Finally Decided to put in my 2 cents

[dlaczynski]

In March 2009 I was diagnosed with an Acoustic Nueroma.  I had been having tinnitus in my left ear for some time and honestly thought I had a bad sinus infection. My wife got concerned and sent me to an ECT. After the hearing test, which I lost about 60% of he told me that I needed an MRI. I’ll never forget the day I was called and told I had an acoustic that was 1.8cmX1.6cm. After the initial freaking out stage I started doing research and got more freaked out.  Then I found this site and it scared me even more and I was reluctant to post . After many second opinions and many co-pays my wife and I decided that the GammaKinfe was for me.  So on 9-11-09 I went into St. Joseph hospital here in Atlanta and got “Nuked”! The procedure really wasn’t that bad, I had a slight headache going in that morning so I was given 2 loratabs and after that I was good to go. Needless to say I am doing well, I still have hearing loss, the tinnitus is a real pain and I am pretty clumsy at times, no more getting on ladders which isn’t so bad! I look forward to my 6 month follow and maybe something to help the hearing in my ear and stop the tinnitus, so any advice would be great on that.
Anyway, the reason I decided I finally decided to step up and put in my 2 cents is that a coworker of mine mention he had some facial paralysis and lost some of his hearing. I immediately told him about my AN and that he needed to get check ASAP. Well today he called and told me he a mass that was 2.6cm X2.0cm and was seeing a neurosurgeon on Friday.  I knew how scary it was to get this kind of news so I want to be there for him during this process and share my experience with everyone and who knows give advice where I can. I know he will see this and hope it eases his mind. It is rare I think for two people in the same office to have one of these pesky things in our heads, but who knows stranger things could happen I guess.
I think this forum is wonderful, though it can be a little overwhelming at times and I am glad I found it.
Recently Nuked,

David

[ppearl214]

HI David and welcome.  Sending wellness wishes your way post-GK... and glad you shared your story (and your co-worker's situation) with us.

As not to overwhelm.... if you have been "lurking" here, you have a sense of how the info here is shared... and how to find add'l info.  so with that said.....

continued wellness wishes to you.... hope to meet you during my next trip to ATL (family on Northside of town).... and again, welcome.


Previously "nuked"
Phyl

[dlaczynski]

this is the best place by far to find our information and it did help me along the way. I have learned the AN isn't the end of the world and life does go on just have to get used to the bumps in the road.

[Brendalu]

David,
I am glad you found this neat little place.  The folks here are best.  I am sorry you had to find us because of the pesky AN and it is so unusual for two people to have the one in such close proximity!  Thanks for sharing your story and good luck on your six month check up. I'm sending positive thoughts and energy for your friend and you.  He is lucky to have someone close by to help through the process.
Brenda

[lawmama]

David,

Wow, I cannot imagine the odds of two people in the same office having the same kind of rare brain tumor!  That's pretty amazing.  Maybe the two of you should buy a lottery ticket together.     You've had bad luck, so I think you are both due some good luck.

Anyway, I do understand what you mean about this site being a little overwhelming, but I think if you had jumped in and posted earlier you would have seen the other side- the tremendous support.   I really feel like the people on this site are just amazing.  They are warm and caring and always there to offer a kind word.  That is just incredibly important for people who are going through a very scary medical crisis.

I think another reason that some people might find the information about AN's a little overwhelming is because it is!  Brain tumors are scary and there really are no guarantees with any of the treatment options.  Still, I feel like I have been a success story and I've tried to stay around enough to share that on here so other people who come behind me will maybe find a balance of good and scary stories.  I had a retrosigmoid removal of my tumor just 5 weeks ago on Monday.  Besides being SSD, I already feel very close to "normal."  I am back to my regular life and I feel happier and more blessed than ever to have had wonderful family and supportive friends who helped me through this.  It was a bump in my life, for sure, but an AN diagnosis is almost always far from a death sentence.

Sorry for rambling a bit.  I wish your friend the best of luck dealing with his or her AN.  It is not something I would wish on anyone.

Lyn

[Vivian B.]

Hi David,

Your experience sounds exactly like mine. I started having ringing in my ears thought it was sinuses, when I realized it wasn't going away I saw an ENT who confirmed 30% hearing loss to the nerve, an MRI later, and diagnosis in March 09 just like yourself. I also freaked out and eventually started taking anxiety pills as I had this constant feeling inside of being scared. Anyway thanks to this forum, and my daughter for finding it for me, I am doing much better and just looking forward to my next MRI in May 2010. It is odd that there are two people at your work with the same thing. One girl that works with me always complains of ringing in one of her ears and actually told me that she can't hear well out of it. I told her my story and said she should get it checked. She said she was too afraid. I thank my ENT everyday for sending me for an MRI. I may have not know at all until it got too large.

Vivian

[Jim Scott]

Hi, David ~

I just wanted to add my welcome and congratulate you on a successful nuking, er, GammaKnife treatment. Yes, the wealth of information available here and elsewhere on the internet can be somewhat overwhelming but if you 'digest' it in 'small bites', it helps.

I wish your friend well as he begins his 'journey' and of course, we hope he decides to register and post because there are a lot of folks here that are eager to help, advise and support him along the way.  That's the point of the site and, especially, the discussion forums.   I'm glad you discovered us and I hope you'll be a frequent visitor.  

Jim

[leapyrtwins]

Welcome to the Forum, David.

Thanks for joining us!

Jan

[sgerrard]

That's gotta be more like 50 cents worth. I hope you and your copy-cat friend both join us. Best wishes to both of you.

For the hearing, maybe a hearing aid?  My best advice about the tinnitus is to stop thinking about it. 

Steve

[dlaczynski]

You know the biggest reason I did not join this great forum earlier was because i wasn't going to make a big deal about the tumor. I didn't allow any one but my wife and mother in law come for the procedure, I thought that If I didn't make a big fuss about the tumor then it wouldn't be a big deal and I could handle it. I think that was the best decision for me, I needed to do this on my own, that was the only way mentally i could accept having the tumor and get through the GK. Call me crazy, but it worked for me. I joined now to help my friend and anyone else that wants someone that has been there, looking back I should have joined the support in this forum is outstanding but at the time I just couldn't. I hope that makes a little sense. I admire everyone that has to deal with this burden on a daily basis and I am thankful to find a place that helps others get through the process. There are a lot of people there that just don't understand what we are or have gone through with our AN's, that is why this arena is a great place for us all to put in our 2 cents.

[cindyj]

Hi, David!  Glad you did decide to join us and what a story about your co-worker!  Know what you mean about trying to keep the whole AN thing low-key...I did the same, always have when it comes to my various health issues. 

Wanted to let you know that I, and several others here on the forum also live in Atlanta - I'm up in Forsyth County.  We have started having Support Group meetings and would love to have you and your co-worker join us.  The next meeting is on Feb 13th at 2:00 at N'side Hospital.  If you will contact the ANA office, they will put you on the mailing list to receive the info about the meetings.  I will also send you a PM with my phone number and more info about it. 

Hope to see you there!  In the meantime, glad to have you here!

Cindy

[Syl]

It is rare I think for two people in the same office to have one of these pesky things in our heads...

David:

There was a guy at work, but in a different department, who had AN surgery 1.5 years before I did. A third co-worker introduced us because she knew about both of our ANs. It helped me a great deal to learn of his experience, & it made the decision-making process much easier for me.

I agree with you about this discussion forum. It's also helped me a great deal. No one understands our ANs like these folks do.

Syl

[suboo73]

Welcome Dave!

Glad you are here and healing prayers as a toastie postie!
I think it is wonderful you joined and maybe your co-worker will too.

I work at a university and met an international student from Africa.
Then i learned that her brother had had AN surgery and was having lots of issues...i recommended the Forum for support.

Please let your co-worker know we are here for him!

Sincerely,
Sue

[dlaczynski]

He joined over the weekend, lifeofbrian is his ID, as I told him today, we are all here with him through this process.

[suz]

Welcome, and I hope you keep putting your two cents in!
The nice thing about this forum is that you can come and go as you please. There have been times when I have been too much in denial, or too afraid to really spend much time here; other times it has been SOOOO healing to have fellow-AN-ers to share stuff with.  I am sort of jealous that you have an AN buddy right in your office! Not that I would wish it on anyone, but it does help to have a friend who understands what you are going through. Best of luck to both of you.
Suz