Author Topic: Duke University  (Read 19348 times)

Dallas

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Duke University
« on: March 08, 2011, 11:46:41 am »
Hey,

Being newly diagnosed, I'm in the process of finding a facility that has experience treating AN. I live in Southwest Virginia, and thus far, my focus has been Duke University. Does anyone know if they are a good choice, speciifically relating to radiation medicine? Any information would be helpful. Additionally, if someone knows of other places in my general vicinity, I would greatly appreciate the input.

(FYI: As of December, my AN measured at a 1.2 cm. I've been informed I have time to weigh my options, so I am.)

Thanks and God Bless,
Ms Dallas Hall

CHD63

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Re: Duke University
« Reply #1 on: March 08, 2011, 12:40:51 pm »
Dallas .....

Welcome to this forum!

Wake Forest Medical Center in Winston-Salem, NC has an excellent reputation for treatment of ANs with Gamma Knife ..... so if you are considering the radiation route, you might want to check it out.  My AN was surgically removed at Duke Raleigh Hospital by a Duke U. neurosurgeon professor, with excellent results ..... but he does not do radiotherapy.

At 1.2 cm you have some time to do your research and all options should still be open for you.  What are your symptoms?  Sometimes that is a bigger issue.

Best thoughts.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Dallas

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Re: Duke University
« Reply #2 on: March 08, 2011, 01:53:40 pm »
Hello, Clarice…

Thank you for the warm welcome. As I’ve already told several people, speaking with others makes me feel less like a patient and more like a person, particularly since the healthcare profession can be rather daunting. (Not too many doctors will let you lean on their shoulder. ;p) This website has definitely been informative and, truthfully, I'm glad it's here for new people like me.

Fortunately, I’m not showing many symptoms. When I was first diagnosed in May, I had sudden hearing loss (the reason why I went to an ENT ) and some balance problems and headaches. Currently, I’m steady on my feet (hence, I can still wear high heels); however, my right ear is muffled, as though a cotton swab is inside it, with constant ringing. When I look back though, I laugh. I wear 4-5 inch heels and, on the onset, I was losing my balance every once and awhile. People would give me weird looks that clearly said, “….Girl, if you can’t walk in those, don’t be wearing them…” or “….she’s imbibed a little too much…” Well, it’s 5-o’clock somewhere. ;p Seriously, that’s all we can really do. Try to take it with a smile and pray for the best.   

I appreciate the information about Wake Forest. I will definitely look into it. None the less, I’m elated to hear about your successful treatment with a Duke neurosurgeon. My neurosurgeon is Dr. John H. Sampson and, last Friday, I met with a radiologist, Dr. John Kirkpatrick. Both are Duke doctors and I was pretty impressed, but still undecided.

Again, thanks!

ombrerose4

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Re: Duke University
« Reply #3 on: March 08, 2011, 04:28:21 pm »
Hi Dallas,

Welcome to the forum- it is a warm, loving family of people who understand what you are going through. Since your tumor is relatively small, you can take some take to become informed of all your choices and pick what is best for you. Most important is to feel comfortable with your decision and your doctor. Good luck :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Dallas

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Re: Duke University
« Reply #4 on: March 08, 2011, 04:40:42 pm »
Thank you! :)

You're so right. I certainly count my blessings that I have some time, not to mention, several treatment choices because many people don't have that luxury.  I'm grateful for your support and encouragement, for it gives me hope during this trying time. As one of my favorite quotes says, "We are each of us angels with only one wing and we can only fly by embracing one another."  ~Luciano de Crescenzo
« Last Edit: March 08, 2011, 04:43:25 pm by Dallas »

lori67

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Re: Duke University
« Reply #5 on: March 09, 2011, 12:36:36 pm »
Hi Dallas.

I'm in Southeastern VA (Virginia Beach)!

I actually had my surgery at Vanderbilt in Nashville when I lived there.  My surgeon has since moved to NC and is at Duke now.  I can send you his contact information if you're interested.  He doesn't do radiation, but he did lay all my options out on the table for me before I made my decision, so I didn't feel like he was pushing me one way or another.  He could probably refer a good doctor to see for possible radiation.

At any rate, welcome to the forum!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Dallas

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Re: Duke University
« Reply #6 on: March 09, 2011, 01:12:29 pm »
Hey there, Neighbor (Lori)...

I envy you, living at the beach! :) You're in a beautiful part of the Old Dominion, what with its panoramic views of the water. I'm surrounded by the scenic Blue Ridge mountains (the Parkway is a short drive to Roanoke), so for an nature lover like me, it's a dream.   

Yes, I would be grateful for any information you could pass along. Thanks-so-much! Duke is a good 3-hour drive for me, but it's well worth paying that increasingly high $$$ at the pump if it means finding the right doctor. And from what I've read thus far, that is a critical part of the process.   

It's a privilege to be here, among those who empathize with what I'm going through. I'm humbled by everyone's strength and perseverance. I can only hope, when the time comes for my own treatment, I will be as courageous as each of you.

Dallas

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Re: Duke University
« Reply #7 on: March 09, 2011, 01:29:04 pm »
By the way, Lori…

I forgot to ask if you know anything about the new Proton Therapy Center that opened in Hampton?

lori67

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Re: Duke University
« Reply #8 on: March 10, 2011, 09:40:18 pm »
Hi Dallas.

I remember reading about the new Proton Therapy Center when it first opened, but I haven't heard much about it.  I have some friends in the medical field so I can ask around and see if anyone has heard anything.  From what I read, it's supposed to be good and pretty hi tech.

I'll PM you the contact information and phone number for the doctor I know at Duke.

Right now, I drive 2 hours to Richmond to VCU to see a neurotologist and a neurologist.  I would go to Duke myself, but it's hard to plan a 4 hour road trip when you have little ones at home.  But, we do what we have to do to see a doctor that we are comfortable with.  I can manage the 2 hour trip and be back here in time to get my kids from school, so it works for me.

And, yes, I love VB.   We're way down the southern end - right by the border to NC.  I've driven through your area and it's beautiful there too.

I have no doubt that when the time comes, you will impress yourself and others with your courage.   ;D
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

HeadCase2

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Re: Duke University
« Reply #9 on: March 11, 2011, 01:51:36 pm »
Hello Dallas,
  I'm another DUKE alum, with the Skull Base Team of Sampson, Tucci, and Fukushima.  I'll be seeing Dr. Sampson next month for a 5 year checkup.   :)   Let me know if you have any questions about Duke and the neurosurgery team.
  You asked about radiosurgery, check out UVA and Dr. Steiner.  He was one of the early developers of the Gamma Knife.  I think most of the people who have radiosurgery for AN use either the Gamma Knife or the Cyberknife.  There is also a Cyberknife Patient Forum at http://www.cyberknife.com/  that may have good information for you.
Regards,
  Rob 
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Dallas

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Re: Duke University
« Reply #10 on: March 12, 2011, 07:25:37 pm »
Hey, Lori and Rob (aka HeadCase2) <---------I like your login. ;)

Lori…..Thanks for the doctor information and ego boost. I absolutely needed both! :)  I’d definitely appreciate your medical friend’s two cents worth because Proton Therapy is one alternative I’m closely considering. And yes, I’d love to sit in the sun’n’sand and share stories. It sure beats a doctor’s office! :)

Rob, thank you for your comment. First off, W-o-o-H-o-o for your 5-year checkup! Since I’m Irish and it’s close to St. Paddy’s Day, I’m doing a jig for you! :) All joking aside, your story is encouraging and precisely what I needed to hear about Duke’s experience with Acoustic Neuroma. So far, they are at the top of my list. (FYI: I also saw Tucci, and I must say, she was very kind.)

As far as UVA, I met with Dr. Kesser in January. As you mentioned, I was told about Gamma Knife and a surgery called Trans-Lab, but I’m undecided about these. As far as radiation is concerned, I’m leaning more toward Cyber Knife, so I’ll certainly check out the website you suggested. Thanks!

I do have a question for everyone, though it doesn't pertain to physicians, but me personally. Today, I was at a St. Patrick's Day celebration and I noticed when the bagpipes and drums were playing, my ear started ringing and roaring. Is that normal when you're around loud noises? It was making me just a little unsteady, which obviously, concerned me. Since everyone had a green beer in hand, I suppose nobody took too much notice. ;p  (Everything is fine now. Just ringing slightly more.)

« Last Edit: March 12, 2011, 07:31:16 pm by Dallas »

CHD63

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Re: Duke University
« Reply #11 on: March 12, 2011, 08:10:20 pm »
Yup, the increased tinnitus (ringing and roaring) is very normal in loud environments.  I carry a musician's earplug to put in my "good" ear whenever I am in just such a situation.  The ringing can last for hours after an assault like that.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Angel-1

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Re: Duke University
« Reply #12 on: March 12, 2011, 10:15:24 pm »
Hey Dallas,

I'm another Duke fan, with the team of Kaylie, Friedman and Fukushima. I had translab surgery 8 months ago.  If you have any questions about the surgery or my experience with Duke, just let me know.  Once I figured out what was best for me, I had peace.  Good luck in your search, you will know when you find the right option.

Angela
Tanslab on 7/8/2010
Total tumor removal
SSD, facial weakness (but facial nerve still intact),
balance issues getting better
Duke University, Dr. David Kaylie, Dr. Allan Friedman & Dr. Fukushima
Age:  44

Dallas

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Re: Duke University
« Reply #13 on: March 14, 2011, 05:01:31 pm »
Clarice, thanks for the information about the increased tinnitus. It’s funny though. I had a buzz, but it wasn’t from beer. ;p As you advised, I’ll buy an earplug because I attended a lot of events.  

Hey, Angela! I’m glad you found peace of mind and, I pray, your body will continue to heal as well. Please keep me informed about your progress and road to recovery. It’s good to know Duke has a good reputation because I wasn’t sure if I needed to travel to bigger cities for better treatment.  (My health takes priority over the miles and money) I was told by a nurse that Ted Kennedy was treated there, so I suppose I’m in good hands should I choose them.  Thanks, again to you and everyone for taking the time to reply!
« Last Edit: March 14, 2011, 06:15:58 pm by Dallas »

Tod

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Re: Duke University
« Reply #14 on: March 14, 2011, 06:32:59 pm »
Dallas,

Another (late) welcome to the Forum. While you are looking for options, don't overlook options in Virginia. I had my surgery at VCU in Richmond and the attention, care, and follow-up, have all been in incredible.

UVa also does good work over in Charlottesville.

I realize though that depending where you are in SW Virginia there are six or seven state capitols closer than Richmond. Where in SWVa are you? My son is a student down in Ferrum.

Good luck with your decision and journey.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

 


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