ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Butters on December 19, 2006, 04:52:07 pm

Title: Fluke diagnosis
Post by: Butters on December 19, 2006, 04:52:07 pm
Hi Everyone, I was recently diagnosed as having an AN as the result of a fluke.

I went to my normal ENT because my wife complained that I was snoring loudly. During my exam I mentioned that I thought I might have a some hearing problems. So he sent me to an audiologist to get check. The tests determined that I had some slight hearing loss in my left ear, but my hearing was perfect on the right. As a result of the asymmetry, he sent me back for an ABR test (audio brain stem response), that test indicated a problem on the right. Sure enough, an MRI confirmed that I have a 4.5mm by 2.5 AN in my right ear (reason for the hearing loss on the left is still unknown). We went to a specialist who said surgery is indicated sooner rather than later.

My question is this: I'm 36, male, with no hearing loss in the right ear, little or no dizziness or headaches. Do I need to get this removed? Can I just leave it alone.

Thanks everyone for your help.

Title: Re: Fluke diagnosis
Post by: Windsong on December 19, 2006, 05:33:12 pm
Sorry to hear you have an An.

Since yours is smallish, it appears you have the opportunity to research all options for it. I myself zapped mine with fsr.

All the best,

Title: Re: Fluke diagnosis
Post by: Gennysmom on December 19, 2006, 06:13:22 pm
OK, I know this is a serious thread, but I have to say...I read it because I was worried an ANer was diagnosed with flukes!  Thank, how your brain can twist things sometimes!!!! 

Bruce has good advice, you have a ton of options and a lot of time.  Good luck!
Title: Re: Fluke diagnosis
Post by: Battyp on December 19, 2006, 11:35:06 pm
Bruce Butters is cute and I'm sure glad he lives with you and not me  LOL

Butters I didn't read everything Bruce said but know he knows his stuff!  You do not need to rush into anything!  I'd def. keep a close eye on it though.  You said..4mm by the 2.5CM? or still mm?  Typically AN's are slow growing.  If you're talking 2.5CM's then I'd def. be a little more proactive in researching treatment options. 

Please know we are here to help answer any questions you might have!

Title: Re: Fluke diagnosis
Post by: Jim Scott on December 30, 2006, 01:06:57 pm

A belated welcome.  Please accept my sympathy for being diagnosed with an Acoustic Neuroma tumor.  Not fun.  Many of us came to learn we had an AN because our doctor was looking for something else.  In my case, he suspected my hearing and taste loss was due to a sinus problem, so he ordered the MRI.  It wasn't my sinuses, it was a 4.5 cm Acoustic Neuroma tumor.  Apparently, this kind of 'backing into an AN diagnosis' is fairly common.

However, as Bruce correctly stated, your AN is relatively small, allowing you both time and options, so do not allow surgeons to 'push' you into microsurgery, as some will try to do.  It's your decision to make, not theirs.   Study the information on this website so you can gain knowledge that wiil help you deal with doctors throwing jargon and recommendations at you.  Surgery is one option - but for a small tumor, not the only one.  Radiation is a tried-and-true approach that you will want to seriously consider, too, although you are not obligated to select radiation, only to consider it.  Whatever your ultimate decision, be sure to choose an experienced doctor with many AN patients on his resume, especially if you choose surgery.  My neurosurgeon had literally thousands of successful AN surgeries as part of his extensive experience.   My radiation oncologist also was very experienced with Acoustic Neuroma tumors and worked closely with my NS.  Having AN-knowledgable physicians on your 'team' is imperative for a successful resolution to this medical problem.  Do the research, get educated - and don't rush into a decision...but don't avoid dealing with the problem, either. 

Acoustic Neuroma tumors only rarely just stop growing (although it does happen) and as they grow, they do damage to important nerves (balance, hearing, etc) that can manifest themselves as 'lifestyle' issues, including permanent hearing loss (one-sided), long-term facial paralysis and other problems you don't want to have to deal with, if they can possibly be avoided. 

We wish you well and  look forward to hearing from you as you move forward with the decision-making process.

Title: Re: Fluke diagnosis
Post by: noriders on January 03, 2007, 10:36:06 pm
PLEASEDO NOT RUSH INTO RADIATION THERAPY!!!!!!! If procedure fails options are very limited!!!!!!! I am three years into this. I am a 1.5cm AN. Questionable Fractional Gama Knife faiure at this point. I live in LA. I have been to House, UCLA, & Scull Base Instatute my desitions at this point are bad and worse...I hope I get lucky... it's posible.
Title: Re: Fluke diagnosis
Post by: ppearl214 on January 04, 2007, 08:38:41 am
Hi noriders and welcome. :)

I am sorry to hear that your GK treatment may be in question... how long ago was your GK treatment?

As for not rushing into radio-surgery.... I appreciate that many that venture to these forums to ask questions and seek out answers to become the best, self-educated patient we can be.  Self-education is the key to handling each individual situation and all of us are so more than happy to share our decision making process, why we chose what we did (if options were available... unfortuantely, many were not given options) and our outcomes.

A potential failed GK treatment is rare and my hope is that your next MRI does show that it has worked.

I have to admit... we are a rare breed...... and with self-education, we truly are our best own patient advocate.

Here's wishing you well and keeping my fingers crossed that your next scan will show successful GK.  Hang in there.. and again, welcome. :)


PLEASEDO NOT RUSH INTO RADIATION THERAPY!!!!!!! If procedure fails options are very limited!!!!!!! I am three years into this. I am a 1.5cm AN. Questionable Fractional Gama Knife faiure at this point. I live in LA. I have been to House, UCLA, & Scull Base Instatute my desitions at this point are bad and worse...I hope I get lucky... it's posible.
Title: Re: Fluke diagnosis
Post by: noriders on January 04, 2007, 10:54:25 pm
Fluke diagnosis...

I too had a fluke diagnosis. Having no symptoms relating to the AN I received a brain MRI after ankle surgery... long story. I have a life long passion with my ears and 20 years making my living with them. After two neuroligists saying "don't worry about it" and offering very little infomation beyond that I landed at UCLA. Knowing all the procedures at this point (less the endoscopic) and consulting wih Dr Antonio De Salles the  invasive option only offers a 55% chance of saving my hearing and that the FSR had a 95% of doing so while killing the tumor. I opted for the FSR.

I received  very low doses over the course of 30 days. I had zero side effects (life is good). Three years later the AN has shown questionable signs of dying and now my last MRI the technician report says that it has grown .5mm. I am now being told by Dr. De Salles he DOES NOT believe the tumor is growing and that the point A to point B measurement is within the tolerances of the mouse click. The recommendation now is to monitor my hearing loss at 3 & 6 months. At six months have another MRI at UCLA so that the can do a volumetric measurement to more accurately see if the tumor is in fact growing.

The problem I have at this point (all symptoms on the side of the AN. Left) is that I have very noticeable hearing loss although still usable, tinnitus, facial sensation, stuffy noses, intermittent quivering eye lid (not visual at this point), over active salivation. I keep hoping that some of these are due to the fact that I constantly grind my teeth on that side now (stress). In addition my wife says that my snoring is getting worse (when I sleep) and that I am showing signs of sleep apneia.

My first audiogram after I had noticeable hearing loss my ENT refered me to the House clinic. Dr Slattery's recommendation was, due to the fact that my AN was cooked and a sticky goo sacrificing my hearing and balance nerves had to be done (translabrentine approach) to ensure the facial nerve preservation.

Dr. Shahinan's at the SBI says that due to the fact that my tumor has been cooked and a sticky goo, removing it through the endoscopic procedure will be a pain in his ass but he can do it. The facial, hearing, & two balance nerves will be preserved with a 100% tumor removal. He only gives a 20% chance of any sort of hearing preservation but doubts that will happen at all. The up side of all my nerves being preserved is that they will be in tact for future treatment, implant... etc. Regaining my hearing?! WOW what a mind trip... sorry.

Has anyone out there had the endoscopic procedure after FSR?

What about the compromised blood vessels feeding the facial nerve do to the FSR?
How much risk will they be in with this procedure?
Sure my facial nerve will be in tact but will it work?
Will it die in time due to blood loss?

All doctor agree on these points:
       I will lose my hearing on that side.
       Tumor can be safely monitored over next six months with minimal risk of life threatening or life changing effects (less the obvious).
       Additional radiation is not recommended.


Title: Re: Fluke diagnosis
Post by: ppearl214 on January 05, 2007, 06:03:48 am
Hi Bruce,

Just to clarify, CK does not do 30 day doses, FSR (Novalis) does..... CK is typically 3-5 day dose of typically 18-21 Gy (sometimes up to 5 days - 30Gy) of radiation.....

..and you are correct about the margin of error of MRI's, which is typically +/- 2mm, so you are definately correct about that. :)

Great post and thank you!  Hope you don't mind the clarification on the FSR.



The treatment you describe is not Gamma Knife, but most likely fractionated cyberknife. It sounds to me that you had a very good outcome if your AN has not grown in three years. I also agree with your neurosurgeon that a 0.5mm "growth" increase in your AN is nothing to worry about. That measure is statistically insignificant because if falls within the margin of error. The MRI image slice at a different point than the original can account for that size difference. In other words, it is not evidence that your AN is growing.

I can understand your frustration with a decrease in hearing, but when we are treated, we have no guarantees. A few patients have improved hearing post-treatment; some have stable hearing, and for some hearing gets worse, or they lose it altogether. Statistically speaking, you would have had a much greater probability of immediate hearing loss and other side effects had you opted for microsurgery in the first place. I think your bashing of radiotherapy is misplaced. You still have all the options you had before.

What I find amazing is how some neurosurgeons can tell you about the condition of your AN without even coming in contact with it. Without knowing for sure, they are telling you that your AN is cooked and "sticky." How do they know? Some ANs are naturally sticky and some are not. There is no way to tell until they get to it. There are many members who post here who have been given a rosy outlook on their microsurgery, only to wake up post-treatment with life-changing side effects.

If your hearing loss and 0.5mm AN "growth" is what is prompting you to have microsurgery, I hope you reconsider. But, if not, I wish you the best in your treatment. Good luck...

Title: Re: Fluke diagnosis
Post by: pearchica on January 05, 2007, 07:32:33 pm
Hey There: I would RESEARCH, RESEARCH, RESEACH!  It does get a little tedious and boring at times- also there is the freak out factor, but the more you find out the better you will be making a decision. The worst time for me was the time delay between my ENT doctor and the surgeon (only one week but of course before Christmas).  These are slow growing so you have a lot of time to research and think about the best course for you. Take care! Annie
Title: Re: Fluke diagnosis
Post by: noriders on January 06, 2007, 02:48:12 am
Wow !!!!! Thanks guys for such great responses. "FSR (Novovalis)" correct.
NO BASHING whatsoever. I played the percentages but, the facts are what they are. My MRI's do not show any traditional signs of my AN dying (still bright as day). I had three good years but that does not negate the fact that they may have to go in and take it out in the near future.  I continue to have growing symptoms. My tumor is a cooked piece of meat. All surgeons agree on the sticky piece of goo (they have been there before). If not a sticky piece of goo then great, I will get lucky, but they will not know until I am laying on a table with a hole into my cranium (there are some days that my hearing is better than others).
I do feel I have the same options as before, but the precentages have shifted. Do I need to shift my procdeure options now that my tumor is cooked?... yes.
I am 43 years old and very healthy. I have two younger children that I feel a need to share my active life style with into their adulthood. I do not feel that I can live into "old age" without this tumor taking my life early without doing something about it. Is it better to address this now that I am younger? I guess that depends on the outcome. Is it time to roll the dice?  I don't know yet, but at some point I will probably have to. As one surgeon said, "I can't outrun this". I state again Has anyone out there had the endoscopic procedure after FSR?

Bruce, I am staying off the hole saw as long as possible, but I want to be damn sure I have researched the hell out of my options when the time comes. I hope you are still there to help show me the other side. Thank you.

Title: Re: Fluke diagnosis
Post by: ppearl214 on January 06, 2007, 07:42:42 am
Hi Pat,

My hope is that your growth is dying..... but to hear of a potential failed radio-surgery treatment is part of the reality all of us radiosurgery patients weigh when we decide on going through this kind of treatment option.  In weighing out my pros and cons to choosing CK, I never forget the risks involved, including potential failure.  Honestly, I have heard of FSR failures... minimal GK and CK failures.  This is a reminder to me to never forget that radio failure, although rare, can, in fact occur.

I cannot answer about your original question.... but I can send wishes that your research will bring you the answers you seek.  I'm not sure if you checked the  "microsurgical" or "radiosurgery" sections of this discussion forum for the answer you seek. If my short term memory serves me right, I do believe, that if you dig a little bit through the pages of each, I could swear there was the same kind of question posted recently about FSR and surgery (post-radiation). I will see if I can find the thread.

Bruce.... huggle back :)

Title: Re: Fluke diagnosis
Post by: ppearl214 on January 06, 2007, 07:52:54 am

I did a brief search to find the threads here about radio, then surgery.. and still looking, but, I had a thought.... based on your last post noting "Bruce, I am staying off the hole saw as long as possible....", I do know some radiation treatments can be repeated (yes, risks invoved, but still possible).  I do know CK can be repeated (one of the reasons I chose it) but am curious about doing CK, post GK..... on the Cyberknife Patient Support Board (, Dr. Clinton Medbery, who volunteers his time on there to answer questions, performs both, GK and CK and is very experienced/knowledgable on these treatment protocols...... maybe worth asking if microsurgery is not on your list of "must do's"?  Just a thought.

Title: Re: Fluke diagnosis
Post by: noriders on January 07, 2007, 12:03:12 pm

Thank you so much and I am continuing my search with info that you sent.

RE: additional radiation. The mention of additional radiation has come but all three docoters agree that that should not be concidered. Of cource the two phisical surgens would not have done the FSR to begin with. My self being a engineer have quesions about the long term effects. I don't what to die of brain cancer when I am 75.

Title: Re: Fluke diagnosis
Post by: Mark on January 07, 2007, 08:31:01 pm
I'd just like to tag onto Bruce's comments about what is typically called malignant transformation of an AN. In addition to the small number of occurrences as compared to patients treated it should also be mentioned that the number of cases is approximately equal to the number of cases of it happening after SURGERY. It also may be helpful to understand that radiosurgery applies a very high dose which destroys cell DNA. Cancer risk is greater in radio therapy applications where small doses create more of an opportunity for cell mutation. Even that risk is low and as in all medical treatments is always a risk/ benefit decision. So while everything has some degree of risk, this is not one that statiscally through studies as well as the basic biology effect of the treatment warrants much worry IMO

Title: Re: Fluke diagnosis
Post by: BevM on January 08, 2007, 09:18:36 am
As usual you have hit the MARK, Mark!  Glad you are still monitoring and sharing your years of experience and wisdom.

Any new ANer out there PULEESE do yourself a favor and take your time to listen to both sides of the treatment options and know that there are successes and failures possible for both.  A through exploration will lead you to the right answer for YOU.

Best wishes.

Title: Re: Fluke diagnosis
Post by: noriders on January 08, 2007, 10:51:30 pm
Thank you Mark.

I did have low doses as you mention, 30 day FSR stereotactic. I will consider this in my future decison. I am 43... I hope I have a few good years left.

Title: Re: Fluke diagnosis
Post by: jtd71465 on February 01, 2007, 06:06:57 pm

I'm 41 and in good health, had an AN that was 1cm x 1cm x 7mm...long story short...I had some hearing loss, went on Prednisone for 14 days and the hearing recovered...on the same day I had an MRI...the rest is history. 

I looked at it this way....I'm 41 (still young)...I could not wait and watch(as I've said on other posts...I would have driven my wife nuts).  I opted for surgery. 

Do your research, consult with the best....make / trust / execute YOUR decision.

I'm 22 days post-op and feel better everyday. 

Best of luck.

Title: Re: Fluke diagnosis
Post by: Dealy on February 01, 2007, 07:46:04 pm
Noriders- I just had FSR this summer and I am an NF2. Surgery would have left me totally deaf-so I am taking my chances. Anyway some of you may have recalled Byron who posted not to long back had FSR fail after 5 years. He had surgery at HEI this past summer. They had to leave a sliver on his facial nerve. Norider you may want to access his profile and get his input since you are kinda in the same shoes God I hope this does not happen to me. Ron
Title: Re: Fluke diagnosis
Post by: Musicman on February 11, 2007, 12:34:17 am
My diagnosis almost WASN'T a "fluke".  My hearing loss had been "monitored" off and on for almost 20 years, with yearly, then bi-yearly checkups for the last 5 or 6 years.  My left ear had always been measureably less than the right.  Finally, things were beginning to not remain steady but decline further, so I was recommended for a hearing aide.  When I went for that consultation, she said, "I can't help you, the doctor hasn't signed of on this.  Have you had an MRI yet?"  No one had even mentioned an MRI.  The hearing aide specialist said this should have been an automatic red flag for an MRI.  She called the doctor who ultimatley contacted me and said, "Sure, and MRI might be good to do.  We won't find anything, likely, but it is good to rule out all possibilities."  So, we went through the MRI and now I'm looking for 2nd opinions and treatment options.
Title: Re: Fluke diagnosis
Post by: Butters on March 20, 2007, 10:42:17 am
Hi Everyone,

Thanks all for the advice. We'll have to see what happens.

I'm looking for a doctor in New York City. Can anyone recommend someone?