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  • steve4andrea
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    Post count: 3

    Yes, it has been an interesting five years and as is often the case the story behind the story is even more interesting but it is long, complicated and slanderous to some involved and this is not the place to tell that story.

    The AFGI stands for Aspiration w/Fibrin Glue Injection and is done by an Interventional Radiologist (Andrea’s was done by Dr. Kathuria at Johns Hopkins) and was developed by Dr. Donlin Long and a description can be found at his website (he’s listed in Google) under Clinical Practice / For Tarlov Cyst Patients. Andrea was/is one of the successes, her extreme tailbone pain during valsalva type events is gone.

    I am heartened to hear your opinion regarding the challenge testing, we have experience with diagnostic injections and are familiar with the “general area” nature of the results and were concerned about the validity (both positive and negative) of this test.

    We will move forward with having Andrea’s hardware removed, I’ll let you know how it turns out. Again thanks for your time on this.

    Steve

    steve4andrea
    Member
    Post count: 3

    Let me give a little background, my wife had an orthoscopic L5-S1 laminotomy in Aug 2008 that lead to a pseudomeningocele, then an orthoscopic exploration in Nov 2008 that showed a herniated nerve root in a dura tear and finally an L5-S1 fusion with a stitched dura repair in Feb 2009. All of this lead to problems with pre-existing Tarlov cysts for which she had 2 procedures (AFGI) at Johns Hopkins. She was left with a lot of residual pain, most of which has subsided, but-

    She was never a large person (5’3″, 120 lbs.) before the surgeries but since then she has lost weight (at her lowest she shrunk to 93 lbs. and is currently 103 lbs.) and is bothered by pain (burning and aching) and sensitivity to touch or pressure in the surgical/hardware area when she tries to return to an active life. A follow up CT in 2010 showed no problems with the fusion and no reason for the lingering pain- we’re wondering if removing the hardware would be a reasonable request. I have read of challenge testing with lidocaine injections, what is your opinion of this?

    Steve

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