Ballerina with AN

[kraynok2]

Cindy,
   With your background as a dancer, you should do well.  The recovery period for me was not bad.  I went back to teaching kindergarten in 2 months.  I'm glad you researched and are happy with your decision.  In the end, you are the one that has to feel good about the doctor and which decision you have made.  We'll be here for you if you have any questions.  The people who have been here a while are so good at helping.  Good luck to you.
Sandy

[Keeping Up]

Hello Cindy

I am typically a huge proponent of the W&W brigade (I am 39 years old, small tumor all in the IAC [ear canal, far away from the brain], decent hearing, active, young children, no balance issues etc.).  I think with small asymptomatic tumors W&W is perfect - I have research which sindicates over 65% of small tumors don't grow in 10+ years.  So, W&W has tremendous advantages if you meet the criteria... but also risk of hearing loss and obviously continuous, yearly to every two year monitoring, so not a free ride! (and, heck the sucker may grow!!!)

However, your tumor isn't exactly small, isn't 'far' away from the brain stem (all relative I guess, it is just a couple of cm) and is causing you weakness/numbness in your face.  While no one really knows, my unprofessional guess is you are unlikely to make 10 years (or more) before the tumor will need to be managed.

You do have time.  If your doctors suggest a 6 month MRI - take the time to do your research and get comfortable with the risks, and then move forward at an appropriate time for you.  This forum has a great variety of experiences and backgrounds to help guide you in your decision.

Good luck.

Ann

[suz]

Hi Cindy and her "wart",
I wanted to share with you that I think being a ballerina does not necessarily give you better balance, but you do know alot of "tricks" to keep your balance. After my surgery I found that I was calling upon ballet skills I hadn't used since I was 16 years old. My vestibular nerve was cut during surgery to attempt to preserve hearing, so regaining/relearning balance took some work. But I remembered how to "spot" during pirouettes, which essentially involves using the eyes to trick the brain into thinking you are not spinning around. Same tricks involved in learning to use eyes to maintain balance after surgery.
I don't do ballet anymore, but I have been able to swing dance/jitterbug with my husband.  Overall my balance is fine, but if I don't concentrate I bump into things. Not a big deal.
The decisions we have to make regarding the treatment/surgery for an AN are very difficult. Luckily we have at least some time to research, etc. Have you considerred gettting one more opinion? Someone suggested to me that I have a consultation from the docs at House Ear Institute in LA; I did and that was probably the best thing I had done. They will do a free phone consultation for anyone. Rick Friedman, one of their neurotologists, spent a long time on the phone with me several times just speaking to me in a very straight-forward, respectful, and friendly manner. I had been on the fence after getting differing opinions from several doctors in my own city. After speaking with Doctor Friedman I felt very clear about what I wanted to do.
I wish you the best! You are not alone; keep in touch with the discussion board peeps. We are here!
Suz

[moe]

Hi Cindy!
Just wanted to welcome you to the site, and the fact that you are a ballerina is especially interesting to me.
I will be interested to hear how you do if and when you have surgery, post op.
My sister is actually writing a novel about a dancer who gets an AN. She is using my AN as a part of the book, and her experiences with dancing, so I am especially interested to see how you do!
Anyway, continue your research, this is the hardest part trying to make that decision, and you will feel much better when that decision is made 
Maureen

[Cindyswart]

How Novel! A book! Love it! It is very disheartening sometimes to stumble the way that I do, But I am a huge proponent of laughter, so laughing at myself is easy! I did get the second opinion and surgery it is. I will keep all updated as we go. The headaches are better thanks to the steroid that my neuro gave me. so for now I am W&W for that day. Thanks for all the good wishes!

[Cindyswart]

Well it is time for an update. I have been on prednisone for about 3 weeks now and am starting to step it down. No headaches anymore- doc thinks that there must have been some swelling and the pressure was causing the headaches. I met with my neurosurgeon and he wants to move the surgery up so my date is August 23. My hearing turns out is no damaged, only diminished, so he feels it is better to get this done while I have not inner ear involvement, better odds on how much of my hearing can be saved. As for the facial nerve, he is giving me very good odds that that will be just fine. So.... I now start preparing for the big day. I will keep you posted...

[Jim Scott]

Cindy ~

Thanks for the update.  Glad to learn that you're doing better.  You have another 60 days before the surgery so plenty of time to prepare.  Just ask if you need any information/suggestions. 

Jim

[moe]

Cindy,
Good, the hard part is over. Getting that decision and date. Just try to stay busy and focused on what you love doing (dancing?~still able to do that?). Once the date gets closer, we'd be happy to tell you what to KIND of expect. Everyone is different.
Take care now,
Maureen

[Cindyswart]

So, it is almost here, surgery is Tuesday morning. Most of life is normal, but I am not sleeping. just too much to think about. I am not second guessing my decision, just nervous about the outcome. I have been promised very good odds at hearing retention and no facial paralysis, but I know that until they actually get in there, there is no way to predict the actual outcome. this waiting is really the pits! par of me wishes that i could just go now...
If any of you have any info regarding post surgery stuff that you wish you had known, pls post!

Waiting....
Cindy

[Syl]

Cindy:

My doctors layed it all out for me. They informed me about all the possibilities regarding post-surgery life. Hanging out here on this forum certainly helped a great deal.

I'm glad you chose to go ahead and treat your AN. Though our tumors are slow-growing, inflammation alone can cause more damage. What causes this inflammation? I don't know. But that's what led me to get the darn thing out. The longer I waited, the higher the risks of nerves being damaged or of having a complicated surgery.

What surgical approach did you choose? Since you want to save your hearing, I figure it's not translab.

[Cindyswart]

My surgery will be keyhole, retrosig- my AN in April was 2.5 CM at largest point. They have given me odds of 70% hearing retention and 99% facial retention. I have a wonderful surgeon and great support from family and friends. I am just nervous!

[Jim Scott]

Cindy ~

Our thoughts and prayers are with you.  See you on 'the other side'! 

Jim

[moe]

Have faith in the surgeons, you're going to do great I believe!
Maureen

[Cindyswart]

In Case you haven't read- I am now post surgery! Life is getting back to normal- AN was three times the size that they thought and totally destroyed my hearing, now SSD on the right side. Was out of the hospital 5 days after a 9 hour surgery, back to work half days in 17 days. I will do half days for another few days then try full days as my stamina permits. The tinnitus happens occasionally as a wooshing sound, but never stays too long. No headaches and my hair is growing back pretty quickly. I know that i made the right decision and I do not regret it. Life is good.

[Jim Scott]

I know that i made the right decision and I do not regret it. Life is good.

It certainly is, Cindy.  I'm delighted to learn that your life is back on track.  Thanks for a very uplifting update! 

Jim