ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: frank on April 29, 2008, 02:18:20 pm
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Hi all:
Today I went to my local ENT doctor for a discussion of the results of my 1-year MRI. The AN now shows dimensions of 10x5x5 mm vs 8x5x6 mm a year ago. A hearing test showed a slight loss in one of the upper frequencies but was otherwise the same as before.
The doctor analyzing the MRI indicated that the AN is unchanged in size in comparison to the prior MRI. Both MRIs were performed at the same place but the doctors who wrote the reports were not the same.
My ENT doctor is sending my MRI and hearing test results to a neurosurgeon whom we have used as a consultant. My ENT has additionally scheduled me for another hearing test in 6-months and is suggesting another MRI about a year from now.
I would like to believe that I have received good news . But after reading other posts regarding interpretation of MRI results, I am now not so sure. Would appreciate any comments.
frank
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Hey Frank,
Actually, IMO, it is.
It is known that head MRI's have a margin of error of approx +/- 2mm, so if your earlier films showed at 8x5x6 mm and now at 10mm (1cm), you do fall in that margin of error.
your dr is also correct in noting that different dr's will measure them differently. My neuro-onc and my radio-onc are always off-kilter when they measure mine (yet, they are on the same team!)... but usually not by much. Also, different MRI machines, different "reads" of the films, different view "slices", etc, can all come into play.
IMO, you are still in great shape. Other than slight hearing loss, I'd honestly say you did get good news.
But again, that is just me. Hang in there!
Phyl
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Sounds like pretty good news to me! From what I here there is a chance that some AN`s run their course and pretty much stabilze especially as we get older. I`m also hoping this be the case with my AN which who knows how long I really have had it. Diagnosed last year MRI this year "stable". Good Luck, Mickey
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Frank,
I would agree with all the points Phyl raised because I usually do and she is usually right ;)
For the reasons she listed, I think waiting another year is a prudent path for you to take as well. However,in my view, I would add the word "cautious" in front of "good news" or at least term it a "neutral". While the "margin of error" perspective is reasonable, the other view would be that AN's typically growth 1-2 mm per year which your MRI results would support plus you did have a slight decrease in hearing in the same period. So either scenario is possible from what I see, no change due to margin of error or a normal expectation of progression for the AN in that time period. Don't mean to throw a negative out there, but I think continuing to be attentive and establish one more data point next year is a good approach. If it stays plus or minus in the same range and hearing doesn't change then I would feel pretty good that it's stable and the variations are measuring related. If hearing continues to diminish next year or the there is another 1-2 mm increase, then I would feel less confident.
Good luck
Mark
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*slips Mark $10 bill* ;)
Thanks Mark... and Frank, Mark's elaboration certainly makes sense. During that time of watch/wait for me, after the initial MRI's, I gathered/armed myself with all info I could... so, when the time came for me when the dr said "ok, Phyl, time to act on it", I was fully aware of options and able to ask questions on the spot. Please be the best, well-informed patient you can be during this further "wait" time.... and most of all, hang in there.
Phyl
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Hi Frank,
Well, your report is a little on the dull side, not much going on at all. You've got +2 mm here, -1 mm there, -5db on the dog whistle test. All in all, very ho-hum and routine.
Yawn. It would be nice if these things came up with 50% reduction in size and 75% darkening in the first three months, but it just doesn't seem to happen that way. The main thing is that it hasn't doubled in size and you haven't gone deaf in that ear.
Boring is good news. Best wishes for another boring report next year. :)
Steve
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Hi Phyl, Mickey, Mark and Steve
Thank you all for your response and encouraging words.
Yes, a change of 2 mm can be considered within the limit of measurement error so the next MRI should establish a more accurate indication of what is going on. I neglected to report that I just had my 70th birthday a few weeks ago so maybe I am demonstrating the belief that these things tend to level off and grow more slowly as we advance in years.
Phyl - I have been studying my options for over a year now and I do plan on being as knowledgeable as I possibly can be. The best education one can find is reading the posts on this Forum and by asking questions on the Forum.
Thanks again.
Frank
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Hi Frank,
I have been waiting and watching since 2005. You can get my growth info from my signature below. I have had all five of my MRIs done at the same place with the same machine and done by the same person. One, two and three MRIs were read by different docs and came up with basically the same size. Fourth and fifth MRIs were read by the same doc. Comparing all five, 1-4 looked the same on the screen (a half moon), and the 5th is a full moon.
Even though I have only slight growth, I have had some bothersome hearing loss. Not the worst by any means, but it is enough for me to consider gamma knife. I don't think I care as much about how big the AN gets as I do about the symptoms. I don't want to lose any more hearing. If the gamma knife will give me a chance to maintain my hearing, then I might take the risk. It is a big decision because the cards could fall the other way, and I could lose more or all of my hearing. That would really be a bummer, and I am sure I would regret bailing on the wait and watch mode.
Steve, I am not at the point where I feel boring and dull about my slight growth. I guess it is just different for everyone. We all see through different lenses. If your AN bugs ya, it bugs ya no matter what. Thanks for your support, and I mean no offense to your comments to Frank.
Nancy
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Actually I meant to say no offense to your comment Steve not Frank. I guess the dull and yawn part sort of caught my attention because I am pretty touchy right now. I have small growth as you can see, but I am nevertheless worried. I can't feel the dull and yawn part yet, but hopefully one day I will. Nancy
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Hello Frank (newbie) and others (not newbies!)....I wrote when I was diagnosed a year ago, but have only written intermittently since then with questions, etc. Though I do not write often, I read often and this is an awesome site!! Today I had my one year follow-up MRI/hearing test/visit with neuro/ent....and I, too, had good news. My very small cochlear schwannoma (AN into the cochlea) had not grown nor had my hearing loss increased. It is good news....but, on the other hand, I would almost like to be at the point of making a decision about something. I have researched everywhere recommended my everyone, read up, ordered material, read the blogs....and so on and feel I am becoming well informed.....but am just watching and waiting too. It is a good "ho hum" to be in, I know. But still a little weird after all. :P
So...Frank and others in the watch and wait mode.....we can form a club ;D
(I still really hate the MRIs....am very claustrophobic...thank heavens for valium!)
Mebe
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Oops...I forgot.....I used the questionaire check-sheet downloaded from a writer from the Northwest...someone who is a moderator and wealth of information...I have forgotten the name (sorry)....IT WAS SO VERY HELPFUL. THANKS TO WHOMEVER THAT IS! ::)
Oh, here's a technical question re: this site. How do I put a signature of information re: my little friend like you all. I can't seem to figure it out. :-\
MEBE
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Oops...I forgot.....I used the questionaire check-sheet downloaded from a writer from the Northwest...someone who is a moderator and wealth of information...I have forgotten the name (sorry)....IT WAS SO VERY HELPFUL. THANKS TO WHOMEVER THAT IS! ::)
Sounds like Steve Gerrard. If so, I'm sure he was happy to help you out.
Oh, here's a technical question re: this site. How do I put a signature of information re: my little friend like you all. I can't seem to figure it out. :-\
Not sure what you're asking.
You have a 'signature', now, at the bottom of your post so I assume this question was already answered or you figured it out on your own, as many do. If you want a designation under your photo (name) then right-click on your name and click on 'Forum Profile Information' then, in the first box where it asks if you have your own picture you'll see 'Personal Text' next to a blank space. You can type in anything you wish, within the forum guidelines of course, and that will show up under your photo and/or name, as the case may be. I currently have 'Proud Postie-Toastie' under my photo because I'm a veteran of surgery and radiation (they worked). I hope this helps answer your question.
Jim
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Thanks...Jim. I figured it out after sending the second email.....
Mebe
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Thanks for the thought, Jim, but it wasn't me. If it was a year ago, it might have been Raydean, who was not a moderator, but was pretty active back then. Or maybe Brucifer? I did a little search; people have been posting links to the list of questions on the anworld site for several years, it seems.
Steve
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Hi Frank:
I posted recently in this section about the difficulty getting consistent and objective results regarding AN size as monitored by periodic MRIs. My last post suggested that different radiologists at different hospitals came up with different interpretations of the same data. My inference was that some radiologists might be doing sloppy work.
Now I have something new to report....
My Houston otolaryngologist (Baylor College of Medicine) was curious about my assertion regarding inconsistent MRI interpretations. He took my last two MRIs and did an experiment. He measured the AN and found an increase in size. Then he measured a benchmark, a nearby organ that does not change in size. He found that the feature was different lengths in the two sets of data. My AN did not change in size as much as we originally thought. Kudos to my doctor for a simple but brilliant test. However, to put it bluntly, this sucks.
This means that different imaging technology is not consistent. There is not a reliable standard of measurement. The scale bar in the MRI image is suspect. The thing that you would expect NOT to be a variable, is.
The point of periodic MRIs is to monitor the growth of the AN with time. As good as the doctors or radiologists may be, the imaging technology may prevent accurate size measurements. I am not sure if it would be hardware or a software problem.
If this kind of discrepancy is widespread, it needs to be addressed. I suggest that we encourage the ANA to approach those knowledgeable and responsible in the radiology and imaging specialty to look into this issue. The implications of this potential "negligence" are far reaching.
Doctors and patients need to be very careful making conclusions from our periodic MRIs.
Good luck,
Ted A
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Hi Ted,
Thanks for the info. Just curious though. I understand the fact that measurements can be off a bit here and there just by the way they are measured. In my case MRIs 1, 2, and 4 were off only .1mm here and there, and the doctor said this didn't mean anything--no growth However, the neurologist for my third AN said the AN had gone from 7 mm. to 9 mm. On this AN I think my doc only looked at the films because I pointed out from the written report that there was a 2 mm. change, and he said that didn't seem right to him. He showed the MRI to some other docs, and they all agreed that the tumor had not grown. All of my MRIs have been done at the same facility and done by the same person. MRIs 1-3 were fillms. MRIs 4-5 were on CDs. It was clear that MRI 5 showed that the AN was a totally different shape. It went from a half moon size to a full moon size. My doc wanted to do GK since there had been growth (even though it was a small rate of growth), but he also said it was a canidate for W & W also--my choice. A panel of five other docs from various fields have reviewed all of the MRIs, and they agreed that the AN had grown. I went to see another doctor for a second opinion about the possibility of having GK or W & W. The doc looked at the written report only and right away said, no growth and continue to W & W. However, when he looked at the fillms and CDs he said, "I change my mind. The AN has grown although only slightly." He said it is a canidate for either GK or W & W, but in his opinion he would continue to W & W. So, at this point, I am W & W until my next MRI in Nov. and then going from there as to what to do. My doc and the 2nd opinion doc said all of the MRIs were excellent pictures from all angles. I guess I am wondering if just by looking at the shape means anything. Seven docs have looked at the MRIs and compared them all and agreed that the last MRI showed growth. What is your thought on this--measurement vs. looking at the dang thing? I hope I have explained this good enough to get an answer to my question. Thanks.
Nancy
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Hi Nancy:
I am not qualified to judge in your particular case. However, what I have learned from my experience is to:
- find a doctor who you trust and who uses a radiologist he/she trusts
- have the MRIs at the same facility or hospital using the same machine
- have the radiologist or doctor meaure three dimensions of the AN in the same way
- have them measure a benchmark (known organ of fixed length in the MRI field) to be sure the length scale is constant.
It sounds like MRIs may have issues with accuracy and precision. One way to guard against this problem is with consistent measurements.
Regards,
Ted A