Sharing

[Raydean]

Dear List Members

In the beginning, from the day of discovery everyone faces fears.  Fears of the tumor,fears of treatment, fears of making the wrong choice, fears of complications, fears of how it may change your life, employment, relationships.  Sometimes it's hard to see beyond the fears.

For those that have chosen treatment, and those that have been waiting and watching we've all learned, or experienced something positive from our AN journey.  We've reached a point where we can look back and remember the fears, but also see the positive things that has come from all of this. It may help the newly diagnosed if we shared some what we gained.

It took awhile, but  for us it was the realization that the AN was a part of our life, but not our whole life.  That each of us are so much more then the AN. 

Please add to this by sharing a positive in your life directly related to your AN Journey, or something that you gained, or learned about yourself due to having a AN.

Best to All
Raydean

[steph]

At 31 I never thought I would  wake up everyday and thank God I am alive, but I do (most days). Have a AN was the worst thing that ever happened to me but sometimes when the tediousness of life seems a bit much I remind myself that I am here, here to see my little girl grow up and clean up after my husband ( I can't imagine what this house would look like if i wasn't around) It doesnt work when someone else reminds you how lucky you are, I hate that! It has to come from inside of you, and it won't be everyday or even most days but when it comes, enjoy it!

[centimeter]

  In the midst of the hustle bustle busyness of today's world, I was sent the most kind and calm RN to talk to me the night befor surgery and also another the day after which I have also referred to as: An angel sent by God! I saw the person once and once only and just 'knew'.

 C

[alwaysanonymous]

well, when i first found out it was a brain tumor i thought i was going to die since in 1st grade one of my friends died of a brain tumor(unfortunately his was cancerous). and then they told me it was benign and it was such a relief. after having been through that, it seems like there are always going to be bumps in the road to remind you life isnt about having the perfect life, its about how well you live yours. now i feel like i can do (almost) anything! also, i made a website for kid/teen AN patients post op/pre op/watch and wait or whatever so if your a kid come and check it out! here it is!http://health.groups.yahoo.com/group/ANteenandkid/

[GM]

At first my doctors "skirted" what they were looking for... but I caught on and began to ask questions about some of my scheduled tests.  I did personal research to include spending some time in major hospital medical libraries and was armed with questions for the doctor, but I was sure I just had tinitus as I worked around aircraft and eveyone I knew had some form of hearing loss.  But, I was floored, overwhelmed, confused, angry, and alone...when I got my MRI results back.  It was just me and two doctors...immediately after telling me about my tumor, they said that I needed an operation, and I'd loose my hearing in that ear...and...and...and   So here I am this normally well prepared guy just thinking about how I'd never enjoy the sound of my guitar again (how could I tune it?).  Music is everything to me, I'm not a great musician, but I really enjoy music.  It comforts me, it has helped me through major times in my life.  Would I lose this now? 

I told the docs I needed time, I had to get some train of thought. I had all this info that I researched and couldn't remember hardly any of it at the time.   So I went home, researched some more and found (personally), that information that was over 5 years old wouldn't help me to make up my mind, great for reference...but I wanted to know what the latest news/procedures were.  So, I made a priority list:  1) I wantd to keep the hearing I had in my AN ear (well try at least), 2) Miss the least amount of time from work, and 3) Try to go throught his only once. 
For me, the Gamma Knife was my choice.  I still have hearing in my AN ear and it hasn't changed much since my treatment.  My tumor has swollen slightly from 1.8 to 2.1, so I'm keeping my fingers crossed for my MRI in April.

What I've learned is...be a participant in my medical decisions, and not to be intimidated by any doctor.  Talk about how I feel (web sites, journels, friends, etc...it really helps to get it out).  And finally, not to let this rule my life, I plan to keep enjoying life, even if it involves ringing, clicks, and hearing loss.  If you are new to this, know that we've been there.  What ever path you choose, YOU have to make the choice, but that's the hardest part.  Most people will say that the decision is the hardest part, for me...after my choice, I calmed down.  No matter what happens, I feel that I made an educated choice that was right for me and am ready for what ever happens.  Good lluck in your journey and feel free to ask any questions here...or just vent 

[sirialison]

My name is Siri, I am 41 years old and was diagnosed October 5, 2004 with a left side 3.5 cm AN. I had retro-sig surgery at the Mayo Clinic is Rochester, MN on November 24th, was discharged on November 27th and was back to my home (six hours away) on November 28th. All of this went VERY quickly as I had quite a bit of brain compression - not a lot of options when you get to the point where I was. Amazingly enough, all of the symptoms I had experienced (prior to a bad case of veritgo in September when I fell and broke my foot) were easily attributed to other health problems I was dealing with or had dealt with in the past. With the help of Google, I found the ANA website (as well a lot of other good information) and was able to "self" diagnose prior to the "official" diagnosis. Anyway...

Except on a bad day, this whole thing has been quite an adventure and is probably one of the BEST things I have ever had happen to me (crazy enough, huh?)!!! If I had a personal top ten for having an AN, learning to listen  and TRUST what my body is telling me (and not neccessarily the G.P.) would rank right at the top! We are our own best advocates when it comes to health care of any kind - seriously, who knows your body better than you?

Thanks.

[Becky]

"If I had a personal top ten for having an AN, learning to listen  and TRUST what my body is telling me (and not neccessarily the G.P.) would rank right at the top! We are our own best advocates when it comes to health care of any kind - seriously, who knows your body better than you? "

AMEN to that !!

Becky

[dixie]

Becky - A second AMEN!!