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Advice Appreciated

AnonymousUserAAnonymousUser Posts: 49,899
edited 06/11/2012 - 8:23 AM in Lower Back Pain
Hello,

I am excited to have found this board and hope to be an active member as I am greatly in need of support from people who understand what it is like to live in constant pain.

I have spent the past two years trying to get a definative answer as to what is causing the constant and severe pain in my lower back. In the next few weeks I will be returning to the only PM clinic I can go to, and would like advice and tips on how to best address my situation with the doctors.

All of the doctors I see speak English as a second language. In the past they have seemed rather offended when I have asked them to repeat things or explain things. The doctors themselves have never interviewed me regarding my pain, I always just see a nurse who asks "On a scale of 1-10 how bad is it right this minute?". Then the doctor schedules non-steroid nerve blocking injections, which don't work. The last Dr. said it could take up to a year of 12 different injection sites to find one that works.

I know for certain that my problem is with my sacro-iliac joints, however I am very confused as to the specifics. If I am understanding everything I have been told, my primary care physician says it is "just" arthritis, specifically, "instant onset arthritis" resulting from a fall on my tailbone in May of 2006. The first Pain Management doctor diagnosed ankylosing spondylitis, but I am just now learning that upon reviewing my records as he never told me or explained it to me. When I went to PT in 2006 they said the problem was a posterior pelvic tilt. I saw a well respected theraputic massage therapist for six sessions and she was concerned about the possibility of rhumatoid arthritis given the amount of swelling.

My care has been inconsistant due to lack of insurance, but I have had 2 MRIs two years apart, a CT scan and supposedly a complete blood work-up just this past May. The CT scan showed a bulging disc but the MRI's did not. The first MRI showed "age appropriate" wearing of the SI joints, but the second showed more wear and extensive swelling. The blood work was done to address symptoms of severe fatigue, weight gain, and excessive sweating. An ultrasound ruled out ovarian cysts. Currently my only treatment is Celebrex and Loritabs.

Because I never know how long I will have insurance coverage (it is state sponsored, I've been dropped and re-added three times due to income fluctuations and policy changes within the state) I always feel tremendous pressure to get as much done as I can while I have coverage.

I really appreciate everyone who has taken the time to read this. I look forward to hearing your thoughts.

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Comments

  • Welcome to SH. I am sorry to read your story. You have been put through the ringer for sure.

    First off I would suggest that you seek out a ns for another opinion. Mine also said my discs were not bad enough to warrant my pain. He then asked for the flexion/extension xrays and I was finally diagnosed. I was almost completely dislocated at L5/S1 with incredible amount of instability.

    My pcp and I spoke about the various "spine specialist ((PM who do only injections)) in our area" and she told me that many of them never refer out even when they know that the injections are not working. I did have some nerve root injections but they didn't last long.

    Please if you can see a NS or a OS- get some xrays, or other tests like a discogram.

    Good luck,

    Julie
  • dilaurodilauro ConnecticutPosts: 9,720
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    For a Spine-Health Site introduction, Click on :

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    If you have any questions, feel free to contact (PM) any one of the Moderators here Priestess , Bruce , Paulgla, DiLauro

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    Please feel free to contact me at rdilauro@gmail.com or send me a message
    ________________________________________________________________________________

    Jacki, I think the first course of business is to get a more definite diagnosis of your condition. It appears that you have a couple of things that could be the problem, maybe one of them causing more problems than the other.
    It is so very important to be able to speak to the doctors directly and to have them address you concerns face to face.
    Too much can be lost in the translation when you go from Doctor-Nurse-Patient-Nurse-Doctor
    There are times when MRI's may be conclusive enough to make the formal diagnosis. Thats when additional tests such as Myelograms or Discograms may be done.
    Once your situation has been identified, then the appropriate corrective action plans can be put in place.
    I would make an appointment to see your doctor again and this time tell the nurses that you want time on the appointment to speak with the doctor directly. What happens in medical offices often is that the office staff, administrative folks are giving you the messages or the diagnosis. When those folks can put a sign on their desk, saying MD, then you will listen to what they have to say. Until then you want to speak with the doctors and/or nurses directly.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thanks for the responses. I was not aware of the tests mentioned and will certainly inquire about them at my visit. I have had a lot of problems with the auxillary staff in the past, with my PCP nurse recently sharing with me that since she suffers arthritis of the knees, but can work through the pain all day long, I should be able to as well!

  • I have arthritis in my knees and my facet joints and I can 100% guarantee you that I could get along quite nicely if it were just in my knees. I am so sorry to hear of what you are going through and am appalled at the phrase "just arthritis". Arthritis is very painful and debilitating. A discogram may be just what you need to get a diagnosis. Keep searching for a doc that will listen and is willing to do what ever it takes to diagnose and treat you. Good luck and please keep us posted.
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