Author Topic: Doctor's in the Atlanta area  (Read 7130 times)

cdadams

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Doctor's in the Atlanta area
« on: June 26, 2010, 09:45:25 pm »
Hey!  I'm fairly new to this site...I've been conversing with a few on the "Radiation Treatment Option"...but, just realized since I'm still not sure what treatment to land on, that I may be in the "wrong" topic area.  Just to update you all:  A couple of months ago I was diagnosed w/ AN.  It measured about 1 cm, and is located in the ear canal.  I am 43 years old and in pretty good health.  Hearing loss in the AN ear (left) is the most annoying result of this...the other symptoms are annoying, but have not been life-changing.  I'm in the Atlanta area and my local ENT sent me to Dr. D. Mattox at Emory.  He was very thorough in explaining everything, and ultimately said I was in a situation where I could choose any of the 3 treatment options.  Because it was all so new to me, I didn't know what questions to even ask...So, I've been reading the forum comments until wee hours in the am.

Question:  Has anyone ever used Dr. Mattox?  If so, what did you think?  Treatment?  Results?  I'd appreciate any info you could share.  Also, Could you recommend any other Dr.'s in the Atlanta area??

I've read about so many great doctors that many have been pleased with...however, I was concerned going that far away from GA (having 3 kids & a job)...especially for any follow-up.
I guess that leads me to another question...After treatment, what is the follow-up like?  Say if I fly out to NY or CA...would I have to continue to go back for follow-ups?

I truly appreciate all of your help!

cdadams

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Re: Doctor's in the Atlanta area
« Reply #1 on: June 26, 2010, 09:58:23 pm »
Okay..I'm adding a question to my own post?!?!  After reading some additional posts, I saw where some have sent their MRI to other doctors and then discussed options via phone...and the patient didn't even have to go to their office until a decision was made???  Just wondering if I understood that correctly?  So, if I did decided to go w/ an out of state dr., I wouldn't have to fly back and forth several times??  I LOVE the idea of sending my MRI to a doctor w/ such a wonderful reputation!

nanramone

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Re: Doctor's in the Atlanta area
« Reply #2 on: June 27, 2010, 03:45:26 am »
I live in Indiana. I sent my records to Pittsburgh, and a team of surgeons reviewed them on the following Tuesday evening. They do this sort of review each Tuesday. Some one called two days later with recommendations that I have radiation instead of surgery. Since one surgeon in Indianapolis had previously recommended radiation, I made my decision.

I went to Pittsburgh, and GK is an outpatient procedure. That was done on a Tuesday morning. I left Pittsburgh Thursday. I do not have to return. Between the ENT and the GP in Indiana, and now a neurologist and PT I see here for balance issues, all my followup will be done here. My follow up MRIs will be done here and mailed to Pittsburgh. Unless for some reason I need another GK treatment or I just choose some followup in Pittsburgh, there is no reason for me to return there.

Hopefully this helps. I made a vacation out of the trip to Pittsburgh by taking time to explore the city a little bit during the several days I was there.

Maybe someone will recommend a doctor close to home for you.

Nancy

cdadams

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Re: Doctor's in the Atlanta area
« Reply #3 on: June 27, 2010, 08:38:56 pm »
Thanks, Nancy!  I am always trying to find something good in all of this...so, maybe a good vacation is the answer!  I do appreciate you sharing your experience with me.

Brewers7

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Re: Doctor's in the Atlanta area
« Reply #4 on: June 28, 2010, 04:00:58 pm »
I spent a good portion of last summer at The Shepherd Center in Atlanta.  I had lots of unusual complications from my surgery (in Memphis) and so I went to Shepherd for rehab.  It is a state of the art facility, and you are very fortunate to have it in your area.  All of the doctors were knowledgeable and caring.  Susan
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

Labott

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Re: Doctor's in the Atlanta area
« Reply #5 on: July 01, 2010, 09:11:31 pm »

I elected stereotactic radiosurgery for my AN with Drs. Douglas Mattox and Ian Crocker at Emory in Feb, 2006.  I've been both fortunate and very pleased with their professionalism and the result.  The "brain booger" has shrunk slightly over the years (based on annual MRI exams). There have been no side effects from the treatment other than some hearing loss - readily compensated for with a hearing aid.  Occasionally, I have some momentary vertigo issues, but these events last only a few seconds.  If you'd like to chat about what to expect from the procedure and the immediate aftermath, please send me an email with a contact number.

-Labott (a.k.a. Larry)
Radiosurgery 02/02/2006 1.2 cm  - right side
@Emory Univ Hospital: Drs. Douglas Mattox and Ian Crocker

free2be

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Re: Doctor's in the Atlanta area
« Reply #6 on: July 05, 2010, 10:35:48 am »
I have been waiting and watching with Dr. Mattox at Emory. Last Friday he indicated we needed to treat the darn thing. It is very close to the brain stem. He gave me options of radiosurgery, which is of the single dose LINAC type, which I don't see a lot about on the forum. The surgical option he offered is translab. I'm having trouble with that as my hearing is still very good and he said I would be deaf in that ear with that procedure. I am 51, which I guess puts me on the line between the two major options. Will I outlive possible regrowth or what? I'm trying to figure out what to do.

Larry, we were in touch briefly. Was your radiosurgery LINAC? He said they had a new machine two years ago, but I'm not sure if that meant it was the first LINAC they've had. He indicated that it was more accurate than GK or CK (I'm not sure which). It would be Dr. Crocker as the radiology also. Also, Larry, have you had some of these annoying symptoms I've been reading about from radiation, e.g., brain fog/wonky head, fatigue, etc.?  I have Addison's Disease and more fatigue is the last thing I need. But, I sure am having trouble considering surgery if it isn't necessary.

Thanks,
Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

cdadams

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Re: Doctor's in the Atlanta area
« Reply #7 on: July 07, 2010, 09:45:34 am »
Oh Connie, I feel your pain.  I'm going thru the same decision making process.  I, too, liked Dr. Mattox a lot.  However, I am getting a 2nd (maybe 3rd)opinion before I make my final decision.  I'm going to send my records and MRI to The House Ear Institute in LA, CA.  They will review them and assign a doctor who will call and discuss it all with me. 

Please let me know what you decide to do.  I'll be thinking about you.

free2be

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Re: Doctor's in the Atlanta area
« Reply #8 on: July 07, 2010, 11:49:03 am »
cdadams,

Yes, heck of a boat we're in, isn't it. Us and many others are in "the same boat." The forum has been very helpful and I'm grateful for all those who take the time to keep posting and answering and responding. It's great just to help with that, "I'm all alone in this" feeling.

I am going to look at other possibilities too before I jump into anything. It's way too scary not to.

Keep me informed as you contact House. I hate the idea of going so far for treatment, but...

Did Dr. Mattox say you could watch and wait a while? From what I am understanding, either surgery or radiosurgery is likely to result in at least partial hearing loss. If it doesn't grow and that's the only real problem you are having, I might think watching it to see if it grows would be prudent at this point. Mine has continued to grow for 1 1/2 years and now is approaching my brainstem. The options he gave me would likely make me lose hearing; at this point my hearing is still very good. I think I wish I had started exploring options a little sooner and not waited until he said we need to treat, but...I guess I thought for some reason the darn thing would stop growing. Wishful thinking.

You can send me an PM if you'd like to speak more openly about your feelings with the doc choice.
Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

cdadams

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Re: Doctor's in the Atlanta area
« Reply #9 on: July 09, 2010, 01:35:25 pm »
Connie,  I have just sent my records and MRI to House Ear Institute.  After receiving them, they will assign them to a dr.  After reviewing them, the dr. will call and talk to me about them.  It is my understanding that there is no fee for that "consultation."  Unfortunately, House doesn't accept providers, so you have to pay out-of-network.  If your ins. company pays out of network, House will file for you.  I'll let you know as I find out more.  But, yes, I agree...going so far away will be an inconvenience.

Actually, due to my age and health, Dr. Mattox reccommended that I go ahead and go for surgical removal.  However, he did say that I was a candidate for wait and watch, radiation, or surgery...for now, he ultimately left the choice up to me.  I talked to him yesterday over the phone.  He's going to have the oncologist and radiologist call me to set up appts. to ask them any questions to help in my decision making process. 
I, too, want to preserve any hearing that I currently have..that's the biggest annoyance!  However, the surgery that Dr. Mattox is referring to would take all hearing away in that hear.  And, there is no guarantee that hearing won't be lost with radiation... sad, huh?  I do not want to wait and watch.  I just feel like more damage/worse symptoms/more risky treatment could result.  I'm just trying to weigh my options (good/bad).

Let me know what you decide...I'll do the same.

cdadams

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Re: Doctor's in the Atlanta area
« Reply #10 on: July 17, 2010, 08:43:35 am »
I met with Dr. Crocker at Emory yesterday.  If I choose radiation, he will be the one to do it.  He was extremely nice, patient, and informative.  He met with me for over an hour allowing me to ask any question that came to mind.  I was very impressed.

I'm in the process of setting up an consultation appt. with Dr. Olsen at Emory soon.  I just want to make sure I'm "educated" as I make my decision.

Question:  Dr. Crocker uses the LINAC (?sp) instead of the Gamma or Cyber Knife...any thoughts about using one device over the other??


free2be

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Re: Doctor's in the Atlanta area
« Reply #11 on: July 17, 2010, 08:40:44 pm »
cdadams,

Well, it sounds like we are on a very similar timeline and with the same docs right now. I will be seeing Dr. Crocker and Olsen in the next 10 days to discuss treatment with them as well. I have been doing a lot of research, probably too much, trying to resolve this question for myself. As everyone says, this is such a personal choice and unfortunately, as much as I'd like someone "all knowing" to drop down and tell me the answer, it rests on each of us to decide. I was reminded today to remember to listen to my gut and what "feels" right for me. That is easier said than done, but is important. If you are a spiritual person, I think looking to our High power is also important. All these hard cold facts can get to be too much.

Personally, I am leaning strongly toward Cyber Knife over LINAC. I am getting a consult with Dr. Chang at Stanford for Cyber Knife. I'm not crazy about going across country for treatment, but I need to be where I think is best for me. Dr. Crocker will have to do some strong convincing with the reasons for me to choose LINAC over CK in order to change my mind on that at this point (I think...everything is subject to change from day to day). I'm sure some people agree with me about CK over LINAC and others don't and while there are statistics and such to look at, there are pros and cons to be found either way. I'm just trying to look at numbers, outcome, procedure it self, and risks. It is very complicated; too much for us lay people to try to comprehend and be "educated" enough to make an informed decision. There is a thread here somewhere on CK vs. LINAC I think. I'd have to find it again. I'm not sure how old it is. I thought about starting another thread on the topic and reiterating what I have come to think I understand to see if there are comments that might correct my beliefs or thoughts. 

Have you heard anything back from House yet? I'll be interested to hear what they recommend to you. Send me a PM if you want. I'm way north of Atlanta, but perhaps we could connect. We might end up together in the waiting room at Emory one day and not even know it.

Hang in there.
Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

free2be

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Re: Doctor's in the Atlanta area
« Reply #12 on: July 17, 2010, 08:47:34 pm »
Actually, there are several threads that discuss LINAC and CK and GK. From the main Forum page, put Linac in the search box and it'll turn up several posts. I think I've read them all, not that I can remember half of what I read at this point. It's getting to be a blur.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

cdadams

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Re: Doctor's in the Atlanta area
« Reply #13 on: July 18, 2010, 05:39:05 pm »
Connie,

It's been great "chatting" w/ ya!  I am a very spiritual person.  And believe me, my family and I have been praying throughout this whole situation...even for a miracle of healing... I know I will find a peace in all of this.

I will definitely check out the discussion on the different radiation devices.  Dr. Crocker was great at even drawing out pix of each one...CK, GK, and LINAC... But still, I just can wrap my small mind around all of this amazing technology...WOW!

Oh, I have not heard back from House yet..I thought I would last week...so, hopefully this week.  I'll be sure and post what I hear.
You can private message me as well about anything...Wouldn't that be neat to eventually meet up.  Be sure and keep me informed of what your plans/decisions are.  I'll be thinking about you.
Cindy

ppearl214

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Re: Doctor's in the Atlanta area
« Reply #14 on: July 18, 2010, 07:18:28 pm »
Hi all

CK is now offered at Kennestone Wellstar in Atlanta.  Dr. Maddox is one of the best in the ATL area as well for AN treatments. I know of others (Brucifer comes to mind) as he's been in W/W with Dr. Maddox for quite a while

I would also suggest attending one of the ANA Metro Atlanta Support group meetings, lead by our own forumite, cindyj.  You can obtain info directly from the ANA regarding the support group meetings (heck, they are outside ATL) as well as look for cindyj here on the forums.

Hope this helps.
Phyl
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