Recently diagnosed doctors dismissing radiation

[Reison]

Hi - new to this so please bear with.  I was very recently diagnosed by my ENT based on MRI results with a 6mm, left ear AN - I have minimal hearing loss, annoying ringing in the ear but no balance/vertigo issues (I have not seen the specialist/neurosurgeon yet, btw - appt scheduled for later this month).  My question is has anyone else experienced Doctors immediately dismissing radiation as an option?  I have been reaching out to several doctors for perspective - my ENT, my primary doctor, a doctor that helped me with a previous unrelated issue, etc and all just immediately assumed surgical removal was the only way to go.  Based on initial research, I've seen some promising results posted on radiosurgery and some concerning ones around resection.  Is there a bias towards surgical removal as the best option?  (even the receptionist at the Specialist's office told me "my surgery would likely be scheduled for March"  - when I asked her do these things always require surgical removal she replied "well, some people decide to wait and see but eventually, they have to be removed").  Would appreciate advice and thank you.

[Jim Scott]

Hi, Reison ~

Welcome to the ANA discussion forums.  I'm sorry to learn that you've been diagnosed with an acoustic neuroma but since you have, I believe you'll find this website - especially the forums - a good resource.

To address your question: no, for a 6mm AN surgery is not your only option despite what the doctors you've spoken with seem to indicate.  Your AN is small and small ANs are usually amenable to radiation treatment.  In some instances, radiation may be problematic due to the location and/or configuration of the (benign) tumor but that is relatively rare. 

There is the possibility that the doctors you've consulted are simply not up to speed on radiation procedures for AN patients and are telling you, in essence, what they learned in med school 25 years ago.  That information is outdated, to be kind about it.  I suggest that you consider contacting doctors who are experienced in radiation treatment for acoustic neuromas.   

Check here for the ANA Physicians Directory to get started.  http://www.anausa.org/index.php/medical-resources/physicians-directory

This is not a listing of every doctor in the U.S. that treats AN patients - but it's a start - and I hope it helps. 

Jim

[Reison]

Thanks Jim - appreciate your insight and the link.  I've seen quite a few of your postings in these forums - thank you for being so helpful to those of us with ANs

[robinb]

I am curious to know why UPMC and its doctors have been removed from the ANA list of recommended medical centers?

[rupert]

After I was diagnosed with an AN,  my ENT and primary family doctor both recommended Gamma Knife.  The neurosurgeons and other specialists that I talked to said either was ok. 
At 6mm,  more than likely you have all options.  It is good to get several opinions from doctors in all areas.

[Tumbleweed]

Hi, Reison, and welcome to the forum:

When I was diagnosed, my doctor -- an otoneurologist -- immediately ruled out radiation. He said I needed surgery, and fast. He was misinformed on both counts. I subsequently had a consultation with a neurosurgeon who also advised against radiation; his reasoning was based on data that was roughly 40 years old. That is, although he was a brain surgeon, he was entirely ignorant about the last several decades worth of data about success rates with radiation. Yet another neurosurgeon -- this one, a lot more open-minded -- admitted that I knew a lot more about radiotherapy than he (because of all the research I had done). But the bottom line is that I chose CyberKnife (CK) radiation treatments in the end (for my AN), and my treatments were incredibly successful. (My tumor shrank over 70%, my balance recovered at least 80% and my tinnitus decreased in volume around 90%; YMMV.)

You owe it to yourself to get an expert opinion from a doctor who specializes in radiotherapy (e.g., CK) or radiosurgery (like GammaKnife) for treating acoustic neuromas. Dr. Steven D. Chang is one of the world's leading CK practitioners. He operates out of Stanford University Medical Center in California and will review your MRI and give you his recommendation for free. His email address is sdchang@stanford.edu.

Your tumor is very very small. If you've only had one MRI so far, then you should probably wait 6 months until you get a followup MRI before you consider getting any type of treatment. The second MRI will tell you whether or not your tumor is growing. Some ANs stay the same size for decades and needn't be treated. I also have a hypoglossal schwannoma (tumor on the 12th cranial nerve); it hasn't needed treatment because it has stayed the same size for the past 5 years (possibly longer; it was only discovered 5 years ago).

No matter what you do, please get a second opinion from an expert in radiation treatments. Then you'll have both sides of the story and can choose which approach feels right for you.

Best wishes,
TW

[PaulW]

Your AN is very small.
The ANA advocates seeking multiple opinions
http://www.anausa.org/index.php/overview/acoustic-neuroma-decision-tree

I guess the ANA advocates getting multiple opinions because there are some specialists that can be pretty firm in their ways.

My initial specialist was EXTREMELY keen on Watch and Wait.
The statistics are quite compelling for small AN's
Don't dismiss Watch and Wait as an option.
Growth in the first 12 months is the largest indicator your AN will continue to grow.
If your AN does not grow in the first 12 months you maybe a suitable candidate for Watch and Wait

I chose CK and 2 1/2 years later I am very happy with my treatment choice.
I have retained my hearing, balance is good, tinnitus is minimal, the AN has shrunk, and I have avoided the risks of surgery.

Below is a flowchart on how to manage an AN's
This flowchart was created by consensus of numerous experts in AN's and is the generally accepted way of managing AN's

[jsanders1379]

I was a little confused by the flow chart , in that the middle section (less than 3cm) does not include a watch & wait option...is it because this section means the tumor extends outside the canal?

[chloes mema]

Growth in the first 12 months is the largest indicator your AN will continue to grow.
If your AN does not grow in the first 12 months you maybe a suitable candidate for Watch and Wait

Paul

Not to be a smart alack but which "first 12 months"?  The first 12 months after your diagnosed or the first 12 months when the AN first appears in your head?  This doesn't make much sense to me since most people seem to have an AN way before it's ever diagnosed.

Sorry couldn't help but through that in.

Karen

[Tumbleweed]

I was a little confused by the flow chart , in that the middle section (less than 3cm) does not include a watch & wait option...is it because this section means the tumor extends outside the canal?

I think I can answer this in Paul's stead. The middle section of the chart infers the tumor is outside the internal auditory canal and in the CPA (cerebellopontine angle), as one of the criteria listed is "mild brainstem compression." The heading probably should've read ">1 cm but <3 cm" or "inside CPA," as "No... brainstem compression" could also be taken to mean an intracanalicular (inside the IAC) tumor or one that's only, say, 2 mm, in diameter. Not the most clearly presented flow chart, but I think it's a good reference once you get past its vagaries.

The takeaway is that once a tumor gets to be medium size, it's probably not going to stop growing and will eventually cause nerve damage, if it hasn't already. So the flow chart recommends treatment of some sort for patients who fall into this category.

Not everyone agrees (although, personally, I do). I remember being told 5 years ago by Dr. Derald Brackmann that doctors in one European country -- I believe it was Sweden -- recommend no treatment until a patient completely loses their hearing on their AN side and then have the tumor surgically removed. My memory may be altering the exact details of what he told me, but the gist is that doctors in that country believe it's in the best interest of the patient to delay treatment until the damage is already done (because treatment itself can cause damage). Based on all the people on this forum who have had successful radiation treatments and/or microsurgery -- retaining good cranial-nerve function afterwards -- I believe it's best that mid-size tumors be treated before they cripple any cranial nerves, if it's possible to treat preemptively.

Best wishes to all,
TW

[leapyrtwins]

Radiation is a very good option - especially with an AN as small as yours.

Did the doctor say why radiation wouldn't be right for you?  If not, I'd definitely ask.  Some docs discount radiation simply because they don't do it - and therefore don't know much about it.

If it were me I'd schedule a few more consultations with different docs.

Jan

[Reison]

You've all been very helpful to me - I appreciate all of you offering your insight and experience - I wish good health to you all.  I see the specialists in a week and should know more then.  I have also reached out to a Neurosurgeon that does both surgery and radiosurgery - he will review my MRI as well but said his first recommendation is to do nothing for 6 months then take another picture and see where we're at.

Best,

Rob.

[arizonajack]

his first recommendation is to do nothing for 6 months then take another picture and see where we're at.

I'm no doctor but my own experience suggest that having only a minimal loss of hearing should result in approaching the AN with some urgency.

Even if the AN doesn't grow perceptibly, it's still eating away at the nerve and hearing can go from some to none rather quickly. Once that happens, the hearing isn't likely to come back.

[KeepSmiling]

Yes, the  ENT doc was dismissive of radio surgery for us too.  We are exploring Cyberknife and Proton Therapy. Do ENT docs not get Medical journals? 

[WilliamS]

A year ago I found out I had a 3.3cm neuroma.  The first five doctors I saw told me I needed surgery.  I finally found the UPMC which has had success with using Gama Knife on large neuromas.  I had Gama Knife last March, my 6 month MRI showed the neuroma is dying and I am very satisfied with the results. I appreciate that everyone is different and these are very personal choices. However, I would encourage anyone to make sure they talk to doctors that specialize in each of the different types of treatment.  I do not believe that this is a case of one size fits all.