Author Topic: New to ANA and Recently Diagnosed- Not sure what to think about this....  (Read 7895 times)

cyndipaul

  • New Member
  • *
  • Posts: 3
Hello Everyone,
My name is Cyndi.  Recently diagnosed after several trips to the ENT, exam, hearing test  then an MRI then a referral to Dr. Maddox because the first ENT said his office doesn't have the expertise with acoustic neuromas nor does the local hospitals.  Have an appointment with Dr. Maddox at Emory on March 14th.  Not sure what to expect so my adult children are going with me.  They have questions too.

For about a year have been experiencing sever headaches, constantly feel like I am on a boat in the center of a lake.  Balance isn't that bad but not that great either.  Feel like I am on a boat  whether I am standing or sitting, sometimes sitting is worse.  Sometimes my eyelid goes into uncontrollable twitching then my vision in my eye has blurry wavy lines (not sure if this is related to the acoustic tumor). My hearing in my right ear is totally gone.  Waking in the mornings is the worse with the headaches. 

So what should I expect at the appointment with Dr. Maddox?  I will take a copy of the MRI.  Will it be more test?


jaylogs

  • Administrator
  • Hero Member
  • *****
  • Posts: 834
  • It's NOT a too-mah! (Anymore!)
Hi Cyndi...I am sorry you had to find this place, but I am glad you did.  There's a great group of people on here who can help out with all kinds of questions.  I'd like to first take the opportunity to mention about the information packets that the folks here at ANA have available.  Just go to the main page, and click on the "New Acoustic Neuroma Patients Click Here" Button and that will get you started.  So, to answer your immediate questions, what to expect at your Dr's appointment can vary greatly.  Depending on your tumor size, he'll offer you options...the smaller the tumor the more options you have.  If you have a large tumor, then those options are fewer.  This is usually the worse part of the whole AN process...what to do with it? Some people have radiation treatments, others go with surgery.   Then you have to decide what kind of radiation or what kind of surgery...if so offered choices.  For myself, I wanted surgery. So I got several opinions. A couple of doctors suggested translab, one offered middle fossa.  Just know that every person is unique, and so their treatment plan will be unique as well.  Ask a lot of questions, and if you can't really think of any...come back on here, and tell us what the doctor told you, and then that can maybe generate some dialog that may help you.  We are not doctors, but just people who have been in your shoes.  By the way, how big did they say your AN was?  Again...glad to meet you and let us know how it goes!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Hi, Cyndi - welcome!  I'm Cindy also :D  I'm running out the door, so don't have much time, but see that you are going to see Dr. Mattox at Emory...I am in the Atl area (Cumming).  Will touch base later and give you my contact info...I assume you are in Atl?  What part? 

Sorry you had to find us, but glad you did and posted - more later,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Hi cyndipaul and welcome to this forum of caring and supportive new friends .....

Jay gave you excellent suggestions/comments and be sure to connect up with Cindy right there in Atlanta.

It is, indeed, a scary and confusing time during the decision for treatment process.  Try to get multiple opinions, if possible, to assist in what is the right decision for you and your situation.  There are many excellent facilities around the country who will give free consultations if you send a copy of your MRI to them.

Many thoughts.  Stay posting on here for a ton of support.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Ned

  • Jr. Member
  • **
  • Posts: 99
You are very wise to bring your adult children to be your extra ears.  I got to the point of bringing a small recorder with me, some docs didn't like that.  Keep a journal and write in it a lot.  Keep logs of names of doctors and what types of options they offer, how many have they done, what are post treatment expectations.  A book that helped me tremendously, A Bend In The Road: Experiencing God When Your World Caves In by David Jeremiah.  Keep us informed, we have all traveled this road.
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

lizzie1hoops

  • New Member
  • *
  • Posts: 34
Hi Cyndi,

Sorry to hear that you're part of this group, but this forum is an incredible resource and it's great that you're reaching out early.

Your experience seems very familiar to me!  I also had my AN found at Emory by another ENT then was referred to Dr. Maddox.  I don't recall there being any additional tests at that first appointment.  He'll most likely look at the MRI and audiogram and make recommendations based on the size of the AN and your symptoms. Know that in many, if not most, situations there is time to consider different options.  I've since moved to Seattle and had surgery, but my surgeon here knew of Dr. Maddox and spoke highly of him.

I absolutely agree that it's great to have people with you at the appointments and make notes (recording would be even better, I hadn't thought of that!).  Make a list of your symptoms and hopefully he can shed some light on which are likely tied to the AN.  Let us know how your appointment goes.  Regardless of the outcome there will be folks here that are/have been in the same situation.  Hang in there!

Best wishes,
Liz
5x6x11mm right sided AN.
Surgery (middle fossa), Dr. Backous, Swedish Neuroscience, Seattle, 1/12/12 after 6 years W&W.

jaylogs

  • Administrator
  • Hero Member
  • *****
  • Posts: 834
  • It's NOT a too-mah! (Anymore!)
Cyndi...I forgot to mention there is one other category besides radiation and surgery...and that is watch and wait (W&W).  We have a great many people on here who have chosen to monitor the growth of their tumors.  Again, this is all depending your own particular circumstances and tumor size/position/symptoms.
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Jackie

  • Sr. Member
  • ****
  • Posts: 385
Hello Cyndi,

May I also welcome you to a forum of friendly informative and wise people all trying to help each other as we travel this journey. I am glad that Jaylogs also mentioned the category Watch and Wait, because it is a viable form of treatment. Age may play a part as it has for so many of us, in relation to growth. I have been in Watch and Wait for 5 years now, waiting for results of my latest MRI. Before this one, my Acoustic Neuroma has remained stable. Others, like Derek has been W and W for 10 years, and the list goes on! So all I can add to this is please do your research, ask all the questions necessary to make an informed decision, and that doesn't happen overnight. You need NOT panic, most of these tumors are slow growing, and there are so many factors to know before making an educated decision. We are all here to help, and I must add I have no medical degree, just try hard to be informed.
I wish you the very best and will be anxious to hear more from you after your appointment! Sending Blessings your way........
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Suu

  • Sr. Member
  • ****
  • Posts: 407
  • Better out than in.
G'day Cyndi from me too.
I'll come back later on to see how your appointment went and how you're doing generally.
Lots of great advice but you get even more friendship on this forum so please use us as much as you need to.
Hugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

cyndipaul

  • New Member
  • *
  • Posts: 3
Hello Everyone,
Thank you very much for all you kindness and support!!! I am schedule for surgery on May 17, 2012.  The procedure will be translab.

With warmth of heart,
Cyndi

cyndipaul

  • New Member
  • *
  • Posts: 3
Hello Everyone,
Please accept my apologies for not posting until now.  My surgery (translab) was early morning of May 17, 2012 at Emory in Atlanta with Dr. Douglas Mattox and Dr. Jeffery Olsen.  I am home now and on the mend. 

Mei Mei

  • Hero Member
  • *****
  • Posts: 1278
Hi Cindy,
Welcome to the Postie world.    I'm glad that you are on the mend and hope that you will continue to do so.
Warm Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Hi, Cyndi ~

Thanks for the update.  I trust that, one month out, your recovery is going well.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

 


anything