And the countdown begins! 47 days...

[Darin]

    Hey everybody, I received the official surgery date of July 1st today. Pretty crazy, I'm going to have brain surgery! I met with the 2nd surgeon on Wednesday, and I am really glad I met with the other surgeon first. Some people have 'people skills', and some people don't  I still don't know what surgery style I'm going to have, retrosiggmoid or translabyrinthe. I thought that it is kind of crappy to be only 47 days away from surgery, and still not have an answer on that. I have another appointment with the other neurosurgeon on June 16th, and I suppose I will find out the details then. The Neuro said that because of the placement of my tumor, he didn't want to make a decision on retro vs. trans. until after he gets the results from my higher res MRI and gets a chance to talk to the 2nd surgeon. It doesn't bother me too much not knowing. I am confident in both doctors, so that helps.
   The hospital where my surgery is going to be has a two campuses, and I am going to be at the one I prefer, so that is nice.
   I am really surprised at how much worse the ringing in my ear has gotten. A couple months ago, it rang off and on, but more off than on. Now, it's nearly 24/7. I haven't noticed too much that irritates it, other than loud noise. I thankfully don't have any other symptoms so far. It's a 3cm tumor, so I feel fortunate to not really have anything else damaged by it (thus far). I was told that it is odd shaped, it's more oblong than round. The surgeon said that would make it difficult to radiate it. Also because I'm 25, and the large size already of the tumor, that radiation isn't the best option in my case. I agreed with their conclusion.
   I was already looking at races in the fall, trying to figure out the time line like, "ok, 4 days in the hospital, 4 weeks of not much, then running a little...Yeah, I can totally do a 5k in October!"
   I thought I would be happy once I find out the actual surgery date, but it's been more difficult keeping it together emotionally not that the countdown has begun. It used to be, "I'm having brain surgery sometime in the future." Now it's like, "I'm having brain surgery in only 6 weeks! Holy crap!" I'm trying to just 'take it one day at a time' and all those other cliche things. Some days are good, and some days aren't as good. I guess if you didn't have bad you wouldn't appreciate the good. (whoops, another cliche) I'd also like to add, just like so many other people have said as well, that this forum is really helpful. Not one person that I personally know has ever heard of an Acoustic Neuroma, so it's comforting to get on here and be able to read other people's experiences.
And the journey continues...

[EJTampa]

Hey Darin,
 
Congratulations on receiving your date for the surgery!  Don't worry, the hard part is waiting.  The caregiver has the hardest part on the day of your surgery .  You just get to sleep the whole day!
 
I think you will eventually, hopefully soon, find peace in having a date set.  For me, that "sometime in the future" thing was eating away at me.  Was it going to get bigger?  Was I going to have another symptom crop up before surgery?  Having the date at least allowed me to see the light at the end of the tunnel.
 
We'll be praying for you as your day approaches!
 
Ernie

[CHD63]

Great news, Darin .....

I was never in the watch and wait situation due to the rapid growing nature of my AN, but I still relaxed when the date was set and I had a timeline to get things done beforehand (in reality I had 10 days!!).  The next 47 days will go by much more rapidly than you think they will.

My prayers will be with you as you make the necessary preparations.  As Ernie said, the day of surgery will be a missed day out of your life, but the relief that it is over and behind you is tremendous.  Then you can focus on healing to prepare for the October race.

Clarice

[leapyrtwins]

As yes, the whole AN journey.  I remember it well 

Good luck, Darin.

Jan

[grega]

Hi again Darin,

I like that phrase you said is a cliche .... "I guess if you didn't have bad you wouldn't appreciate the good."  Thanks .... I hadn't heard that before.  Yep, you'll have bad days, but you'll get encouragement and love from those on ANA's forum on any subject you throw at us.  Hope you've had a chance to read all the nice responses to your post in early May.

You mentioned that the tinnitus has become constant, and that loud stuff makes it worse .... I and many others here also have that condition.  Hope you're able to keep active enough to not let it control your life.  The American Tinnitus Association is another great website to investigate for lots of helpful info .... try  www.ata.org  some time.

It's good to vent..... here and to your friends and family.  And here's hoping you're able to make that race in October!  Best to ya!

Greg

[stoneaxe]

Good luck Darin. I'm sure you're anxious to get it over with. I'm hoping to get good news on Monday for an early surgery date. Early June hopefully so I can participate Aug 15th in a charity event I'm co-founder of. I might just make it if I get in that early. Good to have something to focus on post-surgery as a goal I think.

[Keri]

Hi Darin,
I'm glad you got a surgery date too. When I found out my date, people always asked me about it and it seemed like soooo far away in the future; I just couldn't comprehend it. But the time goes by and then I think you get ready to get it over with. Like you (and I think quite a few others), as it got closer certain symtoms became worse (in my case, tinnitus and balance issues, some mild headaches). I would come on the forum and ask 'is this my imagination... or is it all in my head that now I'm experiencing these symptoms?' I thought my tumor was growing and doubling in size (later found out it had grown, but just a very little bit). So I think what you're going through is quite normal.

I definitely think you'll be able to do a 5K in October. My doc said I could running 3 weeks post op. I didn't ever feel like it initially, but felt better once I was done. I was able to do a half marathon about 8 weeks post op (I only tried it because I had signed up for it so long ago). It was fine. Many others on here have done some great athletic things post op - Jeanine just completed a half, Patrick biked 150 miles in a MS charity race, and Bob... his charity event goal (correct me if I'm wrong) is paddleboarding a ton of miles when he's a couple of months post op. I hope he's able to do it (it's a lofty and admirable goal).

I hope and pray you're surgery and recovery go well.
Thanks for the updates!
Keri

[nteeman]

Darin,

Best wishes for your upcoming surgery. I think your planning for recovery in time for upcoming events is a great way to look towards it.  I will be rooting for you to make all your planned events. It can be done!

Cheers,

Neal

[Kate B]

    Hey everybody, I received the official surgery date of July 1st today. Pretty crazy, I'm going to have brain surgery! I met with the 2nd surgeon on Wednesday, and I am really glad I met with the other surgeon first. Some people have 'people skills', and some people don't 
   
The surgeon said that would make it difficult to radiate it. Also because I'm 25, and the large size already of the tumor, that radiation isn't the best option in my case. I agreed with their conclusion.
   
I thought I would be happy once I find out the actual surgery date, but it's been more difficult keeping it together emotionally not that the countdown has begun. It used to be, "I'm having brain surgery sometime in the future." Now it's like, "I'm having brain surgery in only 6 weeks! Holy crap!" I'm trying to just 'take it one day at a time' and all those other cliche things.

Not one person that I personally know has ever heard of an Acoustic Neuroma, so it's comforting to get on here and be able to read other people's experiences.
And the journey continues...

Darin,
You have a lot going on at 25. My son is about your age and you are just establishing yourself and along comes this dang brain tumor to interfere with your plans.  The up and down days are normal.   The anticipation of the surgery and wondering about the outcome can cause you to think, "Holy Crap!"  It is real now.  With a 3 cm  odd-shaped tumor, I am not surprised that they did not recommend radiation. 

Tell me about where you are going for your surgery and share  some about your doctor.  You are right about people skills--not all doctors have them.  In our situation, the doctor's record is equally important.  You want to be the "garden" variety on the surgery table and preferably not the "I do one a month" ...

I am glad you found this forum, cause you are right...there is no better group of people who have first hand experience with this!!

All the best,
Kate