Scared

[SteveWWD]

I just got the results back from an MRI to find out that I have acoustic neuroma in my right ear.   The MRI was not exactly looking for AN, so I am not sure how accurate the size measurments are.  There are three sizes on my MRI results, the biggest being 1.5 cm, I believe the other two are 1 or less.  I am guessing that means that I have an AN sized at 1.5cm.  I immediately started looking up this , and became pretty depressed at what I found.  So far I have spoken to one Radiation Oncoiloogist about Gamma Knife, and I am almost 100% certain that I will not be doing this.  I am only 26 years old.  I have yet to see someone as young as me on any of these forums or websites.  That scares me.  I have read a little about some of the other procedures.  The Oncologist said my best bet is to wait and have an MRI in a year providing I can "put this on the shelf".  He said it is very small.  I have two appointments in the city with Neurosurgeons at Columbia and NYU.  I am afraid of the risks of surgery, and my quality of life.  Right now I have tinnitus slightly, and a pressure in my ear, and on a rare occation I lose a little balance.  Other than that I am fine.  I am set to be wed in April, and want to start a family soon.  I realize  have time, and I will be using that time to gather as much info as I can and find the best doctor.  I realize that statistics are just numbers, but I am wondering what are the risks of the different operative procedures?  And what are the risks of unrelated procedures as a basis of comparison?  I mean this is brain surgery!  And when the radiation oncologist is telling me "I am in dark waters", I am scared as hell.  Although I would like to preseerve my hearing, I can handle losing it, I think.  The facial paralysis would be devistating, but I'll live.  I guess this is my way of measuring things. 

What I am scared of is that if I wait, and it grows (which it sounds like they almost always do grow) does that make the surgery more complicated?  I know there is no real rate of growth since these are sporatic, but could I have 5 years to make a decision, 10 years, 1 year?  I don't know.  Do  go with 10 years of good hearing and basically no real problem, or do I risk it and possibly have early hearning loss, facial paraylisis, meningitus?  Do I put my life at risk now or later?  I am going out of my mind with this.  I am glad there is support out there.

[ellenvig]

Hi,

I'm so sorry you're going through this!  I was diagnosed last month and was also very scared when I started reading about surgery and all the complications.  I have 3 children ages 5 and under, and who will take care of them if I am incapacitated for weeks, or months!  The youngest is still exclusively breasdtfeeding and not crawling or even sitting up on his own yet!

From reading and consulting with doctors, I have also chosen radiation.  My choice right now is between Gamma Knife and Cyber Knife.

Yes, if you wait, chances are, it will grow.  If it grows to 3cm, you may not have the option of radiation that you have now.  Luckily, these tumors typically grow slowly.  Having a repeat MRI in a few months might give you a better idea of how much waiting time you have.

Hang in there - you'll come to decisions soon, once you have time to assimilate all the information.

Good luck,

Ellen

[Sheryl]

You expressed yourself very well and your feelings are the exact feelings of probably everyone who comes to this board.  I am so sorry you are going through this but you will make it!!  There are some wonderful people here who have some wonderful experience and advice.  Just to put in my "two cents" worth - I am what is called a "wait and watcher".  My tumor was discovered incidentally after a bad headache in November of 2001.  Turns out the headache was due to a blood pressure problem but guess what!!! You have a brain tumor   Luckily I had some great medical people to consult with as I worked in a hospital and decided that my best buddy should be the neuroradiologist.  Everyone is different but in the almost five years my tumor started at 9 mm and is now about 12 mm.  They think the first one was "under-read" so could possibly be a mm or so larger.  I really don't have an acoustic tumor as mine is on the 9th cranial nerve rather than the 8th but I am feeling a few symptoms similar to the AN - fullness and tinnitus in that ear, occasional imbalance but nothing that affects my daily activities.  It is very slow growing and is not pressing on my brainstem but since I have decided on some sort of radiation (probably cyberknife), I am keeping a close eye on it as I've read that right after the treatment, they do swell and also most times they do not shrink much but remain stable and do not grow.  So, I wouldn't want to be at a point that it was disabling in any way.  I think if I were younger (this year is the big 6 - oh), I would opt for surgery but you have to explore all your options and take your time - there is no emergency to this.  Keep us posted and try to stay calm.
Sheryl

[sunshine16]

Hi Steve,

I'm sorry to hear the diagnosis of your right AN tumor caught you by surprise.  The same way happened to me, well almost!

Went to ENT dr. to find out what causing my earache, he didn't find nothing so he ordered MRI.  Had the MRI and found out I had 4.5 cm tumor. I really thought the earache and noise in my left ear was nothing but "ear infection"  Just been married for less than two months on the time I found out, I have two kids 4 and 9 years old.  So, to cut the story short.  I was shocked.....  scared.........  but hopeful............

I did lots and lots of research, looked for the best doctors, and the best place to have it surgically removed.  On the day of my surgery, I was calm, and was in good spirit!!!!!!!!!

Just hang in there, You'll get through this...........  Take Care

[Kathleen_Mc]

Steve: When I was diagnosed with my orginal tumor I was 23, single and looking for a mate. I did not have a choice of treatment, I had to have surgery and I think it was something like 2 1/2 weks between diagnoses and surgery. I lost my hearing, balance and facial nerves. I suffer from the dry eye, facial weakness, and all the good things I am sure you have read can happen.....as well as depression (it is hardly ever mentioned by doctor's but having brain surgery can disturbed the brains chemicals and cause depression that may or may not even out over time.) I would suggest before you go on to have  children you have this dealt with, I had a regrowth removed this past fall and now that I have a family it was more difficult in terms of the recovery phase, children need a healthy and active Mother and Father and it was difficult for them to have me ill (although I must say they handled it very well). I found out about the regrowth when my son was just two months old and I found out that my doctor knew about it the year before and told me instead that the MRI was only showing scar tissue and to return for another MRI in a year, when the repeat showed the tumor was growing I was referred to my surgeon and that is when I found out about the regrowth and I have always said if I had been given the benifit of knowing the regrowth was there befor ehaving my children I would have had it removed before going on to have a family. I was very nervous for them going in to have the surgery last fall, all the what if's (what if I stroked and now I have this young family to raise still etc.)
Something else to consider, the bigger the tumor the longer the surgery the more difficult the recovery, Certainly recovering from the 4 hour surgery I had last fall was much easier than recovery from the orginal 16 hour surgery I had in 1990.
Kathleen

[Sefra22]

Hi Steve,
I think everyone here can relate to your fear. It helps me to read this forum and know that I'm not alone. I have a great support structure from family and friends, but it's always good to get support from those who are dealing with the same thing. My fear comes and goes (like nausea), where I can be fine and strong for a few days, and then, BAM, I'm thinking about all the possible complications, lost time from work, the thought of a drill in my skull, is the surgeon competant.......Then I read a sucess story here,  I am inspired, and I KNOW I am going to be alright.  The other thought I have is something my doctor said. "If you have to have a brain tumor, this is the kind to have, benign, and not located in a more difficult to access area."

[ppearl214]

Steve,

there is nothing I can add here that others have already stated.  My sister died of a malignant brain tumor, so for me to get word of me having one (although benign...keyword here!) was devastating, not only to me, but my family.  I have to say that if it were not for the ANA, their hosting of this site/forums and for all the folks here, I would not have been able to make as informed a decision as I did.  Know that we are all here for you.  Know that you are certainly not alone... and know that this is treatable, curable and yes, life does go on as best as we make it go on. 

Please hang in there... we're here for you in all regards.

Phyllis

[sunshine16]

I agree PPearl...  This support group has a tremendous positive effect on me, I'm sure to everyone here, too.... w/out this website & everyone here esp. You!  I don't know how I gone through (still going through)  life.  From choosing House to depression to facial paralysis, etc.....etc....

[Joef]

I see that you have appointments in NYU .. are you in the tri-state area?

several of us are meeting for lunch next week...(in MA) (for the first time !  ) your welcome to join us!

while it can be scarey to hear "Brain Tumor" ... its not the end of the world, it can be treated, and there are issues ... but there are in any heath related issues! just do your homework .. find out the facts ... get the best doctors ... get a 2nd opinion ..

[Sheryl]

YO - where's the lunch?  I'm on Cape Cod for the summer - must have missed the posting, although I do admit to just popping in now and then.
Sheryl

[ppearl214]

YO - where's the lunch?  I'm on Cape Cod for the summer - must have missed the posting, although I do admit to just popping in now and then.
Sheryl

OMG! Sheryl, you're home!  YAY!  Brunch thread.. next Sunday the 30th!
http://anausa.org/forum/index.php?topic=1323.75
xoxo
Phyl

[marystro]

Hi SteveWWD,

I was very scared like you are 3 weeks ago when I found out my AN diagnosis from my ENT.  From the thought of the end of the world to the image of open brain surgery .  The ANA support group is indeed the best that has happened to me.  They are my life savers.  Everyone of them.  There will be ups and downs.  Check out treatment options.  I did my research from initial option of surgery to final decision of Cyberknife.  I am much less scared now but you will find the scare does not go away altogether (at least for me).  Instead it comes back at times and I am learning to manage it by looking at the bright side --- I even discovered new and true friendship and stronger family ties just from these last 3 weeks alone  !  So, don't give up hope!  We are all here for you!!!  See I am already claiming to be part of this exclusive group already!  Keep sending us those questions and thoughts.  This group can handle them better than any doctors in the world!

Mary

[Sheryl]

Phyll - Thanks so much for the info.  Now I do think I remember seeing stuff about the get together and knowing that that weekend we have a cousin's reunion in Plymouth (wonder if we'll see some Pilgrims!!).  Maybe this winter I'll gather up the Florida contingency and plan something down there!!  My husband is active with meningioma mama's - we are both head cases - and they had something in the Tampa area.
Take care -
Sheryl

[Sue]

Hi Steve,

I hope by now you have read the responses to your initial posting and are feeling a little better about your circumstance. It's never easy, no matter what age you are, I don't think. When the doctor called (first thought, OMG, doctor's hardly EVER call!) and told me on the phone what was going on with me, I was stunned. I was also thankful that I finally had an answer and that I wasn't crazy..my symptoms really were "something". Boy, were they SOMETHING!   Well, anyway, after I hung up the phone I just sat on the bed and thought, "I want my Mommy."  Really, I just wanted to crawl unto her lap and have her hold me.**  And I had just had my 60th birthday, Steve!! So if this diagnosis doesn't want you to suck your thumb and get in a fetal position, I don't know what does!!   And even tho, BENIGN, is a very good word, having an AN is hardly without consequences of some sort. Something will be taken away or added on.  I had Gamma Knife and so far I'm happy with my decision, even tho it's only been since April 18 of this year. I have "severe" hearing loss in my AN ear, I have tinnitus, and I have numbness on the left side of my face, including weird sensations on the left side of my mouth and edge of tongue. I have no idea if any of that will get worse or if it will fade or if I will just get so used to it that I will one day not even register that I have these daily annoyances. I certainly hope so, because it gets so tiring to have something nagging at you. Granted, we are all so very happy that it's not worse and I'm  pretty sure most of us are happy to have the trade off of medical annoyances versus death, but it still can be taxing to the system and to our mental health. It's getting through all the "Mental Junk" and finally getting to acceptance that can be hard.  You have youth on your side and your prognosis may be better than you think.  Your AN isn't huge and you are lucky it was caught now.  Time is on your side, too.  Take deep breaths. It will be okay. The folks on here will give you all the help that you ask for.  Really.  They are angels.

Sue in Vancouver

**  My mother died when I was 15 and I suppose it was my imagination, but when I reached out to her that day, I really did feel like she had her arms around me. Kind of dramatic sounding, I know...but, I was comforted, nonetheless.

[Road Trip Dale]

Obviously there is little I can add to what has already been said, other than at 3 months Post op (translab, I sacrificed what hearing I had in my right ear), I am better than i was before the surgery.  My quality of life has changed little, I still swim everyday, I bike, and can run with no problems (except my age:-)  The magic size number seems to be 2cm! When the size gets above that there tends to be more side effects than treatments below that number.  I was 1.75 and because of my age (I'm 62) and had some pretty significant hearing loss in my AN ear my neuro-oculist recomended the Translab and I couldn't be happier with the results.

Listen to your doctor's and know that this isn't life threatening at this stage...by the way congratulations on your future wedding plans.