Newbie & Scared

[Tobeycat1134]

I have just been diagnosed 12/29/2016 with AN 9mmx4mmx4mm; 52 yrs. old.  I went to the doctor because of issues with hearing and headaches.  Hearing loss in left ear is Moderate Severe.  I have also been having periodic Tinnitus. I realize it is still small, however, my concern is that 2 years ago I had a clean MRI and it is already 9mm. I am afraid to wait and watch, because I am concern that it is fast growing.  I do not want to lose more hearing and especially concern about facial issues.  Which surgery is has the least complications? The idea of endoscopic is appealing to me, but I notice that many are against it on this site.  I live in Florida.  Whom would you recommend as a surgeon? 

[ANSydney]

Hi Tobeycat, you have an interesting and unique situation in that you fortuitously have an MRI from 2 years ago that is clear. This is valuable information that brings up a series of questions.

1) Did your MRI from 2 years ago use gadolinium contrast agent?
2) What prompted the MRI two years ago?
3) Can you think of an event within the last two years that may have triggered the AN (blow to the head, loud sound, excessive mobile use, dental x-rays, etc)?
4) Is your tumor totally intrameatal (that is, does not extend into the CPA)?

Given the size of your tumor, you're probably going to be put on wait-and-watch.

Stangerup in 2006 ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf ) found that tumors only grow in the first five years (Fig. 3) and that growth is most rapid in the early years and roughly grow half as much each subsequent year (Table 1).

To answer your question about which surgery has the least complications, the answer appears to be, radiosurgery. If the question is changed to which treatment has the least complications, the answer for tumors less than 20 mm appears to be, observation.

You are in a very unique situation with a clear MRI 2 years ago. The MRI with the abovementioned article will give you insights. The medical community, and us diagnosed with an AN, are going to be very interested in your case. Your growth rate going forward is going to be most interesting.

If I were in your shoes, I would have an MRI in 6 months, 1 year and 1.5 years and see not only what the tumors growth rate is, but also the rate of growth rate.

I don't think there is anyone else with a recent MRI before getting an AN anywhere in the world.

[Tobeycat1134]

1) Yes, Contrast agent was used.  I have contacted the imaging center to send me a cd to take with me for my initial appointment to make sure is was not missed at the  time  the MRI was read.
2) The MRI was done to rule out MS
3) I have had dental x-rays about 1 year ago, but I didn't think that caused AN
4) Since I am a Newbie, I am not sure I understand the question.  When I have the report in front of me I will copy what the report read.

I really am reluctant to do radiation because to the potential for other cancers.  I am a breast cancer survivor and it just makes me nervous to do anything that might cause any type of cancer.  I am willing to watch and wait, but I don't want to let is get greater than 2 cm.   

[ANSydney]

Nobody knows what causes acoustic neuromas, but one of the suspects is excess dental xrays. Take a look at https://www.anausa.org/smf/index.php?topic=18740.0 to see a discussion.

With regards to question 4, intrameatal means confined to the inner ear canal and CPA means cerebellopontine angle, which is a space "after" the inner ear canal. Larger AN tumors are often described as ice cream cone shaped; the cone is in the inner ear canal and the ice cream is in the CPA. If you look at you MRIs you'll see if yours extends into the CPA. Anyway, the main thing is the size is 9 x 4 x 4, which is small and gives you options and time.

The chance of malignancy transformation after radiosurgery is less than death from conventional surgery. Anyway, wait-and-watch for a while is probably what the experts will recommend. Keep us posted.

[alabamajane]

Tobeycat,
Welcome,,, sorry for your diagnosis,, as you probably know by now, for the most part  we are not medical professionals so info given is opinion or our personal experiences,, this is a very personal decision that you will have to make,, do your research and go with "your gut" feeling,,,

I see you are in the Panhandle,, there is a support group in Mobile but probably won't meet again until Spring,,the group leader is on the willing to talk list also.  I had my surgery at UAB in 2011. If you'd like to talk or ask questions, just PM me. I'd be glad to share my thoughts.

Good luck and let us know. It is a scary, hard time. But you will get through it,,,

Jane

[bird33]

TobeyCat,

Sorry about your diagnosis.  Fortunately, you have options.  As you know, all three options are available for your size tumor, age, and presentation.  Ultimately, for me, the decision revolved around  how I personally wanted to approach the problem.   

The responses to your post seem very informative and all I would add is get a couple of opinions and see what is right for you.  It is not a rush, so rest assured you have some time to gather information and see what feels right for you.   In Tampa, you will find an expert in this topic.  His name is Loren Bartels.  I spoke with him and he is extremely well informed and very experienced with all the options.  He has telemedicine options if you want to discuss your case remotely and he will look at your MRI. 

If you read my post, I had similar concerns about radiation, although it is not evidenced based.  As what was stated by an earlier post, the risk of dying of a secondary sarcoma after SRS at age 52 is less than the risk of surgery, but both are extremely low.  The way I looked at it was that it is good to have options.  And they are all effective options.  Maybe I am cynical because of my profession, but as bad as it is to have this diagnosis, it is comforting to remind yourself that you have an overwhelmingly favorable prognosis for an excellent outcome no matter what you decide.

Best of luck and keep us updated!!

[Tobeycat1134]

This is the finding in my last MRI:

There is an enhancing intra canalicular lesion on the left measuring 4 by 9 by 4 mm.  The right 7th and 8th nerve complexes and CP angle are unremarkable.

Ventricular system is normal with no dilatation or shift present. Brain signal intensity is normal.  The major arterial structures and dural venous sinuses demonstrate normal flow void.  No orbital abnormality is present.  The sinuses and mastoids are clear.

4 x 9x 4 mm enhancing left intra canalicular lesion consistent with vestibular schwannoma.  Normal appearance of the brain.

[bird33]

By report it seems like this is an intrameatal tumor that could be approached by middle fossa if hearing preservation is attempted.  Depending on how functional your hearing is currently would factor into the decision as well.  Of course looking at the MRI and not the report by an expert (and not me!) and going over your options with people that do this for a living is what you need to help guide you towards the best decision for YOU. 

[mandihester]

I was diagnosed in August with a 1.5cm AN which is considered small/medium.  I had all the options available to me but chose to have surgery.  I didn't want any more permanent damage to occur from the tumor so I knew I wanted to get treatment right away.  I had retrosigmoid surgery on October 31 in hopes of preserving my hearing because my hearing was fine.  My biggest symptom was dizziness, lack of balance, and headaches.  I was beginning to have some tingling in my face as well but nothing too major there.  The outcome of my surgery is pretty good, I think.  I did lose most of my hearing on the tumor side but it's not entirely gone and it's still too early to tell what the final result of my hearing is but at my first post op audio gram, I am a good candidate for a hearing aid.  I do have terrible tinnitus at times, but I'm happy with my result.  I too, like you, was concerned at the chance of developing cancer from the radiation.  It was a personal decision that I had to make but I'm happy with mine.  Best of luck to you!
I've heard that Shands in Gainesville has great neurosurgeons.  If your close enough to Georgia, I definitely recommend Emory and Dr. Olson who did my surgery. 

[Tobeycat1134]

Who at Shands in Gainesville?

[alabamajane]

Tobeycat
One of the Drs there that  I've heard of is Dr William Friedman. There is Dr Pincus also but Friedman is the one I've read about doing ANs.

[mandihester]

Shands is the University of Florida Hospital
https://ufhealth.org/uf-health-shands-hospital