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How do you get "experts" to listen to you and give you want you need?

What do you do when you know more about your condition then the so-called experts?? How do you get them to listen to you??

I have been suffering from severe coccydynia for about 20 months now. Bear with me, this isnt actually about coccydynia

My pain doctor originally said he thought it was muscle and ligaments, but I don't buy that for a second (he has since changed his mind as well) Non of the conservative pain treatments have helped worth a damn. Based on my symptoms, my research, etc I am pretty sure that I have either hyper mobility or luxation in the joint

The only way to really diagnose this is with dynamic sit/stand xrays. So, I asked my pcp to write me a requisition. I went for the xray, had to beg the techs to do the sit/stand. They didn't really know what I was talking about and I was sure they didn't know what they were doing or subsequently how to read the results. Basically, they took standing images, sat me on a footstool - on a cushion - and took seated images immediately after. I said, "I'm not feeling the pain at the moment, shouldn't I feel it to properly assess?". They looked at me like I grew another head and told me it made no difference. The images came back normal.

I have since done more research, including reading some articles by the Paris doctor who actually developed this x-ray technique for coccyx diagnosis and coined the term "dynamic sit stand views"

Surprise, surprise. I was right. The Paris doctor specifically says, the xrays need to be taken as follows:
1) patient cannot sit down for at least 15 minutes prior to first image (standing view) to ensure that coccyx is in neutral, pain free position
2) patient then needs to be seated on a hard stool, with feet elevated so knees are bent at 90 degrees. Patient needs to straighten up and lean back to put pressure on the tailbone
3) patent needs to sit in that position for as long as it takes or the pain to begin, then images is taken
4) seated images without the presence of pain are USELESS and cannot be used as accurate diagnosis

Now, what do I do? I can ask my doctor to give me a new a requisition, but how I get the techs to listen to me to ensure they do the test under theproper conditions and in the right position??? I printed the article as well as 2 othersvthat describe the technique, but what would you do if a layman patient tried o tell you how to do your job?

Please give me some suggestions on how to approach this. I absolutely have to have these xrays done properly. My pain doc is telling me that I should now be considering coccygectomy surgery, but all the studies indicate it's success really depends on candidate selection. If do ave a dislocation, there s almost a 90% success rate. It's a long recovery - can take up to a year. I can't go through that only to comeout on the other endcwith the same pain because I wasn't a good candidate.

Sorry fr the lengthy post, but please help...thanks in advance!


  • backbback Posts: 190
    edited 09/07/2012 - 5:31 PM
    Why not start with a doctor who is familiar with this diagnosis and is capable of making it. Unless your planning on doing the surgery yourself, this seems like the best course of action.
  • Im not sure how to take that LOL. As a matter of fact, I have been searching for a doctor who has particular expertise in coccydynia for several months now. They are not easy to come by. I have found one surgeon in my city who has performed the surgery 3 times. My pcp has already sent a referral. Here in Canada that could mean an appointment in about 6 months.

    But, he or anyone else can't make the diagnosis without the xrays being done properly. I still need to somehow either find a radiologist who knows how to do this technique (easier said than done) or get the xray techs to listen to me when I tell them what I've learned about positioning etc. That's what I need advice on...
  • backbback Posts: 190
    edited 09/07/2012 - 6:48 PM
    Some specialist will have there own xray equipment and techs capable of doing the job.
  • write it down .i tend to email myself in a draft {as i have no office software on my laptop] but i have found this is an excellent way to let the person know exactly whats wrong with you .you know how nervous you can get when seeing a medical professional and the times you have come out of the consultation thinking i wish i would have said that ?? or this ..but if you write it down you can add bits if its not as you want it .and a written letter is good to refer back to ..its worked well for me
    tony {UK}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Hi Tony,
    Thanks for the advice, I also try to write down all my notes and questions before my doc/specialist appointments.

    But this is a little different. Right now, I need to figure out an effective and tactful way to basically tell the xray technicians how do do the xray properly, (ie: correct technique and positioning) to avhieve optimal coccyx images and reliable results. How do I get them to listen to me and actually do it.

    My fear is that, if I get another tech who doesn't know the right procedure, when I try to tell them " how do to their job" they will ignore me because I am just a layman, nit a medical pro.

    Do you know what I mean? It sucks and has to e handled delicately so I don't piss them off, and do get the xray Doberman correctly.
  • Last line should have said "...so I don't piss them off and I do get the xrays done properly.
    Sorry about that!
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