talk about confused!!!

[bikerguy]

house of ear , dr. freeman called and said small an, says surgery is the best route. hershey med center dr. says dont worry unless the mri reads over 4mm. that its possible its nothing. just looking for someone who cares enough to study this small thing in my ear!

[Kerrybr92]

Although I did not have my surgery at House I know that they are very well respected.  I am not sure how experienced in Acoustic Neuromas the Doctor from Hershey is.  Possibly this is a situation where a third opinion would be a great idea for you.

This is hard enough to go through when you know what to do but when you get conflicting advice it is even harder.  But I am sure you will find the information you need.

Good luck.

Kerry

[arizonajack]

House always recommends surgery. That's what they sell.

I got the same pitch when I sent my MRIs a few years ago.

I'm fortunate to live in Phoenix where the famous Barrow Neurological Institute is located. BNI has an Acoustic Neuroma Center and does both surgery and radiation. I had a consult with a neurosurgeon, a neuro-otologist, and radiation oncologist, reviewed all the options and opted for radiation since I no longer had any hearing on the AN side.

I recommend that you be evaluated by a facility staffed by acoustic neuroma specialists that do both radiation and surgery and explore all of the options.

By the way, it is possible to have tinnitus in both ears and have an AN on one side. I had tinnitus in my good ear for about ten years before it started on the AN side.

Your bilateral tinnitus might have more to do with 28 years working in a noisy environment and might be unrelated to the AN.

[bikerguy]

oh, yes! i feel like im being robbed,kicked in the butt, and left out in the cold. did anyone ever hear of anything less then 4mm could be nothing? has to be something in my opinion! i live in pennsylvania. from the research i was doing, pittsburg or philadelphia is the better hospitals around for treating these an's. research, research and more research!!!

[arizonajack]

Obviously, the Hershey Med Ctr Dr is not the one you should be consulting about this.

Mine was under a centimeter and the shape of a Tic Tac when I was diagnosed and it took out my hearing and caused me balance issues.

Even a small AN is problematic.

Check out this facility that was listed on the ANA website:

Jefferson's Multidisciplinary Brain Tumor Center
909 Walnut Street, 2nd Floor
Philadelphia PA 19107

Telephone: 215-955-7000
Fax: 215-503-7038
Website: www.jefferson.edu/neurosurgery


Statement about the Center

Our multidisciplinary team has worked together for over 18 years in the management of acoustic tumors. We believe in the integrated care of acoustic tumor patients, utilizing the most suitable tool(s) available. The team evaluates between 40 to 60 acoustic tumor patients a year with a cumulative experience of over 750 acoustic tumor patients. Among our innovations:
- William A. Buchheit was the first to establish neurophysiologic monitoring of the VIIth nerve during acoustic neuroma surgery.
- Development and ongoing refinement of fractionated stereotactic radiotherapy.

https://www.anausa.org/resources/medical-resources/medical-center-directory/39-menu-articles/medical-centers-1/165-jeffersons-multidisciplinary-brain-tumor-center

[Echo]

Hi Bikerguy!

Definitely check out Pittsburgh, they have an outstanding reputation and are mentioned many times on this forum.  I know of two Canadians who travelled there for their treatment.

If you haven't already done so, listen to the Webinars on this site.  They were extremely helpful in providing me with info when I was going through the early decision process.

Cathie

[lark114]

I live in Philadelphia.  I have a 1.2 cm AN right side.  Minor hearing loss, balance issues and tinnitus.  I went to see Dr. David Andrews at Jefferson Hospital.  He said I didn't need surgery and recommended radiation (I should add that he is the Director of the Stereotactic Radiation Dept, so I am not surprised he told me I should have radiation).  Anyway, I was all set to have radiation and at the last minute I changed my mind for multiple reasons and have decided to go to USC in LosAngeles with Drs. Friedman/Gionatta.  My surgery is scheduled for August 19.   I know Phila has great hospitals (I work in one), but I feel that they just don't do enough of these surgeries on a weekly basis for my comfort level.  My feeling was, if I am going to have this thing taken out, I want it taken out by someone who can pretty much do it with his eyes closed.   

If you should decide on surgery, you must find out how many AN surgeries they do per week.  Other neuro surgeries don't count.  Same goes for radiation.

Good luck.

Linda

[bikerguy]

thanks for the replies! was wondering if jefferson hospital has a dr. to where you can send your mri to without a visit? kinda like the losangeles hospital-dr. friedman. was on there site and coulnt find anything but to make an appointment!

[PaulW]

The doctor is right something less than 4mm could be nothing. Saw a friends MRI a while back with a something that was possibly 3mm x3mm  x1mm.  It was too small to call.. It only appeared on one frame of the MRI and they weren't prepared to diagnose an AN on just a single slice

[bikerguy]

now i feel like i'm getting somewhere. PAUL W i need to ask, what was the outcome of your friend?  anyone else on here that was diagnosed, then mis diagnosed? i am still on the watch and wait.

[PaulW]

They were never diagnosed because the blip on the MRI was too small.
They had balance issues, which lead to the MRI. I believe the report said possible vestibular schwannoma.
Their balance issues went away.. don't know what happened after that. They haven't contacted our support group again and that was about  4 years ago. So assuming all is well. Mind you even if it did grow at the rate of 0.5mm per year (this is the average rate of growth for AN's inside the Internal Auditory Canal) as opposed to ones outside which grow faster. The tumour would only be 5mm x5mm x 3mm still less than one tic-tac
In my humble opinion, getting your head cut open for something, slow growing and smaller than a tic-tac, just isn't worth the risk.
For hearing and facial nerve preservation they regularly leave behind far bigger chunks.

[leapyrtwins]

From what I've heard about House, 99% of the time they say surgery - because after all surgery is what they do.  They are the pioneers of AN surgery and they do lots of them.

Most people with an AN the size you are describing (which is small) have radiation or watch & wait as an option; so I wouldn't rush into surgery.

It's possible there could be something that makes surgery a better decision in your case, but I'd definitely get a 2nd opinion at the very least.  Some people get many more opinions; depends on your comfort level.

Jan

[CHD63]

Hi bikerguy .....

See: http://acousticneuroma.keckmedicine.org/  for the address for where to send your MRI, etc. to Dr. Rick Friedman for a free consultation.

Clarice

[bikerguy]

i had 5 opinions, opinion 1, neoro dr. lancaster pa. says too small cant be sure what it is. opinion 2 &3 lancaster pa. ent dr.s say my tinnitus is work related and didnt want to hear me talk about an,s!requested counceling.  opinion 4 dr. freedman said yes i have an an, said surgery is the best. opinion 5, hershey med center hershey pa said too small, not to worry. really, all i want to know is, if i have this an or i dont! thanks for all your replies!!!

[ANGuy]

I don't know if a true "yes or no" answer is available to you.  I do have two strong opinions at this point and keep in mind these opinions are not based on any kind of science or great wisdom on my part, they are just my opinion.  One, I would discount the the ENTs that are so sure you don't have an AN and that you need "counseling" unless by that they mean some kind of tinnitus retraining therapy.  They may be correct that you don't have an AN, but I don't see how they could be so sure.  I also wouldn't get my brain cut open at this point with so much uncertainty as to whether you have an AN or not.

Whether you have one or not, at this point, I think WW, also know as "observation" is the way to go.  IF you do in fact have an AN, and it grows, it will be apparent over time in subsequent MRI's.  If the time comes that you are certain you have an AN, you can THEN decide on the best course of treatment.  Keep in mind I am WW myself, that I support the idea of WW and am somewhat bias in that regard.