MORE CONFUSED THAN EVER!

[Tobeycat1134]

More confused than ever
On December 29, 2016 my ENT diagnosed me with a 9mm x 4mm x 4mm AN.  He sent me to a neurotologist; my appointment was yesterday, January 23.  He said that yes, there is an “enhancement” on my MRI, however it could be a number of things, viral inflammation, acoustic neuroma, or fatty tissue.  I had a MRI done November 7, 2014 that did not show a tumor.  Therefore, I was concerned that is was growing rapidly.  The neuotologist could not open the disc for the 2014 MRI for some reason (I had no problem opening it up on my computer at home) therefore he couldn’t tell if there it was a tumor there and it had only been missed when it was read.  I opened it and although I am not a radiologist, I did not see anything on the 2014 MRI.  He wants to do another MRI in 4 months to check for growth.  Symptoms include moderate severe hearing loss in left ear, chronic headaches, tinnitus, and an occasional slight tingling in my lower lip and chin.   How do they know before surgery if what is showing on the MRI is a tumor or something else?  I would love for it to be something else, but I do not want to a chance of losing more hearing and worsening my symptoms. Advise is appreciated.

[ANSydney]

Hi Tobeycat,

Suggestions are that vestibular schwannoma growths are not linear with time and slows down with time ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf ). Let's assume that the MRI in November 2014 is correct in showing no tumor. If so, then sometime in the past two years growth started and it's now up to 9 x 4 x 4 mm.

Your tumor is small so you have time on your side. A followup MRI is a good idea so that growth rate can be established. Another one 6 months later will determined the rate of change in the rate of change. In your case these delays are probably appropriate since you would probably be put on the observation path until continued growth could be established and the tumor got larger than 15 mm. In any case, some authors suggest observation until 20 mm and I've even seem more.

[Willbur]

How old are you? Time maybe on your side.

[Tobeycat1134]

52

[PaulW]

Do you have your radiologists report? What does it say?
Radiologists are normally way better at reading and diagnosing things than the doctors that read the reports afterwards.
As I understand it, there are lots of different bumps you could have that could be an AN.
Depending on how your MRI was done will help determine if it is or isn't, or if they need to do further MRI. Many MRI's are done without Gadolinium these days for safety and cost. They can detect a very small growth or AN without the dye.
What the Gadolinium does help with is determining what sort of growth it is.
Anything with blood vessels will light up so tumors often do, while fat doesn't..

From what your neurotologist is saying it sounds like your MRI was done without Gadolinium which makes it impossible to say if you have an AN or not.
If you did have Gadolinium and the thing lights up like a light bulb on T1 weighted images, and appears as a grey blob on T2 weighted images without Gadolinium then I believe they should be leaning towards an AN.

Disclaimer
Please note I am not a medical professional and all of the above is my personal opinion, anything above could be wildly inaccurate

[Tobeycat1134]

Both of my MRIs were done with contrast. I sent my records to House and USC. Both Dr. Friedman and Dr. Brackman said they had no doubt that it is indeed an AN. In fact it was also present on my 2014 MRI and missed when it was read. Dr. Brackman measured my tumor at 12mm x 5mmx 5mm.  Both Dr. Brackman and Dr. Friedman have recommended that I have it removed by Middle Fossa approach in order to maintain my hearing.  Now the decision is where to go.  My plans are to have the surgery the beginning of July. 

[ANSydney]

Congratulations. Your tumor grew from 9 x 4 x 4 mm to 12 x 5 x 5 mm on the same MRI  Given that significant growth is often defined as more than 2 mm of growth, you have significant growth in "zero" time!

Do you see the tumor yourself on the 2014 MRI? What are your symptoms like?

The current conventional wisdom appears to be to do a 6 month and yearly MRI to establish growth rate for tumors under 20 mm in largest diameter. In Denmark, 95% of those with a tumor under 20 mm are put on wait-and-scan. ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf Fig 1 ).

[alabamajane]

Congrats on making a treatment decision and for consulting two of the most well respected doctors in the business of ANs,
It is not unusual to get different measurements from different medical professionals ,, especially doctors versus radiologists,, mine was read as different sizes by the radiologist and my neurosurgeon. The neurosurgeon saw many more ANs than the radiologist.

As far as facilities or doctor choice,, can't help you there,, but don't think you would go wrong with either one. Both have excellent reputations!

Good luck,,,

[Tobeycat1134]

I did see the AN on the 2014 MRI, once I knew where to look.  My symptoms include hearing loss, tinnitus, headaches and slight tingling in my lower lip and chin.  Dr. Brackmann thinks my headaches are due to balance issues (even though I have not noticed a balance issue).

[ANSydney]

How bad are your symptoms? Can you wait 6 months for a follow-up MRI to establish it's growth pattern?

[Willbur]

54 is a little up there. I would watch and wait since it is so small.

[Sheba]

last year I decided to have a 1.4cm AN removed, rather than wait and watch.  It seems like results of surgery are better when the tumors are not too big.  I am 54.  My decision was also influenced by feeling my insurance is good now, and I don't know how it might be down the road;  and same for my overall health.  I have no regrets, went to Dr F @ Keck and had great outcome.   

many people are able to W&W for long time, many tumors are not actively growing when discovered.  but it sounds like yours is growing based on the two MRIs in last few years. 

middle fossa, especially w/ the docs at keck or house, has very good stats for saving hearing at its current level, but it's not a guarantee.  if you w&w you can also continue losing hearing.

I had hoped they could save my hearing (retrosig surgery) but I did lose it.  In busy places, it can be a challenge but most of the time, I just sit or stand where my good ear is getting the sound.  I may go for a hearing aid (BAHA / Oticon), will decide that later this year.
 

[Tobeycat1134]

Thank you Sheba.  I have scheduled my surgery with Dr. Slattery and Dr. Schwartz at House for June 22nd.  Why did they choose to do retrosig instead of middle fossa.  Just curious.  Willbur, I remember at 30 thinking 52 was a little up there; it's not the same when you are 52 though.