As I mentioned on an autism post earlier this year, autism is hard to separate from dementia in an older adult. Autism certainly cannot be seen on MRI. However, much to my surprise, I have found out recently that autism CAN be seen on a brain SPECT scan. Not only that, but autism CAN be separated from dementia on a scan.
What diseases brain SPECT scan is used for
I want to emphasize here that I am NOT recommending you run out and get a brain SPECT scan to diagnose autism. For one thing SPECT scanning is not anywhere near as ubiquitous as MRI and CT scans. The SPECT scan will cost more than an MRI, about 4 times more (see billing section below). For comparison, my co-pay for an MRI was less than $100. But even if you have sufficient funds to pay the cash price for a SPECT scan if you don’t have insurance coverage, it is only useful for certain categories of diseases. Quoting from my patient results report, the “American College of Radiology, the Society of Nuclear Medicine and the European Association of Nuclear Medicine establish the utility and scientific validity of SPECT functional brain imaging for detection of cerebrovascular disease and stroke, evaluation of dementia and Alzheimer’s disease, pre-surgical localization of epileptic foci, diagnostic evaluation of encephalitis and evaluation of suspected brain trauma.” Further, “research has also demonstrated regional perfusion patterns associated with other neurological disorders and exposure to neurotoxins, hypoxia and substances of abuse.” Notice autism spectrum disorder is not specifically mentioned.
Why did I get a brain SPECT scan?
I got a SPECT scan because I wanted to see if the scan could demonstrate dementia and/or traumatic brain injury (TBI) in a person who also has autism and ADHD. Additionally, my daughter (in her early 20’s) and I are also being evaluated for possible Huntington’s Disease or something similar. (Note: Huntington’s Disease is diagnosed by a test for a specific gene. There are Huntington-Disease look-alikes that involve other genes–not all of which can be tested for).
How does a SPECT scan work?
A SPECT scan looks at blood perfusion patterns. Alzheimer’s dementia has a pattern. Frontotemporal dementia has a pattern. TBI has somewhat of a pattern but since severity, location and cause of the TBI can vary, it is harder to call in someone like me who has multiple neurological disorders vs. someone who doesn’t, but has just been in a car accident, for example. There is research (not a lot yet) that shows somewhat of a pattern for autism. ADHD testing requires more elaborate (and costly) testing than the standard one scan testing I had. I did not have the specific two scan ADHD testing. It is important to note that not all areas of the brain have been mapped and the same area of the brain can have multiple functions. Therefore, a blood perfusion problem in a certain area of the brain can be somewhat ambiguous and difficult to interpret.
My brain SPECT scan results
So how helpful was my SPECT scan? Turns out quite helpful. The Radiologist impressions were: “Autism, possible neurodevelopmental disorder and possible traumatic brain injury.” As aforementioned, I did not have the ADHD two scan testing which is why the “neurodevelopmental disorder” was not definitive. Also as mentioned above, because of my multiple neurological issues, the TBI was only noted as “possible.” An area of the temporal region known to be commonly affected by the type of car accident I had in 1997, was damaged. The important part of knowing this information is the area above my left eye was where that damage was noted — which just happens to be where I get most of my headaches.
Equally important to me is what was ruled out. Note there is no dementia diagnosis. I don’t have a dementia disease; therefore, there isn’t the expectation of the symptoms getting progressively worse until there is the known outcome. Instead, what I have is enough damage in the areas of the brain (mostly temporal) responsible for memory so that I have symptoms that look like dementia but are not. So on a practical level, my brain acts like it has dementia but I don’t have a progressive disease that is a dementia.
Unfortunately, the information for a Huntington’s-type of disease was not noteworthy. In other words, I had noted damage in my cerebellum that explains my coordination, balance problems, dizziness and nausea but it was not severe enough to call a cerebellar degenerative disease. My symptoms are not as severe as my daughter’s who may be able to get a diagnosis from a neurologist as her neurological deficits are more outwardly notable.
As part of my health care career, I did medical billing. I must emphasize you need to read your Explanation of Benefits (EOB) from the insurance company. This EOB which you get after the insurance company such as Medicare, pays their amount, will tell you what you are obligated to pay. If the company/hospital doing your procedure, collects money from you beforehand, be aware that they may charge you much more than you are obligated to pay. In which case, you are entitled to a refund of the difference. For example, I have Medicare which says I am obligated to pay 20%. This is 20% of what Medicare says is allowable to bill. If Medicare denies coverage for certain CPT codes, you are not obligated to pay anything toward the fees the company charged for those codes. For a SPECT scan, expect to be billed for CPT code 78607 (Nuclear Medicine study of brain) and something like A9521 which is for the isotope used. You should NOT be billed for codes like 99205 (new patient office visit) as you are getting a scan and the visit is nothing like a doctor’s visit. You should also not be billed for 90889 (preparation of report). I was billed for all 4 of those codes and asked to pay $1100 up front. The Medicare allowed amount for me to pay was actually $405. Don’t expect the company to refund you hundreds of dollars automatically. I had to take the initiative and demand more than once for the company to refund the $738 that I was owed.
SPECT scanning was helpful to me because areas of the brain that had perfusion problems matched up with my autism symptoms, ADHD symptoms, sleep disorder, headaches, dementia symptoms and cerebellar problems. The cerebellar problems indicate to me a developing problem such as Huntington’s disease or something similar because I did not have the aforementioned cerebellar symptoms previous to the last couple of years and they are getting progressively worse. Alzheimer’s disease and other dementias were ruled out. Importantly for my medical care in the future, I now have objective medical test results that document my symptoms instead of the medical establishment having just to take my word for it.
Updated 31 Jan 2020 (Billing information added)
NOTE on PHOTO: Image is from my actual scan. Do NOT copy. Thank you.