New Member

    You have had a time and a half of it. I hope things go better and you are not too dizzy from the merrygoround of doctor visits. I'm dizzy just thinking of all you have gone through back and forth.

    I will keep you in my prayers. My God's arms give you comfort and peace.

  6. Mikie

    Mikie Moderator

    I know how frustrating this can be. I am praying for a diagnosis and relief for you.

    Love, Mikie