Comments on: New Reading of the Nuclear Bone Scan: Credibility is Everything

By: Kelly Young

Kelly Young — Fri, 30 Dec 2011 03:03:26 +0000

Hi Nicole, I'm not sure but it seems like you've just begun to read here so I want to clarify my position to you. I'm sorry about your diagnosis and I hope you respond well to treatment so you can continue working for a long time. No need to apologize at all. The subjectivity of radiology is something that was a big surprise to me when a friend's broken hip did not show up in the xray in 2009, leading to inappropriate physical therapy. The nuclear bone scan seems to have its own idiosyncracies technologically which were again a surprise to me. As patients, we only think black and white when it comes to tests. We also assume that the techs and docs are all experts and that the results are correct. However, in my position as an advocate, I see the errors every day because patients tell me about them just like they tell us about their successes with treatment. The only solution for any of us is to admit that we are all human and that it's acceptable to ask questions. My doctor dismissed me for asking permission to ask a question about my scan. The suceeding blogs about that situation were not produced out of frustration, but written several weeks later after consultation with a number of medical professionals and with a purpose of illustrating what I've stated: that errors are possible and patients should have the abiltiy to ask reasonable questions. I feel that's the important lesson and the reason I decided to risk sharing this story.

By: Nicole

Nicole — Fri, 30 Dec 2011 02:01:08 +0000

First I would like to say, I am SO sorry you had a crappy initial radiologist! Part of the problem is that ANY radiologist can dictate a bone scan. As a nuclear medicine tech and RAer myself, I really believe nuclear medicine scans should only be read by nuclear medicine radiologists. Unfortunately, it’s a difficult specialty and there’re not enough of them to go around. AND, NO radiologist should ever read ANY scan only looking for one thing in particular. You read every scan as if you don’t know what may be going on. Your indication for treatment should only be used as a helpful tool when reading the images.
Timing is important when performing a bone scan but standard bone scans, in general, aren’t particularly useful for inflammation. Great for looking to see where the damage is specifically. The bone scan discussed in your link uses a radiopharmaceutical not used by most except for doing the study cited. Your tech should have also done individual pictures in addition to the wholebody. This allows for a “zoomed in” view of afflicted areas so that the doc can seem them more clearly.
All that being said, you were kinda screwed! And for that, I apologize for my commrades in radioactivity. And now, since being diagnosed with RA and having a particulary bad, self pitying day, I understand your frustration. Unfortunately, not everyone does their job to the best of their ability and those that don’t shouldn’t work in healthcare. That’s something I’ve always felt and feel even stronger about now. I cherish my chosen profession and feel rather devastated that there is a great possiblity that I may no longer be able to tolerate doing it any longer. My RA seems to be the Tower of Terror at the moment and each day has gotten harder and harder physically. I just hope that when I get to the point that I need a bone scan my tech will do for me what they would do for their loved one.
Sincerely,
Nicole

By: Kelly Young

Kelly Young — Thu, 03 Nov 2011 12:07:50 +0000

Dear Amanda, I’ve answered this question in several places, here and elsewhere – I’m trying to not miss a plane – so if it’s ok I’ll put a couple links here you can read and refer you there -
First, the links & comments in this post – disease activity needs to be monitored – and there were important things learned from my scan – off the top of my head: the inflammation in my c1-c2 joint – I knew of it but had not had any medical evidence so it and it had not ever been examined – read what the report says about it – that further monitoring / treatment is needed. I have had problems with it for a decade. Never conduction studies are abnormal but not doc could say why before. There is no external swelling in a large percent of inflammation – but various scans can show it. – -

Also – the comments by several patients on the previous bone scan post – http://rawarrior.com/my-doctor-fired-me/ – - Here is a a link to David’s because its the best example -http://rawarrior.com/my-doctor-fired-me/comment-page-2/?show=comments#comment-61832 – but you should read through all of the comments because it is discussed there – even – it is an interesting discussion – there are 140 so they are on 2 pages. Also have you read the other posts about the scan? This is the link to the Tag for that in the tags list: http://rawarrior.com/tag/nuclear-bone-scan/. Also, there are some posts that discuss the need for monitoring RA – here’s one http://rawarrior.com/2-reasons-monitoring-rheumatoid-arthritis-matters/.
I hope that helps. Good luck.

By: Amanda

Amanda — Thu, 03 Nov 2011 05:45:30 +0000

Hi Kelly. I have a question–but I don’t at all mean for it to be patronizing, critical, or doubting in ANY way. I ask for informational purposes, as someone who may be getting a bone scan to help diagnose RA.

Why did you get the bone scan if you already had been diagnosed with RA? Was it to monitor further damage?

Thanks in advance.

By: Kelly Young

Kelly Young — Wed, 27 Jul 2011 20:12:01 +0000

Just take one day at a time, Jane. Try not to let it overwhelm you.

By: Jane Hinrichs

Jane Hinrichs — Wed, 27 Jul 2011 20:04:19 +0000

So glad you are so open about all this. I’m kind of scared to see the RA doctor. But I’m going to read the book you mentioned. I will be ready. I’m going Sept 14.

By: LynnRivers

LynnRivers — Sat, 14 May 2011 21:59:39 +0000

I cannot beleive the difference between the two interpretations! Somebody needs to pull that first doctors license!

By: Kelly Young

Kelly Young — Sat, 16 Apr 2011 01:04:14 +0000

Thanks for visiting. If you borrow the image, please make sure it links to this page and mentions Elizabeth Cohen. Good luck to you and your sister-in-law.

By: Dogkisses (Rosa Blue)

Dogkisses (Rosa Blue) — Fri, 15 Apr 2011 11:54:35 +0000

Hi. What a great post. I love the image with the three golden rules. I wonder if I could use it? I don’t have RA but my sister-in-law was recently diagnosed, so I came over to read a little. I have fibro and CFS & much of what I’ve read on your site resonates with me. Esp., the part about learning how to communicate with doctors. Every time I think I’ve become quite good at talking to them, one throws me for a loop and I feel like I have to start all over. Very frustrating.

Thanks for the post. I’ll check back here (if I can find my way back that is) to see if that image is okay to use.
Peace and well wishes.

By: Brandi

Brandi — Mon, 11 Apr 2011 14:38:04 +0000

Hi Brenda, I was weakly ccp positive when I first felt the RA. My rheumy’s tests revealed that I am seronegative and after I began taking sulfazine, I have been negative ccp ever since. My rheumy is well aware that many people have negative blood results, but have proof in xrays and physical examination. My doc always feels my joints at every exam. The exams include the questions he asked at the initial exam. I just got a copy of my chart which includes the joints affected. Even though he has never told me officially that my feet are involved, he had marked the toe joints he has felt were altered.
Kelly I am deeply offended by the first reading of your scan. It was clear that the doc should have been reading for RA. My mother was a med tech. If she read blood but noticed something else present that was not included in the suspected in the original order, she ALWAYS! read the blood further. If the original order was incorrect, she would personally take hold of the order and work the blood until she had an answer. She would speak with the doc about her findings and insist the treatment be altered to respect the blood findings regardless of what the soc thought and never saved his ego. She saved many lives believe me. It is the duty of all medical personnel to be investigators. Lives depend on their work ethic. I know most do work and leave no stone unturned, but sadly do not.
Did you know that patients accurately diagnose themselves 65% of the time? In my view, if the patient feels it,believe it!! You may not know exactly what the cause is but there is a diagnosis. Just like the earth IS round not flat.