My tumor size is 3x5 mm looking for advice please

[Mvalentino]

hi all
I was diagnosed about a year and a half ago with a small AN 3x5 mm my doctor has recommended surgery based on my age (34), and the fact that my hearing is intact for the most part, also I would like to start a family so that is a factor as well. I'm going to see another dr for a second opinion.
Any advice?
Thank you

[PaulW]

Your tumour is very small... Acoustic Neuroma surgery is difficult... And while there are many good stories out there are many not so good outcomes too... is the risk worth it...
I think you need to speak with more doctors... Investigate watch and wait further...
Your AN maybe one that never grows... or grows so slowly that it may not need treatment for many years... Like 10 or more....  Radiation is another option you should investigate....

Most people are observed for 12 months to see if the tumour is growing or not, before any treatment.
Don't rush into a decision that may have life altering consequences

[ewhitese]

My tumor is small as well, currently 10mm x 7mm I am sure I became symptomatic long before it was discovered, loss of hearing, headaches, facial twitch.  I was diagnosed in the preparation for sinus surgery.  I chose Gamma Knife surgery because there was a chance to preserve some of my hearing.  You have several choices available to you in treatment.  Surgery is only one tool in the bag.  I would explore all the options before making a decision.  I chose to have GK surgery a month after discovery only because I was symptomatic and knew my tumor was in a growth stage.  No doubt exacerbated by several rounds of prednisone during my chronic sinus phase.

I am sure that I had the tumor for at least 10 years prior to discovery because I had been dealing with a hearing issue for a long time.  The ringing in the ear, a numbness after loud noise exposure, trouble discerning speech, certain sound pitches missing.  Surgery of any kind is going to interrupt your plans and make permanent changes that may or may not effect your abilities and options in the future.  I am only a year and half into this post surgery and so I can not say what long term will be for me.  I do know that the past year and a half have been a wild ride.  And I am a small tumor.

I would be very careful about my choice of where and who I see for my tumor care.  Make sure you chose someone who is experienced and has a track record with AN patience.  I chose UPMC Pittsburgh because it was close, but after some searching found that they are well established as leaders in the field of AN surgery.  I have been well cared for was given the opportunity to discuss the treatment options with several doctors before making Gamma knife my choice.  My doctor wanted me to join the watch and wait club because there was not a history to look at to clarify growth in the tumor.  But based on my own judgment I chose to proceed.

If you are feeling good about your symptoms and are not debilitated or handling day to day well I would consider postponing treatment until it becomes more obvious as the choice to make.  Giving yourself time to explore your options and discover what it means to be a member of our club.  This website is a good research tool to find out lots about what is coming in your journey.  Good luck with your search, ask lots of questions write them down so you can remember to ask them as you go forward.  In todays world of 15 minute appointments it is hard to get all your questions discussed so you need to be proactive in your own care.

Good luck and keep us posted
Ed

[ANGuy]

hi all
I was diagnosed about a year and a half ago with a small AN 3x5 mm my doctor has recommended surgery based on my age (34), and the fact that my hearing is intact for the most part, also I would like to start a family so that is a factor as well. I'm going to see another dr for a second opinion.
Any advice?
Thank you

Your hearing is intact now, it might not be after surgery.  In hindsight, I got my tumor about your age (38) and didn't find out about it until last year (47).  I base this on looking back at symptoms over the years.  So, I had my tumor for nearly a decade and "waited" without the watching.  Mine is 1cm and I'm in no hurry to get my head cut open or irradiated.  I am not against such procedures for people who have larger tumors.  Eventually, I will probably need one or the other myself.  But, as for now, I am no hurry and will get MRI's and wait.

There is a common belief that getting treatment somehow "fixes" symptoms.  While this can happen, that is not the way this works.  The only thing treatment "fixes" is arresting or removing the tumor.  Symptoms can get worse regardless.  This is not like a torn tendon in your elbow, once they stitch it back together things will be repaired and work properly. 

Your balance function will deteriorate and cease to function in that ear, period, no matter what you do.  This is not a big deal so don't sweat it one way or the other.  Many, many people loose their hearing.  Some keep it, some keep a bit of it but not so it is of much use to them, and some lose it a few years later even after it all seems to be okay.  Some people come out of treatment with worse symptoms than they had going in and they will always be worse off symptom-wise.

The one things that treatment will do, and it's a big one, is stop the tumor from impinging on you brain and threatening your life.  At your tumor size, it will take a dozen yers or more before you have to worry about that and you'll be getting MRI's every year or better.  It's not like this thing is going to sneak up on you in the middle of the night and take you out.

Also, consider how much better techniques might be in ten years.  Maybe they'll be the same, maybe they'll have some type of modified DNA that they can inject into the tumor through a narrow opening that will kill it without beating the crap out of all the nerves around it.  They are already doing this successfully with other types of brain tumors.

At Duke, they successfully killed a tumor in the middle of a young boy's brain with such an injection.  The procedure took FIFTEEN MINUTES!  They simply bore a small hole in his skull, inserted the needle into his brain into the tumor, and injected some type of modified cells that killed the tumor.  The alternative was digging their way into his brain and taking it out.  While I realize that this situation is very much different, think about all of the things we are doing now that were impossible or unlikely ten years ago.

[Mickey]

Good advice on this board....  3x5 mm is barely noticeable.  I`m 1 cm for around 8years now and stable W+W.  I`m glad to see that people are giving more thought to what they have to do with AN`s...  In some cases that may be doing nothing but just plain ole taking care of youself... Best wishes, Mickey P.S. there`s our W+W brigade forum

[CHD63]

Given a 3x5 mm acoustic neuroma and no discernible symptoms, watching and waiting is certainly an appropriate option.  However, it is vitally important to have regular MRIs with contrast because at any time the possibility exists for a previously dormant tumor to suddenly begin growing.  We need to be tuned in to any additional and changing symptoms, as well.

Just my two cents .....

Clarice

[FLsunshine]

Living with a brain tumor is certainly scary.  But I would caution you to take your time and get multiple consults so that you make and informed decision as to what is best for you and your circumstance. 

I too have a 3x5mm tumor... have lived with it for 7 years with no growth.  At first I was told that surgery was best since I had all my hearing and my age (at that time 41).  But my personal choice was to put off surgery as it is very serious and I like my head in one piece (lol).  I have yearly MRIs and headaches and balance issues that are frustrating at times but I am content to live with that.  You may not be and that's ok.  Just do your homework first. 

Good luck!