Author Topic: Newbie  (Read 3019 times)

wmumpower

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« on: March 03, 2010, 05:47:20 am »
I, too, was just diagnosed about 2 weeks ago and am interviewing physicians.  I can't comment on physicians in Charleston area but I can share my experience with those in Atlanta area.  I have met with the folks at Emory about radiosurgery with Novalis TX (Dr. Hadjipanayis, a neurosurgeon who trained under Dr. Lunsford at Pitt) and am meeting today with Dr. Javed and Dr. McGlaughlin at Wellstar Kennestone about CyberKnife.  Also have met with another group who recommended Translab right off the bat.  I still have fairly good hearing in my affected ear, so that recommendation didn't sit very well with me.  I heard yesterday from Dr. Fayad at House, who recommended a couple of additional tests to confirm, but they thought they would attempt to preserve hearing with a middle fossa approach.  After speaking with an ANA support group leader about her experience with House, I believe that's where I'd go for surgery.  If I opt for radiosurgery, I think I'm comfortable enough to do that locally.  

*I took the liberty of splitting off your post and subsequent replies.- Moderator
« Last Edit: March 03, 2010, 03:12:39 pm by Jim Scott »

leapyrtwins

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« Reply #1 on: March 03, 2010, 07:01:37 am »
After speaking with an ANA support group leader about her experience with House, I believe that's where I'd go for surgery.

While House has a great reputation, and does many, many AN surgeries, there's absolutely nothing wrong with having surgery locally.

I know, I did just that and had a wonderful outcome  ;D  And - there are many like me on this Forum.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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« Reply #2 on: March 03, 2010, 07:18:42 am »
I, too, was just diagnosed about 2 weeks ago and am interviewing physicians.  I can't comment on physicians in Charleston area, but I can share my experience with those in Atlanta area.  I have met with the folks at Emory about radiosurgery with Novalis TX (Dr. Hadjipanayis, a neurosurgeon who trained under Dr. Lunsford at Pitt) and am meeting today with Dr. Javed and Dr. McGlaughlin at Wellstar Kennestone about CyberKnife.  Also have met with another group who recommended Translab right off the bat.  I still have fairly good hearing in my affected ear, so that recommendation didn't sit very well with me.  I heard yesterday from Dr Fayad at House, who recommended a couple of additional tests to confirm, but they thought they would attempt to preserve hearing with a middle fossa approach.  After speaking with an ANA support group leader about her experience with House, I believe that's where I'd go for surgery.  If I opt for radiosurgery, I think I'm comfortable enough to do that locally.  

Hi and welcome.  Good to have you here and thanks for sharing this. I know Dr. Maddox is highly recommended at Emory (not sure if he is one that you met while there) and Kennestone CK is doing fantastic work as well.  My sister does clinical trials in ATL (my fam lives on the northside of town... I use to but no longer based there) and has shared good things with me about Kennestone.  

I can see you are doing all of your homework and agree with Jan that since there are many wonderful treatment options in ATL, that is also definately a terrific place to be.  I know Cindy (the ATL support group leader, whom I've had the true honor of having lunch) did terrific at HEI as well.  She can also share with you what she saw in me, post CK.  I am also on the ANA WTT (Willing-to-talk) list and have spoken to folks in AL (Birmingham) and they are also researching ATL for treatments..... which is great to hear.

So, many options... and now, it's just going through the homework stage to help you be the best, well-informed patient you can be. It can be very daunting, overwhelming.... so, if you need to take a step back and take a deep breath... it's ok.  We're here to help the cause.  Each decision-making process is highly personal to each unique AN situation..... so, you've got a terrific jump start and from what is sounds, take your time... leave no stone unturned.

Again, welcome.
Phyl
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