Another newbie here

[yorkierun]

Hi, I'm really glad I found this board.  Was diagnosed last month with a 2.5 -2.7 tumor and was floored by all of the stuff associated with this.  I started having a lot of vertigo, and was always diagnosed as having ear infections, etc.  Now, after the last bout ended me up again in the hospital, an MRI showed what the problem was.  I've already seen the ENT surgeon, the neurosurgeon and am scheduled next week to see the cyberknife specialist, all out of UPMC in pittsburgh.  How do you ever decide what to do?  The info is so hard to take in and decide for me.  My husband is so set on me having the surgery to remove it, but it's not his head they're cutting into.  Radiation seems less invasive, but still it is radiation.  Wait and see is apparently not a good option for me according to 4 doctors.  This is really scaring me a lot, but no one else really has a clue of what it's like to go through, so I am thrilled my surgeon recommended me joining this forum.  I'm just really nervous right now.   All the posts are so supportive here and I appreciate all the help I've found here.   Jan

[ddaybrat]

Hi, Jan...

Glad you found us.  I don't know how to help you make the decision between surgery and cyberknife.  Just get all the facts and do what you feel comfortable with.  As you say, it's your head that will be cut into. 

I chose the surgery, but it was still frightening.  I've had quite a few surgeries during my life and have no fear about going under the knife.  This was different.  This was my head...my brain.  This is where I live. 

I think the main thing is that you talk to your doctors and the others out here that are more than willing to help.  Take your time deciding.  Your doctors don't want you to wait, but that doesn't mean you can't take a few days or even weeks to make your decision.  Talk to your doctor about how soon that decision needs made.  These are normally slow growing tumors, but everyone is different.  Only the doctors will know the urgency of your decision.

Whatever decision you make, it will be the right one for you.  Remember we are always here to support you and answer your questions.

God bless and good luck...Pat

[Jim Scott]

Hi, Jan ~

We welcome you with the understanding that being diagnosed with an acoustic neuroma is never a pleasant experience - but at least you now know not only the cause of your symptoms but that it is a benign tumor and quite treatable.  I'm pleased to learn that the site and the discussion forums have been helpful to you.  That, of course, is their purpose. 

No one can decide what's the best course of treatment for you - but we can offer information and our collective and individual support.  Obviously, the choices can be confusing and reaching a decision a somewhat frustrating, stressful task, but once made, the more difficult part of the journey will be over.  Your apprehension is very natural and we know because most of the folks posting on these forums have been in the position you're in, now.  We were all nervous and a bit confused, but we made it through...and so will you.

A supportive spouse is a big help and it seems as if you have that.  His choice of surgery for you may be well-intended but, as you clearly recognize, it's your head!  Radiation is certainly less invasive but, as you can see, is not a panacea and has it's own set of risks.  Unfortunately, although many AN patients come through surgery and/or radiation just fine (I had both - with an excellent outcome) results for either cannot be guaranteed ahead of time.  Oh, that they could be!  We would all go that route and no real decision would be necessary.  Alas, that simply isn't the reality with an acoustic neuroma.  You'll have to conduct your own research, have the doctor consults, discuss it with your husband and ultimately come to a decision on treatment.  Just a thought - but prayer helps.  I know that from personal experience and the experiences of other AN patients posting here over the past few years. 

We'll continue to welcome you and offer as much help as we can.  There is a wealth of practical knowledge available from our many members and most are eager to share it with you, You're a member of our AN 'family', now.  I suggest you try to remain as calm as possible, stay focused and positive and, please, consider these forums as a resource and keep us updated on your 'journey'.  Thanks. 

Jim

[Shan1014]

That decision would be a hard one. Mine wasn't found until it was too large. I didn't have one to make... there was only one option for me.  Good luck to you.  I hope all works out.

[yorkierun]

Thanks so much for the very quick replies.   I know this is the place where I need to be right now and am going to do as much reading and research here as I can.   You all seem to be so caring and supportive.  Thanks!!!!!   Jan

[leapyrtwins]

Jan -

you should contact the ANA for their information - you'll find it very helpful.

Treatment choice is a very personal choice and you should do what feels right for you.

Just a word about radiation.  Usually 3 cm is the high end of the size range where most docs will do radiation.  Your MRI results - if accurate (sometimes they aren't exact) show that you are fairly close to the 3 cm limit so you may or may not be a candidate.  The location of your AN will also be a factor.

Another Jan

[moe]

Hi Jan,
Sorry you have to be welcomed to the AN club, but you're here and you will love the support, and advice, humor, etc.
My tumor was med-large and needed surgery, as it was pressed against the brain stem. Does your tumor show any involvement with the brain stem?
That usually eliminates the gamma knife or cyber knife that I know of.

We are a good sounding board just to get through it all. After your research and making your decision, you will feel soo much better. I do agree with Jan that the size is reaching the cut off point, but see what your doctors say.

None of the treatment options are risk free be it surgery or Gamma or Cyber Knife.

Hang in there, one day at a time.
Maureen

[Keri]

Hi Jan,
This forum has been so helpful to me and many others as well. In the decision making, pre-op, post op, and with little annoyances and just life in general stuff, many friends here have given me their support and prayers. Now I hope we can do the same for you and you'll feel comfortable as you make decisions and choices and get through it all.

Keri

[yorkierun]

Thanks so so much!  I've sent for the info pack from here.  I'm reading a lot of the posts on a lot of topics to get a feel of what I may be in for.  I know that I have definitely come to the right place!   I'm compiling a list of questions to ask the cyberknife doctor next week.  I wish I had found this site before I talked to the other two surgeons.  One was actually the one who strongly urged that I join this site.   I'm glad that I have a little bit of time to make this decision instead of just being wheeled into surgery without knowing what this actually is and that I can go into this with a lot of knowledge.    Jan

[moe]

Jan,
I'm glad your surgeon recommended this site. I joined way after everything happened
The forum can be overwhelming so take time off on occasion. Glad it is helping you.
Let us know how things progress.
Maureen

[Vivian B.]

Hi Jan,

I am glad you found this forum. You will find great information, experiences and support from everybody. A decision is difficult to make but one that you will come to once you start doing your research. People that have had surgeries and radiation have done well, ups and downs but got through it. Your decision is a very personal one and one that you need to be comfortable with, but you be certain that either or will come to you.

Vivian

[suboo73]

Hi Jan,

Just stopping by to say hello and let you know (as you have already found out) that you are not alone!
You have already gotten some great replies.  Lots of WONDERFUL folks here, who continue to support one another.

It is not an easy process to decide what to do...  Ultimately, i believe you have to be comfortable with your decision, so take your time.
Sorry to hear about your vertigo.  I have had only one bout with this getting into bed one night, and it was pretty scary!

Best wishes as you go on your AN journey.  We are here for you!

Sincerely,
Sue

[CHD63]

Hi Jan .....

I am just now seeing your post.  Adding my welcome to this forum of caring, supportive friends.

As you can see from my signature, I have had two retrosigmoid brain surgeries.  The first one was at UPMC for microvascular decompression for trigeminal neuralgia, the second one at Duke-Raleigh Hospital for the acoustic neuroma.  Both times the decision making process was the absolute worst part of the whole thing.  Once I had made my decision I was strangely at peace and both surgeries were well worth the decision-making anguish.

My AN was about the same size as yours and unfortunately was one of the rare rapidly growing types so I did not have much time to agonize and do my research.  It also was why I did not have the option of radiation.

My experience at Duke-Raleigh was vastly different from the one in Pittsburgh.  PM if you would like more specifics.

Best thoughts as you continue your research and please know that doctors/surgeons are there for you and not the other way around.  You can always get second, third, fourth, etc. opinions before making this decision.  Any good doctor will be accepting of your need for confirmation.  Because of the rarity of ANs, you want the most experienced physicians you can find.  You might want to copy the list of questions to ask physicians from the ANA web site:  http://anausa.org/questions_for_physician.shtml  I'm glad you sent for the ANA materials, they are very reassuring.

Clarice

[Lizard]

Jan,
Sorry I'm just finally seeing your thread.  Welcome to the forum and what a great Dr., telling you about us    I didn't know about the forum until after my surgery, and I know it would have been a different experience if I was on here pre-op.  Pittsburg is well known for their radiation treatments (they were at the forefront of the radiation movement if you will in the late 80's, and one of the only places in the East that did the therapy) and I consulted with them as well, but eventually chose surgery.  I really just wanted the booger out.  Hind sight is 20-20, but I do not have any regrets, I just had no idea what I was actually getting myself into.  It is your head they are cutting into so bottom line is, its your decision and as many agree can be the toughest part of the journey. 
Hang in there, go with your gut, and keep us posted regarding your decision.
Take care,
Liz

[satman]

hi jan and welcome.
i am so glad i didnt have to decide,yet i kept blowing off the symptoms thinking it would just go away [i was wrong] rushed into surgery with 100 % removal.
whatever route you choose just believe that you are going to come out of this thing just fine and while recovery might be a long rough road [for some,not all] there is light at the end of the tunnel.