Author Topic: Newly diagnosed with questions  (Read 7922 times)

Romans828

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Newly diagnosed with questions
« on: January 22, 2007, 08:41:07 pm »
This is a great forum! I was diagnosed with AN ( not sure of dimensions - was told 7mm ) just after Christmas 2006 after a month of tinnitis. Have since found a lot of info and solace here. It seems good can somehow come out of suffering... Thanks!

I do have a question...

Does anyone have any experience with Pappas Ear Clinic in Birmingham, Alabama? I was referred there by my ENT and my initial consultation was rather ambivalent.
Diagnosed 7mm AN Left side 12/2006.
Wait and See, but leaning toward CK at Wellstar Kennestone in Atlanta.

Obita

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Re: Newly diagnosed with questions
« Reply #1 on: January 22, 2007, 08:54:24 pm »
Welcome Romans828:

I can't help with the Pappas Ear Clinic but I wanted to say hi.

I'm very glad your AN is still small.....research a bunch......if I had only listened to my tinnitus........

Good luck and its nice to have you on.  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Mark

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Re: Newly diagnosed with questions
« Reply #2 on: January 22, 2007, 09:21:07 pm »
Not familiar with it, and I don't ever recall it being mentioned in this forum in the past 5-6 years. It's important with whatever treatment option you choose to go somewhere with a lot of AN expereince so definitely research that aspect.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

rebarman

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Re: Newly diagnosed with questions
« Reply #3 on: January 22, 2007, 09:48:25 pm »
Welcome to the club that nobody wants to be a part of.

I consider it my own version of "Hotel California". I can check out any time I want, but I'll never get to leave.

I have no experience with Pappas, so can't help much there. What I can say is that Atlanta isn't that far from Birmingham, and the Dr's. I have been working with the past few months have been great. Dr. Jeffery Olson and Dr. Doug Mattox at Emory University Hospital are both very well known in the AN circles. Not sure of your situation, but it could be worth a drive over for a 2nd opinion or a 2nd option. My first visit there was with Dr. Mattox. He spent a great deal of time with us (wife and I) explaining what it is I had in my head. He explained the various options available, giving a great deal of info as to the pros and cons of each option. He never once tried to sway my decision one way or the other. There was nothing I asked that he didn't have an answer for. As soon as I decided on the surgery option he set me up with an appointment with Dr. Olson. Again, Dr. Olson went into great detail as to what would be involved, what to expect, what not to expect, and what could or could not happen. My surgery is set up for next Monday morning (the 29th of Jan) so I can't say yet if everything worked out the way I pictured it in my mind, but I do feel at ease with my decision. Hopefully I will be able to post a follow-up towards the end of next week.

Good Luck. I know I have obtained a treasure chest of knowledge from the other posters on this board, and they are always willing to offer up their info on their experiences. Any questions you have, just ask, someone has more than likely been there, done that and already wore out their souvenir tee-shirt.
1.5cm x 1.4 cm AN on left side
Removed by Translab on Jan 29, 2007
Dr. Mattox & Dr. Olson @ Emory Univ. Hosp.

ppearl214

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Re: Newly diagnosed with questions
« Reply #4 on: January 23, 2007, 09:48:24 am »
Hi Romans828  and welcome! 

Yeah, great website, lots of kewl folks, great ideas, suggestions, hugs, thoughts, inputs and yes, even watered down drinks! :)  We're all here for you!

I'm not all that familiar with Birmingham but... I have to ask if you have considered Atlanta. As you know, you are only 2 hrs away by car (I-20) and there are many options there, including a fabulous team at Emory University (surgical and I believe radio-surgery) as well as Kennestone Hospital for Cyberknife Radio-surgery.

Just a thought... and hang in there.... our shoulders here are pretty sturdy! :)

Welcome again!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pearchica

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Re: Newly diagnosed with questions
« Reply #5 on: January 23, 2007, 11:01:30 pm »
Hey Romans828: yes do your research! I have had 3 opinions now and am feeling much more confident of my desicion as a result.  And do have a second person go with you on each consult. My husband has been with me on my opinions and had been a great second pair of ears ( pun fully intended!)  I live in Sacramento,CA but will be going to Stanford for my treatment (Palo Alto, Ca 2 hours away).  Also House Institute in LA is available for free telephone consults. Radiation may be a very viable option for you- either Gamma Knife or Cyberknife.  Please keep us updated on your progress- and with some irony- welcome to the party!  Take care of yourself- Annie :P
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

mykey

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Re: Newly diagnosed with questions
« Reply #6 on: January 24, 2007, 04:26:44 pm »
Hello rebarman.
I wish you the best on Monday and afterwards.
I also live in Atlanta. I was diagnosed 1/18/2007. Approx. size 2.5 mm. My wife and I were referred to Dr. Seranko of ENT of Ga. Saw him last Sat. Very knowledgable, straight forward. Has the hands of a concert violinist.
However, I was shocked at the percentages he quoted us for the occurence of post operative facial nerve palsy. Essentially %40 of his surgical patients have permanent palsy of some degree.
I really would like to hear from you about Doctors Mattox & Olson. My wife and I have appts. with both of them in the neext few weeks. I have had surgeries before at Hotel Emory and I do believe that the staff there are as good or better than other local hospitals.
It seems that i'm waiting in the Atlanta AN line right behind you and would like to stay in touch.
Once again I will be hoping for the best outcome for you and (I hope it is allowed to write this here) I will say a prayer for your healing.
Mykey
Diagnosed  1/20/2007. Right side AN 2.5 cm
50yr, guitarist for 35 yrs.
Married w/10yr old son.
Translab 4/26/07 at Emory University performed by: Dr. Mattox & Dr. Olson
Surgery successful!
Extended time in ICU due to CSF leaks.

Obita

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Re: Newly diagnosed with questions
« Reply #7 on: January 24, 2007, 05:28:01 pm »
Hi Mykey:

Welcome to the forum. 

Yikes, you just found out....try not to stress.....you will feel so much better once you have seen another doctor or two.

My AN was the same size as yours.  I chose translab which makes the ear deaf.  Other than single sided deafness, I am fine.

Dr. Serankos comment about permanent palsy being 40% seems high to me.  Temporary, I would surely buy it.   I had some temporary numbness and my mouth did not work right for 2 mo. or less. Was he an AN surgeon?  I am glad you are getting another opinion.  I would think if the chances of permant palsy were that high, we would not see as many people having surgery.  I'm not sure I would have had it.  I was borderline for radiation because of the location so I decided against it.  I think I would have taken my chances with radiation had I been told that.

Good luck to you and I am very sorry you have an AN.  But, they are treatable and for that, we are all grateful.

Say hi to your wife.  Invite her on if you wish. The diagnosis is so hard on our loved ones too.  Kathy

ps:  you can post anywhere you want.  If you don't get as many replies as you would like, start a new topic under pre treatment options or the AN issues.

IT WON'T BE LONG NOW REBARMAN......HOW ARE YOU DOING?



Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Battyp

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Re: Newly diagnosed with questions
« Reply #8 on: January 24, 2007, 11:26:06 pm »
Ok Atlanta seems to be getting pretty popular in An diagnosis(es?)  they need a new water supply oh no wait that's with pregnancies you don't drink the water right?  :o ;D :-*

Mikey we know how stressed you must be right now but know we're with you.  Tell your wife we all said HI and you're gonna be just fine! 

Rebarman keep us posted on your outcome we'll be doning our pirate socks for you matey! :-*

rebarman

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Re: Newly diagnosed with questions
« Reply #9 on: January 25, 2007, 08:04:13 am »
Welcome Mykey, glad you found this site, but sorry you had to find this site.   

Like I said before I am really at ease with my decision on having the surgery. I feel like I am in very good hands with the Emory Dr.'s and their staff. Other than having the surgery delayed a few weeks due to a scheduling conflict, everything has gone smoothly.

As soon as I am able, I will post my status next week. I did tell my wife to come here and post after surgery, but asking her to do something, and her remembering to do it are 2 different things. She suffers from Huntington's Disease, and her mind just doesn't work the way it used too. Sticky Notes (Post-it's) are a staple in our house much the same as milk and bread.   :D

Anyway, all in all, I am doing fine. Nerves rare up every once in a while but so far I have been able to beat them down and back into their cage. Thanks to all of you for your support and thoughts while I take my turn at the plate. We're not pitching a shut-out, but it does look like we are kicking AN's butt in the game of life.






P.S.

Mykey, email me if you would like so we could talk more.

1.5cm x 1.4 cm AN on left side
Removed by Translab on Jan 29, 2007
Dr. Mattox & Dr. Olson @ Emory Univ. Hosp.

pearchica

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Re: Newly diagnosed with questions
« Reply #10 on: January 25, 2007, 06:23:30 pm »
Good luck Mykey! Take care of yourself- Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Ellid

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Re: Newly diagnosed with questions
« Reply #11 on: January 25, 2007, 09:07:53 pm »
Hello rebarman.
I wish you the best on Monday and afterwards.
I also live in Atlanta. I was diagnosed 1/18/2007. Approx. size 2.5 mm. My wife and I were referred to Dr. Seranko of ENT of Ga. Saw him last Sat. Very knowledgable, straight forward. Has the hands of a concert violinist.
However, I was shocked at the percentages he quoted us for the occurence of post operative facial nerve palsy. Essentially %40 of his surgical patients have permanent palsy of some degree.
I really would like to hear from you about Doctors Mattox & Olson. My wife and I have appts. with both of them in the neext few weeks. I have had surgeries before at Hotel Emory and I do believe that the staff there are as good or better than other local hospitals.
It seems that i'm waiting in the Atlanta AN line right behind you and would like to stay in touch.
Once again I will be hoping for the best outcome for you and (I hope it is allowed to write this here) I will say a prayer for your healing.
Mykey


That facial palsy percentage sounds awfully high to me, especially for a 2.5 mm tumor (is it 2.5 mm or cm?  size DOES make a difference, at least with ANs :D ).  Mine is 1.6 cm and Dr. McKenna believes my risk of facial nerve damage is less than 5%!  I'd wait to see what the doctors at Emory say.

Remember:  YOU make the decision.  Go with the doctor and the treatment option that you feel most comfortable with.  That's the only way you'll be satisfied with the eventual outcome. 
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.