ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: kathy g on November 11, 2010, 01:16:18 am
-
Just had an MRI and there was some good and bad news.
The AN decreased dramatically in size to 10x7x8 mm. The doctor said it is because the cells were creating cysts with water in them. Now that the cells have been killed by the gamma knife, the mass of water is not in the tumor. Still deaf in one ear.
The bad news- I have another mass on the greater wing of the right sphenoid bone, which has increased in size 4 mm. The doctors do not know what it is, suggested another MRI in 6 months.
-
Kathy ....
We will celebrate the good news of a shrinking AN and pray that the other mass remains stable or also shrinks, not grows.
I have no idea what or where the greater wing of the right sphenoid bone is so do not know what the seriousness of it might be.
Thoughts and prayers.
Clarice
-
Cheers to your shrinking tumor, I'm sorry you have another spot that needs monitoring, but the good news is that the Dr's don't want to take any immediate action.
Liz
-
I agree. I was ready to have another gamma knife procedure, but they do not want to do that since they do not know what it is. The doctors do not think it is urgent.
-
Kathy ~
Thanks for the MRI update. I'm sorry about the other growth and hope it'll remain stable - but congratulations on your incredible shrinking AN!
Jim
-
Kathy, I am amazed at how much your AN has shrunk in volume -- 95% shrinkage! Fluid or no, that is an amazing result! Your AN is surely putting less pressure on your cranial nerves now. Congratulations on a wildly successful treatment.
I'm sorry to hear about the sphenoid growth. Believe me, I know what you're going through. On my first followup MRI series after getting CK, the radiologist found a second tumor on my hypoglossal nerve. I thought I was dreaming (a nightmare). Like you, I am in watch-and-wait mode on that second growth.
Best wishes,
TW
-
Thanks for the good wishes. You guys know how stressful this is.
Tumbleweed, do you still take all of those herbs, like Bromelain? I took some of them. Do you know where your other tumor is? Has it grown?
Best,
Kathy
-
Congratulations on your "shrinkage!" I would be soooo happy to get news like that. You bring hope to all us other radiosurgery patients!
I'm saying a prayer right now that your newest problem spot will be a non-issue.
-
Thanks for the good wishes. You guys know how stressful this is.
Tumbleweed, do you still take all of those herbs, like Bromelain? I took some of them. Do you know where your other tumor is? Has it grown?
Best,
Kathy
Yeah, I still take the bromelain. Also Flavenzym, vitamin E, vitamin C, calcium/magnesium blend and curcumin. If my next MRI shows stable tumors, I'm going to start weaning myself off the bromelain, Flavenzym and curcumin (turmeric extract), which are all anti-inflammatories. I've been taking them for around 2-1/2 years and am thinking I can probably stop soon, as I'm over two years post-CK and probably not too vulnerable to tumor swelling at this point. I may elect to continue the bromelain, which digests fibrin, if my AN has shrunk some more over the last year, as I think it may have contributed to the dramatic shrinkage I saw in the period between 5 and 11 months post-CK (that may have been coincidental; it's impossible to say).
The other tumor is on my hypoglossal nerve. It had not grown for 1-1/2 years as of my last MRI series taken last December.
Best wishes,
TW
-
Hey Kathy,
congratulations for the excellent news, wow this shrinkage is unbelievable.
I am very surprised that the doctors can't at least say what this other growth is, and I know that you have consulted quite a bit about that. Hopefully it won't cause any problems.
All the best,
Marianna
-
I had not seen a doctor for the last 6 months about my AN. Now, will start again about this other mass. Hope it will not cause me as much confusion as it did for the last 2 years with so many different opinions and different measurements. I dread that.
I wish I were like you Marianne and could read my MRIs. All I can see is little white dots.
As for the AN, the MRI says it is "an extension of the mass into the right internal auditory canal with mild expansion in the porus acousticas." So, maybe in moved, like a blob oozing into my ear.
-
Well, it is one thing to be able to "look" at the scans, and an entirely different thing to know how to interpret them. I am always amazed by how the radiologists can pick up any tiny irregularity and understand what it is. This of course needs years upon years of training. I guess your case with that other mystery mass proves this point, as even the experts cannot say what it is.
I consider myself lucky that I didn't fiddle around with that first diagnostic MRI. Imagine stumbling upon this glowing mass when scrolling through the images, without knowing what it was (I had never heard about acoustic neuromas in my life). Even the thought of this freaks me out completely. Fortunately it was my doctor who informed me and explained what it was.
I remember about all this confusion with the different opinions for your AN. I really hope you won't have to deal with that sort of stress again.
Marianna
-
Thanks so much. I am very grateful that my AN has decreased, not sure why. I wish it to happen to everyone on this list.
I agree, experts are able to see things in the MRIs that we cannot. Where did you learn to read your MRI?
-
As for the AN, the MRI says it is "an extension of the mass into the right internal auditory canal with mild expansion in the porus acousticas." So, maybe in moved, like a blob oozing into my ear.
From this quote, it seems your AN began in the CPA (cerebello-pontine angle) and then grew laterally (toward the outside of your head) into your internal auditory canal (IAC), which is very common. The IAC is a bony canal that provides passage for your facial, vestibular and hearing nerves, as well as the labyrinthine artery. The CPA is a roughly triangular space defined by the boundaries of the brain stem, the cerebellum, and the inside of the skull. The porus acusticas internus (which the "porus acousticas" in your quote no doubt refers to) is the medial (e.g., inside, or closest to your brain stem) opening of the IAC. So, from your quote, I glean that the medial extent of your IAC was slightly expanded in size by the tumor as it grew on the inside of the IAC. This is par for course with ANs and is no cause for alarm.
A few hours of study will make you quite familiar with reading your MRIs on a basic, amateur level. Here is a quick primer on how to do it:
1. Each "series" has many images contained within. Learn how to open each series in turn and advance one by one through its images. The images with contrast will most clearly show the tumor. Some series won't show the tumor at all, while others will show only one or several images of it. As you advance through the images, write down the image and series numbers for those images you find that most clearly show the tumor. Note the image in each series that shows the tumor at its largest size (in which the image was taken at a "slice" through the widest portion of the tumor).
2. Now note the letter notations on the right, left, top and bottom of each image to determine whether each denotes the top, bottom, left side, right side, back or front of the skull. For example, the notations might say "H" at the top of the image to denote the top of the head and "F" at the bottom to denote the bottom of the skull, toward the feet. They might say "A" (antero) and "P" (posterior) along the left and right borders to denote the front and back of the skull, respectively. Other notations are sometimes used, but you can pretty quickly figure them out.
3. Each image should show a scale in centimeters at the bottom. Take a piece of paper or a post-it note and mark on it the length of 1 or more centimeters (cm). Be aware that the scale (the apparent length of 1 cm) will change if you zoom in or out on the image. Now use your post-it as a yardstick of sorts to measure the span across the tumor from top to bottom, side to side and from front to back. In order to do this, you'll need to figure out which aspect (side view, top view, view from the bottom, view from the back or front of the head) you are looking at the tumor from in the current image. Again, the notations at the top, bottom and sides of each image will give you this orientation. You will need to look at the largest images in different series in order to determine all three measurements (each image will only show you two dimensions and thus yield only two measurements).
It's a bit more complicated than this. For example, measurements are taken at an angle across the widest span of the tumor in each of the three dimensions -- oblique transverse, AP (antero-posterior) and cranio-caudal (or top to bottom) -- to include lobes of the tumor that protrude beyond what would otherwise be a symmetrical shape. The optimal angle of measurement is highly subjective, and each radiologist will potentially come up with a slightly different measurement as a result.
Caution: the smaller the tumor is, the harder it is to tell whether you're looking at the tumor or just the cross-section of a blood vessel, for example (which appears as a tiny dot). In the end, your doctors are the only ones qualified to draw conclusions from reading your MRIs. But you can learn a lot by reading them yourself, and the more you study them, the better you'll get at being able to see for yourself what's going on inside your head.
Best wishes,
TW
-
Thanks so much. I will try it.
-
Just a small thing to add to Tumbleweed's very explanatory post. Depending on the software, there may be a measuring tool available in one of the menus (usually it shows like a ruler). You can select it and drag your mouse across the dimension you want to measure and voila, the measurement appears on the screen. I had MRIs at three different locations, but this tool was always available, although in a bit different form. It is calibrated, so that the dimension you measure is the same, irrespective of the magnification.
Marianna
-
One other thing: I've found it somewhat hard to measure with certainty the transverse dimension of an AN that doesn't quite fill the entire IAC. For example, the lateral extent of my AN stops about 2 mm shy of the fundus (the bony partition between the IAC and the labyrinth). The lateral extent of the canal appears to be slightly lit up compared to the surrounding healthy area but is nevertheless a hair darker in contrast than the tumor itself (more grayish than white, almost like a shadow effect). Compare your own transverse measurement to that cited in your MRI report. If your measurement is significantly larger than the MRI report's spec, look more closely at the image to see if maybe you included an ever-so-slightly darker area inside the IAC that may not be tumor tissue.
Best wishes,
TW