ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Tod on January 03, 2010, 09:18:10 am

Title: Newly Diagnosed in Richmond
Post by: Tod on January 03, 2010, 09:18:10 am
Hi y'all. I'm glad to find this site. I don't have the full details of the diagnosis, I get those tomorrow. However, I noticed a significant hearing loss in my left ear last spring and asked my PCP about it, he thought it was probably just age. It kept getting worse until it was nearly complete so I contacted and ENT and set up an appointment. The testing concerned him and so he scheduled an MRI and told me what he was looking for. The MRI was early morning NYE and the doc working the lab confirmed it was an acoustic neuroma and that he had already contacted my ENT and they would be in touch for an appointment.

So, I have spent part of the weekend reading and searching for information, which eventually led me here.

From what I can tell on this site, treatment is by and large successful, though not necessarily trouble free. Does anyone have any experience with UVa Hospital for treatment? They apparently have significant experience in this field.

Thanks for any info and advice,

Tod
Title: Re: Newly Diagnosed in Richmond
Post by: lori67 on January 03, 2010, 09:41:08 am
Hi Tod, and welcome from Virginia Beach!

I had my surgery in TN, as that's where I lived at the time, so I have no experience with doctors in VA, but I know there are others on the forum who do and I'm sure they'll chime in here.

There's a support group in the Richmond area - I'm not sure how active they have been, but maybe someone in the group has some info on doctors in the area.  When they do plan a get-together, I'm hoping to make it too, since I'm not too far away.  Maybe I'll see you there!

Good luck!
Lori
Title: Re: Newly Diagnosed in Richmond
Post by: LisaP on January 03, 2010, 09:57:29 am
Hi Tod,


Welcome, I was dx with an AN back in March of 08 and have been watching and waiting since with now yearly MRI's in Boston,  I am from the western part of Massachusetts.  Good luck, you have found a very useful sight full of information and friends.  Let us know how  you make out with your doctors appts. 

Best Wishes

LisaP ;D
Title: Re: Newly Diagnosed in Richmond
Post by: pjb on January 03, 2010, 11:15:30 am
Just wanted to welcome you to this forum that has a wonderful group of people. I am sure there will be others to assist you in your area I wish I had more to tell you but only that you are in the right site and to research, research, research.

Regards,

Pat
Title: Re: Newly Diagnosed in Richmond
Post by: pb on January 03, 2010, 11:44:28 am
Good morning,
As another newbie here, I can only say that you have found an incredible site. Ask any question and you will have help from all over the place! And sage advice at that!

I had a very similar "story" to tell in my diagnosis, or lack of one. Very frustrating.

My newbie bit of advice is don't just look to UV. Take the extra time to get opinions from more than one doctor.

Good luck,
pb

Title: Re: Newly Diagnosed in Richmond
Post by: suboo73 on January 03, 2010, 11:45:15 am
Hi Tod!

Welcome to the Forum - but sorry you had to join this exclusive club... :o

I go to an ENT at UVA but am currently in Watch & Wait mode at this time.
There are several here who have had treatment at UVA and i am sure they will chime in.

Please keep us posted on your updates and progress.
All my thoughts and prayers are with you and your extended family.

Sincerely,
Sue
Title: Re: Newly Diagnosed in Richmond
Post by: leapyrtwins on January 03, 2010, 12:36:16 pm
Hi Tod and welcome to the Forum  ;D

I have no advice/suggestions for docs in the Richmond area, since I live in Illinois.

However, I'd like to recommend you contact the ANA for their informational brochures and a WTT (willing to talk) list.  The brochures are full of very valuable information about ANs and their treatment - radiation vs surgery - and the WTT list might just have someone in your area who has had treatment in VA.

Please don't hesitate to ask us anything here on the Forum - that's what we're here for.

Best,

Jan
Title: Re: Newly Diagnosed in Richmond
Post by: sgerrard on January 03, 2010, 02:59:09 pm
From what I can tell on this site, treatment is by and large successful, though not necessarily trouble free.

Yup, that is a pretty good summary. Welcome to the forum.

Steve
Title: Re: Newly Diagnosed in Richmond
Post by: moe on January 03, 2010, 03:08:22 pm
Tod,
Welcome to the forum. Please let us know what the doctor says,the size of the AN etc.
Lots of good feedback, advice, and info to be had here, you'll see :)
Maureen
Title: Re: Newly Diagnosed in Richmond
Post by: CHD63 on January 03, 2010, 03:50:40 pm
Tod .....

Adding my welcome to this forum of caring, supportive people.

I do not know anything about the doctors at UVa, but many on here can attest to the fact that this is one time you want doctors with vast experience dealing specifically with ANs.  Since ANs are relatively rare, you need to ask the doctors how many ANs they have treated and how often they have seen them in their practice.  I would guess UVa docs have seen many, but you need to ask.

Let us know how you are.

Best thoughts.

Clarice
Title: Re: Newly Diagnosed in Richmond
Post by: Tod on January 03, 2010, 04:42:39 pm
Thanks to all of you, my new found friends, for this warm welcome.

This experience will be new for me as I have spent most of the last twenty years as caregiver. Being on the receiving end will be very new.

As much as I wish to get through tomorrow's consult, tomorrow night may be kind of rough as I have a sleep study scheduled because of a likelihood of apnea. While I am sure the apnea is quite likely, the some of the sleepiness/drowsiness I experience has certainly gotten worse in the last year. One of the AN sites I found mentioned sleepiness as possible symptom. Is this accurate? And if so, is it common?

Thanks again,

Tod
Title: Re: Newly Diagnosed in Richmond
Post by: Tamster on January 03, 2010, 04:46:07 pm
Hi Tod,
Welcome to the forum. Glad you found us. I'm almost 4 weeks post-op myself and feel that the people on this forum made everything about this whole adventure so much easier than it would have been without this great support system.  I spent hours upon hours here both before and after deciding my course of treatment. Sometimes it's just nice to be in a place where everyone knows exactly what you're going through.

Tam
Title: Re: Newly Diagnosed in Richmond
Post by: Jim Scott on January 03, 2010, 05:12:49 pm
Hello Tod - and welcome. 

I'm sorry to learn about your AN but at least you've found a good place for information and support as you begin to deal with this thing.  I don't have any specific advice for you but fatigue is often a symptom of acoustic neuroma (I experienced this) and could be mistaken as 'sleepiness'. 

I trust your consultations will be informative and ultimately fruitful.  I wish you all the best and hope you'll consider the folks here your 'AN family'.  We're eager to help you in whatever way we can.

Jim
Title: Re: Newly Diagnosed in Richmond
Post by: GM on January 03, 2010, 05:56:37 pm
Todd,

UVA is an excellent hospital with extensive experience using the Gamma Knife to treat AN's with non-invasive radio-surgery.  Dr. Steiner is a Co-founder of the Gamma Knife procedure.  I had my GK procedure at UVA in 2003.  At the bottom of my post will be a few links, feel free to browse their site and contact them on information on the Gamma Knife procedure.

I also believe that they do perform surgical removal of the tumor as well....if that is your choice. 

Gary
Title: Re: Newly Diagnosed in Richmond
Post by: Tod on January 03, 2010, 06:46:58 pm
Gary, much thanks. I had found those links already and reviewed the pages. Good to know someone has had a good experience with AN treatment at UVA.
Title: Re: Newly Diagnosed in Richmond
Post by: moe on January 03, 2010, 11:59:31 pm
Tod,
Yes, I do think the presence of the little booger made me more tired prior to diagnoses. I was always teased about how much I slept and napped, but I just wasn't feeling good.
My symptoms were slow and insidious. I felt better after the surgery, but now have the tinnitus which emotionally drains me and requires me to rest. ah well, if it's not one thing it's the other ;)
Good luck with your sleep apnea test.
Maureen
Title: Re: Newly Diagnosed in Richmond
Post by: cyrmom2 on January 04, 2010, 12:48:07 pm
Welcome Tod!  Hope your appointment went well today.

Cyndi
formerly from Richmond (Glen Allen)
now freezing in Ohio ;)
Title: Re: Newly Diagnosed in Richmond
Post by: Tod on January 04, 2010, 05:43:11 pm
Well, not sure how to describe it. Apparently it is NOT an AN as it is not on the nerve, but apparently is a meningial tumor in the brain sheath. Oh, and it is too big..think inches.

So, I share some of your symptoms but not quite the same diagnosis. The good news is that, since the deafness is permanent, the surgeon can focus on protecting the facial and vestibulary nerves.

Fortunately, I have two university hospitals to pick from in the area with really good neuro departments.

Now I can go do my sleep study...
Title: Re: Newly Diagnosed in Richmond
Post by: lori67 on January 04, 2010, 09:01:06 pm
Glad you got some answers, Tod.  I'm pretty sure we have some meningioma folks on the forum too.  A friend of mine just had surgery for a large meningioma and is doing great.

I'm also glad you have a few options for doctors so you can get plenty of information. 

Hope your sleep study goes well!  Sleep tight!   ;D

Lori
Title: Re: Newly Diagnosed in Richmond
Post by: leapyrtwins on January 04, 2010, 09:59:28 pm
Tod -

Lori is right, we have forumites who have meningiomas - just search on "meningioma" and you're bound to find several. 

As far as the permanent hearing loss is concerned, there are options available - specifically the TransEar and the BAHA.

I have a BAHA - so does Lori (and lots of others here) - and I love it.

If you ever want to go down that road, please feel free to ask us about it.  We're here to help.

Jan
Title: Re: Newly Diagnosed in Richmond
Post by: Tod on January 05, 2010, 06:08:46 am
Y'all are the best...even able to discern my meaning from my misspelling. I was kind of fried last night, stressful day personally and at work, and no caffeine all day long....miserable, miserable.  Sleep study went well, though.

So, a new day, new awarenesses. I've decided to name my tumor Bob. Apparently Bob has been with me many years and only decided to make his presence known this year. I look forward to a big coming out party for him.

Yes, I do  a lot of dark humor. When Mom died a couple years ago, such banter between my sisters and me was what got ti through...and all the jokes about the casket i built for her.

-Tod
Title: Re: Newly Diagnosed in Richmond
Post by: lori67 on January 05, 2010, 02:53:52 pm
Dark humor you say? I think you'll fit in nicely around here!   ;D

And I appreciate that you named your tumor after my ex-husband! Believe me, I was thankful to finally get rid of that Bob too!   ;)

Lori
Title: Re: Newly Diagnosed in Richmond
Post by: ppearl214 on January 05, 2010, 03:14:45 pm
Dark humor you say? I think you'll fit in nicely around here!   ;D

And I appreciate that you named your tumor after my ex-husband! Believe me, I was thankful to finally get rid of that Bob too!   ;)

Lori

*ahem*... did I just see a halo drop? ;)  :-*  :-*

Hi tod and welcome. I'm sorry to hear that you have been having such issues but as noted, glad you are finding answers and participating here.  I, personally, named my AN "brain booger" (yes folks, I coined the name here years ago....) but we have so many that name their AN's, it helps when we "kick them out" around here.

Hang in there... again, welcome.. and all dark humor stays in "AN Community" (I get paid the big bucks around here to note that... not!)

Phyl
Title: Re: Newly Diagnosed in Richmond
Post by: lori67 on January 05, 2010, 03:45:45 pm
She's baaaaaaaack!   :o
Title: Re: Newly Diagnosed in Richmond
Post by: Tod on January 05, 2010, 08:42:18 pm
Okay, I UPSed Bob and my pictures tonight to House. I have an appointment next week with the local specialist at MCV. I should have had the consult with House prior to that. I will drop of the Oto and Rad report with my PCP tomorrow to make sure he is in the loop (though my wife broke the news to him earlier today...he was somewhat shocked and distressed).

Also, I did poorly enough on the sleep study last night that I have an appointment for my machine tomorrow.

Things are moving. I let my boss know, then my staff, and then the executive staff, so all my colleagues are ready when it is time to step out for few weeks.

I've been reading a fair amount on possible procedures as well as the questions I should be asking. What am I missing?

I have already asked my family if I should go ahead and build my own casket, even though I am sure I won't need it, it would be useful in the living room as a beer cooler. And it always creates an interest with the neighborhood when I do such things.

Oh yeah, please tell me about BAHA?

Title: Re: Newly Diagnosed in Richmond
Post by: opp2 on January 05, 2010, 09:02:35 pm
Hey Tod, don't build your own casket just yet, unless of course you drink lots and lots of beer. If you insist on building one, build it for your recovery party. You're going to do just fine.
Title: Re: Newly Diagnosed in Richmond
Post by: Tod on January 05, 2010, 09:27:24 pm
I don't actually drink lots, but I do brew a fair amount. I am looking forward to hosting a Coming Out Party for Bob.  ;D
Title: Re: Newly Diagnosed in Richmond
Post by: leapyrtwins on January 05, 2010, 09:44:37 pm
Tod -

humor of all varieties is highly appreciated on the Forum by most of us - and by Lori and me in particular; sometimes we have our very own side-show  :D

You asked about the BAHA.  Here is one of my favorite links http://www.umm.edu/otolaryngology/baha.htm  Another good one is www.cochlearamericas.com

Post op I COULD NOT STAND being SSD  >:(  I found it very depressing, felt way older than I am, etc., etc., etc.  (but I have to note that not all SSD folks feel this way).

Anyway, back to me  ;) ;D

I had the BAHA implant 9 months after my AN surgery - would have had it sooner if my insurance company didn't drag their feet agreeing to pay for it - and I totally love it.  It's made a huge difference in my life - both @ work and @ home.  I recommend them to anyone who is SSD.  Like most who've had AN surgery, I wasn't thrilled with the prospect of another surgery that involved my skull, but the implant is done outpatient and is in general a piece of cake.  I even had mine with local anesthetic.

There are lots of posts on the Forum about BAHAs - and even a picture of my head with and without my BAHA device - just search on BAHA.

Jan

PS - Lori, would you PLEASE keep your halo from slipping so Phyl can get some rest???

And you thought she wasn't watching out for you, didn't you?  LOL
Title: Re: Newly Diagnosed in Richmond
Post by: pjb on January 06, 2010, 09:28:04 am
Tod,

Just a little more dark humor is the casket you might build insulated !!

My prayers are with you,

Pat
Title: Re: Newly Diagnosed in Richmond
Post by: Tod on January 06, 2010, 11:37:52 am
Pat, of course it would be insulated. That is important vecause my 18yo son says the best he could do for a eulogy would be to pop open a cold one in my honor.
Title: Re: Newly Diagnosed in Richmond
Post by: ppearl214 on January 06, 2010, 11:47:17 am
She's baaaaaaaack!   :o

never left! :)

Hi Tod, ok, will be gentle with you since your a newbie around here and all.....   :)

Let's try to get this topic back on track, ok all?  Let's keep the beer and casket (ew!) talk to AN Community forum, ok?  Truly appreciate it.....

Thanks.
Phyl
Moderator Extraordinaire!  ;D
Title: Re: Newly Diagnosed in Richmond
Post by: Tod on January 06, 2010, 12:41:50 pm
Gotcha. Apologies.

Tod
Title: Re: Newly Diagnosed in Richmond
Post by: pjb on January 06, 2010, 02:12:59 pm
She's baaaaaaaack!   :o

never left! :)

Hi Tod, ok, will be gentle with you since your a newbie around here and all.....   :)

Let's try to get this topic back on track, ok all?  Let's keep the beer and casket (ew!) talk to AN Community forum, ok?  Truly appreciate it.....

Thanks.
Phyl
Moderator Extraordinaire!  ;D

Sorry, first time I used a different sense of humor..........

Pat
Title: Re: Newly Diagnosed in Richmond
Post by: Keri on January 07, 2010, 08:11:57 am
So, Tod, when you invite us all to Bob's coming out party, you use the AN Community section of the forum!
Welcome, and I hope you're finding options and answers as you meet with doctors and all that.
We will be here to support you.
Keri