need advice

[mramadhin]

Recently diagnosed with tumor size 3.1cm x 2.1cm x 2.2cm.
Have anyone had this size treated by radiosurgery?
My ENT asked that i schedule an appointment with a Neurosurgeon.
I am based in Long Island NY- any suggestion or recommendation in regards to Neurosurgeons in NY.
tHANKS

[Abetpds]

Hi mramadhin,
So sorry that you have to join this club.  Mine is 2.7x2.5.2.6cm in my left ear.  Have lost all hearing but no other symptoms.  I was so scared when I found out and right away called Keck Hospital in LA to schedule a surgery -- but after reading posts from this forum, I calmed down and since have met with 3 surgeons and cosequently cancelled my surgery appointment.  I decided to wait and watch and will be  doing MRIs every 6 mos to monitor growth.  Even tho it is big, I don't plan to do anything unless my pre-operative symptoms are that bad.
This is the only procedure where I would go in feeling pretty good and come out with all kinds of issues. 
First thing to do is calm down, read up as much about this tumor as you can, talk to as many people and when you do meet a surgeon, make sure you ask the questions in the ANA website.  Always ask for other options besides surgery and depending on how old you are, you may elect to just wait unless your symptoms are that bad.  I am 69 so I decided to wait.
Keep us informed.
Regina

[mramadhin]

Thanks for the reply.
I am 57 years old and have an appointment on Thursday 18th with Dr Michael Sisti at Columbia in Manhattan NY.
I will post his findings.

[JLR]

I had surgery with Drs. Selesnick and Stieg at NY Presbyterian WeillCornell.  I have heard that Dr. Sisti is an excellent surgeon.

[ANSydney]

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

The main thing to know is that these are slow growing tumors so there is no need to rush into a decision. Do your research, talk to professionals and read some papers to get a handle on this problem.

What symptoms are you experiencing and how long have you had symptoms that can be attributed to an acoustic neuroma?

Talk to at least two surgeons. ENTs will recommend translabyrinthine surgery and neurosurgeons will recommend retrosigmoid. Talk to at least two radiosurgeons. Read papers on acoustic neuroma / vestibular schwannoma. Read papers on conservative management in particular. Some good ones to start with are:

http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf
http://www.elsevier.es/en-revista-acta-otorrinolaringologica-espanola-402-articulo-conservative-management-vestibular-schwannoma-S2173573514000957
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502035/pdf/sbs16095.pdf

Your tumor size of 3.1x2.1x2.2 cm is a bit odd. Some radiologists include the intrameatel (the cone of the ice cream cone) portion of the tumor. This may be the case in your report. The dimension of concern is the 3.1 cm one.

To answer your question about radiosurgery, radiosurgeons are more concerned by tumor volume than linear dimensions. The "good" cutoff is 10 cm3. In your case, if the dimensions are indeed correct, your volume is likely to be about 7.5 cm3. Most radiosurgeons will find that acceptable.

Have you got a CD of your images? These contain measurement tools so you'll be able to get more detailed information.

[riabovamd]

ANSydney, how did you calculate the volume?  If you multiply 3.1 by 2.1 by 2.2 it will give you 14.3 cm3.  Is there a trick?

[ANSydney]

If you have a 3.1 x 2.1 x 2.2 tumor the shape of a rectangular prism, the volume would indeed be 14.3 cm3. However, for a tumor the shape of an ellipsoid, the volume is 4/3*PI*r1*r2*r3. This gives 4/3*3.14159*1.55*1.05*1.1 = 7.50 cm3.

The intrameatal volume is negligible for a tumor this size.

The vestibular schwannoma literature likes to use the approximation of multiplying the 3 diameters together and halving the number. This approximation gives you 7.16 cm3.

(In my case, I estimated the volume by superimposing an ellipse in both the axial and coronal views, ensuring that the appropriate matched dimensions matched. If the shape is irregular, ensure, by eye, the ellipse has roughly the same amount of tumor outside the ellipse as inside. This "more accurate" figure has a very small effect on the calculation and certainly less than the abovementioned approximation sometimes used by the literature. The intrameatal volume was a very small addition to the overall volume.)

[mramadhin]

My symptoms are hearing loss (currently 40% good) and Tinnitus ( a constant mild whooshing sound) which started about 1 month ago.
My MRI report reads: "The mass measures approximately 3.1 cm in traverse dimension,2.2 cm in AP dimension ,2.1 cm in longitudinal dimension.

[ANSydney]

From http://the-medical-dictionary.com/acoustic_neuroma_article_8.htm:

"Most surgical authorities measure that portion of the tumour which is in the cerebello-pontine angle, unless the tumour is confined to the internal auditory canal when it is called intracanalicular and the dimensions can be given. On the other hand, most radiotherapists (Sekhar et al 1996), including Tomasevic et al (1988) include the length of the internal auditory canal in tumour measurement. The internal auditory canal measures some 10.6mm +/-2.2mm (Saka****a and Sando 1995) and is shown measured in Figure 7. In Figure 8, a medium tumour, measuring 2.1cm in the cerebellopontine angle, is shown. When the length of the internal auditory canal is included, this small tumour assumes the more formidable dimensions of 3.2cm (Figure 9)."

Given the disparity between your three measurements your tumor dimensions may include the intrameatal portion. I think its important to ascertain this.

Given that your symptoms are recent, I suggest that rather than waiting the "usual" 6 months for your follow-up MRI that you do one at 3 months. This is to catch the possibility of rapid growth.

Do you have your MRI on CD? If not, I suggest you get it and personally ascertain size.

Talk to neurosurgeons and radiosurgeons to get their advice on options. To double check your own MRI measurements, get them to show you the dimensions on a printout. Read professional papers on this perplexing disorder.

[SP]

Hello mramadhin,

this is really stressful diagnosis to receive ; usually an AN is a slow growing tumor & so typically there is time to consider your options here.... the default position is usually quoted as surgery until you begin to investigate potential other options.

My AN is also considered big: ie over 3.0 cm. After all the heartache of searching for the right treatment for me i decided on CK with Dr Chang & Dr Soltys at Stanford in 2015: details are documented here:
https://www.anausa.org/smf/index.php?topic=22640.msg979769729#msg979769729

I still have usable hearing in my affected ear  but it has continued to decline since treatment . I'm heading towards my 2 Year  post treatment MRI in August ...so far I'm feeling OK with some days better than others, sometimes headaches, wonky balance and ear pain...but not usually so much to keep me down.

Best of luck with your decision...

Stella

[Abetpds]

Just wanted to give an update after my 3 month MRI.  There was no change from the last one! Yaaay.  Other than hearing loss and some twitching of the upper eyelid, I am doing well. I would like to think that it is not growing because of some things I'm doing -- Ayurvedic medicine for tumors, Frankincense on the nape and tumor location-behind ear, strenuous workout with a trainer and being 69 years old!!  I am happy with W&W.  Booked a cruise on Sept 19 to the Caribbean   Feeling good.  Think my husband is more worried than I am!!

[ANSydney]

Congratulations Regina. Good to hear your tumor did not grow in the 3 months. Keep an objective eye on your symptoms (record as many objective measures a possible).

No growth and no sustained progress in symptoms could mean that you can just keep observing.