Author Topic: Doctors in Charlotte, NC?  (Read 3469 times)

am2lady

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Doctors in Charlotte, NC?
« on: April 06, 2014, 11:06:42 am »
Any recommendations?
MRI showed - 1.9cm x 1.9cm x 0.9cm AN - as of 5/11/13
MRI showed - 20.5mm AP x17mm  transverse x 20.7mm - 5/8/14

Hokiegal

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Re: Doctors in Charlotte, NC?
« Reply #1 on: April 06, 2014, 04:36:07 pm »
I'm in Greenville, SC, not too far from you.  A local neurologist initially diagnosed my tumor as a meningioma, and referred me to a highly-regarded local neurosurgeon, who diagnosed it as an AN, and although he had some AN experience, he no longer treats them.  He insisted I see someone with extensive AN experience -- and warned me against letting any local surgeon operate -- just not enough experience.  AN's can be tricky, and this turned out to be the case with mine.

He gave me two referrals, one to Dr. Patel at MUSC in Charleston, another to the head of neurosurgery at Duke -- can't remember his name, but he recommended only their department head.  In my case, radiation was not an option due to size (3.0 cm).  Yours is smaller.  Other semi-local options you may want to consider include Emory, Vanderbilt, and Wake Forest / Bowman Gray Med School. 

Others on here have commented that House and maybe Stanford offer free phone consultations if you send them your images. 

I would not hesitate to recommend MUSC and Dr. Patel.  I received excellent care from them in what turned out to be a very complicated case.  However since you may be a candidate for radiation, I would encourage you to seek out other opinions.

The fact that you are having these symptoms, I think indicates it is time to seek out treatment options.  Best wishes, and please keep us posted!
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

am2lady

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Re: Doctors in Charlotte, NC?
« Reply #2 on: April 06, 2014, 05:56:13 pm »
Thank you for the information. As of now, I do not want to receive any radiation treatments. I was told about Bowman from my ENT. I'll research a little more. I'd prefer not to travel and find someone local in Charlotte, NC.
MRI showed - 1.9cm x 1.9cm x 0.9cm AN - as of 5/11/13
MRI showed - 20.5mm AP x17mm  transverse x 20.7mm - 5/8/14

claudemckernan

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Re: Doctors in Charlotte, NC?
« Reply #3 on: April 12, 2014, 07:22:43 am »
See my post under Post-Treatment, "Two Weeks Post Op Report" for info on excellent surgeons.  You will probably have to travel but Charlotte to Raleigh is not bad.

HeadCase2

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Re: Doctors in Charlotte, NC?
« Reply #4 on: May 12, 2014, 11:12:20 pm »
Hello am2lady,
  I was treated at Duke University Hospital 7 years ago, and I'm doing great.  I don't visit this forum very often anymore, but I did tonight and I saw your note.  Dr. Allan Friedman is the head of neurosurgery at Duke.  I was treated by a Skull Base Team at Duke, doctors Sampson, Tucci, and Fukushima.  I agree with  your doctor's advice to seek out an experienced treatment team.   Best of luck to you as you research your options.  One of the damnable thing about AN is having to navigate your way while dealing with uncertainty.   
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

cont1592

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Re: Doctors in Charlotte, NC?
« Reply #5 on: May 13, 2014, 08:55:50 am »
Hokiegal,

I am also in Greenville, SC.  My doctor is Dr. McElveen of Greenville ENT Associates (464-4312).  Dr. McElveen is highly regarded and is out of Raleigh, NC.  He spends one or two weeks out of the month in Greenville.  He is a strong believer in W+W first.  If he does surgery, it would be in Raleigh.  I am also looking for options since I do not wish to travel that far (if/when it comes down to that).  I would prefer MUSC but have not contacted anyone there yet.

Hokiegal

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Re: Doctors in Charlotte, NC?
« Reply #6 on: May 16, 2014, 07:05:47 pm »
Hi Cont, just now saw your posts.  I am also an engineer here in Greenville.  Small world! 

Sounds like you are already seeking other opinions, and I would encourage you to continue.  I don't know your doctor, but my diagnosis was almost three years ago, by a neurologist and neurosurgeon.  The irony is I also have an excellent ENT, whom I see for sinus issues.  But I never reported the symptoms that could have led to an earlier AN diagnosis -- they seemed so minor compared to the sinusitis.  Oh well.

My tumor was 3 cm at diagnosis.  With yours at 14mm, you should have more options than I did -- but these tumors CAN grow quickly.  As you probably already know, House and Stanford both provide phone consultations if you send them your images.  I'd be more than happy to share my experiences with MUSC if you're interested.  Also, if it turns out we work for the same company, I learned some things about benefits the hard way -- will PM you.

Best wishes in your journey.
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

 


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