Lessons from a peeved patient

Want to know one of my biggest pet peeves when it comes to being chronically ill? Doctors.

Like for instance, yesterday I went back to my neurologist for a follow up appointment after the 2 MRIs he ordered last week. He pulls up the reports of the radiologist’s findings on his fancy ipad, and says “well, the good news is your MRIs are both normal”.

– FIRST MISTAKE: “normal” test results are hardly ever a “good” thing to a chronically ill patient

“So what do you think is causing my symptoms?” I asked. His answer? “I have no idea”. Wonderful.

*Note: I do believe I know what is causing my symptoms, it’s the chronic lyme disease/bartonella I was recently diagnosed with, but I wanted to see what HE thought was causing them. I did tell him that I believe it is the lyme/bartonella and he agreed with me that that is highly likely, and said good luck with my antibiotic treatment (AMAZING! lol)

He offered to run an EEG to check for seizures; I said “Do any of my symptoms lead you to believe I am having seizures?” He said no. So I elected not to have an EEG, since I think I already know what is causing my symptoms anyway, and have had one in the past with no seizures. As I left the office I requested copies of his office notes and both of the MRI reports, and as I got in the car I started to look over them, as soon as I got the the MRI reports I said “WHAT?! These do not look like ‘normal’ MRI reports to me!”

And I quote “MRI scan of the cervical spine (neck) without and with a paramagnetic contrast agent – Note is made of posterior osteophytes extending off the inferior aspects of the C3 and C4 vertebral bodies…There are posterior extensions of the C3-4 and C4-5 intervertebral disks…there are disc/osteophyte complexes at C3-4 and C4-5 encroaching on the anterior subarachnoid space…there are no MRI findings suggestive of multiple sclerosis… Summary: There are mild spondylotic changes at C3-4 and C4-5 with disc/osteophyte complexes encroaching on the anterior subarachnoid space…”

Now, I know that is a whole lot of medical jargon, but lucky for you I understand what it all means!

The good thing is, I don’t have multiple sclerosis…but I already knew that (for the most part).

Basically an osteophyte is a bone spur, a bony growth that is not generally there in a healthy person; this is indicative of degenerative arthritis…and while they are not always painful, they can be, especially as the joint deteriorates more. According to the report I have these osteophytes on C3-4 and C4-5, which are “encroaching on the anterior subarachnoid space” (the cushion of space surrounding the spinal cord, or the brain)

Image

The summary says that I have “mild spondylotic changes”…spondylosis is defined as “Degeneration of the spinal column, especially a fusion and immobilization of the vertebral bones.”

“Uhmmm….ok?” I also have these bones spurs and “spondylotic changes” in my lower back, so none of this was news to me…I’m not surprised that it is in my cervical spine as well.

Then I moved on the MRI of my brain, “MRI scan of the brain without and with a paramagenetic contrast agent – there is a single focal area of abnormal signal intensity with the central portion of the right centrum semiovale oriented perpendicular to the posterolateral margin of the right lateral ventricle, the etiology of which may be demyelinating, however an ischemic etiology should be excluded, particularly since on the current MRI scan there is an area of abnormal signal intensity within the most peripheral portion of the corona radiata within the anterior superior portion of the right frontal lobe, the etiology of which is overwhelmingly likely ischemic, which was not present on the patient’s prior MRI scan…”

WHEW! That was a lot of craziness! But what does it all mean? Basically it means that there are two bright spots that show up in my brain, and they’re not entirely what is causing them. One of them they say could be from demyelinating, which is the process of removing or destroying the myelin sheath that surrounds a nerve fiber. This is seen in multiple sclerosis, as well as several other inflammatory degenerative diseases (see link at the end of the post). But the other spot is “overwhelmingly likely ischemic”…ischemic means “A decrease in the blood supply to a bodily organ, tissue, or part caused by constriction or obstruction of the blood vessels”, and is new since my last scan 3 years ago.

The bright spots look something like this (disclaimer: this is NOT my brain! Just an illustration of what bright spots look like)

Image

So my question is this, do those reports SOUND like “normal” MRIs of a 24 year old woman to you?!

– SECOND MISTAKE: Leaving out information when relaying results to the patient.

Now, I understand that these things are not “end of the world” issues, but I have a right to know that they are there. Imagine if I had not requested a copy of the MRI reports, I would never have known. I also understand that some patients may either a) have no idea what any of that means or b) freak out over it, or both. But I am not that kind of patient, I KNOW what it means, and I understand that it is not a huge deal. And regardless, as a physician, he should have explained to me what the reports said, and explained that there is nothing to be concerned about.

So, the morals of the story are as follows:

1.) Always, always, ALWAYS request copies of any test results as soon as the doctor has reviewed them

2.) Research everything and understand what the report says for yourself, because the doctor may not explain it all to you

3.) Do NOT freak out. It is normal to be concerned but understand that if it was something fatal or serious the doctor would have discussed it with you.

4.) Just be an informed patient. In the end this is your body, your health, you have to take care of it…no one else is going to.

 

 

http://www.mayoclinic.org/demyelinating-disease/expert-answers/faq-20058521

http://www.thefreedictionary.com/spondylosis

http://www.thefreedictionary.com/ischemic

Image:

http://www.mayfieldclinic.com/PE-LP.htm

http://emedicine.medscape.com/article/338641-overview

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