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Question for hepatitisresearcher about fibroscan
Referred to you by Jim, I was trying to find out about fibroscans. I am on week 21 of 48 of treatment. I never had a biopsy done due to the fact I am a fainter Dr. did not want to take the chance with bx but never mentioned a fibroscan. Can you give me any information?
Tracey
Tracey
Forseegood: But as far as how I would measure my fibrosis level or not? I'd much rather go with HR, like I said. Each to his own.
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I never intended to turn this into a "my scan is better than your (or HR's) scan" thing, although you sometimes seem intent upon. Simply pointing out the differences in the two scan processes.
What would I do personally, logistics and finances aside?
I'd probably get a scan with HR because I value his intellect and experience with the machine. But I'd also get a comparative scan using trial test protocol because that is the big comparative database present and future studies will draw on to draw conclusions. And if I had to choose one, I'd choose the trial test protocol, again because of the database.
Again, one of the main benefits/intents of Fibroscan is to offer a non-evasive device to gauge liver damage that can be repeated in large populations with a minimal amount of operator bias/error. Data that can then be used both for individual patient managment and future trial data -- for example tracking the efficacy of anti-fibrotic drugs (or even anti-fibrotic herbs) just to list two of many applications.
Please let's not let this disingergrate into "my scan is better than your scan". Le'ts just point out the differences and the reasoning behind the differences. And remember, HR posted here that he would probably adhere to trial protocol's in some capacity if and when they become standardized.
-- Jim
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I never intended to turn this into a "my scan is better than your (or HR's) scan" thing, although you sometimes seem intent upon. Simply pointing out the differences in the two scan processes.
What would I do personally, logistics and finances aside?
I'd probably get a scan with HR because I value his intellect and experience with the machine. But I'd also get a comparative scan using trial test protocol because that is the big comparative database present and future studies will draw on to draw conclusions. And if I had to choose one, I'd choose the trial test protocol, again because of the database.
Again, one of the main benefits/intents of Fibroscan is to offer a non-evasive device to gauge liver damage that can be repeated in large populations with a minimal amount of operator bias/error. Data that can then be used both for individual patient managment and future trial data -- for example tracking the efficacy of anti-fibrotic drugs (or even anti-fibrotic herbs) just to list two of many applications.
Please let's not let this disingergrate into "my scan is better than your scan". Le'ts just point out the differences and the reasoning behind the differences. And remember, HR posted here that he would probably adhere to trial protocol's in some capacity if and when they become standardized.
-- Jim
~I'`ll g``et `b`a`ck o`nt`hi`s `when `nmy` `compu`ter i`s `worki`ng b`et`t`er. `seems to have a min`d o`f` i`t`s o``wn =``````
so pressed for time here this morning, writing fast, thinking fast, and the way my brain has been working lately, these are things I can ill afford, lol....anyway, after reading all you can on the fibroscan, and you can travel, and you are still interested, please email me at my profile...hope all is well...
In re-reading your post, I see that we actually agree on most things. Sometimes when I'm pressed for time, I don't give posts a thorough reading, my bad, lol....
We had this little tussle before (lol) and I learned something from your takes on this, because you have gotten the fibrocans in a trial setting and you were good enough to share your experience with the rest of us.
After reading everything you said, I think that in the future, they probably will be using a trial protocol like you say - for the masses. They can't expect a technician to be able to spontaneously read the probe's readings with the kind of expertise that HR does, HR being a doctor, specializing in liver and hepatitis research.
In a trial setting, from what I've read, and from what you say, the person doing the fibrosans will be a technician after all.
And like you say, the tech's that will be doing these fibroscan's will be taking only smaller samples in a much more methodized way. Probing sampling way less of you liver then HR. As you have said, they are not doctors and could not give you blow by blows of what's happening to your liver (in terms of fibrosis) in the way that HR can. They will be tallying results from the computer read-out if I'm not mistaken, if I am, course correct me.
What HR does is essay, almost, your entire liver.... giving you a lot more information on your individual liver fibrosis level. He's had the machine for years now and knows the thing inside out.
On the other hand, a biopsy takes relatively few samples in one setting, that's why biopsies at one time might give you a higher reading, at another biopsy, perhaps a lower reading, depending on the samples they took that day.
Course this is all individual, but many people don't have a uniform fibrosis level over their entire livers. I'm probably going beyond my ken here on some of these points, I don't know all that much about this.....these are things I've read and heard, but I could be wrong on some of these points. HR could explain these subtleties and distinctions much better then I could, but I can't count on the fact that he will, he doesn't like to get into debates here at message boards.
At my fibroscan, I discovered, or HR discovered, that on some parts of my liver, big parts, relatively speaking, it was pretty good, going from a 1 or high 1, on other parts of my liver, I was a low 2 then a middle 2 on only a few parts of my liver, etc.
So I guess you would just have to *average out* the findings in my case, and conclude that I'm doing relatively well on most of it - at any rate.
All of us who took fibroscans with HR were pretty impressed with his expertise. And to have it done in such a nice setting, his office, overlooking the cityscape in the mountains, etc...but that might be beside the point. I've never had such a great "clinical" experience, put it that way. He's a very nice, caring man on top of all the expertise.
He might get pssed that I speak about him, but sometimes if he is challenged here, about some of the supplements that he likes, etc...or the fibroscans, etc...the guy just probably doesn't feel that he needs to justify himself here too much, or just to a point. He feels people are free to believe what they care to believe. He's been very, very successful in his particular fields....my own hepatalogists, all 3 of them, are very impressed with him and his knowledge. He knows 2 of them personally.
I am glad that you cleared up some stuff on fibroscans (I was hoping you would), though I know that if I had my druthers (and I realize that not everybody does) I would rather go with HR's fibroscan in a New York minute. I'm almost sure you'd feel the same way if you took yours with him, though of course, I'm just guessing.
And of course, comparing them to biopsy is a little like apples and oranges, fibroscans just measure fibrosis scores, they can't get the information that you can get from live tissue, like a biopsy can. A biopsy can tell you if you have fatty liver, etc. A fibroscan can't. But as far as how I would measure my fibrosis level or not? I'd much rather go with HR, like I said. Each to his own.
After reading everything you said, I think that in the future, they probably will be using a trial protocol like you say - for the masses. They can't expect a technician to be able to spontaneously read the probe's readings with the kind of expertise that HR does, HR being a doctor, specializing in liver and hepatitis research.
In a trial setting, from what I've read, and from what you say, the person doing the fibrosans will be a technician after all.
And like you say, the tech's that will be doing these fibroscan's will be taking only smaller samples in a much more methodized way. Probing sampling way less of you liver then HR. As you have said, they are not doctors and could not give you blow by blows of what's happening to your liver (in terms of fibrosis) in the way that HR can. They will be tallying results from the computer read-out if I'm not mistaken, if I am, course correct me.
What HR does is essay, almost, your entire liver.... giving you a lot more information on your individual liver fibrosis level. He's had the machine for years now and knows the thing inside out.
On the other hand, a biopsy takes relatively few samples in one setting, that's why biopsies at one time might give you a higher reading, at another biopsy, perhaps a lower reading, depending on the samples they took that day.
Course this is all individual, but many people don't have a uniform fibrosis level over their entire livers. I'm probably going beyond my ken here on some of these points, I don't know all that much about this.....these are things I've read and heard, but I could be wrong on some of these points. HR could explain these subtleties and distinctions much better then I could, but I can't count on the fact that he will, he doesn't like to get into debates here at message boards.
At my fibroscan, I discovered, or HR discovered, that on some parts of my liver, big parts, relatively speaking, it was pretty good, going from a 1 or high 1, on other parts of my liver, I was a low 2 then a middle 2 on only a few parts of my liver, etc.
So I guess you would just have to *average out* the findings in my case, and conclude that I'm doing relatively well on most of it - at any rate.
All of us who took fibroscans with HR were pretty impressed with his expertise. And to have it done in such a nice setting, his office, overlooking the cityscape in the mountains, etc...but that might be beside the point. I've never had such a great "clinical" experience, put it that way. He's a very nice, caring man on top of all the expertise.
He might get pssed that I speak about him, but sometimes if he is challenged here, about some of the supplements that he likes, etc...or the fibroscans, etc...the guy just probably doesn't feel that he needs to justify himself here too much, or just to a point. He feels people are free to believe what they care to believe. He's been very, very successful in his particular fields....my own hepatalogists, all 3 of them, are very impressed with him and his knowledge. He knows 2 of them personally.
I am glad that you cleared up some stuff on fibroscans (I was hoping you would), though I know that if I had my druthers (and I realize that not everybody does) I would rather go with HR's fibroscan in a New York minute. I'm almost sure you'd feel the same way if you took yours with him, though of course, I'm just guessing.
And of course, comparing them to biopsy is a little like apples and oranges, fibroscans just measure fibrosis scores, they can't get the information that you can get from live tissue, like a biopsy can. A biopsy can tell you if you have fatty liver, etc. A fibroscan can't. But as far as how I would measure my fibrosis level or not? I'd much rather go with HR, like I said. Each to his own.
Except for HR and I believe Dr. S. in Miami, all current (as of last year) Fibroscan machines are being run strictly by trial protocol. Trial protocol, for better or worse, was developed to take operator error out of the loop with the intent that once approved, operators will simply follow a simple protocol and let the machine's software do the analysis.
So, assuming this carries over after FDA approval, I think most people can reasonably expect a good and accurate reading. I've had two Fibroscans done -- one during tx and one post tx -- both using trial protocol, which uses a single probe location with 12 (if I remember correctly) different "touches" which are then run through the computer software for some sort of median result after tossing out the high and low, or something like that.
My understanding from here is that HR does not use trial protocol and this is not a criticism but a statement. It's very possible that by not using trial protocol -- he uses mutliple probe points and what appears to be subjective analysis -- that he gets better readings than with trial protocol. Or it's possible that he doesn't because all the correlation data (with needle biopsy) is based on trial protocol.
But in any event -- HR aside -- I think trial Protocol is the way to go with Fibroscan, given the fact that it potentially will be used in many, many offices and therefore could potentially be subject to significant operator error/bias. We have that problem right now with needle biopsy.
-- Jim
So, assuming this carries over after FDA approval, I think most people can reasonably expect a good and accurate reading. I've had two Fibroscans done -- one during tx and one post tx -- both using trial protocol, which uses a single probe location with 12 (if I remember correctly) different "touches" which are then run through the computer software for some sort of median result after tossing out the high and low, or something like that.
My understanding from here is that HR does not use trial protocol and this is not a criticism but a statement. It's very possible that by not using trial protocol -- he uses mutliple probe points and what appears to be subjective analysis -- that he gets better readings than with trial protocol. Or it's possible that he doesn't because all the correlation data (with needle biopsy) is based on trial protocol.
But in any event -- HR aside -- I think trial Protocol is the way to go with Fibroscan, given the fact that it potentially will be used in many, many offices and therefore could potentially be subject to significant operator error/bias. We have that problem right now with needle biopsy.
-- Jim
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