Specialists: What happens when you don’t have them.

So I got my MRI results back today. This was the one test that I KNEW would be abnormal. After all, I already have an x-ray of my cervical spine stating that I have reversal of the natural lordosis. This means that I’ve lost the natural curve in my neck and that it’s actually starting to reverse into kyphosis. The MRI did not state this. All the MRI said was a two-sentence summary stating that I do not have syrinx or any other tumor in my spinal column. Well I could have told you that! Given my symptoms I was more worried about having a Chiari Malformation Type 1. This is often associated with Ehlers Danlos and would explain the majority of my symptoms. Apparently the radiologist didn’t even check for this. There is NO mention of it in my report. Not even a sentence claiming that it was not present. 

THIS is why I need to see a specialist. The doctor who ordered this test, only did so because of my spina bifida occulta which can RARELY be associated with a syrinx. She never considered that the chiari malformation may be related to EDS. She never even considered EDS in her evaluation. This results in a waste of tests, time, and money. And even more damaging, it results in an undermining of the patient’s symptoms. Unless the doctor can come up with a reasonable explanation for the patient’s symptoms, usually through abnormal test results, the doctor will begin to doubt or blow off the patient’s symptoms. This is my fear. So in order to be taken seriously with a rare disease, it is important to find a doctor who is familiar with that disease and knows what to look for. 

A perfect example of this is my two neuros. Both ordered MRAs. The first one ordered it because she was looking for brain micro-aneurysms. She knew of EDS and knew that this could be a common finding depending on the type of EDS and how much it affects the blood vessels. The second neuro ordered an MRA to look for basilar stenosis. She is not at all considering the EDS with this evaluation and is ordering a random test based on one symptom. So while the test is the same in both scenarios, the radiologist is looking for two separate things and may completely ignore other things. 

I see a specialist in May. Hopefully she can evaluate for Chiari specifically due to the EDS, which sometimes requires more specialized tests.  


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