Just diagnosed and I have questions

[bafisher]

I am a 50 yr. old female who has had hearing loss in my left ear for at least 16 years.  It is gradually getting worse and worse.  I had an MRI of my pituitary gland (it's fine and dandy) where they discovered an AN 1/2" long.  I did the math and it seems to me that this is filling the canal pretty full.  Is this big or am I just thinking that?

I go today for a hearing level test with an audiologist.  I'm positive I have substantial hearing loss in my left ear where this thing is growing.

Next I have an appointment with a local surgeon who did back surgery on me several years back.  I live in Bloomington Indiana and am wondering if I should find a doctor in Indianapolis (bigger city with a huge University system hospital).  Is there a way to find good doctors who specialize in this?  I want it removed so that I don't have further hearing loss.  Am I correct in thinking this way?

Thanks in advance for any response.  I am also new to online forums so bear with me on that also.

B

[ppearl214]

Hi B and welcome.   You've come to a great site for info and support

Do you have a copy of the official written MRI report?  the wording on the report would really be helpful so we can understand your situation so we can try to help.

Please keep us updated how the hearing test goes, as well. Please ask for a written report of the hearing test... they will give it to you right then and there.

In meeting with your back surgeon, you meet with him to see if he can make neurosurgery recommendations for you?  A neurosurgeon, along with and ENT (Ears/Nose/Throat) dr would be of assistance for your AN diagnosis.

Maybe the audiologist you are meeting with for your hearing test can recommend an ENT dr for you?  Just a thought.

Again, welcome... please take your time in reading info here and ask away any questions you may have.  Really a terrific support network here.

Phyl

[Omaschwannoma]

Hi B,

You are starting your journey by asking questions.  I would encourage you to (with paper & pen) write down all questions you have regarding the experiences people here have had with their choices of treatment.  There are the "watch and wait" people, micro and endoscopic surgery people and last but not least, those that have had their AN's treated with radio-therapy (GK, FSR, etc.)  Take a tape recorder to your visit with your surgeon so you don't miss a thing he talks to you about.  Don't be in a hurry (if your tumor poses no life threats) to make your choice in how you will treat.  There are many people here who will help, give you tons of information, and support you in your journey.  I personally had my tumor removed microsurgically in January, 2005.  I have residual effects from the tumor and surgery itself, but two + years post-op they too (well most of them) are improving.  It can take a long time to heal for some of us and others bounce back quickly.  Each of us responds differently to treatments and I've said this before my surgeon told me, "There are no wrong decisions." regarding treatment.  Be sure you look into ALL treatments and then make your decision.  I also would encourage you to seek out doctors that are experienced (meaning thousands of AN's) in their field, whethere it be surgery or radiation.  Location, insurance, recuperation care can have deciding factors in how and who you choose to treat your AN.  Some fly across country, others stay in state, there are many great facilities, doctors to choose from.  My best to you in your educational journey here.  Please feel free to write me back if you so desire.  I know others will be answering your inquiry as well. 

[Boppie]

Dear bafisher,

Close to you there are great facilities and doctors in the Chicago area and in Cincinnati.  I do not exclude Indianapolis, just don't know about that area. 

Your hearing loss has been gradually deteriorating and your tumor is not large at approximately 1.2 cm .  I think 1cm -1.5cm would fill an ear canal.  Beyond that you might get the AN to grow toward the cerebellar pontine angle in the shape of an ice cream cone top or a mushroom cap.  You doctors should be reading the MRI with you and pointing out where this AN is headed next.  You will benefit from consultations with doctors who are willing to lay and discuss all of the pictures and details out for you to see.  Yes, you have time to seek the best options for your treatment.  One lucky detail is that your balance mechanism has probably self adjusted by now, and you will not have balance issues after a surgical treatment path.  I speak as a former AN "attacker", layperson, and friend of the forum.

[Sam Rush]

1/2 inch is considered quite small for an AN.. Mine was that size, and the hearing wasn't worth saving, so I had the simpler translab surgery. did fine.  If your hearing is worth saving, there are other surgical options.. Do not go to any Dr. who doesn't do at least 40 of these a year!!! At House Ear Clinic in LA they do about 300 a year.  Remember, it is a benign tumor and there is no hurry to do anything.

[Jim Scott]

bafisher:

I regret that you've been diagnosed with an acoustic neuroma tumor - but I'm glad you found this website and forum.  You'll very likely find it to be helpful, as almost all of us are AN patients, like you.  We try to offer support and advice, as best we can. 

Your AN - at ½ inch- is relatively small and very likely could be treated with non-invasive radiation.  An approach you may wish to explore.  Microsurgery, should you choose that approach, should only be performed by a very experienced neurosurgeon who has many hundreds of these AN operations on his resume, as it were.  My neurosurgeon (in his late 60's) had thousands.  He did an excellent surgical job and then worked with a radiologist to map the radiation treatment that followed my surgery. The surgery was performed in order to reduce the size of my large tumor (4.5 cm or 1¾"). Both the microsurgery and the radiation were quite successful.  My pre-op symptoms have just about completely disappeared and I feel great, almost 10 months, post-op.  FY: I'm over 60.  Don't let any doctor tell you you're 'too old' for radiation or even microsurgery.  As long as your pre-op tests show you to be in general good health, you should be fine, whether you opt for radiation or surgery or a combination of both, as I did.

I do have to caution you that just because a neurosurgeon is experienced in spinal surgery, that does not necessarily qualify him (or her) to perform AN surgery. Your local surgeon may refer you to a 'big city' hospital or a specific neurosurgeon who is experienced in acoustic neuroma removal surgery.   These operations are long (often over 8 hours) and extremely 'delicate'.  They require an experienced neurourgeon who has done this kind of surgery many times before.  No room for error.  If you go the surgical route. be cautious as to who you choose to perform this surgery,.  Radiation is as much about the facility as the radiologist but the doctor and his experience with treating acoustic neuroma tumors (as opposed to only cancer patients) is crucial, in my opinion.

I hope you'll find this site and forum useful and come back often.  We wish you the very best.

Jim

[Evan]

Bafisher:

I agree with the previous posts in terms of the size of your tumor and treatment options.  I also agree that since there are so few that are diagnosed each year (2500 to 3000) in this country, that while there may be many great neurosurgeons and/or ENT surgeons, not that many have the kind of experience of those who have been discusse in this forum.

On a similar note, the doctor I consulted with yesterday (a neurosurgeon who does both radiation and microsurgery) from Columbia in New York is from the "camp" that if its a small tumor, he likes to treat it by radiation (in his case, GK).  The reason, in his mind is that it is so less invasive than intercranial surgery, and the results, at least based upon the studies, are as good as with microsurgery.  A lot of it may depend on symptoms, and the exact location.

However, as many have already told you, it is benign, it is slow growing, it can be treated, and you have time to research your options so that when you come to a decision, you know that it will be the right one for you.

Good Luck.
Evan

[bafisher]

here is what my mri report says: 
"a densely enhancing mass of the left cerebellpontine angle is visualized, measuring 1.3 x 1.2 x 1.2 cm in AP, medial to lateral, and superior to inferior dimensions.  A tiny portion of the mass extends into the porus acusticus.  The mass abuts the lateral margin of the left middle cerebellar peduncle with minimal deformity."

Can anyone help me understand this?

My left ear has profound SNHL according to my Audiologist's report.

This is scaring me.  Any help is appreciated.

Thanks.

[Evan]

If in an MRI, the radiologist diagnoses an AN, it usually states so, following the portion that you read.  For example, it would say....if the wording had continued....."this represents most likely an acoustic neuroma", or something else, if that is what the radiologist has stated.  So, I guess my question is, whether in the body of the MRI report, in addition to the description there is a "finding" or "diagnosis".  

Of course, as I indicated to you previously, even though a radiologist may suspect something, it is always extremely important to have a neurosurgeon read the films himself.

As others have also said, it is important to see a doctor who "specializes" in ANs.  If you can find one on Bloomington and/or Indianapolis that is a good start.  Search the web for docs and check out their practices, etc.  I would also have my ENT recommend someone who he knows does AN's.  

Just because you are in Bloomington does not necessarily mean that there may not be a good AN surgeon there.  Remember, Lance Armstrong received his care under an oncologist from Bloomington affiliated with the University, when all others thought he had no hope.  So, do your legwork and ask as many questions as you can, and I am sure you will find someone who knows what he/she is doing.

Evan

Evan

[Obita]

Hi bafisher:

Welcome!!

You could probably skip the appointment with your back surgeon if you want.  He/she probably has no idea what an AN is.  Maybe just a phone call instead?  They might know a good Neurotologist/Otologist.  Major universities always have at least one heading up their ENT department.  If you end up chosing surgery over radiation, a neurosurgeon will also be part of the surgical team. 

Good luck to you, Kathy

ps:  Profound SNHL is profound sensorineural hearing loss.  Meaning, the hearing loss is caused by the acoustic nerve being damaged by the AN.

[bafisher]

I apologize but I don't know how to correctly use the forum yet.  Do I just keep talking on this series of posts?

Someone asked if I had a diagnosis on the MRI Report.  On the bottom of the MRI it says "The appearance would be consistent with a vestibular Schwannoma.  A meningioma is also in the differential diagnosis but is thought to be less likely." 

Since my MRI was ordered by an endocrinologist he sent me for the hearing level test and to a neurosurgeon for further treatment.  I am scheduled to see neurosurgeon in Bloomington on 4/9 and am waiting for word of when I will be seeing an otologist in Indianapolis who specializes in AN's among other things for a second opinion.  The ENT I saw yesterday suggested I see both surgeons.

I have not actually seen my MRI yet and am anxious to see exactly where in my body this thing is.

Thanks to everyone who has replied.  I am taking everyone's advise very seriously.

B

[ppearl214]

Just keep posting B... we are here to discuss and support your AN journey as many others here are also newly diagnosed, have been recently treated or have been treated a while back, thus, you will be able to obtain all viewpoints regarding ANs from a patient standpoint.

If you take a little time and peruse the different forums here, you will see and hear many different viewpoints on everything from treatment options to emotions to a little bit of fun and humor and a sense of community.    We truly do know what it is to be in your shoes.

Hang in there.
Phyl

[bafisher]

I just want to make a comment about the reference to Lance Armstrong.

There are several Bloomingtons in the Midwest.  The ones I know of are the one here in Indiana, one in Illinois and one in Minnesota where I believe the Mayo Clinic is.  I think Lance probably went to Minnesota.  I know it wasn't here in Bloomington because although Indiana University is here all of their medical facilities and schools are in Indianapolis.  I know this because I am an IU Bloomington employee.

There is a specialist in Indianapolis.  I haven't researched him yet but I don't think he is affiliated with the University (because his office location is nowhere near the University Medical Facilities) but I was referred to him by the audiologist and ENT.

I'd be willing to travel to either Chicago or Cincinnatti if need be..............

Thanks again to everyone for the info.

B

[Boppie]

Here is a team to google in Cincinnati Dr. Philip Theodosopoulos, Mayfield Group and Dr. Myles Pensak, U.C. Head and Neck Surgery)

Another poster here johnc23 had these doctors.  You might try to make a contact with this person.  I believe I read that johnc23 lives in Northern Kentucky.

[Crazycat]

Balfisher,

          ANs' are typically measured in centimeters or millimeters. Usually, anything over 1 cm is fair game for microsurgery. I was walloped with a 5 cm+ growth along with hydrocephalus that not only deafened me in the left ear, but brought me to my knees with equilibrium problems and impinged or pressed on my cerebellum, creating difficulties on my left side.
   The conversion from centimeters to inches is: 1 inch = 2.54 cm, or, 1 cm = 0.39 inches. So.....just do the math. In terms of inches, my growth weighed or "muscled" in at - because I let it go way too long - 5 cm or, 5 X .39 = 1.95 inches. In terms of centimeters, your growth would be expressed at: 2.54 ./.(divided by) 2 = 1.27 cm.

   At 1.27 cm you may be a good candidate for radiation, cyberknife or gamma knife. Ask your doctors.

Hope this helps, Paul