Scared Newbie

[Puppylove]

Hi,

I am a 40 year old mother of 2 little ones (2.5 yrs and 14 month old).  I was just diagnosed with AN last Friday by my ENT. It is 14mm AP x 18mm TR x 15mm CC, which I guess is fairly small. I haven't seen a neurosurgeon yet, but have an appt in a couple of weeks. According to the ENT, he thinks surgery is my best option.

Backstory: I noticed my left ear felt like it had cotton in it a couple months ago. I tried cleaning it, thinking it was just a wax build up. More recently I also started getting dizzy spells, nothing that was debilitating, but a funny feeling in my head. After seeing the ENT, he put me on prednisone for a week, which helped with the hearing issue and I could hear again, and the dizzy spells went away. After I stopped the prednisone, I had an MRI, but my hearing started fading again and now I have constant ringing in my ear. Just yesterday I noticed the funny feeling in my head coming back, and today the dizzy spells are happening much more frequently.

I was so distraught all weekend, doing research online and seeing what was in store for me.  One of my biggest fears of surgery, besides not making it through, is having any kind of facial paralyzation.  I really don’t want to lose my hearing either, but that is something only I have to deal with, I don’t want to be deformed in any way.  I don’t want my kids to have a mom that looks so “different”.  I spent most of the weekend crying, although lately, I’m just really mad that this happened.  I want to accept it and move on, be positive, but I am so mad this happened to me.

I don’t know if radiation is right for me as I’ve had so much radiation in my life already. I had radiation treatments as a child for cancer, which has caused quite a few artery issues now.  I’m so confused about the different options available and the outcomes for each.  I know I should just wait to talk to a doctor, but I’m so anxious and I want answers now.

I will be seeing a neurosurgeon at UCLA, Dr. Martin (has anyone heard of him?).  Since I’m in Los Angeles, I will contact House also. My husband thinks I should just do the phone consult first before making an actual office visit…do you think this is beneficial, or should I just make the appt since I am so close?  The earliest I could have the surgery at UCLA is January, which is fine because I don’t want to have it before the holidays. 

What other types of doctors should I look for to get other opinions? I’m so afraid that seeing neurosurgeons, they will just recommend surgery. I know there are other options besides surgery, but who would I go to, to see if those options are available to me?

Sorry to be rambling, but I’m just so confused and overwhelmed at this whole thing.

Thanks for reading,
Debbie

[kaitysmom]

Hi Debbie

I'm a newbie as well.  I'm due for my surgery on Thursday.  I had the same emotions you are going through.  It's quite overwhelming.  But, the best thing for me was to get multiple opinions.  I'm on the east coast and actually consulted with House and ended up choosing Johns Hopkins. 

I saw two separate ENTs before I went to Hopkins.  One said to wait and see, which I didn't like that answer, and one who told me if I was his sister he would say get it out. It was important to know all the options whether I wanted to go a particular route or not.   I found the two doctors I saw at Hopkins (brain dr. And ear surgeon) both educated me on radiation and surgery.  I've opted for surgery because I did't like the whole radiation thing.

I'm sure your doctors will help you make an informed decision. 

You'll find lots of information on here.  I just joined and It has been wonderful to read what folks have actually gone through.

Wishing you the best
Jody 

   

[CHD63]

Hi Debbie (and Jody, as well) .....

..... and welcome to both of you.  So glad you found us.  Hearing those words "you have a brain tumor" scared the socks off most of us.  Many can identify with the anger you feel with this diagnosis.

First of all, ANs are almost always benign (less than 1% chance of a malignancy).  Secondly, they are almost always slow growing.  You have time to research your options and get opinions, then step back, take a deep breath, try to relax, and make your own decision for treatment.  This is a very personal thing that only you should make (with input from others, of course).

Re:  HEI in LA ..... you can simply send a copy of your MRI to them and they will evaluate it and give you an opinion, free of charge.  You do not need to make an appointment initially.  Stanford University has one of the best departments for radiation treatment in the country, should you choose to explore that route.

I, too, had radiation treatments as a teenager so I was very reluctant to pursue that treatment option.  Not until after I had successful surgical removal, did I have the opportunity to talk with a physician at the last ANA Symposium in Chicago about my situation.  He explained that the radiation they use in gamma or cyber knife is far less than what would have been given to me.  He felt I did not have cause for concern (in my case).  I am not a doctor, and every situation is different, but I would certainly ask some questions if you are at all interested in that option.

Please know that we all are here for you as you walk this journey.  There is life after an AN!

Thoughts and prayers.  Clarice

[TJ]

Debbie and Jody

I am not a doctor but I agree with Clarice, you both have time to do the research that you need to do before going ahead.  Both surgery and radiation have pros and cons.  A month or so ago someone posted and I can't remember who but they stated basically if you go to a surgeon, they recommend surgery, if you go to a radiologist, they recommend radiation.  It comes down to the size of the AN and where it is located.  Surgery is a major step and has some nasty side effects.  Radiation can also has some nasty side effects, but usually are short term.

You want to talk to many different folks so that you can make the correct decision for YOU.  One that when it is all over you can feel comfortable with it.

Best of Luck

TJ

[Mickey]

Hi Debbi! There are alot of people here in your corner. At the beginning the realization of having a AN can be hard to take. As time goes by you will realize that this is a very treatable situation. With todays technology (House near by) along with the fact size is small and symptoms are not too bad, take time to research and familiarize yourself with all your options. Your young and have a whole future ahead of you and this is just another one of the bumps in the road which you will overpass.  With many prayers on your journey and before you know you`ll be looking at this in the rear view mirror. God Bless, Mickey

[kaitysmom]

Heavens didn't mean to hijack Debbie's thread. Thanks so much for the info. Clarice and TJ.  I'm looking forward to being a postie on Friday! 

[questions?586]

Hi Debbi:  I'd tell you not to panic but then what fun would it be?    I  was crazed for a couple of months.  My doctors are still watching for a couple of months before another MRI and giving me time to figure things out.  These ANs grow so slowly you have time for a few consultations.  You are well located and will find the right doctor! It's scary but everyone here is so nice and reassuring and that's really helpful. Starr

[Tumbleweed]

Hi, Debbie:

Welcome to the forum. We're sorry you have an AN but we're happy you have found us. We all understand what you're going through. To us, all of the emotions you've described make perfect sense. Been there, done that. 

First things first, I would definitely go for a face-to-face consultation with the neurosurgeon if it's close to where you live and not too inconvenient for you. You should definitely get at least a second opinion, however, preferably from a doctor who practices some form of radiation treatment. (I got 6 opinions!) Each doctor will have their own bias, based on their specialty, but you will eventually know in your gut what is the right path for you to take. But first you have to clearly see the two or three paths in order to make a decision as to which looks best to you.

Your concern about facial-nerve problems with surgery are warranted. That is to say, although many people have no damage to facial-nerve function on account of having their AN surgically resected (cut out), the odds are generally much greater that you will have facial-nerve impairment with surgery compared to with radiation. Especially considering the size of your tumor (which is borderline between small and medium size) and the fact that your hearing nerve has already been compromised (weakened), surgery may also be harder on your hearing function, too. If you haven't had an ABR (auditory brainstem response) test yet, ask your doctor for one. A painless and quick test, it will gauge the viability of your hearing nerve at several points along its traverse; a neurosurgeon will then be better able to predict whether the hearing nerve is strong enough to withstand surgery or whether you are likely to lose your hearing. For example, Dr. Derald Brackmann (famed neurosurgeon at House Ear Clinic, who developed most of today's techniques in brain surgery) told me my ABR test was so poor that surgery would surely leave me deaf on my AN side. As a result, he recommended I have radiation treatment instead, in an effort to preserve my hearing. He recommended GammaKnife (GK), but I ended up choosing CyberKnife (CK) for reasons I'll detail shortly.

Dr. Brackmann will review your MRI and give you his consultation for free over the phone. His email address is: dbrackmann@hei.org
Dr. Steven Chang (esteemed neurosurgeon and CK practitioner at Stanford University Medical Center in California; my doctor) will also review your MRI and give you his consultation for free. His email is: sdchang@standford.edu. Dr. Chang has probably treated more ANs with CyberKnife than anyone else in the world. Doctors travel from all over the world to Stanford for their CyberKnife training. CyberKnife was invented by Stanford's Dr. Adler and CK has been in use at Stanford for at least five years longer than anywhere else in the U.S.
I believe you can also get a free consultation by contacting the University of Pittsburgh Medical Center, which has practiced GK longer than any other facility (for over 40 years) in the U.S.

Here is a link to a post I made awhile ago (it appears roughly half-way down the page). It summarizes the various treatment options available to you in terms of risks and benefits:
http://anausa.org/forum/index.php?topic=6670.0

This forum is a tremendous resource for information and emotional support. If I had only one consoling thing to say to you, it would be this: everyone on this forum thought it was the end of the world when they were first diagnosed, but fairly quickly found peace of mind and realized that a full life still awaits them. I promise you that you will get through this and come out okay. Do your research and choose your treatment and doctors based on careful deliberation. A good life -- and good health -- awaits you.

Best wishes,
TW

[Lizard]

Debbie,
You've received some really great advice already, and believe me we have all been in your shoes.  Once you decide on your treatment path you will feel much better.  Also, please do go visit House, they are one of the most experienced at AN's and you will be in great hands there, and you are fortunate that you are so close!
Hang in there, and welcome to the forum, feel free to lean on us for anything, no matter how insignificant it may seem...we've all been through it 

Take care,
Liz

[cindyj]

Hi, Debbie, and welcome to the site! As others note, the size of your tumor gives you plenty of time to research and figure out what is the best treatment option for YOU, whether that be microsurgery, radiation or watch and wait.  I also had radiation for cancer and was told it should not be a factor...I did, however, for various other reasons choose microsurgery...at House!  I flew, as many others here have done, across country to go there (site unseen).  While you should definitely consult w/ several doctors and explore all your options, I think with House being in your backyard, you should at least visit them along w/ other docs you would consider. 

Whatever you decide, we are here to support you as best we can!  Best to you,

Cindy

[Jim Scott]

Hi, Debbie and welcome, although I'm sorry you're the recipient of an acoustic neuroma diagnosis.  However, as all the supportive prior posts clearly indicate, you've found a great place to vent, ask questions and, most importantly, receive unqualified support from folks who have a real-world understanding of what you're dealing with, on both a physical and emotional level.   

All the good advice has already been given so I'll just say 'amen' to it (especially the part about continuing your research) and invite you to stay connected here and know that we care about you and understand your situation because, for most of us, we've 'been there'.  Fortunately, we've also not only survived but in many cases, thrived.  Yes, some AN surgical or radiation patients do develop complications but the majority don't or if they do, they're transitional and/or repairable with surgery, therapy or, quite often, simply time - and patience.  I'm confident that you'll do fine, as so many of us have.  We look forward to seeing more of your posts.

BTW: love your screen name. 

Jim

[Adrienne]

Hi Debbie,

I can sooo relate.  I was 36 when diagnosed and had 2 kids-6 and 9.  That was a year and a half ago.  I researched so much I thought my head would explode.  I had to wait 2 months just to meet my neurosurgeon, which left a lot of time to do all the 'what if' scenarios in my head.

My personal opinion is that you should meet and discuss this with as many specialists as are willing to meet you.  Ultimately that will assist you in *knowing* when you've found the right one.  Once that happens (and I pray that it does for you), you'll have a greater comfort about the entire situation.  The range of emotions is huge, and going through them is completely normal.  I felt like my head was spinning because one moment I just would be happy to live, but the next minute I'd change on a dime and be mad that I had to have ANY long term effects from this.  I'd find peace one minute and be scared out of my mind the next.  It was EXHAUSTING!

Please know that life after an AN can be AMAZING.  Not just good. AMAZING.  Seems impossible when you're diagnosed and trying to navigate through all the information and decisions (who ever heard of a medical condition where you get to choose what you'd like to do.  Can't someone tell you definitively that one particular method will have the BEST outcome?  Crazy.....but no). 

I came out of it really, really well.  No one would ever guess what I've been through, and even though every single day is 'normal' for me in every way-I do have a new appreciation for pretty much everything in life......which is a GREAT thing!

Msg me if you want to chat. 

Huge ((hugs))

Adrienne

[jaylogs]

Hey Debbie...welcome to our little club here! I see you've already gotten a lot of great information here...It was mentioned about sending your stuff to Dr. Brackmann and House Ear Institute...I did that myself and ended up going there for my surgery....I have nothing but great things to say about them!  Whatever you do end up deciding what you want to do, and if it feels right, then you made the right decision! Please continue to post your concerns or if you have questions. We all on here are a very patient sort of lot, having been where you are at ourselves we know what you are going through! Take care and good luck!
Jay

[cin605]

Welcome Debbie and Jody!Take some deep breaths.....research....do not make any hasty decisions...oganise... hang on tight....and get ready for the ride of your life!!!!!
Its fast and furiouse.

make sure what ever you decide listen to your heart and head not everyone telling you what they would do....they are not you ...its not hapening to them.
Ask all the questins you need to ask...do not hold back and write the questins and answers down....becouse there is so much info to take in try not to over whelm your self and do not be afraid to ask for an anti anxiety
med.
We are all here for you...HUGS!!!!!!!!!!!!!!!!
cindy(cin605)

[moe]

Adding a welcome to Debbie and Jody.
Great advice from previous posts! By now you are probably feeling less scared.
It will all come together, like a puzzle. Just takes time, patience and that "gut feeling" people talk about.
Let us know how things progress!
Maureen