Hello! Thanks! New Diagnosis

[sunfish]

Was just diagnosed about 10 days ago.  I'm an information junkie, so I found this site within about an hour of my diagnosis.  I'm a psychologist who teaches biopsychology and brain anatomy, so I have a particularly good understanding of my situation. Thank you, thank you for this site, it's the best sort of info I've found so far.

Here's the brief history: Diagnosed with "mixed" hearing loss  right side only Sept. '09 (conductive loss=maybe otosclerosis, or injury, now we know sensory-neural loss probably AN).  I get hearing aid, which really helps.  Episode of severe vertigo Feb. 21, 2010, MRI shows 1.4cm x 1.1cm AN (intra- and extra-canalicular, with "mild deformity" of cerebellar-pontine peduncle).  ENT believes I had labyrinthitis, and "seredipitously" found the AN.  Vertigo/unsteadiness has completely resolved at this point.

I've been referred to a neurosurgeon (cyberknife specialist) - Dr. Worthington at Medical University of South Carolina.  Haven't seen him yet.  My guess - they'll want to "do something" about this tumor, due to its location.  At least, that's what my ENT thinks.  However, someone will have to do some convincing to get me to act on this now, based on the fact that I have very limited symptoms at this point, and based on what I've learned about the incidence of  problems after micro- or radiosurgery.

I can travel for treatment, to some extent.  My sister lives in Los Angeles, so the House Ear Clinic wouldn't be out of the question, if need be.  I'm interested in knowing who the top docs are for gamma/cyberknife treatment in Atlanta, Duke Medical, Los Angeles.

Again, thanks and I'll be getting to know you guys better soon!

[Kaybo]

Hi and WELCOME!  

I can't really answer any of your questions (someone will be along soon that can better help with these questions), but just wanted to welcome you here...make yourself at home and ask away - that is what we are here for!

K  

[lawmama]

Hi Sunfish,

Welcome, although as everyone says around here, I wish you didn't have to be here.  I hope you find support and some guidance, maybe even a little information along the way.  That is what I found here.

As for your decision regarding whether or not you will have treatment (and what type), that is a very personal decision between you and your doctors.  We will be supportive of that process, but I think you will find that most, if not all, of the members here will not tell you what you should do.  I think that is one of the best things about this board.  It is a great support system and allows you to make the decision that is right for you, whatever that may be. 

Good luck with your reseach.  I feel like I read hundreds of pages of studies and stories before I made my decision.  It isn't easy and I don't envy you beginning on that journey, but at least you have a bit of a heads-up on most of us because of your profession.  I wish you the very best of luck.

Lyn

[tenai98]

Hi Sunfish
And welcome to our little family....
JO

[GRACE1]

Welcome to the family!

When I was diagnosed, Duke only did surgery.

Grace

[CHD63]

Welcome, sunfish, to the forum .....

You will find many supportive people here and much valuable information.  Be sure to send for the ANA materials ..... they are very informative and very reassuring.

I had my surgery at Duke (with excellent results) but I do not know any names of radiation specialists there.  Pittsburgh has an excellent reputation for radiation treatment of ANs, which would not be too far from you.

Best wishes as you walk this treatment decision path.  It is one of the most difficult and frustrating aspects to this whole AN journey.  Take your time and do not forget to breathe between research sessions!

Let us know how you are doing and ask away!

Clarice

[Sam Rush]

If you have a deformity of the brain stem, as you mention, you should probably do "something" in the near future, not an emergency. That is what they told me at House Clinic.  How old are you??

[knakag01]

Welcome Sunfish!

I've heard wonderful things about House, but I'm sure you'll hear some first hand expereinces of members who have had treatment there.

Best of luck to you on this journey.

Kim

[sunfish]

Glad to "meet" you all!  I should have added that I'm 50 years old.

[rupert]

  Welcome Sunfish,
                
                    As others have said,  sorry about your diagnosis, but glad your here     You will find that gathering info about AN treatment,  and recovery is continuous.    Once you start you just keep acquiring information.   This forum is very good for information and case study.   You should be able to find most all issues somewhere on this sight.   I would also make several suggestions.
      
                     Try and get several opinions from neuro surgeons and neurotologists.   Ones that do surgery,  ones that do radio surgery and ones that do both.  IMO  the more the better.
                  
                     There are many fine facilities .  Many are mentioned on this sight  Go directly to the different facilities  web sights and look over their programs.  Usually you can get an idea of their track record and their specialties.

                    In coming to this sight you have just gained more moral support than you can imagine.

                                                                                                                                              Bryan

[G_Man]

Welcome Sunfish
      I too am recently diagnosed.  I found this site very helpful.  I became a member and got access to the booklets anausa produces.  Very good source of info.  I'm a W+W (watch and wait) patient but I'm still focused on learning and talking to people.  I've had so many people offer their phone numbers saying, "call me anytime".  That alone meant a lot to me.  There are support groups around the country.  I'm going to try and get to a few of their meetings here in New York to learn from others who have been through this.  Doing that makes me stronger and gives me hope.
      Good luck.  As others have said, this is one of those clubs that wishes you didn't have to join but welcomes you with open arms.
Glen

[suboo73]

Was just diagnosed about 10 days ago.  I'm an information junkie, so I found this site within about an hour of my diagnosis.  I'm a psychologist who teaches biopsychology and brain anatomy, so I have a particularly good understanding of my situation. Thank you, thank you for this site, it's the best sort of info I've found so far.

I've been referred to a neurosurgeon (cyberknife specialist) - Dr. Worthington at Medical University of South Carolina.  Haven't seen him yet.  My guess - they'll want to "do something" about this tumor, due to its location.  At least, that's what my ENT thinks.  However, someone will have to do some convincing to get me to act on this now, based on the fact that I have very limited symptoms at this point, and based on what I've learned about the incidence of  problems after micro- or radiosurgery.

Hi Sunfish! 

As Bryan (aka rupert) said, you have come to the right place.  The folks here are FANTASTIC, no question about it!   

I am also a member of the Watch & Wait brigade - sometimes this is the form of 'treatment' one chooses for a lot of different reasons.
Keeping up with MRI screenings is important while you are deciding your treatment choice, and afterwards.
My ENT has also indicated that i should 'do something' if the size reaches 1.5cm. 
With minimal symptoms myself and aging parents, both my sister and i are currently in W & W.
[Yes, i am here with my sister, and finally received a proper diagnosis, thanks to HER ENT.]

You are very fortunate to understand a lot about the brain and how it works. 
My daughter is studying nursing and is still learning some things from me!
[My daughter even found out in conversation that one of her instructors has an AN, and she actually knows what that is!]

Best wishes on your AN journey.
We are here for you!

Sincerely,
Sue

[ppearl214]

Hi Sunfish and welcome. Good to have you here and as you can see.... lots of folks to help share experiences and insight to help you along with your AN journey!

I'll speak as being part of the CK brigade (I am almost 4 years post-CK for my AN). My AN was just a hint smaller than your's (1cm).  Like you, I inquired about microsurgery (I sent my films to HEI and worked with my local surgical teams here in Boston).  My brain surgeon here actually said to me "I don't want to cut.... go have radiation done" based on the size of my AN and my hearing levels (serviceable hearing over 90% pre-treatment). For me personally, I wanted to save my hearing...... so, I researched different forms of radiation (all offered here in Boston area) and through my research, found that "fractionating" the radiation (broken up over days vs. 1-dose), there was a better chance of hearing preservation.  So, for me, I opted for CK (vs GK 1 dose) ...... and now, almost 4 years later, I still have over 90% serviceable hearing.

I always keep in mind that "individual results may vary".  I am also a firm believer in patient-to-patient advocacy and would recommend also attending a local ANA Support group meeting to be able to "meet" face to face others with AN's  so you can see how they are doing.

We know the decision making process is highly personal, so all I can say is "go with your gut" for your particular situation.  You will know in your gut what will be best for you.

I am aware of the CK Center in ATL at Kennestone Wellstar and they have been doing terrific work there. Duke is a fantastic treating facility as well.  If any of the treatment centers are willing to provide you with "patient referrals" for AN patients they have treated, I would jump the chance. I did the same in my decision making days and it was great to actually speak to those that were treated at those facilities I was researching.  Now, today, I am a patient advocate for my 2 facilities (my CK center as well as my brain surgeon).

Hang in there... good luck as you go through this process... and know we are here to cheer you on.

Again, welcome,
Phyl

[leapyrtwins]

Hi, Sunfish and welcome to the Forum 

Have you contacted the ANA yet for their informational brochures?  It's excellent information; I highly recommend it.

Jan

[Lynn Mc]

Sunfish,
Welcome to the forum. There is so much good info here that you will be able to get many of your questions answered.  Everyone here is wonderful.  Good luck on your AN journey.

Happy Trails,
Lynn