Anyone in W&W with an AN approx 1.4 x 1.8 x 1.7 cm?

[LisaM]

Hi there...

So... I've been flipping out since April 14th when I was diagnosed with this marble in my head -- with the measurements in the subject box above. 

I was told initially that I was NOT a candidate for radiation and that surgery was recommended either retrosigmoid or translab (tumor too big for fossa).  Wait and watch was also an option, but NOT recommended. 

These recommendations came from a surgeon at HEI.  This same surgeon has back peddled a bit and has recently said that YES my "marble" IS a candidate for GK.  This surgeon also does Gamma knife.  I asked him about Cyberknife and he dismissed it.  He tightened his jaw and totally changed his body language when I brought up endoscopic surgery and "dismissed" Dr. Shahinian.

So here I am.  I can hear plenty out of my left ear.  I have mild tinnitus and 34% weakness in my balance on my left side (that I wasn't even aware of until I took a balance test).  I have just a touch of facial numbness on my chin that comes and goes -- seemingly mild symptoms compared to what post-op can be.  Do I risk wait and watch?  Do I risk surgery?  Do I risk Cyberknife?  I'm sure these are familiar questions to anyone reading this post.   

Has anyone in my position opted to do wait and watch?  And has anyone had success in shrinking their AN with a "lifestyle change"?  Should I become a Vegan and eat only raw food?  I am very disciplined, already exercise regularly and am in great shape for my 50 years.   I live in LA and have all kinds of alternatives at my finger tips but have found no one that has specifically dealt with ANs.

I feel like surgery risks my hearing and will almost certainly finish off my balance nerve.  Every direction I turn there are risks.  My first panicked thought was to take care of the damn thing and get it out of my head.  This week... I'm trying to look at this situation from a different angle.  I had a pituitary tumor (a prolactinoma the size of a pea) in the early 90s that disappeared some time around 2005. I like to think that some meditations I did made it disappear but I was also taking a drug called bromocriptine which was supposed to help it shrink.  Prolactinomas are also benign tumors that are often surgically removed.  My endocronologist that diagnosed the prolactinoma adamantly recommended against surgery because as she put it, "you can come out a whole lot worse off than when you went in".

I am putting this post out into the AN universe to see what comes back.

Thanks for your time and input!

xxoo,
LisaM

[leapyrtwins]

AN treatment is a very personal choice - one size does not fit all - and you need to decide what's best for you.

Endoscopic removal isn't widely done.  Dr. Shaninian is one of only two docs I'm aware of who remove ANs endoscopically.  Most docs who remove ANs surgically don't believe in endoscopic removal.

It's not surprising that the surgeon @ HEI said surgery - that's typically what surgeons say, and afterall HEI is where AN surgery was pioneered.  On the other side of the coin, docs who only do radiation tend to recommend radiation if your AN is small enough and the location isn't a factor.

You should consult with docs who do surgery, docs who do radiation, and/or docs who do both in order to get a well-rounded opinion.

Watching & waiting isn't out of the question - lots of people chose it - but if you find your symptoms are getting worse or you're encounter new symptoms you should treat your AN sooner rather than later.  Another key to watching & waiting is to have regular MRIs to monitor the size and check for growth.

As for being able to shrink an AN through a lifestyle change, I hate to burst your bubble, but that's nothing more than wishful thinking 

Jan

[LisaM]

Hey Jan....

Thanks for the reply.  But what about Derek?  He seems to have beat the odds and his tumor seemingly has shrunk? 

[leapyrtwins]

Derek?  Sorry I must have missed that thread.  If you'll point it out to me, I'll be happy to comment.

Jan

[Mickey]

Hi LisaM! I can definately feel where you are right now. I was in a similiar situation about 4 years ago. Well here`s my update as of now which may help you a little, hopefully. When I first came on this board I was about 59 years old with a .12x.06 AN. Symptoms minimal, tinnitus, very minor hearing loss, headaches. I did all the research I possibly could between here and AN meetings and literature. My choice, W+W with a very healthful lifestyle. Derek has been very helpful along with other W+W`ers I`ve meet along the way. I have had no change with my headaches actually improving during this period. With yearly MRIs, supplements, healthy living, new possibilities in treatment, possible shrinkage, I hope to stay this course.This is a very individual choice which when you take your time will come up whats best for you. Wishing youy the best, Mickey

[leapyrtwins]

Just found and read Derek's post.

My take on his "shrinkage" is that he is referring to the margin of error that is quite common in MRI measurements.  A lot has to do with the MRI machine - for example, is the MRI done in the exact same machine each time?  If so, has the accuracy of the machine somehow changed?  etc.  In addition, a lot also has to do with the radiologist reading the report.  It's quite common for different radiologists to interpret results (including measurements) differently.

Watch & wait is a great option for many people who have been diagnosed with an AN.  ANs are typically very slow growing (especially among those of us who are older) and 99.9% of ANs are benign - so unless the symptoms are leading to permanent damage (like irreversible hearing loss) or causing debilitating problems (like balance issues, dizziness, or vertigo you just can't live with) there isn't a great urgency for everyone to seek treatment.

However, as I said in my earlier post, it's very important to periodically monitor your AN since one that is growing can eventually lead to death (worst case scenario, obviously).

Watching and waiting isn't for everyone - just like surgery or radiation isn't for everyone - which is why we always say treatment decisions (if you have them) are a very personal choice.  Speaking for myself (and only myself) I'm just not the kind of person who would have been able to watch and wait.  It would have driven me crazy.

I give a lot of credit to those - like Mickey - who can watch & wait.

Jan

[Derek]

Hi Jan..

Just to clarify the circumstances referred to by yourself and Lisa that are applicable to myself...my original MRI scan upon diagnosis in 2002 indicated an apparent dimension of 2.5cm. Annual scans thereafter until 2008 were undertaken at the same hospital, on the same apparatus and with the same neuroradiologist and neurosurgeon interpreting the resulting data.

During the intervening 6 years period my AN has apparently self-reduced in size by 1cm which is well outside the tolerences that could be expected for discrepencies in the MRI equipment and the margin of error that could be reasonably attributed to the interpretation of the neuroradiologist and neurosurgeon. My last two scans 1n 2009 / 2010 have been undertaken at different hospitals, on diifferent machines and the results interpreted by different personel concluded that the dimension of the AN remainined stable at 1.5cm.

The reasonable conclusion is that my AN has self-reduced in size by 1cm without any treatment intervention and whilst there may well be an element of 'luck' involved, I firmly believe that the reduction and subsequent stability, is attributable to the methodology and lifestyle that I have adopted to deal with my medical condition following the diagnosis and which I have documented in the 'TopTips for the Watch & Wait Brigade' thread.

Best Regards

Derek

[Jim Scott]

Hi, Lisa ~

You've already made the somewhat demoralizing discovery that both radiation and surgery have inherent risks.  That is a reality we all have to face as we absorb the AN diagnosis and seek out the best possible way to address the benign but strategically located tumor.  Observation ('watch-and-wait')  is not unreasonable - for awhile.  In rare cases - some documented on these forums - the AN stops growing and no action is necessary.  I hope that will be your experience.  Unfortunately, even in that best-case scenario annual MRI scans will be necessary to monitor the AN.  However, should the AN continue to grow, your symptoms will be exacerbated and action will have to be taken. Radiation is non-invasive but has repercussions that are slightly different for each AN patient.  Microsurgery also has more obvious risks and outcomes range from excellent to 'what was I thinking'!  Fortunately, most AN patients (radiation or nsurgery) have fairly good outcomes.  I underwent a 9-hour 'debulking' surgery (for a 4.5 cm AN).  The surgery included the severing of the tumor's blood supply.  This was followed, 90 days later - by design - 26 FSR treatments.  The surgery went very well - no complications - and my recovery was rapid.  The FSR was uneventful and I suffered absolutely no ill effects.  My debulked (to 2.8 cm) AN reacted to the radiation by conveniently dying, as we had hoped it would.  Today, almost 5 years later, I'm doing great.  I had lost unilateral hearing prior to the AN diagnosis (the price of procrastination) but otherwise, I'm about as fit and active as anyone in their late sixties has a right to be.  The point I wish to convey is that although AN irradiation and/or surgery carry risks that cannot be avoided, careful vetting of the doctor and his expertise in this kind of very demanding surgery is critical to having the best chance for a good outcome (defined as minimal-to-no complications).  You should know, Lisa, that because this is a support site for AN patients and although we'll offer advice and suggestions as well as our own experience, we'll support whatever decision you eventually make regarding how you'll deal with your AN.  If 'watch-and-wait' seems best for you, now, you should take that route.  Again,  we don't second guess or play judge.  We empathize with the difficulty of arriving at a treatment decision (we've 'been there') and, as I stated, we'll support whatever decision you make.  I hope you'll consider these forums (and our members) as a resource and visit here often as you struggle to make the best AN treatment decision for you.

Jim

[sharonov]

My tumour is about your size, maybe a hair smaller (1.4 x 1.6 x 1./4), and the only problems so far have been with hearing loss in that ear (I can hear on the phone if I have to, but generally use the other ear) and tinnitus, which many of my older relatives without AN's also have.  That's the good thing.  The bad thing is that the last time I had an MRI, two years ago, it measured 1.4 x 1.3 x 1.1.  So the evil lump is growing.  I haven't made an appointment with my doctor yet, but still don't want to do anything until it is closer to 2.  It was diagnosed 6 years ago and hasn't grown any until this measurement,  and according to docs at the last symposium I attended,  AN's have no consistent pattern of growth.

I don't want to do anything until it gets to 2 because of all the potential side effects.  I don't hear well from that ear, but what hearing I do have I deeply cherish!  I'm no kind of athlete, so haven't noticed balance issues.  I rarely get headaches.  I like all of this and don't want it to go away.

So...........yes, someone in your AN size category is a happy W & Waiter and has been for what is a long time in the AN world.  At the last symposium I asked the panel of Doctors if they had ever had patients who lived a regular lifespan and died with their tumors still inside their heads.  They all said "yes".  I desperately want to join their ranks.

Sharon

[leapyrtwins]

Sharon -

good to see you back; it's been a while.

Sorry to hear your AN is growing; please keep us posted.

Jan

[LisaM]

H Sharon,  I just replied to your other post on my topic: Does Anyone Know Sharonov?  I

I found the thread at the link below very helpful with giving me the courage to try wait and watch:

http://www.anausa.org/smf/index.php?topic=3791.0

If you are not have any symptoms that are disturbing your quality of life, I say keep on waiting.  Keep us posted on your AN turns of events.

Best,
Lisa M

[chrisransom]

Lisa -

Welcome to our club!  I hope you find this forum and the ANA as usefull as I have.

I too have an AN roughly the same size as yours.  I learned about it last winter after which I met with a couple of different docs at different hospitals nearby to learn about my options.  I decided that I was a good candidate for WW because my symptoms are so mild - tinnitus (which I've had my whole life so I'm somewhat used to it) and a "fullness" in my left ear, (no loss of hearing).  I have a follow-up MRI and ENT visit in the next couple of weeks but I can't say I'm noticing anyything different although I might be experiencing a bit of "wonkiness" - I notice a little bit of dizziness when I turn my head quickly.  I think WW is a viable option for me - but we all have to choose our own level of risk.  I realize that I could wake up tomorrow with significant hearing loss or I could suddenly experience facial numbness but for now this feels right.  But, that may change in 2 weeks - I'll keep you all posted.  Good luck to you in this new journey - read the forums here and learn learn learn! 

Chris