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Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Nov 30 4:16pm | Replies (326)

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@jelizabeth

In 2016 one spine surgeon said I "probably" had arachnoiditis, but he sort of slid the comment in at the end of the office visit. I didn't know what questions to ask, but based on my previous appointments with him, he wouldn't have said very much, except to clarify that there was nothing he could do for me. Since then I have been told (after I asked if they could see it on the imaging) by three other neurosurgeons that I have arachnoiditis, and that I have cauda equina syndrome by one neurosurgeon, but they didn't mention this in the records, nor did the radiologist put it on the report. One radiologist said the diagnosis codes that the doctor put on the order would determine what information he would include in the impression. I took this to mean that unless the doctor gave the radiologist the O.K. nothing about certain things, such as iatrogenic conditions, would be on the report. The nurse practitioner ordered another sacral MRI, at my last pain management appointment, after we specifically discussed the fact that the previous imaging had severe artifacts from surgical hardware and a pain pump, and that no one had ever ordered imaging of the sacral nerve roots before. I explained that a neurosurgeon had told me, the previous week, that he could see arachnoiditis on the lumbar MRI that I took to the appointment. The nurse practitioner even asked the name of the doctor and typed it on his computer. I proceeded to tell him what the radiologist said and asked him to put arachnoiditis and cauda equina syndrome on the order. He indicated that he would do this, however, I was contacted by the person that was scheduling the MRI, who said he had put cauda equina syndrome, but not arachnoiditis, on the order. If I have the test and the radiologist doesn't see cauda equina syndrome, where will this leave me? I seriously doubt that he will say I have arachnoiditis, since none of the other ones have. Every radiologist in my area knows that surgery caused my problems. I could hear the nurses talking about this when I was lying in the MRI machine during the last test. I was approved for disability for a cervical spine problem, but I would like to find a pain management doctor that knows more about arachnoiditis. Did your doctor order MRI's for you, and if so did he put arachnoiditis on the order?

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Replies to "In 2016 one spine surgeon said I "probably" had arachnoiditis, but he sort of slid the..."

@jelizabeth

I'm going to have to disagree with the radiologist that told you the diagnostic codes the Dr. put on the order would determine what he included in the report. I understand that they are supposed to do as ordered but there is no reason they can't include all incidental findings. You are paying for these very expensive tests and you should have a say in how they are done. I found Nicolas Argy's point of view on the matter. https://www.nicolasargy.com/blog-2/index.php/2016/07/02/not-reporting-incidental-findings-in-radiology-reports
Not sure if I can post stuff on here so if it's not allowed just Google Nicolas Argy dot com. Check out his blog titled "Not Reporting Incidental Findings In Radiology Reports". His credentials are very impressive. He knows his stuff! You could argue that the radiologist refusing to include the incidental findings is a violation of the Standard of Care. You have the right to know about everything that shows up. Here is a clip from this discussion...

The current standard of care is to report all findings present, including those thought to be incidental and benign ( all corners of the film). By not reporting incidental findings, radiologists are breaching the standard of care. Not reporting them suggests to most lay people that the radiologist either missed the findings or was too busy to report them. While rare, benign appearing findings do sometimes turn out to be significant and even benign lesions have the potential to malignantly degenerate. Aren't these rare events, with potential catastrophic damages, the exact genesis of lawsuits.