Rapidly growing with minimal symptoms

[djsunshine21]

Can anyone relate? I have been diagnosed for three years. My scan 18 months ago was 1.7x1.6. Latest scan was 3x2.3. I don't know what classifies as rapid growth, but this is much more than I expected. Also my symptoms seem minimal. Hearing slightly deficient but still very usable. I am experiencing small things--like occasional lightheadedness and occasional tingling around the right side of my mouth. Often a dull headache as well. I don't really want to do surgery but I am thinking that I don't need to let this above average growth continue. And since I'm only 37 I'm not really comfortable with radiation either--if that is even still an option for me.

I have been under the care of the neurotologist who would be doing part of the surgery and have set up an appointment with the neurosurgeon as well. It is just really disheartening to think of losing my good hearing to the trans lab approach. They would do retro sigmoid if I want, but I've been advised there is not much chance of saving the hearing anyway at this point.

So I am worried about having the surgery and waking up like another person. I homeschool our children and also teach piano, and surgery will change my life for sure. I just want to still be able to function and continue with what I'm doing when it's all over with.

This is my first post, and I'm really encouraged to find all of you here!

[ANSydney]

djwilliford, welcome to the forum that nobody wants to be a member of, but everyone is friendly.

1.7x1.6 -going to 3.0x2.3 in 18 month is certainly rapid growth. However, you need to check the MRI's results. I got widely differing size numbers reported but the tumor was described as stable. My measurements concur that the tumor has not grown (or only slightly).

I suggest you get the MRI on disk and check the measurements yourself. The viewing package provides measurement tools that are easy to use. Also, take a look at your tumor, does it look almost twice the size?

Your tumor is about the same size as mine as like you I have minimal symptoms.

[djsunshine21]

Actually, getting the disk is on my to do list for the week! Unfortunately I know it has almost doubled. I could tell just by looking at the scan my doctor put up before he said a word. It really floored me because since my symptoms hadn't changed very much I expected minimal growth. I'm lesrning that all the "expectations" and "normals" for this disease don't really mean that much--it's just so individualized.

Thanks, ANSydney.

[ANSydney]

When you get the CD, take measurements of the 18 month ago situation and today. Do not rely on the radiologist measurement since the first guy got it totally wrong. The second guy had different measurements (the correct ones), and stated "stable". He didn't make of note of the previous error from the same place.

I wonder why your neurotologist wait so long for the follow-up MRI.

[djsunshine21]

Waiting that long was my choice not my doctor's. I had the first MRI 3 years ago, a second one 6 months later that showed no noticeable growth, a third one a year from that date showing slight growth. I was scheduled one more year out and I pushed that to 18 months. And here I am!

I'm not sure what you mean about the first guy getting it wrong. When I get the disk that may make more sense to me.

[voron999]

What ANSydney, probably, means - you do not really know if *anything* truly changed between MRI #1 and MRI#2.

If it grew from 1mm to 10mm - that is hard to miss (due to the 9mm absolute change).
But if it (supposedly) grew from 1.7 to 3mm (that is about 1mm in absolute terms) - the difference could totally be due to the human reader and his/her interpretation.  At such small differences, I would like to be shown the before & after pictures side-by-side and explained if the difference truly exists...

My AN is about your size. I am just living my life as before and we'll see what happens.
I am not in a mood for any invasive ways into my head (remember - there is no "Undo" button for those).

[alabamajane]

Measurement just may be CM instead of MM,,,, big difference,,,

Djsunshine21 ,, welcome.
I hope you have received your disk by now and looked at it. Although it's best to discuss it with a doctor as "we" don't always know exactly what we are looking at,,

Also, the location of your tumor will impact your symptoms differently,, and as you say, these present differently in each of us it seems. It isn't like a broken bone that are often similar and treated the same,,, these are so different. And also each of handles our symptoms uniquely,,, what I can endure,, you might find totally disrupting to daily life.

I hope you are able to see a neurosurgeon soon also. That will give you the best info. We are not doctors on here and mostly giving personal experiences and opinions,,, 
Good luck to you,,,
Jane

[ANSydney]

Sorry for the confusion with "The second guy had different measurements (the correct ones), and stated "stable". He didn't make of note of the previous error from the same place". Let me go through it.

I had my first MRI in August 2016 and the radiologist reported the size. I had my second MRI in February 2017. They were both done at the same place, but with different radiologists reporting the results. The second radiologist reported the three sizes which were very different from the first radiologist. The second radiologist reported that the tumor was "stable". The first radiologist got the three figures totally wrong! (Actually, one figure of the three was right).

I wasn't too concerned as I had the CDs and already did the measurements myself, before they were reported to me.

The moral to the story is do not rely solely on the radiologist report. Get the CD and make your own measurements.

You're in the fortunate position of having 4 MRI scans now available spanning back 3 years. If you get the four MRI scans on CD you can see how things have changed. i'd be very interested in the natural history of a tumor over three years.

BTW, are your measurements in mm or cm? I've been assuming cm.

Remember, MRI measurement error is about 2 mm.

[ANSydney]

voron999, I like your statement "I am not in a mood for any invasive ways into my head (remember - there is no "Undo" button for those)."

Yes, there certainly is no Undo button. It would be great if we could have a Sliding Doors scenario where we try surgery, radiosurgery and observation and then go back and chose the one we like best. Unfortunately, we only get one go at this. The carpenter's saying, "measure twice, cut once" is a good one if your building a kitchen. When it comes to our quality of life for the rest of our lives, it's a much bigger deal.

I personally would rather spend many hours before the undoable, look at the evidence, consider all possibilities, talk to a few neurosurgeons, a few radiosurgeons and a few advocates for conservative management. The last of these sets is the hardest, so if you can't find a doctor to talk to personally, the must read papers are two from 2006:

http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502035/pdf/sbs16095.pdf

The author of the first paper, Stangerup, with 552 patients, noted, "Regardless of tumor localization or size, growth occurs only within the first 5 years after the diagnosis". Stangerup has an updated paper in 2014, http://www.bhtinformatie.nl/pdf/ingrijpen.pdf . It states "tumor growth occurring beyond the fifth year of observation is very rare, but is, however, still observed"

There are many other papers regarding conservative management of acoustic neuromas.

You are your own best advocate.

[djsunshine21]

Sorry for the confusion. I was giving the measurements in CM not MM.

[ColleenS]

I know these are slow-growing tumors but it seems to me that a lot - of tumors from this forum grow at a pretty fast pace. It also seems like regrowth tumors are a bit quicker (slivers left behind). I have only been on the site a couple of months but that is what I have noticed. Am I wrong?

[voron999]

Sorry for the confusion. I was giving the measurements in CM not MM.

Well, then!
That is difference in the magnitude of x10 - somewhat important detail that is, really, required to even start talking of AN. 
This changes everything.

Ignore my case, obviously.
I am an MM-scale patient for now.

[voron999]

Measurement just may be CM instead of MM,,,, big difference,,,
..........
Jane

Yes and indeed.
The topic starter should be clear up front about the units.
Changes things entirely.

[ANSydney]

Colleen, my tumor is stable, so add me to the list of non-fast growers.

I image those that have stable tumors report once, while those that have rapidly growing tumors make more entries.

I suspect that regrowth after surgery, if it does happen, is rapid. My hypothesis is that there is more room after surgery to grow into to unrestricted to grow.