What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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Issie
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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The book points out that sometimes no response is a positive response. Even a tiny amount as a pin prick of a substance can be a therapeutic positive response, with no response. Its fascinating and something I had NEVER heard of. I went into it with much skepticism and came out with a whole new way of looking at things. Many times our body is trying to right things with what we may be calling "symptoms". But it could be the lessor of two evils. And is a compensation instead. It's getting the H2 receptor to work properly and not degranulate the mast cells by having H1 activate. If they don't degranulate you don't have inflammatory chemicals dumping. But have the benefit of the Suppressor T cells helping moderate the immune system. Resetting the sensitivity of the H2 and H3 receptor. Having that as a huge benefit.
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Julie G
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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Hmmm, assuming no histamine after allergen exposure, or even no reaction to histamine itself (?)
No response to histamine itself... not sure what that means and why I get relief from zyrtec, an antihistamine.
Julie, I have MCAS too and not Ige tested response. If you read the book it will answer a whole bunch of questions for you. I'm off all my MCAS and POTS medicines for 2 months now. I have been hospitalized in ICU for MCAS. So being off everything is amazing for me. My brain function has improved dramatically. And my pain isn't any worse off things. Histamine actually affects the Autoimmune System and Inflammation. It turns on Suppressor T Cells that help inflammation. And histamine is needed to trigger that. I worry what I may have done being on antihistamines for over 8 years non stop, out of ignorance. I did further research and histamine is being used to treat ALS, leukemia, cancer, MS and other things. It's a work in progress, but there is progress.
Really interesting, Issie. So, you're taking histamine as treatment. Once again, is this in pill or injectable form? Thanks for bringing this up. I feel like I need to fall down a few more rabbit holes to fully comprehend.
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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It's a cream. I sent you an email. Not sure if this forum allows you to put what one is using on here.

Ha! We both have been down many rabbit holes with our chronic selves.
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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I'm still trying to sort this and don't have it figured out. But what I do have figured out is we need some histamine. And we don't need what the blockers are doing to us. Including causing cognitive issues. If MCAS is not a big issue for someone, and they are not using antihistamines- this is a non issue. But for us with really bad MCAS.....this is huge.

Trying to find another way to tame down these trigger happy, over responding mast cells......is the goal. I'm not having a huge success with the cream I'm trying now, but have another one ordered - with less ingredients. It's not a goal to add more histamine to the body. The goal is to stop so much over production of the body own mast cell degranulation. Trying to get the suppressor H2 and H3 to easier detect when it is there and maybe stop the so easily triggered mast cell response. Sort of an immunology type treatment.

It's still an ongoing experiment for me. Not there yet......
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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I am not sure whether this is the place to post, or whether I should have started a new topic called "NeuroQuant and Basic Facts". At any rate, here is what I have learned.

1. To echo what TheBrain originally posted on this thread, it seems that neurologists and radiologists either are unfamiliar with NeuroQuant or somewhat unsure about interpretations of the data. In my case, my wonderful neurologist said, " Let's get a NeuroQuant analysis. It is very valuable and Cleveland/Mayo also do these routinely. I am unfamiliar with how it is interpreted, but let's do it, and learn!" After finding out my results, he said, "Give me time to run this by a very knowledgeable neuroradiologst that I trust, research this more, and get back to you. We will scrutinize the scan and not hold anything back (or sugar coat) anything we see. I know that is what you would want."

2. We learned that only physicians can order NeuroQuant, so my neurologist made that initial referral to a scan location.

3. We learned that it is the location that does the scan that decides how many reports you initially get. We initially only got two. HOWEVER, after sleuthing we found that you can ask for ALL the reports, and after calling back to the scan location of the MRI and checking with CorTechs Labs (NeuroQuant), saw that there were seven. My neurologist wanted five of those and got them almost immediately. We also found that the person whose scan it is, can request more reports and it does not have to be the ordering physician. Those additional reports do not cost extra! Have your doctor ask for all of them on the front end if you are doing this for the first time, or in getting a later scan down the road for tracking. It will certainly cut down on followup. :?

4. We learned that In order to obtain longitudinal tracking, the scans must be performed at the same scanner location for comparison and tracking over time.

5. If you had these NeuroQuant scans at a coordinating facility and want more reports later, it will depend on the imaging site where the brain scan was performed, and whether they still have your scan in their system. If they do, they can send it through the NeuroQuant software and request more NeuroQuant reports. This depends on how the site is set up for their patient record retention period. While mine said, "...we keep these indefinitely", this is for sure, a question to ask on the front end.

6. CorTechs Labs (the hub of NeuroQuant) reiterated that the retention period is per imaging site, not per individual patient and said, "We do not retain patient data due to being HIPAA compliant."

7. Most of the reports have a normative database of "thousands of healthy cohorts" that you will be compared/contrasted with in these reports, although I have not delved any more into where the healthy cohorts came from, how healthy is defined, and whether they are adding to that database.

My mantra has always been that knowledge is power. Be forewarned that your results could be unsettling, mixed, or fine, but if you want to track your changes over several years or more, this analysis could be very helpful. What you should keep in mind if it is unsettling, is that you do not know how long it took for those changes to happen in the different parts and structures of your brain, nor do you know the rate of progression for the future. This is why followup scans and tracking are important.
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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Indywoman, thanks for posting this information! I agree with you that knowledge is power.

I’ve called the radiology clinic where I had my MRI with NeuroQuant done, and I’m working through my questions. I’ll probably call CorTechs tomorrow because the person I spoke with didn’t agree with some of what I said. But having worked with this clinic two years ago, I can say they are a challenge to deal with. Unfortunately.
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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I neglected to mention that the radiology clinic I went to for my MRI with NeuroQuant does still have my scan from two years ago in their system.

I did talk to a support person at CorTechs yesterday. She said they don’t determine whether clinics charge for reports to be re-run or for newly available reports to be charged for. So, in my case, I would be charged so these reports wouldn’t be free. The clinic also told me they’d want my doctor to order the reports; I couldn’t do that myself.

I found out that the clinic I went to is not running the latest version of the NeuroQuant software (which is 3.0.0). So there’s no point in me trying to get new reports or even re-run existing reports that have been updated—at least for now. Previously, I found the clinic to NOT be technically savvy. They couldn’t even create a CD of high-quality images for me (which I wanted for a “second read” at another clinic). All that involved, according to CorTechs, was clicking a single box in their NeuroQuant software for creating a CD.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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Oh dear. I am so sorry. One never knows all the caveats and disclaimers to ask about up front, and hindsight often won't correct those issues without more money and certainly more time. My MRI scan location was slow getting the scans and reports to the neurologist, and did not tell me until I asked about the other reports, that they were free. When I called, I said, "This is like trying to get the results from the Iowa Caucus!"

This must be especially hard on you because you had to travel 5 hours round trip, and future scans have to be done at the same place/scanner according to CorTechs, in order to get accurate tracking. The reports however, are very useful and informative.
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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Indywoman wrote: 7. Most of the reports have a normative database of "thousands of healthy cohorts" that you will be compared/contrasted with in these reports, although I have not delved any more into where the healthy cohorts came from, how healthy is defined, and whether they are adding to that database.
It would be great to know whether this means <5,000, in the tens of thousands, hundreds of thousands or exactly what. As this article suggests, newer big data databases are likely going to really change the results in the reference populations that will presumably be used by NeuroQuant some day.
Cox recently published a study that exploits another extension of the biobank’s original goals. In April 2016, organizers started to invite thousands of the participants back to take detailed MRI scans of their bodies, brains and other organs and add them to the database. Some 40,000 of the original volunteers have been scanned this way so far, and the project wants to make that 100,000 by 2022. Some of these volunteers also agreed to take a battery of psychological tests when they returned — to probe reasoning and intelligence with questions not asked in the original assessment. Cox and his colleagues took advantage of this to revisit one of the most controversial historic questions in psychology: Does a bigger brain make someone smarter? (Spoiler: It does, but not much.) Particularly important, the research showed, is the structure of white matter and the relative size of individual regions such as parts of the frontal cortex.
Related article: Living with hemophilia: When patients with genetic disorders don’t want to be cured

To do this analysis, the scientists compared the test scores and brain volumes of more than 18,000 people — way more than had ever been gathered for such a study before. At a stroke, Cox says, the biobank’s massive numbers address one of the strongest criticisms of findings based on MRI scans — that they include too few people to give reliable results.

“It’s the biggest dataset there is,” says Lisa Nobis, a neuroscientist at the University of Oxford. And it shows the way that science is going. “When MRI first came out, you could get a paper in Nature or Science with just 15 people. But in the last few years, studies have shown that less than 50 people is not reliable at all” as a general rule. She is using the biobank scans to build up a picture of how the brain’s hippocampus shrinks with age and with dementia. The plan is to produce a reference tool of normal hippocampus size for different age groups that future clinicians can use to spot problems earlier.

It’s the kind of study, Nobis says, that can only be done with a very large sample size. Scientists’ attempts to boost numbers of brains by combining results from sets of smaller MRI studies run into their own set of problems: Technical differences between the way scans are done in different centers often make it difficult to meaningfully compare them.
[Emphasis added]
Thousands is much better than 50, but it's still relative, and if it really only means 3,000 or so, then I would expect much different NeuroQuant percentiles down the road. In fact, if in the fairly distant future you run a new MRI to compare it with your NeuroQuant baseline, then if CorTechs is using much, much larger reference populations coming out of big data studies, then the comparison won't be apples to apples. So will NeuroQuant just continue to use what will be an outdated dataset so people can make comparisons over time, despite what will become outdated percentiles? Does their dataset already change from version 1 to version 2 to version 3, or are the changes only more display oriented using the same data?

Just thinking 'out loud'.
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Re: What is considered atrophy in a brain structure per MRI volumetrics (NeuroQuant and Neuroreader)?

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Circular wrote:
In fact, if in the fairly distant future you run a new MRI to compare it with your NeuroQuant baseline, then if CorTechs is using much, much larger reference populations coming out of big data studies, then the comparison won't be apples to apples. So will NeuroQuant just continue to use what will be an outdated dataset so people can make comparisons over time, despite what will become outdated percentiles? Does their dataset already change from version 1 to version 2 to version 3, or are the changes only more display oriented using the same data?
This is an interesting conundrum, not just for NeuroQuant and CorTech Labs but in any normative database for a medical condition. It would seem that the larger the database, let's say for Alzheimer's, the more epigenetic factors would come into play, especially if it were a global database. We have at least reached the point where databases are giving norms based on age, sex, and now starting on race. That's progress!

Would I want to be normed in a database that includes Denmark or Norway where a number of governmental decisions have made them more economically secure and happier (overall less stressed) than in the U.S.? Or with Finns added in who come out near the top of the "happiness index", but also have one of the highest dementia mortality rates? Would a large database in one's own country be preferable to a larger one including other countries or vice versa?

You raise such interesting questions, Circular. Yes, indeed, this does pose issues for tracking over time from an initial baseline, if the normative databases used in that baseline become outdated as more studies take place.
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