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Emotions, Journey, Medical Testing

05/16/2019 Update

05/16/2019

Yay me!  I finally got a new written review of my last MRI.  The first report was not compared to any of my past ones.  Can I say this one thing?  Radiologists tend to be a bit lazy.  I am not talking about those doing the technical part of getting you on a table.  I am talking about the ones with the initials of “DR” in front of their name.  Then heaven forbid if you go to a different center.  Oh no, they are so not responsive about getting reports from other centers.  That seems to be too much work to give another office a call and ask for copies of images.  Then for them to include what machine you were in, not going to get that too freely.  You will never see or hear from one of these ‘reading’ doctors.  They are a special breed; you will never even know if they are real people.  You pay thousands of dollars and they cannot even give a complete report.  The patient must pester them to re-read the images and please point out sizes and give a very detailed report.  Nope, can’t do it the first time.  Then after you trot up to the center to hand them images that they could have easily gotten themselves, they re-read your newest set.  Does it go into more detail?  Yes, just a tiny bit more, they pointed out that you asked for a comparison and provided more images. 

So what showed up? – all inquiring minds want to know.  My brain is saying to my body, “I told you so!”.  But let us not jump too quickly to the final report.  Why?  Let this be a warning to you.  The first DR to read it said:

Impression: 1 Unremarkable MR appearance of the sacrum.  2. Age-indeterminant focal deformity of the coccyx.” 

 So it seems my rear is unremarkable, nothing to note?  How about scar tissue?  How about anything?  My rear is not ordinary, nor just plain boring, thank you very much.   Yep, I am deformed, I knew it!  And I am unremarkable.  I sure must be a boring person.  He defines the deformity as: focal contour deformity with corresponding limited edema ….  No apparent mass.  Then he goes on to say the sacrum has normal morphology and signal.  But he adds “trace free fluid noted”.  So what is a doctor who has never known too much about Tarlov Cysts suppose to take away from that?  You got it, most will just read the “Impressions” and tell you to go to PT.  Or that they see no reason for any issues.  You just got a brush off.

Now after I had read the above, I knew the DR that did the first report had no clue what he was looking at.  So what does the re-read say?  Ready? 

“… the localized marrow edema in the coccyx does appear new since the most recent comparison exam.  Previous S1-S2 laminectomies noted.  Fat predominates in the sacral and coccygeal spinal canal with no suspicious lesion.  Two tiny round 6 mm perineural cystic foci noted at the S1 level, one right and one left.” 

Wow, they read totally different.  For those who do not know what “laminectomies” are; it is where I had my Tarlov Cyst surgery.  They are to be expected.  Notice how he does not clarify the “deformities”.   I am taking an educated guess and think the deformities are the scar tissue from the surgery or the tissue growth from the mesh that was supposed to be absorbed by my body.  Or it is the Cysts that were worked on and wrapped.  Just using the word deformities was laziness on the Radiologist. 

Why did I feel it important to show you how different people can read MRI’s?  It is important with today’s hurry up world to get as detailed reports as you can.  This shows that the center was too apathetic to get my previous records, and the first reading Dr too indifferent to examine the “deformity” any further.  Think on this for a moment.  If I had not educated myself on my own disease what would have happened to me?  I sure would not be here writing a blog post.  I would have been in a mental institution or worse.  I could not have taken what pain I was going through daily. 

On a side note I was reading a study about the difference in how men and women were treated when seeing a doctor for pain.  The doctors admitted that they scored men higher than what women were reporting as pain.  They tended to give medicines more trustingly to men over women.  They admitted they were gender biased!   Yes, those loving pain doctors that all our family doctors want us to visit admitted they treated women differently!  I hope that makes you mad.  That is why you should get copies of all images and copies of written reports.  Force the doctor to show those images to you and explain them.  Most have no clue what they are looking at.  How do I know?  An Orthopedic surgeon admitted to me, face to face, that she had no clue how to read a MRI.  She only goes off what the Radiologist sends her.  Yep, last time I went there.  She does surgery with image guided machinery but has no clue what she is looking at? 

To the rest of the images and report, I will keep it to myself.  Sorry, I am not ready to share quite yet.  I will be seeing a specialist again.  Yay, me.  But if you have read any of my blog, you know I am having a hard time even taking the step of walking into another doctor’s office.  Plus, trying to find a doctor that can be knowledgeable and willing to learn about all the fun stuff that can tag along with Tarlov Cysts seems to be almost impossible.  Why do I say that?  Our state has more than a dozen individuals that have this disease and so far, none have said they have a wonderful and knowledgeable doctor.

If there is any takeaway from this post, it is to please get all your reports.  Then educate yourself.    You are worth the effort it takes to protect your health.  

For those wondering about the day I went for the MRI you can read this post:  04/18/2018 Update

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