First time Poster, surgery in July

[Darin]

   Hi, I found out I have a 3cm AN about a month ago. I am 25, and it still seems unreal that I have something like this when I am so young. I noticed I had hearing loss in my right ear for several years, no big deal right? Probably all those concerts that my parents always told me not to go to...the MRI showed otherwise. I just had an ENG and ABR testing done last Wednesday (4-29), and I don't have the results from those yet. I only felt a tiny bit dizzy for the ENG, but it was really barely noticeable. I met with one neurosurgeon so far, and really liked him. I asked him how many AN surgeries he's done, and he said he quit counting a long time ago. I liked that answer! He has also worked with the other Neuro who's doing my surgery for over ten years, so that is comforting as well.
  The frustrating part is just sitting here, knowing it is out of my control to improve anything about the tumor. I am a runner, and just bought a sweet road bike(Trek 1200) the weekend before I got the results from my first MRI, because I wanted to do a triathlon this summer. I work full time, and go to school at nights. It's like life is on hold right now, I wish I could have the surgery now. The Neuro said July is when surgery will be, no exact date yet. I just did another MRI, brain and spine, yesterday. Apparently the first MRI wasn't 'high res' enough or something, and didn't show clearly the exact location of the tumor. It could be a Meningioma, or a Schwonnoma. He discussed either translab or the other one more behind the head to preserve the hearing I have left, which is about 50%.
  I have a large(my parents had 7 kids!!!) family, so that is helpful. I feel like I could write a book, there is just so much to say about all the emotions going on with something like this. I also am going through an unwanted divorce, which I was going to personal counseling to work thru. I had my last session about 3 weeks before I found out about my AN. 2009 will be a year that lives in infamy for me. I try to keep positive though, my boss is super understanding and cares about me as a person first. He has told me whatever time I have to take off is fine, even if there's no doctor's appointments and I just need a break. That is something to be thankful for. I did have insurance thru my wife's work, and now will be going on COBRA, and my boss said he'd help with the cost there.
   I've read alot the past month on this site, and it's helped to read about all the different things that people have gone thru/are going thru. I just wanted to throw my hat in the ring, in the hopes to help others, as other people's challenges have helped me. I will know more details after the 13th of May, that is my first appt. with the second neurosurgeon involved in the surgery. I am hoping this second MRI shows what direction we are going to go with for surgery.
  With all that said...now it kind of feels like I'm part of the group now, instead of just some weirdo stalker who never posts anything, just reads.  Nice to meet everybody! Hopefully I didn't leave any major points out, but if you have any questions, fire away.

[wendysig]

Darin,
Welcome to this forum. I know you will find it to be a great source of information, compassion and empathy.  I'm sorry you have to be here but am glad you found us.  I know what you mean about wanting to have the surgery as soon as possible, waiting is hard to do, but believe me when I say July and your surgery will be here before you know it.  For now ask whatever questions you need to, vent and if you want to, join in the wackieness that goes on here occasionally.  We are here for you however we can be.

Wendy

[sgerrard]

I just wanted to throw my hat in the ring, in the hopes to help others, as other people's challenges have helped me.

I have a question - what kind of hat? 

Hi Darin, glad you joined us.

I think you get on that bike and ride yourself into the best shape you've ever been, before that surgery in July. Being fit can make a huge difference. It sounds to me like you can let the surgeons worry about the details at this point. Where are you and where are you having the surgery?

Welcome to the forum.

Steve

[tatianne]

Hey Darin
Welcome to the form and I just want you to know that the family here is also big and you will find support, and understanding...so your blessed two times.
I was 30 when I found out about my AN, and also going thru an unwanted divorce..Your story really touched my heart, being quite similar.
Things will get easier in all aspects with time. Im happy to hear that you have a good neuro and have a scheduled date for surgery.
Its really unfortunate life has to be put on hold sometimes, but maybe take this time to focus on you...rest your body, mind and soul.
Most importantly, you will be fine, you will get thru all of this and come out a better, stronger person.
Thanks for sharing your story with us and joining our family here.
If you need anything or just to talk pls dont hesitate.
Take care and God Bless
T

[cindyj]

Hi, Darin, and welcome!  Glad you've joined us, but sorry you had to.  What a great post - I can just feel that you are going to do well...you certainly have youth on your side and with your running and bike riding you will be in great shape going into surgery.  Know what you mean about life seeming to be on hold, but since your decision is made, try to just carry on as normally as possible til July.  We're here for any questions you have, but is sounds like you've informed yourself very well already!

Take care and keep us posted,

Cindy

[Lilan]

Darin, welcome. Becoming a poster for the first time is almost as exciting as becoming a postie (post-surgery!)  I "lurked" for a long time too before diving in.

I see a lot of positives here. Young and athletic, good insurance, caring boss, and a tumor of a size that eliminates too much pesky stalling and mind-game decision-making -- you know you just have to get that sucker out. Once some of the shock wears off, you'll find that facing your worst fears will (cliche alert!) make you a stronger person. It's humbling to have a health scare and need care (temporarily) at a younger age, but it holds important lessons, too.

You seem confident in your doctors and they seem confident as well, which is great. You do have every right to ask about their "numbers" and success rates with different types of surgical approaches, etc. You didn't say where you are, so can't guess if "stopped counting" means they ran out of fingers    , or they've passed well into the hundreds, which may be an important distinction.

[leapyrtwins]

It could be a Meningioma, or a Schwonnoma.

Hi, Darin and welcome to the forum.
 
Just wanted to note that vestibular schwannoma (I think I spelled that right) is another name for an Acoustic Neuroma, so it sounds like you either have an AN or a meningioma.  Whichever it is, you've come to the right place.

You are definitely on the right path by finding doctors who are very experienced in treating ANs; a key factor to be sure.

As Steve said, going into surgery, being fit can make a huge difference.  And post op many of our fellow forumites have resumed their athletic lifestyle - some run half and full marathons, ride bikes for long distances, kayak, etc. 

If you haven't contacted the ANA yet, you might to consider it.  They have lots of great literature they can send to you that you'll find very helpful as you embark on your AN journey.

Good luck,

Jan   

[Kaybo]

Darin~
Hi and welcome to our wacky little group!  I am glad that you have "come out" - even though it has to be for an AN.  I also had my surgery when I was 25 - I definitely think that YOUTH is on your side!!  I agree with the others that I think that everything will go better the better shape you are in.  Please feel free to contact me if you have any questions from the "young" side of it (even though I am not young anymore! LOL)

K

[NancyMc]

Being fit can make a huge difference.

Or you can go in totally de-conditioned and overweight like me and come out just fine! 
Thinking I'd lose all kinds of weight due to this surgery, I just had a grand old time enjoying life up to the day.  Of course, I didn't get that particular outcome at all, so it's back to diet and exercise before bathing suit season.

Darin,
You have a wonderful attitude.  Many of us have been through hellacious divorces in recent years, and then this hits us on the head, so we can commiserate.  We're here to help you get over this hurdle, so lean on us.  Trust in the skill and experience of your surgeons.  Each case is different, but with their expert hands and our personal histories, we'll get you to Postieland and beyond. 
Keep those tires inflated and register for a triathlon in the fall.  You'll be training by August.
NancyMc

[SML]

Hi Darin,

I just wanted to welcome you to this forum too. I’m sorry you have to join us, but glad you found us.

This Wednesday will be 7 weeks since my Retrosigmoid surgery. I was a wreck when I was first diagnosed and finding this forum helped me in so many ways. I found answers to my questions, support from all of the awesome people here and a place to vent when I needed it. I too did mostly reading at first, and I found that not only did reading about everyone’s experiences help, but also seeing how you can keep a sense of humor in lieu of all the bad. Mostly I found a comfort and the reassurance that I was not alone and that everyone here understands and truly cares.

As others have said, with your youth, physical fitness, the support of family and friends (old and new) and an experienced team of doctors… you’ll be back in the game in no time.

Scarlett

[28Lisa]

Welcome Darin, just know that you're not alone on this journey.  

What made you go get checked out?  Mine was vision probs and hear lost so I went to an optomologist in the mall and she sent me straight to the hospital.  Two days later it was confirmed..... I was only 26.  4.5cm which meant I had it for years unknowingly.  The dr said it was very unusual for it to be so big at my age.

Anyways do your research, pose your questions to the drs on your next visit.

We too are here to support you, so hang in there

Wishing you all the best

Lisa

[Vivian B.]

Hi Darin,

Welcome to the forum. I just wanted to let you know that your feelings towards this are not unatural, however, know that you will be fine and as you will see from the forum, everybody has come out of their treatment fine. I found out myself that the reason why the tumour might be referred to a meningioma is that it may be attached to the ear bone and anything attached to a bone is supposedly arising from the meninges. Both AN and meningioma are of the same pathology and treated the same. A schawoma I think is the same as an AN if I not mistaken. The important thing to remember is that these things are benign and treatable and people of all ages may be prone to it. Keep your spirits up as this is one of the most important things. Good luck.

Vivian

[Kim Zingale]

Hi Darin,

Just wanted to say welcome and that things will be ok. I am 26 and was diagnosed last August. I had surgery in February (coming up on my 3 month anniversary), and I'm doing great now. I really do think that being younger when going through surgery makes it a lot easier, as does having a great surgical team. If you don't mind me asking, where are you located?

Wishing you confidence and decisiveness,

Kim

[msmaggie]

Welcome to our world....wish it could have been a trip to the Bahamas instead!  You sound like you are on the process of accepting the fact that somethingis going on in your head.  Mine was a meningioma, but the surgery was the same (retrosigmoid) as for an AN.  Stay in touch with us.  You wll benefit from all the wisdom and insight, not the mention the humor and compassion, of all the forumites.  Keep us posted on what you are finding out about your condition. We want to hear all about it!

Priscilla

[Kathy M]

HI Darin,

Just another member of the AN Welcome Wagon saying hello to you and glad you found us (and sorry you had to).  I can't think of thing to add here - as you can see we're a warm bunch and are ready to help in any way we can.  Your story rings familiar to so many here - my AN was the same size as yours.  Sounds you are already getting things lined up for your surgery and you have a great support system through work and family.  Now that you've introduced yourself, please feel free to ask any questions that come to mind.  I have found that there is always someone who has a lot to offer - and most of the time, you'll have a lot of folks who can help!!

Take good care,

Kathy