Newly diagnosed and overwhelmed...to say the least...

[Julie in Michigan]

Hello, All and thank you for this fantastic forum...I'm learning a lot...

I've just found out I have a 1.7 cm AN.  I've been complaining of balance issuses for 2 years, but was told "it's just you and your low blood pressure" or it's menopause!  (-:  (I'm 48).  I have tinnitus and 30% deafness in my right ear.

We've been sent from my primary care doc to an ENT and now to a surgeon with the MI Ear Institute...It feels like a referral treadmill...We are doing our own research on line with the help of excellent websites like this one, but we have yet to speak with a professional who is reassuring about anything...

It seems whoever does a certain treatment (GK or surgery only) is a proponent of THAT treatment, you know what I mean?  Also, when you read about the GK option and it's lack of more of the serious side effects, it makes me wonder what other circumstances would cause someone with a small to med AN to chose a resection?

No one here does either of these treatments so we will have to travel out of town and then the question becomes how far?  After you decide which treatment, how do you decide where?

I'm overwhelmed with questions...as I continue to research, I'm so grateful for your thoughts and experiences - Thanks!

[MAlegant]

Julie,
Take a breath.  It's totally natural to feel overwhelmed.  I would add terrified into the mix as well.  I live in Cleveland and so had two world class hospitals to choose from.  I had consults at Cleveland Clinic and University Hospitals with a total of three doctors in all.  For my particular tumor surgery was the best option and because I had no hearing loss (and am a musician) preserving my facial nerve and my hearing pretty much dictated what procedure they did.  I found a good team that had done a ton of these procedures and went from there. 

I thought I had read some other posts from folks that had procedures at the Michigan Ear Institute, you may want to do a search on that.  Keep us posted, keep asking questions, and feel free to PM me if you want to.
Best,
Marci (in Ohio, your neighbor)

[mimoore]

Hi Julie,
Scary isn't it? Welcome you are among friends who understand. I decided to have surgery because I wanted it out! Yes I have had complications but still do not regret my choice. I am getting stronger and stronger everyday and I believe that it will all work out in the end. Arm yourself with information. Carson started a great thread on what do you wish you would have know (something like that) anyway it is good...well really there is a lot of great reading. I think I read and read until my eye balls hurt I wanted as much information as my brain could hold.
You will do fine with whatever choice you make because it will be your choice. Do what is right for you not ANYONE else. We are here for you so ask all the questions you want to.
[[[[Big Hug]]]]]
Michelle 

[Sue]

Hi Julie,

Welcome to our little corner of the Universe.  Sorry you have to join our club, but we are happy that you found us!  Many do not until after they have had treatment and wished they knew about this site beforehand.  

Your AN is a little smaller than mine (2cm), and you need to be aware that you do have options.  You may be a good candidate for radiosurgery and this is something you should find out about.  You may (or maybe not) decide that you'd rather proceed with a non-invasive route rather than microsurgery.  Or you may decide that a surgical procedure is how you'd rather go.  The key word is YOU.    You can be advised by doctors, which is a good thing!  But, know that surgeons, unless they also are trained in radiation treatments, are going to prefer to operate on you.  They are not likely to send you down the street to their competitor.  Likewise, a doctor might prefer radiation treatment over traditional surgery and steer you to his/her specialty.  Not that that's a bad thing, but you need to decide which is going to be best for you.  The point being that if your doctor starts to schedule you for surgery, you might want to research other possibilities.  It's your right to do that.   Much to our frustration, Acoustic Neuroma seems to lead a double life.  It is more properly called Vestibular Schwannoma, and it can be treated with surgery, or, unless the size and location aren't within the guide lines, it can be treated with radiation.  And everyone manifests the symptoms in their own unique way.  Some people are diagnosed right away, but some can take a few years before they find out, finally, what is wrong.  It took me almost a year to get a proper diagnosis.

And all of us were perplexed, overwhelmed, frightened, anxious, and relived, when the doctor finally told us what we had.  

I don't think it would take too much research to find the most experienced hospital in your part of the world that could successfully treat you.  Just be bold and ask them ' "How many AN's do you treat in a year?"  

I wish you the best of luck in your research, treatment and eventual recovery.  Any question, concern, fear, you name it and you can ask it here!

Best wishes,

Sue in Vancouver, USA

[sgerrard]

Hi Julie,

Welcome to the forum. You are right, many doctors tend to favor one form of treatment or another, usually based on their own experience and skills. It is just as important to talk to a radiation oncologist about radiation, as it is to talk to a surgeon about surgery.

You ask why some people jump at the chance for radiation, and others jump away from it. I think it is a matter of perception, how you feel about having a tumor radiated instead of removed, and whether radiation gives you the willies - or surgery does. There are pros and cons for both treatments, and in the end you get to decide which makes sense for you. You have plenty of time to do some homework.

Best wishes,

Steve

[joebloggs]

Hi Julie,

Sorry to hear you've been diagnosed - I have too quite recently, so I understand how overwhelmed you are, as I would imagine does everyone else here.  It is scary to be faced with a choice - I would much rather be told, right you have an AN and this is what we have to do to make you better, but no - we get, right you have an AN and you could do this or this or this, I don't want to make the decision for you, so think about it, JEEZ!  Good one - give someone with no decision making ability a massive decision to make about their brain, woo hoo!

As for how far do you travel - travel as far as you have to to get the best care I say.  I am in the UK, but am Australian - I could have the op here - but I'm hoping to have it done in Australia (with an equally experienced surgeon) so I can be with my family and recover in the sunshine! 

Good luck with everything, and remember that you don't have to make a decision too quickly - at 1.7cm you have both a while to deal with it before it becomes a massive problem and you have more options (there's that choice again!) for treatment - lucky - in a way!

Cheers
JB

[leapyrtwins]

Hi, Julie -

have you just been referred  to Michigan Ear Institute or have you already consulted  with a doc from there?  I only ask because I'm having trouble understanding what you mean when you say you've "yet to speak with a professional who is reassuring about anything"   

I'm puzzled by this comment because although I was shocked and scared when I was first diagnosed, my neurotologist was very reassuring.  He didn't mince words and told me exactly what I could be facing - IMO any doc worth his diploma will do the same - but he also told me that in the end I would be fine - and I was.  I didn't got to MEI, I went to Ear Institute of Chicago (since I'm from the Chicago suburbs) but I can't imagine choosing a doctor to treat me for anything is he/she was all "gloom & doom".

I don't know if the docs @ MEI do radiation, but they are known as being the best in your state at performing AN surgeries.  In fact, I've heard that they are #2 - behind House Ear (HEI) in Los Angeles.  I'm not "pushing" surgery, just saying that if you choose this route, they are docs to seriously consider.  If you should decide to have surgery and you've already met with one their surgeons who you didn't "click" with, you may want to consider consulting with another of their surgeons.

As far as radiation goes, as Steve mentioned, docs tends to favor what they do and know well, so if you haven't talked to anyone about radiation yet, you definitely want to do so since an AN of 1.7 cm should give you the option of surgery or radiation.

You wonder why someone would choose surgery over radiation, and as someone who did, I can give you a little insight.  Surgery removes the tumor; radiation attempts to"kill" it and stops it's growth.  The majority of the time the attempt is successful.  Some of us, myself included, are not comfortable with leaving the tumor in our head and watching and waiting for it to die.  Post op I knew what side-effects I was dealing with; with radiation it sometimes takes 12-18 months for the side-effects to fully appear.  These are just two of the reasons I chose surgery.

I'm not dissing radiation - it's a marvelous choice for many patients, it personally just wasn't for me.  We on the forum pride ourselves in telling newbies that AN treatment is a personal choice and it truly is.  We will be here to support you whichever option you choose.

Everyone's AN journey is different, and we all heal at a different rate, but neither treatment is the end of the world and your life will get back to normal.  You may have a "new normal" post treatment, but you'll be fine.

Good luck,

Jan

[MaryBKAriz]

Julie,

Welcome to our group. I am glad you found this website. It has been so helpful with so many wonderful people. I am sorry you have the diagnosis, though. Our hearts are with you. A lot of us here assumed or doctors assumed we had other issues than ANs. I certainly did. My gosh, I never HEARD of ANs until last March!

I chose a doctor who heads up a team that has all the choices involved. I am so lucky. He went through the pros and cons of all approaches and it made me realize how complex the decision is. I really think a lot would say the decision part is one of the hardest things to deal with. BUT with lots of homework and wquestions and second, third and fourth opinions, you will be able to choose the right way to go for you. I am post treatment by 4 months and am having some side effects, but I do not regret my choice, because any of the treatments have issues.

You take care and a big hug to you!

Mary

[Julie in Michigan]

Thank you for all your posts!  ...  Now here's another question:  It seems everyone says that with a 1.7 cm I do not have to rush into a treatment decision, but how do I know it's NOT growing faster?  Honestly, since finding out, I feel more pressure on that side of my face/ear and the tinnitus is louder and has changed pitch.  I wonder if it's just a hyper-awareness now that I know something's in there. 

We're trying to be upbeat and matter-of-fact with our three kids (15, 14 and 12), but they sense I'm worried and distracted.

This is a journey, but I'm still in the planning stages and I don't even know where I'm going...  (-:

[joebloggs]

Julie - it's my understanding the vast, vast, vast majority of AN's are slow growing 1-2mm a year - so I wouldn't be too concerned.  Mine is about 2.4cm and I had my MRI in June - I was concerned it maybe had grown and asked if I should have another MRI - but my neurotologist said it's fine to wait till just before the op (hopefully in Feb) - so I'm fine with that.

Since finding out I too have noticed, more pressure, strange pains and slight tinnitus when I'm in quiet places - I think it was there all the time and now that I know that they are symptoms I'm aware that I actually have them - I don't think they've developed in the last few weeks.

I'm sure your kids have sensed you're a bit worried and distracted - kids are pretty good at noticing things like that I think - I'm hoping my work haven't noticed how distracted I am and how it took me a week longer than everyone else to do a task I was given!  I'm far less distracted now though than I have been - once you do your initial research and staying up to all hours searching the internet - you'll probably get AN burnout and then glance at things occasionally - that's what has happened with me!

Of course - other people here are far more into this journey than I and can probably offer better advice, and this is just one AN'er to another - but I guess if you are super dooper stressed about it - you can always see about getting a second MRI maybe just to make sure it hasn't grown? 

[pauline]

Julie,

I am so sorry you have to go through all this but this is a great site that will help you!
Since my diagnosis late June 08, symptoms just seemed to come one after another.  During the past few months of watching and waiting, I find that my tinnitus gets worse most of the time when my hearing is stimulated to loud or sudden sounds.  I find my balance worse when I do not take time to rest or I over work myself.  I find that with a little lifestyle change and re-adjustment to my everyday goals, I deal with
the symptoms a lot better!  Much luck to you!  You have a great start in just finding this site. 

[leapyrtwins]

Julie -

while you don't have to rush into treatment, you probably don't want to wait too long either.  ANs usually grow slowly, but as they get bigger your symptoms will most likely get worse or you may find you have new symptoms.  Also, smaller ANs are typically easier to treat than larger ANs.

Jan

[Sue]

Hi Julie,

A 1.7 AN is middle sized and you probably won't want to watch and wait for a long period of time and you'll probably be having something done about it a relatively short period of time, but it's nothing you have to do, say, in a month!  Or two. Or three.  You certainly could safely say you would want to wait until after the New Year, or Spring Break, and be just fine. But, I think, given the size, you'll probably be dealing with it sooner rather than later.   I found out about mine early in March of '06 and I had my GK the following month, so I didn't wait long.  But, I didn't do what we advise people to do.  My neurologist called me up on a Monday and said I had a "mass" (and explained it was an AN) and she had me scheduled to see a neurosurgeon for later in the day. Egads!  I thought, oh dear me, I'm going to have brain surgery!  He passed me right along to an associate of his, who met with me the following Friday and he is a young doctor who specialized in radiosurgery and he thought that's what I should do.  I did not research surgical options.  I had just turned 60, and I'm a diabetic and I'm sure they took one look at that and decided Gamma Knife was going to be easier for me to handle.  I did not argue with them.  I did not know what to argue with them about, for Heaven's sake.  I do not care that there is a dying tumor still in my head.  It does not give me the "willies", thankfully!    It is dying and that's the important thing.  So, in my situation, Gamma Knife was probably the better choice. 

I did post an interesting link that you might want to read about.  It's in the balance issues part, and the subject line says something about Article on Explaining Balance and problems, or something like that.  Be sure to read that, because it really does a great explanation of what happens to us when our vestibular system is out of whack.  Even if you don't have any "balance issues", you really do, you just don't know it yet.  This is a great article and have your family read it too.  They will understand better what you are going through.

Hang in there!

Sue in Vancouver, USA

[fbarbera]

Hi Julie, I was diagnosed with a 2.5 cm AN in July 2007 and was treated with Cyberknife in August 2007.  Mine is on the larger side of "mid-sized" and was increasiongly symptomatic, so the basic instruction when I was diagnosed was that yes, I had time to do research, but that I shouldn't wait more than a couple of months to get treated. 

I was very torn between surgery and radiation.   On the one hand, I wanted the tumor out, but on the other, I did not want to lose my right side hearing (which was and is very good) and I was afraid of facial nerve damage, which I felt could seriously affect my quality of life after treatment.  I did a great deal of research on the different treatments, which I describe in detail in my website below (in my signature line).  I sort of describe the step by step process I went through as I was evaluating surgery v. gamma knife v. cyberknife, etc.  There's also a section describing my post-treatment symptoms and some general tips for newbies such as yourself.  Hope you find it helpful and best of luck.  And please feel free to write if you have questions or want to talk. 

Sincerely,
Francesco

[Melissa778]

Hello Julie, Welcome.

My AN was of similar size to yours and I opted to have surgery, and now am on to Gamma Knife this week to "zap" the remainder.  MyAN is siing almost on top of my facial nerve so they really weren't able to get it all during surgery.  The choice you make to wait, have surgery, or go the radiation route is one that onlyyou and your doctor can make. Don't rush it.  I also see a Dr. at the MI Ear Inst.  And i love them.  they are soooo wonderful!!  I trust in them 100% and they really helped me make my decision.  I have had a fairly easy recovery with minimal complications and am back to my "normal" life.  I wish you the best of luck in making a decision.  If you ever want to PM me feel free as it sounds as if my AN was of similar size and we are seeing the same docs.

Melissa