New member seeks advice

[stef84]

Hello!
I am 25 and new to this forum. I will also be scheduling my surgery with Dr. Roland and Dr. Golfinos. I wanted to ask you how you found the doctors and hospital. I am incredibly nervous, and am so happy that I found this forum.

[Kaybo]

Hi Stef & welcome!  So glad that you found us.  Can you tell us a bit more about yourself and your tumor?  I guess if you are already scheduling your surgery, you've already done some research into Dr.s?  I have heard those names before many times - you will be in good hands!!  I was 25 when they discovered my tumor and I had surgery too!  Please feel free to ask us anything!

K   

[leapyrtwins]

Hi, Stef.

I think you posted on a few threads yesterday; I responded to one of them.

But welcome again!   

Jan

[stef84]

I did post a few threads! Haha - I was so thrilled to find the forum, and may have gone overboard.

I will be 25 next month. I am a teacher and realized that something was wrong when I could not hear the students whispering in my right ear. I also had a few cases of vertigo where I could not lift my head from my desk. After seeing an ENT and my regular doctor, I went for an MRI. My tumor was 11mm in July. I recently had another MRI and it grew 3mm. This year, I am a special ed. teacher, and am trying to hold out as long as possible so as not to leave my students before the standardized tests in May.

I am constantly imbalanced and I believe I only have 15% hearing left in my right ear (which is rapidly decreasing). I am happy to find someone who also went through the surgery at 25. My friends and family are so supportive. Though it is a small tumor, it still frustrates me terribly.

What kind of surgery did you have? I will be having translab. since my hearing is not worth saving.

I have a million questions to ask about the pre and post surgery and recuperation, I don't know where to begin!

I am also very nervous about all of the potential complications...I have heard a lot about spinal fluid leakage and facial paralysis.


Thank you so much for replying to my thread!     

[Kaybo]

OMGoodness - that is EXACTLY what I have told people for 14 years now when they ask me what made me go to the Dr. and the main reason (& the one I always say) is, "because I started teaching classroom and I couldn't hear their little voices..."
If you would like, I would be more than happy to call you and chat...just PM (left) me your number and a good time to call...

K   

[CHD63]

Hi again, Stef .....

As a retired teacher, I can identify with wanting to be with your students until May.  However, if your MRIs were done at the same place and read by the same radiologist, it sounds like your AN may be growing a little faster than most.  Also your symptoms are not likely to get better until you have treatment.  Did your doctors recommend a surgery time-frame?  You need to put your own health as a priority at this point.

As for worrying about CSF leaks or facial paralysis ..... these are both major concerns but do not happen with every surgery by any means.  Translab surgery has the best record for total tumor removal, but always results in total hearing loss.  CSF leaks are rare but they can happen.  Facial paralysis is largely dependent upon the location and size/shape of your AN.  Skill of the surgeon is also important at this point.  Your doctors are highly respected so their skill should not be an issue.

I had retrosigmoid approach surgery for a 2+ cm AN and had neither a CSF leak nor any facial paralysis.  I lost all but 20% of my hearing in the AN side ear (had already lost 20% before surgery) and have ongoing balance issues (mostly due to having had two brain surgeries with vestibular damage to both sides).

Start working on those million questions    ..... that's what we are here for!

Best thoughts.

Clarice

[lawmama]

Hi Stef,

And welcome!  Trying to fit treatment around a busy schedule can be so frustrating.  I'm having my surgery next Monday because I am a student and I hope to return to class in the Spring without taking a semester off (or missing too many days in a semester).  This whole thing feels like such a disruption to me, and I'm sure you must be feeling the same way. 

I am sorry to hear about your symptoms.  My surgeon was surprised that my small tumor is giving me so much trouble, but he said the funny thing about these is that every person is different. 

Best of luck and I look forward to getting to know you better.  This board has been such a fantastic resource for me.  Until I found it, I didn't really feel like anyone else understood. These people understand!  Take care.

Lyn

[Nickittynic]

Hello and welcome. Also 24 years old and just had my surgery in September. 

[Tricia (horsekayak)]

Hi, welcome

I noticed my early symptoms when i began thinking that the horses i worked with were "quieter" when they stood on my right side -- DUH!!!   It's funny now, but at the tiime, I was convinced that i was projecting some magic kind of "horse whisperer" mojo from my right side....whoooo boy..

You've found a great place to be:  lots of supportive, knowledgeable people who can try to understand, help support and explain things to you.  And if you havent already, the Acoustic neuroma associatioin has some great free materials you can request.

I hope that you are feeling good about having made your decision about treatment.  The waiting for the procedure can be a little crazy-making, but I was able to work up until about 3 weeks prior to mine, so that helped.  And communicating with folks on this forum was  (and is) a true life saver.

I admire you so much for your concern for your students.  Good, involved, cariing teachers are a national treasure.  Your students are lucky to have you.

Wishing you all the best, and will be thinking about you and sending you good thoughts!!!

tricia  (horsekayak)

[Sue Vogel]

Hi Stef,  Think only positive thoughts and know that your students are going to be fine.  I remember my ENT taking me by the shoulders when I was freaking out about my students and their parents as he initially informed me of my tumor.  He said "For once, you have to think about you."  He was correct.  I'm a veteran teacher, (and I was 25 once.)  My surgery was in Oct. of 2008, and I've been back in the classroom since the first of January.  There are several teachers who frequent the forum.  We may have some insights to assist you in your journey.  I had translab., also.  If you want to talk or have questions or concerns, please, please contact me.  Gather as much information as you can and ask lots of questions.  You are going to be great.  Teachers are some of the most resilient persons around.  Best wishes.

SUE

[sgerrard]

I did post a few threads! Haha - I was so thrilled to find the forum, and may have gone overboard.

Thrilled we like. Overboard is not a problem - usually.

Welcome to the forum, Stefani.

Steve

[suboo73]

Hi Stef,

Sorry you had to join this exclusive club - and at such a young age! 
But you have met the most INCREDIBLE & FANTASTIC group of folks anywhere!
So keep asking your questions and you will get answers.

When i read your post, i was also thinking of Kim - her story called "Adventures with Manny" is about her AN journey and it is featured in the Dec. 2009 ANA Newsletter.  You can get a lot of great information thru the ANA Association, so you might want to consider joining.

I cannot help you with your surgery questions...but i can relate to not hearing the children.  I was a preschool teacher when i first went to an ENT complaining of hearing loss.  However, he did not recommend any other tests, so i was 'misdiagnosed' for a long time. 

Best wishes on your AN journey and treatment decisions.  I always read great things about the doctors you are seeing!

My thoughts and prayers are with you during this time.
Sincerely,
Sue

[jtd71465]

I had surgery with Dr Roland and Dr Golfinos on January 10, 2007, I am scheduled for my three year follow-up this year.  Please send me a PM so I can exchange my contact information (home/work phone numbers).  I am always willing to talk.

You are in great hands.

Joe

[wendysig]

Hi Stef,

Since the welcome wagon has already been out in full force, I don't have much to add.  As you can see, there are a lot of wonderful and caring people here ready and willing to help.   The AN diagnosis is a frightening one and  I think I can safely say that we've all been where you are now.  Feel free to ask any questions or just vent when you need to.  If you haven't already done so, I'd suggest that you request the information packet from ANA (on front page).  Several members have gone to  Drs. Golfinos and Roland and  have wonderful things to say about them.  Joe has already replied and I'm sure others will. 

I also had translab and found being SSD (single sided deaf) too difficult to deal with.  I have since had BAHA surgery (Bone anchored heading aid) which implants an abutment in your skull to you attach a sound processor.  It's much simpler than you might think it sounds right now, and the surgery is really a very simple procedure, often done under local anesthesia (you could have general anesthesia if you wanted to).  Although it is not the same as natural hearing, it is a big improvement and worth consideration.  There is also a non-surgical device called TransEar that also works through bone conduction that works nearly as well. But one thing at a time.  Ask questions, get answers, do research and hang in there.

Best wishes,
Wendy

[lori67]

Hi Stef and welcome!

Just wanted to say hello and I've heard great things about your doctors!  Definitely in good hands!

I have a daughter named Stef too - not too often you see it spelled with an '"f" instead of a "ph".

Definitely take Kay up on her offer to chat - sounds like you two have a lot in common!

Good luck!
Lori