Author Topic: AN Newbie in AL  (Read 7864 times)

cindyj

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Re: AN Newbie in AL
« Reply #15 on: June 22, 2008, 06:45:17 am »
Hi Windy,

I completely understand your confusion and frustration, as does most everyone here, as it seems to be, unfortunately, part of this AN journey.  As Mac mentioned, Emory is relatively close to you - I saw both Dr. Crocker and Dr. Mattox at Emory in April and plan to follow up w/ Dr. Mattox in August.  He does both surgery and radiation (Linac).  As I mentioned to you earlier, I haven't made up my mind yet what treatment I will do (or even where I will do it), but I did like the Emory doctors very much and have heard very good things about both.  Also, CK is done here in Atlanta at Kennestone - I saw that doctor as well and have not ruled that option out either...

Let me know if you'd like any further information about anything here in Atlanta.  Good luck and do let us know what you decide.

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

leapyrtwins

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Re: AN Newbie in AL
« Reply #16 on: June 22, 2008, 09:52:55 am »
Another option would be to try and get Dr. Guthrie himself.

Windy -

I never thought of this suggestion, made by Steve, but it's a good one.  If you think you'd be more comfortable with Dr. Guthrie himself, you are certainly entitled to request an appointment with him.  Sometimes a doctor that is "right" for one patient isn't right for another.  I've referred my doctor, whom I adore, to others and some have found that they haven't "clicked" with him; they have, however, "clicked" with his partner.  Everyone looks for different things in a doctor, but IMO no matter where you go you want to be comfortable with and confident in the doctor who is treating you. 

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

1wareagle

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Re: AN Newbie in AL
« Reply #17 on: June 22, 2008, 02:17:37 pm »
Windy,

I hate to bring this up, but I went to Dr. Guthrie before going to LA. Dr. Guthrie did not know what procedure was best for me and wanted to consult with other doctors at UAB and get more opinions. He was supposed to call me back in 2 weeks and I never hear from him till I called back and talked to his nurse. All she told me was I needed to come back and talk to him again. The trip was a 2 1/2 hour drive for me and I thought a personal call from him would have been so much better. To be honest, he seemed too busy! Like others have stated, take your time and make the choice you are the most comfortable with.

Good Luck
Ellis
Ellis- Age 50- Mississippi
3.2 cm AN Translab w/ BAHA Surgery
@ House Ear Clinic - LA - 01/04/07    Dr. Brackmann, Dr. Hilselberger, Dr. Stefan
Platinum weight in right eye-Dr. Roberts
Right side facial paralysis (slowly getting movements)

Anomar11

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Re: AN Newbie in AL
« Reply #18 on: June 22, 2008, 03:19:05 pm »
Hi Windy,

I found out about my AN 5/23.  Mine is slightly bigger than yours on L side.  My symptoms are also ear fullness hearing loss and feeling of ear pain with sore throat on that side.  The pain and throat part come and go, but I've had it all along, so it most definitely can be a symptom of AN.  I am hoping for radiosurgery also.  Keep in mind there's potential good and bad from all procedures.  I agree with Steve that a better way to say it would have been "possible" but not common.  Many docs aren't good with bedside manners.  However, given everything you said about him and staff, I would agree with others to continue looking until you find someone you're more comfortable with.  Keep in mind, you do have time.  Believe me, I know that's easier said than done.   My initial apt. isn't until 7/24 at Mayo Clinic and I'm trying hard with the mind over matter and the positive attitude.  Some days are easier than others.   Take care.

Mona
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

windy

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Re: AN Newbie in AL
« Reply #19 on: June 22, 2008, 09:36:10 pm »
Thanks guys for your support!!  Everyone here is so helpful.  BTW, I remembered what you said 1WAREAGLE about the delay in Dr. Guthries's office not calling you back.  That also gave me pause for thought!

I know your AN is not supposed to grow at a fast rate, however, I feel a sense of urgency because my hearling loss came at once.  I woke up on a Saturday morning about 4 weeks ago and noticed the t.v. sound would echo back in my ear.  Also, people who talked loudly actually hurt my ear.  It also felt as if my ear was stopped up, as well.  I went to the ENT the next week and did indeed have a "significant" hearing loss.  Both the ENT and neurosurgeon feel it was a blood clot in my nerve that caused it to decrease suddenly.  The neurosurgeon said he did not normally feel "urgent" in most AN cases, but he said he could not say the same for my case as my hearing loss was quite sudden.  Since the hearing loss, I have added ear pain and some facial sensations, as well.  I already had throat pain and eye pain (not sure it is related).  I don't really notice much balance issues.  Leave it to my body to have a quick increase of symptoms!  It is for this reason, I am bypassing the "wait and watch" mode.

I continue to research with a vengeance.  I am now considering CK, as well as GK.  I am torn between the two, at this point.  I had read about a report Dr. Chang @ Stanford gave another AN member and the statistics for no facial nerve damage were excellent (1 out of 700).  Since I had just heard from the neurosurgeon last week that I might have a chance of facial paralysis following GK, it has been in my mind since.  When I calm down and finally make a decision, I will let you know.  As always, any input is very appreciated.  Again, thank you!
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014