ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Adrienne on March 20, 2009, 11:29:59 pm

Title: So many questions, so hard to wait to see the specialist (new here)
Post by: Adrienne on March 20, 2009, 11:29:59 pm
I was diagnosed 4 weeks ago with a 2.5cm AN.  Like so many of you, I was completely blown over as I only had mild hearing loss in one ear and had never heard of this.  I fully expected them to tell me that my MRI showed some obscure crack in a bone or muscle pull.  Not in a million years did I expect brain tumor.  Live and learn.  I've been through the full range of emotions now, and can't seem to decide on which one should stick around. LOL

Here are my issues/concerns and questions, in no particular order.  I appreciate ANY advice or comments you can give me, as I'm in a waiting pattern until seeing the neurosurgeon on April 20th
*My doctor and hearing specialist both told me that I WILL be getting surgery to remove this.  I'm 36 years old, and the tumor is 2.5cm at it's peak (not sure of other dimensions).  My hearing is pretty darn good in my left ear (have problems with clarity mostly).  I have slight balance/dizziness issues (so slight that I dismissed them to low blood pressure and a weak core, even though I work out a lot).  The confusing part about this is that a friend of mine has a very prominent neurosurgeon friend in another major city and when he told him my details, the response was "I would NOT do surgery on her, I would do radiation given her age and the size of the tumor and would only resort to surgery at a later date if the tumor continued to grow and caused complete hearing loss").  Talk about confusing.  I have faith that my neurosurgeon will be able to give me much more detail based on my specific location,etc, but am curious which option is most likely to be recommended for me.

*Prior to knowing I had an AN, I mentioned to 2 different medical professionals that I have a new shooting 'shock like' pain that comes and goes on the left side of my face.  My dentist wanted to start orthedontic work to remedy it (LOL).  My GP and my hearing specialist both dismissed it.  After finding out about the AN, they both seemed to think it's unrelated.  Then today I got a flyer about larger tumors pressing on the trigeminal nerve and causing facial numbness and tingling.  Although I would never describe mine with either of those 2 words, I did a quick google search and the exact words used to describe pressure on the trigeminal nerve was an intense "shock like" feeling on one side of the face. HELLO???  EXACTLY what I had been complaining about.  Why would they be so sure it wasn't related to the tumor we just discovered?  Weird.  Again, something I will bring up with the neurosurgeon.

*I suppose I'm in the minority here, but I HATE that there are so many choices of treatment.  How will I ever live with myself if I choose one and end up with horrible side effects and wonder all my life if one of the other ones would have been better.  I'm secretly hoping my neurosurgeon is so experienced and confident with this that he will say with 100% confidence that I should go with one of the options.  That way, I feel like I could live with the consequences that much better.  I don't know.....

*I'm feeling guilty.  At first when I heard the word brain tumor, I just wanted to live.  Then, I found out living is almost guaranteed with this thing.  So then, my wish list changed to "just want to preserve my facial nerve and not have paralysis.....they can take my hearing.  Who cares?".  I thought I was OK with that option, until I met an AN survivor (translab in '02).  Seeing what it's like to live with only hearing in one ear made me sad, and scared.  I just don't want to have to deal with ANY of the crappy side effects of surgery/treatment.  Then, when I think like that, I feel guilty because so many people are in such worse positions.  At least we have the chance to fight this.  I wasn't given a death sentence, or burned/disfigured in a fire, or ........  You get the idea.  I'm grateful that I have a chance to move on after having an AN when so many people aren't given the choice.  Holy guilt.

I've blathered on long enough.  I guess I just can't wait until April 20th, when I hope to have more answers than questions.  I'm told I'll have about another 2 month wait before surgery, so best guess is mid June. 

Thanks for listening.

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: sgerrard on March 21, 2009, 12:57:13 am
Hi Adrienne,

Welcome to the forum. We always have room for one more AN patient. :)

I think you will discover that many neurosurgeons and other doctors are very confident, but totally disagree with each other. It depends a lot on who you see, as you are already finding out. Don't hesitate to meet with more than one, just to see what the range of responses is. Finding a doctor with experience treating ANs is important.

Although it can seem like a lot of choices, it really comes down to watch and wait, have surgery, or have radiation. You can probably find a doctor who recommends each of them with great certainty. As you get to know more about it, one of them will probably seem like the right one for you. Then you pick that one, and hope for the best.

Don't feel guilty about not having a more dread disease. This is a major medical event, and plenty to have on your plate.

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: suboo73 on March 21, 2009, 05:44:32 am
I think you will discover that many neurosurgeons and other doctors are very confident, but totally disagree with each other. It depends a lot on who you see, as you are already finding out. Don't hesitate to meet with more than one, just to see what the range of responses is. Finding a doctor with experience treating ANs is important.

Don't feel guilty about not having a more dread disease. This is a major medical event, and plenty to have on your plate.

Hi Adrienne, 

So glad you have found this forum!  The folks here are WONDERFUL, FANTASTIC, this is a GREAT place to be!
I am here and so is my sister (BigSister) - her diagnosis was rapid i believe because her local ENT was knowledgeable of AN's.  Mine took over 12+ years and i heard answers like 'i was just getting older' - at the age of about 40!  I am now at the almost 6 month point since original diagnosis, and decided that i would do nothing without the 2nd MRI with contrast, which i will have in early April.

I have seen one neurosurgeon and one radiologist. The surgeon said, ' need treatment immediately, surgery or radiation.'  The radiologist said, ' have time - so no problem W & W.'  Steve has stated it very clearly:  find docs with experience, and don't HESITATE to get more than one opinion.  Do you know that places like House Ear Institute and Dr. Chang at Stanford (Cyberknife) will give 2nd opinions if you send your MRI's to them?  I forget if they charge, but some major medical centers will.  I am sure i am not done yet researching...  ???

All the emotions you are feeling, that roller coaster ride - we have all been there.  Me, i was angry with my original local docs who were ENT's but obviously a) didn't listen to me and/or b) did not know about AN's.  Now i have moved on, using my energy to research on the forum and gather all the information i can through the collective knowledge here.

There are many here who have gone before us and their stories will help guide us through this journey.  The information provided, along with your own research, will help you arrive at a decision best for YOU.  I am still waiting for the 'gut' feeling that everyone talks about, so i know i am not done investigating.

I know this is all new to you - take a deep breath and keep reading and posting! 
You will hear from others, so hang in there!

All my thoughts, prayers and best wishes.

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: EJTampa on March 21, 2009, 07:24:04 am
Welcome to our little group Adrienne.
You've received the correct responses already, so I'll just put some emphasis on them.  Get more than one opinion on treatment options, and do your own research from fellow posties (already had surgery or radiation) here in the forums.
The decision making was the hardest part for me.  There are pros and cons to surgery, radiation, and even watch and wait.  In your case, I think watch and wait may be less of an option since if it grows much more, it could take radiation alone as a treatment option off the table.  That would leave you with only one choice.  I could be wrong here, but I remember hearing something around the 2.5 cm mark being the largest ones treated solely with radiation.
The single most important thing is that you are comfortable with your decision and choice of doctor.  Oh, that was two things.  One theme you will find over and over again here is that the physician must have extensive experience in dealing with skull based tumors, and particularly, AN's.  That alone increases your chances of having as close to normal post-surgical or post-radiation life as possible.
As time goes on, you will have more questions and more concerns.  Some we'll be able to answer, others maybe not.  But we will all be here with you on your new AN journey.
Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: Kaybo on March 21, 2009, 09:00:42 am
Welome form TEXAS!!  I don't have anything to add except that whatever happens - it is a livable situation.  It may not be what you WANT or what you exactly PLANNED, but at least you will have your life and you will be able to go on & live life to the fullest and enjoy family and friends!  I do not say this to make you feel more guilty but from experience!  We are about the same age, but they found my tumor when I was 25 - married for a year, no kids.  The options and modern medicine has come a LONG way in 13 years!  I now have 3 wonderful girlies and a GREAT life!!  Check out our blog if you'd like (world button on left) or if you would like to chat, feel free to send me a PM with your number - I have unlimited long distance in the US.  Where are you located?  Definitely get different opinions - the main thing is that YOU muct feel 100% confident in your Dr. and procedure - and believe it or not, you'll know when that happens!

K ;D
Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: MissMolly on March 21, 2009, 10:35:20 am
Hi Adrienne, (That's my daughter's name.  :) )

I hope you're finding this group helpful.  As a new member, I must say I do!!

As I go through this process myself, I have to say that I am finding comfort in having a neuro otologist (specialist in the neurological disorders of the ear) who treats MANY cases of AN every year.  I went last Wednesday and his waiting area was full.  He said he had see three new cases just that day... the others were return visits.  I am also finding comfort in that he uses a team approach - with another neurosurgeon - during surgery.  So, experience, expertise and teamwork are definitely high on my list for gaining comfort in the treatment and recommendations I get from my Dr.

There is a great list of "questions to ask your doctor" on the ANA home page, as I recall.  I'd review that too.  It may help.

Hope you are doing okay.  I know how distressing this time can be!!!

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: Vivian B. on March 21, 2009, 10:44:02 am
Hi Adrienne,

Welcome to the forum. I myself am new and know what you are going through. The feelings of anxiety that just don't see to leave your body. This forum has been great. Everyone is right, research your options and talk to people on the forum that have done either of the treatment. This condition is not major, but the treatment options are hard to digest. However, in keeping things in perspective, just remember that at least there are treatment options. You will get a better feeling of the whole idea once you see the Specialist. You will have mixed emotions about both treatments, one minute you will think surgery, one minute you will think radiation. Like everyone on the forum says, it does come to you as you get closer to deciding. Sometimes I say to myself if I had to decide today, what would I do? My answer comes to me although always with a little bit of doubt. I think this is one of these things that no matter what treatment you choose you will always at the back of your mind think what if? I think the learning process is to be able to manage how you feel about your decision once it has been made. Be patient. This is coming from someone that couldn't even eat for the first two weeks after diagnosis. It gets better?

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: mk on March 21, 2009, 12:10:48 pm

Your situation reminds me very much of mine. I was 38 when diagnosed with a 2.4 cm AN (although it turned out that the radiologist had underestimated the size, so it turned out that it was more like 2.8-2.9 cm - but this is another story). I had no hearing loss, no balance issues and only trigeminal symptoms, specifically numbness (and yes, the pain you described can definately be due to the trigeminal nerve).

As others have pointed out, every doctor will seem 100% confident in what they suggest. I found that this is more the case in the States, and less in other places like Canada, where they don't have anything to gain in particular by convincing you one way or the other. This can lead in conflicting opinions and lots of confusion. The only answer is to research, read, and get as many consultations as possible. There are many pros and cons in every choice - after doing your research you will know which option you feel more confortable with. I would say it is good that you have time before your consultation, so that you can gather all the information you need by then, and go armed with questions.

The issue of age can further complicate the decision. According to one argument, younger patients are better off with surgery since they are in good health, and the long term implications of radiation are unknown. On the other side, young patients may have families, careers, and may not be able to afford long recovery times and/or deal with complications that can arise from surgery and may compromise quality of life.

I am sure you will get lots of responses, and points of view, from people who had surgery and radiation. Read through them carefully - also it is worthwhile searching old posts, archives etc. Don't afraid to ask questions, you will get lots of support here.


Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: cindyj on March 21, 2009, 01:01:52 pm
Hi, Adrienne and welcome to the site.  I know just what you mean about hating all the treatment choices.  I felt that way for quite a while after I was diagnosed, just about this time last year.  I've had numerous other surgeries (some serious) and I had never had so many choices before.  But, you will figure it out in time and with the help of your doctors - you will have confidence in an approach and a doctor at some point and things will just seem right. 

Just a comment on the SSD thing - at 49, I'm quite a bit older than you, but I had perfect hearing prior to my surgery.  So, I knew it would be an adjustment after surgery.  However, it has not been any where near as bad as I thought it would be.  I know for some it is intolerable (understandably), but there are also many who get along just fine with the one good ear.  Just wanted you to have some positive input about losing hearing, in case it comes to that for you.

We will be here cheering you on!

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: anissa on March 21, 2009, 03:51:56 pm
Hi Adrienne and welcome.  :)  I'm relatively new here and headed for surgery in a couple weeks.  I could have written your post, almost to the letter, except I don't have the facial pain (yet).  I'm 39 with four little kids.  I despise options.  I'm a "black and white" kind of gal and would just as soon somebody tell me what I have to do rather than decide for myself but this is not that kind of illness.  As the others have said, do your homework, talk to people, send your MRI to Dr.'s and in the end you'll have to decide with your gut.  You'll know.  I've been blogging my journey so far  Another blog that I read was  I think the author may have come here but I don't know for sure, Amanda is her name.  Best wishes and please send me a PM if you would like to chat more. 
Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: MAlegant on March 21, 2009, 07:24:15 pm
Hi Adrienne and welcome,
My tumor was large and on the trigeminal nerve so those shooting pains were most of my symptoms, though they were only fleeting.  I was practically asymptomatic.  Lucky it was found!  Everything that you are feeling is normal, believe me.  I also very much wanted to avoid surgery but it was the best option for me.  I have a very busy life, crazy job and other things, and I have managed to get back to mostly everything I did before surgery.  Except for taking good health for granted.  I'll never do THAT again!  You will find lots of support here so don't hesitate to ask questions, even if you think they are strange questions.  Someone out there will be able to relate to you. Good luck as you go through this and I wish you the best.
Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: Keeping Up on March 21, 2009, 09:44:24 pm
Hoping this won't show up twice  - it is getting late!

I suppose I'm in the minority here, but I HATE that there are so many choices of treatment.


Seeing what it's like to live with only hearing in one ear made me sad, and scared. 

Definitely not in the minority, I am a newbie (with a small tumor and no symptoms aside from hearing loss and tinnitus so am happily waiting it out for now) - but hate that the different options, are so different with their own unique advantages and disadvantages.

Loss of hearing in one ear - when I first found out about the diagnosis, one of my main goals was hearing preservation.  I have subsequently decided (rightly or wrongly - issue for debate I am sure) that the likelihood of preservation over the long-term of useful hearing with surgery or GK (I am Cdn - so no Cyberknife in Canada) is sufficiently low that seeking treatment (remember I am waiting) for the sole purpose of attempting hearing preservation wasn't worth the risk.  It did help to find out that a girl at work was born SSD (so a bit different than a later in life loss) - I have worked with her for about a year now - never knew she was SSD.  I did talk to her about it - she gets on in life without a worry, without any hearing aids - and doesn't feel her life has been at all diminished by only having one hearing ear.  It was a great relief to hear her view on the situation.  It helped me feel so much more comfortable with my choice to not pursue hearing preservation.

I am 37 years old.  As you will meet, there seems to be a slew of <40 somethings around here so will be able to provide an interesting array of experiences/explanation of choices.

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: kenneth_k on March 22, 2009, 01:06:42 pm
Hi Adrienne.

And welcome to the forum. I'm a postie, as we say, and also single sided deaf. I think it is very different how people handle loosing hearing in one ear.
It's been 6 months now, and yes sometimes it's a nuisance, but most of the time, it really isn't that big a deal. Before surgery, I was willing to give up my hearing in order to get the bugger out. And I haven't regretted it so far.

By time, I trust you will find out what is right for you.

Regards, Kenneth
Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: Jim Scott on March 22, 2009, 02:50:38 pm
Hello Adrienne - and welcome to our little corner of the internet.  :)

Just about all the really good responses have already been offered (research, multiple doctor consultations) so I'll just amplify a few and try to add some perspective.

A patient with an acoustic neuroma being misdiagnosed is all too common, I'm afraid, as is the frustration of doctors offering supremely confident but often totally contradictory opinions as to what you should do. Surgery!  No, wait....radiation!  Er, well, maybe 'watch-and-wait'.  This dichotomy is not only confusing but exasperating and although it shouldn't be like this, the reality remains that it is.  The imperative issue here is that you'll have to live with the results of whatever decision you make, not a doctor.  This is why being informed about the choices you have is critical to making a wise decision on how to best address your AN.  Still, the cold, hard truth is that, no matter how much research you do or how sure you are about your doctor and treatment, there are no guarantees.  I wish there were.  We all do.  But, we live in reality and have to face that one, like it or not. 

I was fortunate, in a sense, in that, by the time I mustered enough sense to see a doctor about a 5-year slow-but-steady unilateral hearing loss, intermittent stabbing pains on one side of my head, the near-total loss of the sense of taste within a six-month period, extreme fatigue and a few other things, I was directed to a highly experienced neurosurgeon who was (rightly) considered the most experienced doctor in the area when it came to treating patients with an acoustic neuroma.  His success rate was excellent, he was clearly very knowledgeable and compassionate (he listened to my concerns) and later, while I went through my lengthy pre-op testing, more than one nurse - when they  asked who my surgeon was going to be - stated that I had the best surgeon around for 'that kind of tumor'.  This good doctor was clearly alarmed by the size of my AN (4.5 cm on the MRI, actually over 5 cm when they got to it) and when I made my concen over the possibility of facial paralysis clear to him , he offered me a two-step plan of attack.  First, a debulking ('sub-total resection') to cut off the tumor blood supply and reduce it's size, then, following a 90-day 'rest period', 26 FSR 'sessions' to destroy the remaining tumor's DNA and effectively 'kill' it.  The neurosurgeon presented this to me as his plan and said he hoped I would 'hire' him, as he felt this was the best way to address my large AN.  It was basically a take-it-or-leave-it proposition.  I took it - and never regretted my decision.  The surgery went very well, my recovery was rapid, and the radiation sessions were boring but ultimately successful (see my signature, below).  So, in a way, I didn't have all that much choice.  Frankly, you're right about the hassle of 'too many' choices.  It can be perplexing, to say the least.  I concur with my fellow posters that 'going with your gut' is probably the best way to choose a doctor and a treatment.  Once the neurosurgeon talked to us (my wife and I) I had no doubt that this was the doctor I wanted and that his plan of attack on the AN seemed reasonable and had a very good chance to be successful and spare me difficult post-op complications.  I was right.  No real post-op complications and certainly no regrets about my decisions.  I wish you the same.

FWIW: I can tell you that being SSD is not so terribly dreadful.  I've adapted quite well and learned how to compensate for my hearing deficit.  Many people I've come into contact with had no idea I only hear in one ear.  However, some AN patients with SSD obtain BAHA implants/processors to help them hear.  I don't choose to use that option but it remains a possibility for any SSD person and should be seen as fall-back for any substantial hearing loss you may experience.

I wouldn't beat myself up and feel guilty because (a) you don't want to die, (b) you want to get through this with minimum complications.  Here's a little secret, just between you and me, Adrienne: that's what just about every newly diagnosed AN patient thinks.  I did.  I was blessed to have that desire fulfilled and I'm pleased to report that I live a pretty normal life, today.  I believe many prayers for me were answered in the affirmative.  I've never felt guilty, only blessed and extremely fortunate for my successful outcome.  I try to show that appreciation by attempting to help and encourage other AN patients, especially those newly diagnosed or post-op and suffering with (occasionally debilitating) complications.  I'm confident that once you're through this AN 'journey' you'll do something comparable.  We have some AN 'posties' here that struggle with post-op/radiation issues every day but still manage to post encouraging and even humorous messages quite often, so the least a complication-free AN 'survivor' like me can do is try to emulate those courageous folks. 

I hope this lengthy post hasn't bored you (or anyone) and I trust that you'll learn much more on your April 20th Dr. consultation.

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: Adrienne on March 22, 2009, 09:22:29 pm
I belong to several internet groups, and I can truly say that you guys give a very warm welcome.  It's nice to be in a place where everyone can relate so well to what I'm going through.

For the record, I'm up in Canada (Vancouver) and am due to meet Dr. Akagami at Vancouver General.  I've read online that he's the best for this kind of thing, and that he has a good beside manner to boot (fingers crossed).  I'm still confused on whether or not he would be the one to do the radiation if that was the road I decided to travel down.  I'm sure that will become clear when I meet him.

I keep reading that most of you had a feeling or 'knew' when you had found the right neurosurgeon and/or treatment choice.  I'm hoping it becomes clear for me too in the coming weeks.

Thank you also for the reassurance on SSD.  I'm hoping that if I am willing to give up my left ear hearing, they can give me a high percentage/likelihood of success with avoiding facial paralysis.  If that was the trade off, I'm pretty sure I know what my choice will be.

Thanks also to Molly for telling me about the list of questions for the surgeon.  I'm going to check that out now!

Thank you everyone for the warm welcome and answers/reassurances.  It means a lot!

Title: Re: So many questions, so hard to wait to see the specialist (new here)
Post by: cecile k on March 29, 2009, 05:56:14 pm
Hi there:

Another former VGH patient here - with Dr. Durity (Dr. Akagami took over from Dr. Durity when he retired)....From what I know and heard, you have been referred to the cream of the crop :-) and wish you well. I have not met Dr. Akagami in person but he reads my MRIs each time I go for a followup MRI and sends me a copy of his report. Surgery was over 7 years ago now for left AN....I have traveled through an up and down recovery but hesitate to go into detail because everyone's recovery is so different. All in all, I am just so thankful to be spared facial paralysis, have learned to live with single sided deafness and have enough energy to look after our five boys :-) (My five boys all tell me that I hear better with one ear than with two - they don't get away with much here lol)  All the best! I guess the best advice I can give at this point is for you to write down every single question and have someone go with you to your appointment with Dr. Akagami. You will be given a lot of information and I hope that Dr. Akagami will patiently answer all your questions and as Dr. Durity did for me.