Georgia newbie introducing self and asking for input and support

[Jim Scott]

Tricia ~

Hello and welcome!  As we always say: we're sorry you have to deal with an acoustic neuroma diagnosis (O.K, technically, a vestibular schwannoma) but we're glad you discovered the ANA website and the forums.  Thanks for registering, reading and now, posting your introductory message.  I wouldn't be concerned about profundity because your inclusive message was very interesting and more revealing than most 'debut' posts from new members.  I appreciated both the medical and personal information that rounded out your introduction.  As an inveterate writer of long posts, yours seemed just about the right length.   

Tricia, you certainly seem to have a good grasp of the medical issues that accompany an acoustic neuroma diagnosis and your insight into your own emotional reactions is impressive and ring true. I'm sure that you'll be asking those critical questions on your next doctor consultation.  I also trust that you'll explore the possibility of irradiation treatment as an alternative to surgery, unless you've already decided on the 'out with you!' approach that many AN patients take when confronted with the unwanted invader.   

As others have noted, you seem to have a solid support 'system' in place and enjoy a full life.  Although the closest I've ever gotten to a horse is watching 'Mister Ed' reruns, I think the work you do with horses is admirable.  I admit to not knowing a kayak from a keel boat but I can appreciate the skill it takes to pilot one and because my fellow moderator, Joe ('Joef') is a veteran Kyaker, they must attract worthy people. 

Thanks again for posting and your kind words.  Please know that not only can you come to these forums anytime for help, information and support but that we eagerly give whatever we can to those who need help in some area and we do so with an understanding that only those who have 'been there' can offer.  I'm very pleased to learn that you've already received so much comfort (and information) from reading the forums.  I look forward to seeing more of your messages in the weeks to come. 

Jim

[Pembo]

Welcome. I found ANA after my surgery...oh how I wish I had more knowledge before...these forums have been a great support for me and now I'm happy to be able to share and support others.....

Trust your instinct with your doc...they should answer all your questions, even the easy ones. I remember my husband asking how much hair I would lose...at the time I thought why is he asking that, but later I was glad to know the answer. (btw-not much and with longer hair it was barely noticable to others)

[lawmama]

Hi Tricia,

I'm from the Gainesville south of you!  (Florida)  I am very glad to meet you, although like others I am not happy to meet you in these circumstances.  I'm a fairly new poster to this board, having just been diagnosed on October 15th.  I look forward to getting to know you better and wish you the best of luck on your AN journey.

Lyn

[jaylogs]

I'll add my welcome to this already long list Tricia! I was diagnosed a couple of months ago and now waiting on middle fossa surgery on dec 9th.  You'll start to realize the hardest part is knowing what you want to do. I finally made the decision to go to House after several consults with my local doctors here in Phoenix.  Like everyone has said, trust your gut instinct and don't feel pressured into doing something you don't want.  Please continue to vent and/or share with all of us your feelings and decisions.
Regards, Jay

[wendysig]

Hi Tricia and welcome to the forum,

I'm sorry to hear you have an AN but am glad  you found us.  I think you will find a wealth of information and as you can see, lots of people who are willing to answer questions and offer support.  The AN experience is an emotional rollercoaster and finding the right doctors and the right treatment for YOU is what is most important.  I don't really know for sure, but I don't think many docs offer up information on ANA.  I know I found this forum just by Goggling "Acoustic Neuroma" and I know many others found it the same way, sometimes before treatment and sometimes after.  We are here to help and support you however we can.  Please feel free to ask any questions and vent when you need to.

Best wishes,
Wendy

[patdel]

Hi Tricia,  I too was recently diagnosed with a 9mm AN.  I have been in the watch and wait mode since June.  I think I fell into the "denial" mode and got busy with living and tried to forget about this thing.  Since it will soon be 6 months, I have FINALLY started to do more research.  I have consulted an neurotologist and a neurosurgeon. Both suggest sugery with a possiblity of radiation. The more I read, the more I wanted to find out about the radiation option because, quite frankly, I am scared to death of brain surgery!  I have an appt with a radiation oncologist in Dec.  However, a few weeks ago, I started to be less scared. I don't know what it is, but I am learning to live with this condition I guess.  Once I have the MRI in January, I will make my decision and get this thing over with.  I have read of several people on here who get diagnosed, and deal with it quickly. Something to be said for that.......

At any rate, good luck in your search.  I am in NC and have been to Duke U.  UNC is also supposed to be a good place to go.  Dr. Fukishma would do my surgery if I go this route and he has done over 1200 AN surgeries so I think that would be an experienced person.and feel I will be in good hands. 

Pat

[CHD63]

Hi again to Tricia .....

So glad you are posting and keeping on top of things!

Pat .....  Just want to add that Dr. Fukushima did my surgery 19 months ago and he is fabulous ..... cannot recommend him highly enough if you decide to go that route.

Clarice

[GRACE1]

Pat:

If you decide on radiation treatment, please check out Wake Forest.  They are great!!

Grace

[ombrerose4]

Hi and welcome to our forum. You will find everything here from advice, suggestions, alternatives and tons of support. Listen, learn and investigate. Write down all your questions so you are prepared . Most of all, like Neal said make sure you are comfortable with your doctors. I knew right away when I met my doctors that they were the right ones. If you don't have that feeling, keep searching. Don't feel rushed, empower yourself with knowledge. Good luck!

[ppearl214]

hey Trisha and welcome. Sorry I'm late for this party but had to stop by to say hi.  I see you are down the street, around the corner from CindyJ and the ANA office!   Weird transplant here... born in Boston, lived on ATL Northside (Dunwoody) for quite a while (graduated from school there), moved back to Boston but my immediate family in Roswell/Alpharetta area.    Spent much time at the lake and on the river and have fond memories

well, as you can see, quite the welcoming committee we have here.  I know you aren't thrilled with Piedmont Hosp but I can say that Dr. Maddox at Emory is top notch (based on other's recommendations I've heard) for AN treatment.  I believe Kennestone has Cyberknife now and I also hear that they are doing good work (my sister does clinical trials in ATL and had been keeping me updated on this).

Shands is great as well.. and I see others are chiming in BIG time.

Regardless of where and what you choose... know this... we are glad to have you here.  We know what it is to "walk in your shoes" (although my feet are rather large)... but most of all, as you have witnessed.... great, great support here!

Again, welcome....
Phyl

[Goldie]

A warm welcome, Tricia.  You've certainly come to the right place for information and support.  Reading quickly through the other responses, I didn't catch that anyone had mentioned the ANA pamphlets that are offered.  They have a lot of really helpful information, so I'd check them out if you haven't already (and if you become an ANA member, they are free). 

You do have a lot of time to figure things out, so make sure you take all the time you need.  Things will become clearer as time goes on.  Wishing you all the best!

Denise

[gingerbread6]

Hello Tricia,

Welcome to this wonderful, caring support group. I thank God that I found them. I was lucky to have met some of these fine people in person recently. Namely, Phyllis, Erin, and Jim Scott. They are extraordinary people with hearts of gold. They are my lifeline as I go through my "an journey." I think it's great that people that were complete strangers offer their support to help other people. They have been there, done that.

I got diagnosed with my "an" on July 22 of this year. Since that time I have researched the heck out of this rare condition and got more than one opinion from the doctors in Boston. I'm not a watch and wait kind of person so I decided to go the surgery route. I want this thing out! My surgery is scheduled for December 28th in Boston at Brigham and Women's with Dr. Peter Black, the chief of neurosurgery there, together with Dr. David Vernick the neurotologist. I am completely confident in my decision and remain positive that it will have a good outcome. I am a very spiritual person, and God will see me through this ordeal. It's a step by step process.

As mentioned here, do your research then go with your gut. It will never steer you wrong. It's something that needs to be dealt with and you will make the right decision. We are here for you.

Gingerbread6

[Tricia (horsekayak)]

Hi all,

I've been posting a little bit in other sections, but just to update (which i've been bad about doing): 

I had gamma knife surgery at Shands at Univ of Florida on Dec 1.  Thought i would have had surgery, but other health issues complicated the decision.  Gamma turned out to be best decision.  (The waiting/decision-making was worse than the procedure)

Have had (and am still having) some balance issues...will get a wave of dizziness at unexpected times when i'm standiing up , or especially when i sneeze.  But while i sit down, i seem to be fine.

Worried about getting my old job back, since my former work partner will not respond to email requests.  Guess i'll have to break down and call her husband, since she wont answer my phone calls.  I'd just like the courtesy of knowing if I have a job, or if i have to look for another one.  I've talked about this on other posts, but it still hurts that someone who worked so closely with me will not even respond back to me.  Maybe she thinks i'm radioactive...who knows..all i can do is laugh and move on.  Certainly other people out there will appreciate my virtual assistant (computer) skills.

Dont have to go back for MRI for a year, and Shands couldnt have been more helpful, even tho they are a huge, busy hospital.  My only wish is that they would do a better job of their patient information handouts/appointment notification. 

Note to anybody searching this forum for info on Shands:   ASK EVERY QUESTION YOU CAN THINK OF, EVEN THE OBVIOUS ONES, AND INSIST ON GETTING THINGS WRITTEN DOWN FOR YOU (INCLUDING DATE/TIME/LOCATION OF APPOINTMENTS/NAME OF PERSON WITH WHOM YOU SPEAK, DIRECT LINE TO CALL FOR MORE INFO/CONFIRMATIONS)...IF I HAD NOT BEEN VERY PERSISTENT ON GETTING SOME APPTS/DAYS/TIMES CONFIRMED I WOULD HAVE MISSED MY MRI, WHICH WOULD HAVE CAUSED MY PROCEDURE TO HAVE BEEN DELAYED BY A WEEK...especially if you are travelling in from a distant location...verify, verify, and then verify again.

However, that is the only little gripe i had with them...so overall, a VERY satisfying experience, and I LOVED the fact that the vast majority of their staff has a great sense of humor and friendy nature.  In fact, the only crabby/disinterested person was in finance office of MRI, which is not a direct part of neurosurgery.

Happy holidays to all from a toastie postie!!!!

[moe]

Thanks for the update Tricia!
sounds like things went great and good advice to others.
You sound great. Congratulations, and take it easy 
Easier said than done!
Maureen

[Jim Scott]

Tricia ~

Thanks for updating - and congratulations on a successful GK procedure and a good recovery.  We've had some members that have done exceptionally well at Shands and I have to assume they run a good operation, albeit with a caveat or two, as your post pointed out.  A Merry Christmas and a Happy New Year to you, tostie-postie. 

Jim