Hard to believe I'm signing up on this site

[davecz]

Just when things were going pretty good in life, I found myself looking at an MRI image of a 3cm AN in MY head less than two weeks ago. So here I am, grateful it's not a tumor in the middle of my brain. And thankful my surgeon told me about this site. I've been reading all your stories and I'm ready to educate myself on AN. It sure helps to know I'm not the only one living with this. And that  many of you have already made the decision that I'm faced to make very soon. So while I proceed with learning all about AN, I hope to get to know many of you. My first question for all of you is who did you share the news with upon being diagnosed. I didn't want to tell anyone at first. my main reason was not wanting to burden friends and family. Just wondering if this is a typical first response. However, lately I've decided that one can't keep something like this inside. So I'm slowly letting a chosen few into my AN circle. The support I'm getting now is extremely important. I made the right decision.

[CHD63]

Hi davecz and welcome to this forum that no one really wanted to join ..... 

..... but glad you found us so quickly.  You will find a wealth of information and a ton of support right here.

As for who I shared the news with ..... other than falling apart to my husband, I really wanted to keep it to myself.  However, with my symptoms and the need for a rather rapid decision (I had a fairly rare, rapidly growing AN.), I could not keep it from the rest of my family and close friends very long.  Like you, they were a tremendous support and I soon shared it with my church family as well, which gave me great peace.

I was recently retired when diagnosed so I did not have to make the decision on how soon to tell my workplace.  If that is what you are asking, it all depends on what kind of work you do and whether or not your symptoms are affecting your job performance.  If it were me, I would have waited as long as possible ..... of course you always run the risk of them finding out from someone else, if you have told others.

If your AN is already 3 cm you are nearly at the breaking point in size where radiation is generally not recommended ..... nor is waiting and watching for very long.  That leaves you surgery.  There are a number of excellent medical facilities around the country who will give free consultations based on your most recent MRI and audiogram.  You really want the physicians with the most successful experience treating this relatively rare, but benign, brain tumor.

Let us know how else we can help.

Clarice

[frenchjoey]

Hello!
I just wanted to welcome you to this forum. You will find great support and it does help to talk to people on the same boat. Your first reaction of not wanting to burden anyone with your problem shows you are a most generous person but I think this once you will have to let your friends and family help you. I was diagnosed last May and it was difficult not to mention something was wrong since I soon experienced intolerance to noise in public places. In between now and your treatment you will go through various stages (not necessarily bad ones, for that matter) and it will be comforting to have people who love you ready to just simply be there.
I hope your symptoms do not stop you from leading your usual normal everyday life because it's essential to be able to get away from this constant worry that's just entered your environment.
We will all help you as much as we can. Do not hesitate to ask as many questions as you need to.
Bye for now 
joey

[deheisel11]

Davdcz,
Welcome.  When anyone tells you that you have a "brain tumor", it is kind of difficult at first to figure out how to respond to anyone.  This forum was a godsend to me, especially Clarice who first answered your post.  You can find most of the answers to your questions here from many who have already been there.  We are all here to assist you.

[davecz]

Well, thanks everyone for responding and showing your support. I did want to mention that I hope my subject post wasn't taken as negative. I was just stating that I never really thought that something like this would happen. But then again, I'm sure all of you never expected to be diagnosed with AN. So this is very new to me and I've got a big decision to make soon. I'm really glad to have found this site. There really is a lot of very good information and the support forum is excellent. My surgeon, who I only met once, is very supportive and has not tried to push me in either direction. I'm very fortunate that a close friend of mine is one of the surgeons on staff. So he checks in with me from time to time. I will tackle this decision when I get back from vacation. My daughter and I are traveling to Ecuador to visit the Amazon jungle. I can't wait. And I'm not letting any of this get me down for now. I'm sure I'll have some bad days. I have a few questions. If anyone can relate to these please let me know. 

1. I have read that there may be a correlation with AN and being exposed to loud noises for an extended period of time. However, I can't seem to find any data to support this. Does anyone know about this claim. I spent 13 years in the military, which has taken its toll on my hearing already. So I'm researching this now. Any feedback would be appreciated.

2. Are there any documented cases post surgery of tinnitus going away. My tinnitus is so loud right now that I can't concentrate. It also causes problems when I'm in a crowd. I can only handle the noise for 15 minutes and then I have to get out of there. From what I've read so far, it doesn't seem to go away on many patients. Is this true? 

[cherrypiper]

i let the family , son, daughter, wife know fairly quickly. and then a few close friends . One of those gave me a really valuable clue.

she asked    "is it , the tumor, life threatening?" ummmm no it isn't. Good she said, then don't make it so. that was important for me to do as i can complicate corn flakes (I'm a chemical engineer who now is a teacher).

You will find much support here. i have for sure  i am just 4 years post op , and would do it again if i had to given all the things i know and even those that i have had to deal with after wards.

[Chances3]

Hi davecz,

Welcome to AN, and sorry to hear about your problems.  This is a great support site and you can talk to people who really understand what you're going through because many of us are going through the same problems, we're just a little further down the road.  I work in a small office and I didn't tell anyone until my last day before surgery.  Only my management knew ahead of time and those individuals who had to take my responsibility.  I'm kind of like a people person which means I like all my colleagues, and they all like me.  On my last day before surgery, I sent a mass email to the whole office explaining what was happening to me.  The response was incredible and very uplifting.

I have a wonderful ring in my head that has become louder and more annoying since surgery.  There's no magic pill for it, and it does get me down from day to day.  What you should stay away from, caffeine, alcohol, any type of nitrate or sulphides.   You need to find what seems to help you, I have found long quality of sleep, so I make sure to get plenty every night.  I wear ear plugs to and from my office, it kind of helps.  That's all I can think of right now, I'm still trying things and searching as well, so if you find that magic pill, don't forget to post it.

God Bless.

[james e]

Welcome. I did not share it with anyone other than my wife, until I decided how I would handle it. My wife is a drug rep and is around neurologist all day, and she was offered lots of advice. Most of the info I got came from this site. Two of the posters here used a doc in Houston, and I interviewed him, and he did my surgery. Ask lots of questions. None of them are stupid. Good luck with your outcome.

James

[schmidtkat]

Hi Davecz,
The subject line of your post could very well have been the same for all of us as we too found this site. The diagnosis and reality of something you would have never expected is a common thread with the members of this forum. Finding the right time and best way to share your news with family, friends and colleagues is as unique as each of those relationships is to you. Telling others brings with it a sense of acceptance, admission and reality of which one needs to be prepared.
For me, I felt the need to share the results of my testing and diagnosis with my immediate family right away. I was a bit more apprehensive about telling others until I found more information regarding ANs and determined a course of action. Once I had a plan for dealing with my AN I then shared what felt like a more complete story. After encouragement from others, I created a CaringBridge page and posted regular updates. This was a HUGE step for me as I am not a social networker and had never considered sharing my private life in such a public manner. That web site proved to be a great comfort for me, my family and friends. It was a simple way to keep everyone updated and I received such a generous outpouring of support.
I wish you all the best as you progress through this healing journey.
Kathy

[Crazycat]

I hear ya man. It's hard to believe I'm still lurking.....;-)

[Tamster]

Hi Dave,
I'm glad that you found this forum. For me, it was a huge help in making the decision about what to do next. Not only that, but just being able to read others' experiences and ask questions freely, night or day, was immensely useful. I hope you, too, find it both informative and supportive.  Feel free to read my experience on caring bridge. I'm two years post-op this month.

Tam

[Brewers7]

Hi Dave,
Welcome aboard.  Initially, I told only close family.  My husband set up a Caring Bridge site,  He maintained it until I was able.  I did not find this site until much later.  Caring Bridge was quite a comfort.
Susan

[HisHands]

Hi Dave,  I'm still very new on this site, but it has been invaluable to me.  I learned about my 2cm AN last month just before my 57th birthday.  Other than colds, I've never been sick in my life nor have I had to be on any medication other than occasional antibiotics.  I personally made the decision NOT to tell anyone, other than my husband (of course), one of my brothers which is a minister, my Mother and a coworker who is like my right hand and extremely trustworthy.  My only child, age 16, still does not know -- he was in the middle of exams and I wanted him to enjoy the holiday season. 

I'm extremely active in my community, civic organizations and have a relatively stressful job. My decision to keep this as secret as possible was not to burden my whole family, too. Additionally, I didn't want to constantly be faced with phone calls explaining brain tumor, cancer or not cancer, etc.  I try very hard to push out all the negative thoughts and focus only on the medical decisions to be made and positive thoughts rest of the time.  I received the support and encouragement I needed through my faith, the 4 people I chose to tell, my medical team, and thankfully, the people on this site. 

I decided to have Gamma Knife this past Friday, Dec 16, and I returned to work on Monday, Dec 19.  I've only had mild headaches and little fatigue after the treatment.  Prior to learning about my AN, I would bring work home and work until midnight or later.  I'm now making sure that I get plenty of rest at night and I can tell the difference the next day. 

Your question about noise....I've never been exposed to constant loud noises and noise does not seem to bother me at this point.  From my research, I haven't found anything conclusive as to what causes ANs.  I do, however, have to admit that I wonder about my constant cell phone usage of over 25years and usually on my left ear     I know there's no evidence regarding cell phone usage, but I'm just sharing my personal thought on my own situation.  I think we all try to figure out how and why we have this fairly rare AN, but whatever the reason....we have it and I've quit trying to figure out "why".  I'm just thankful medical advancements have been made to improve our quality of life over the long run.  In addition, I'm thankful a forum like this exists to provide helpful information and support.  Enjoy your vacation with your child and keep us up to date on your progress.  Emma

[chloes mema]

Welcome Dave.  I guess I'm the "chicken little" in this whole group, I've told everyone that will listen & some that won't.  I guess I wanted someone to say, it's ok, it'll all go away but so far no one has although I'm glad I've talked to as many medical people has I have.  Can't gather too much info about this.  Just this morning my dentist made the comment about is it life threatening then you're ok. 

As far as loud noises, I've read that about loud noises causing AN & I told my neurosurgeon that I was about 2 feet away from a lightning strike about 7 years ago.  He said the strike probably caused my initial hearing loss but not the tumor.  He also said that the tinnitus wouldn't go away for me.  I also have sensitivity to noise so the doctor suggested I get foam earplugs. 

Keep reading the posts in the forum, I've learned so much & feel so close to people I don't even know but have so much in common with.

Karen

[rvb755]

Hi, Dave and welcome to the forum.  It seems I reacted differently to most of the others upon finding out about my tumor.  I didn't try to keep it a secret from anyone.  I told my family, my boss at work and human resources and really anyone else that asked about it.  I was and am still functioning normally in nearly ever respect so I tried to make it not a big deal, even though I just wanted the thing out of my head.  As to your question about tinnitus, the ringing in the ear on my AN side has not changed post surgery, even thought the hearing is gone.  I have had the ringing for so long now that 90% of the time I am able to ignore it.  Best wishes to you as you decide what treatment option to pursue, and may you have a speedy recovery.

Rick