Hello. New Member Introduction

[CF]

Hello. I'm glad I found this forum / site too. Great information. Just to introduce myself: Within a year or so I noticed I was having brief, random feelings of imbalance. I thought I was imagining it, and maybe thought it was due to my allergies. However this summer, it came upon me rather strongly and consistently, I was having the feeling all day, every day. Finally I went to my PCP, who tried some antihistamines on me for 3 weeks. Didn't work, so he sent me to an ENT. The ENT also tried a similar route, assuming I had an ear infection as well. I came back after one week and my imbalance was still there. He gave me a hearing test and then told me there was nothing wrong with me. He did suggest that if the imbalance feeling got worse, to come back to him and he would write me a prescription for vestibular therapy (VT). I left the office a bit disappointed, and when I researched a bit more about this therapy, I knew it wasn't what I needed, as I am an active exerciser and the basic VT exercises would have been a piece of cake.

Needless to say I went for a second opinion (with an ENT who was experienced in vertigo), and among some other "tests", this 2nd doctor asked me to march in place with my eyes closed. It was obvious I was drifting to the right. He recommended an MRI, which I got. It showed I have a 15mm AN. I now have followup with an ENT / Neurotologist in about a week or so. I feel like my vertigo sensations have increased, I feel a bit of fullness in my affected ear, can hear ringing more frequently. I think my AN has grown in the last few weeks. 

So now I'm just trying to get better educated so I can ask the right questions at this followup. I'm a little concerned I may have to go for surgery during the Christmas Holiday that I was going to spend with my family, but will do what I need to do, just thinking of my family.

Any suggestions welcome and appreciated.

[Kaybo]

Hi CF!
Sorry about your discovery of an AN but sure glad you found this Forum...it is a great place to be with TONS of information and LOTS of caring people!  USUALLY, acoustic neuromas are VERY slow growing and with the size of yours, you probably have some time.  That being said, I would think that you would be able to enjoy your holiday plans with your family and then address your tumor.

Please make yourself at home here and ask us any question - that is what we are here for! 

Can you tell us a little more about yourself? Male or female?  Age?  What part of the country?  We are a NOSEY bunch (at least I am)!!

K   

[Doc]

Welcome CF...like K said, you don't have to worry about rushing into surgery.  Most of our AN's were much larger when they were eventually removed.  Mine for example was 4.7 cm x 4.5 cm when I went into surgery this past July 30th for a Left Translab.  That's a giant Tumor but far from the biggest you'll hear about around here.  You're certainly tuned into the correct channel.  This is the place that turns the uninformed into experts, willing or otherwise, you just can't help but learn.  I'm guessing way out loud here, but I'm thinking you'll probably end up having non-invasive Cyber Knife (CK) Radiation treatment if anything because your Tumor, which was caught early due to your own diligence, is still small.  I had surgery and will also have CK beginning next month because roughly 56% of my Tumor remains in my head resting on my Brain Stem; with my number 5 nerve running right through it.  My Doctor is in no rush to get me into the Toaster; "it's not cancerous so there's no need for you to feel the minor side effects of radiation treatment over the holidays" he said.  And remember, the only stupid questions around here are the ones you don't ask...if its on your mind, ask, someone will have the answer or reference you're looking for!

Gods Speed!
 
Doc

[Jim Scott]

Hello and welcome CF ~

I'm always sorry to learn of another person receiving the dreaded AN diagnosis but you've found the right place to visit for practical, knowledgeable advice and lots of compassionate support as you deal with this acoustic neuroma thing.  That the tumor is non-malignant and treatable is the good news.  As Kay ('Kaybo')  mentioned, that it's slow-growing is also a plus.  I would doubt you'll need to schedule surgery or radiation until after the Christmas season unless your symptoms drive you to having the AN treated sooner.   

These forums contain a wealth of information and the ANA offers quite an array of easy-to-understand information, too.  I would suggest sending for it. 

Meanwhile, feel free to ask any question you have and use these forums as a resource.  We're all AN patients (or caregivers of AN patients) and we know how you feel.  We want to help and support you as you travel on this unwanted journey.  Please allow us to do so.  All you have to do is ask. 

Jim

[NancyMc]

Hi, CF.
In my case and many others, a repeat MRI was scheduled at 3-month, 6-month and one-year intervals.  With no growth I was on the watch and wait plan until the 7th year when substantial growth occurred.  So, you will have plenty of time to sort out your thoughts and research approaches.  Don't worry.  It's scary at first, but you have a lot of support here.
Nancy

[Larry]

Hi CF,

If surgery is your approach, then wait and watch, its small enough, unless your symptoms get worse, especially your hearing. Once you lose your hearing, you can't get the lost bit back but you may be able to retain what you go into surgery with.

The other option is radiation treatment, be it, gamma knife, cyber knife or Linac. radiation is best treated when the growth is under 25mm and is not pressing on your brain stem.

There are loads of posts on the diifferent formas of radiation treatment.

Laz

[moe]

Hi CF,
It is rather mind blowing to hear you have this thing growing in your head, but yours is on the small side, it is benign and slow growing.
Also interesting when you find out you have the little booger, the symptoms seem to be more noticeable or dramatic.
Probably because you are on higher "alert."
Enjoy your holiday, do some research but really, things will work out.
It's just a process of figuring out which route to go.
Who is your doctor? You may find members with the same doctor.
Hang in there, there are great people here who will have all sorts of advice/opinions! No question is too stupid or silly.
Maureen

[CHD63]

Welcome to this Forum, CF .....

As the others have already said, your AN is on the small side and most ANs grow very slowly so you have time to do your research.  However, some can be fast-growing (mine was) and some have sudden growth spurts so you need to be diligent about monitoring your symptoms.  As Maureen said, take into consideration that just knowing you have a tumor can temporarily make your symptoms seem worse.  That being said, if your hearing or your balance suddenly becomes much worse, it is time to alert your doctor.

I think it is unlikely you will need to make a decision on treatment before the holidays.  Even if you decide on a type of treatment, it most likely will not be scheduled until January.

Let us know how you are doing.  By the way, there is an excellent list of questions to take to the doctors on the ANA main web site ..... just follow the links.

Best thoughts.  Clarice

[leapyrtwins]

CF -

as others have said, don't jump into anything - you have time to do research and investigate your options.

If you haven't already, you should contact the ANA for their informational literature.  It's very well-written and extremely helpful.

Mind if I ask which neurotologist you are seeing?  Perhaps someone on the forum has been to him/her.

Jan

[1cANAdian]

Welcome CF!

There is plenty of information available on the good old WWW.  More importantly, you'll find people on this forum who can assist so much with the nuances of dealing with the plethora of AN issues.  Keep reading the forums and asking questions.  You'll get plenty of sound advice that has been derived from first hand and practical experiences.  Stay positive and build your support networks.

Cheers!

Ken

[wendysig]

Hi CF and welcome,

Like everyone else, I'm sorry to learn you have an AN, but glad you found us.  We  all understand the feeling of being overwhelmed that the AN diagnosis brings.  Because yours is considered small, you should have time to enjoy the holidays with your family but it is a good idea to start  learning as much as you can now.  My advice is that you don't become so obsessed with it that it ends up ruining your holiday though.

Jan's suggestion that you get the informational packet from ANA is an excellent one and will give you many answers as well as questions  you can ask your doc (and us) when you next see him/her.  You seem to have decided on surgery, but also have the option of stereotactic radiosurgery (radiation) to treat your brain booger.  Whichever you ultimately choose, make sure that you make an informed decision and that it is the right choice for YOU, not what someone else wants you to do.

Best wishes,
Wendy

[pjb]

Just as everyone else has said this is mostly slow growing and you have time make sure you do alot of research and ask as many questions or as in my case I did not know what to ask so ask for suggestions or details as to what to expect. I was not feeling well 2 years ago and went through the proper channels I thought and even went for Vestibular Therapy for a different diagnosis that was given and it did not work so I continued with the fullness in my ear and excepted it.  Thank goodness 2 years later I fainted a couple of times and went to another doctor and was then diagnosed with a 1 cm AN and then everything happened so fast and did not research it that well but the outcome was good. I  just wanted to explain that within those 2 years a 1 cm is still relatively small so the growth was slow also so you have time to enjoy your Holidays and do your homework right after.

My prayers are with you,

Pat

[tenai98]

Hi
And welcome to the family...
JO

[CF]

Thank you all for the warm welcome and words of encouragement. I'm in my mid-40's, male. I really appreciate all the advice and well wishes. I have begun my research and I guess I'm looking to see what this doctor I was referred to will say after he views my MRI image ..... I somewhat feel I already know what the options will be. I'm prepared mentally, I think, for the appropriate treatment, whether it be surgery or radiation. I'm not sure I want to take the wait and see approach unless there is a chance the AN will shrink by itself (which I don't believe is an option). My balance is effected enough where I feel my quality of life has already begin to decrease. I tire easily, and the tasks I use to do around the house seem a bit more burdensome as I guess I need to exert more energy to keep my balance, and I guess that tires me out. I don't feel up to par.

I had started tracking my "symptoms" for about 3-4 weeks (no longer doing it now on paper), prior to seeing the second doctor because I knew I wanted an MRI, so I wanted to build a case for it. I rated my feelings of imbalance on a daily basis, as either LOW, MEDIUM, HIGH, and also tried to note fatigue, foods I ate, etc., because at the time I just did not know what I was dealing with. Now that I know, I feel much better that there is a physical explanation to what I was experiencing ..... some people really doubted what I was experiencing and there was no way for me to prove it (they thought I was imagining it, or it had to do with my diet, or it was allergy related).

I believe I really would like treatment sooner rather than later, and if I had a choice it would be Dec 30 or 31 lol  . This will give me plenty of time off with the family, and also I'll be on the same insurance deductible schedule! 

I know this might sound premature, but I do feel I'm ready to deal with this. I think I've already cycled through my stages of denial, fear, anger .... I'm ready to get this bugger out of me! But I'm still worried a bit about the potential complications.

I'd like to know if the doctor I'm seeing is experienced in this kind of treatment. I'm not comfortable yet in sharing his name, but I might do a search on the forums to see if his name even comes up. Nonetheless I printed the questions out from the website, and I'll be sure to bring them with me.

Thanks again everyone. It's nice to know what I have, and that there are people out there who have "been there, done that".

A Merry Christmas / Happy Holidays to all of you! 

[leapyrtwins]

I'm not sure I want to take the wait and see approach unless there is a chance the AN will shrink by itself (which I don't believe is an option).

CF -

you are correct.  This isn't going to happen. 

However, most ANs grow very slowly.  There are always exceptions (I was one), but they're few and far between.

Take your time to figure out what is best for you.  AN treatment is kind of like gambling in some aspects.  You never know 100% what your outcome will be.  You do your research, get the best doctor you can find that you're comfortable with, weigh your odds, and then decide on your treatment. 

Don't hesitate to ask us anything - that's what we're here for - or to lean on us for support.  We also don't mind if you just want to vent.

And please, contact the ANA for information.  You'll be glad you did.

Best,

Jan