We are patients living with Trigeminal Neuralgia, here for your support.

Hospitals and Doctors From the Member Database

Update February 2, 2012:

Dear friends and colleagues:

I have completed a process of probing our Living With TN membership database to get a better grasp of our demographics and who we serve. While doing this probe, I had access to the doctor recommendations entered by members when they first sign up. I've extracted and refined the data in a new page at http://www.livingwithtn.org/page/find-a-doctor-for-chronic-facial-pain.

The list has been expanded to over 200 physicians and ~50 hospitals in the US, Canada, UK, Australia, and internationally. In view of the availability of this page from our site menus, I have deleted the initial incomplete extract from this forum so I don't have to maintain it in two places on the site. Unless somebody sees a value in retaining the comments below, a month or so, I will delete anything that I have already acted upon with corrections or additions to the doctors list.

Regards all,

Red

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Permalink Reply by Lisa (iamrite) on January 30, 2012 at 8:28pm

Red,

The Oregon one is incorrect. That should read OHSU Hospital, Portland Oregon. OHSU is Oregon Health Sciences University.

OSU is Oregon State University and there is no hospital there.

Lisa

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Permalink Reply by crystalv on January 30, 2012 at 8:39pm

Hi Red. Thanks for all this tedious work - it will surely benefit the members of the site.

If possible, I'd like you to add Dr. Steven Graff-Radford to the California doctors. He is a member of the TNA board and is an excellent doctor. He's the Director of the Pain Center at Cedars-Sinai hospital, if you'd like to include that information as well.

Again, thanks for this list. Your work is really appreciated.

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Permalink Reply by Richard A. "Red" Lawhern on January 30, 2012 at 9:14pm

I'll clean up errors tomorrow as I add further references. Thanks,

Red

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Permalink Reply by LyndaS on January 30, 2012 at 10:39pm

Hi, Red—

Thanks for all that you do for us! There is a special place in heaven for people like yourself :-)

Take Care,

LyndaS

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Permalink Reply by Scott Orn on January 31, 2012 at 12:19am

this is incredible Red. you are amazing!

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Permalink Reply by Kc Dancer Kc on January 31, 2012 at 12:43am

Don't forget Dr. Casey!

Thanks for all you do!

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Permalink Reply by Jackie on January 31, 2012 at 7:20am

Hi Red

this is such an amazing piece of work. I am sure I can join many on here in thanking you. Please can you add the following which I need to update on my profile:

Dr l Vaithianathar : Neurologist at Derby Royal Hospital

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Permalink Reply by Richard A. "Red" Lawhern on February 1, 2012 at 7:55am

I've fixed the errors in the data above, and completed the page as a stand-alone resource which can be reached from the Face Pain Info sub-tabs in our menus. See http://www.livingwithtn.org/page/find-a-doctor-for-chronic-facial-pain. The list above has been expanded to over 200 physicians and ~50 hospitals in the US, Canada, UK, Australia, and other foreign countries. Further entries of positive information are welcome and will be incorporated in the "find a doctor" page as received.

Regards all,

Red

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Permalink Reply by Johanna Smith on February 1, 2012 at 2:26pm

Red,

Thank you SOOOOOOO MUCH for putting this together. I've read the WA State entries and their are some doctors I haven't heard of yet. Thank you!

A couple of notes on Washington State & Oregon State

Oregon: Dr. Kim Burchiel is at OHSU in Portland, OR (not Corvalis, OSU)

Washington: Belleview is spelled Bellevue (1st listing under WA State)

Harborview Medical Center/University of Washington (they are now partnered)

Another addition for a general resource:

University of Washington, Roosevelt Pain Clinic

I haven't been yet, but have an appointment and will give you the doctor's name if I like him and he's good. A couple of other members have seen doctors there, too.

No offense on the corrections :)

Thank you again!!!!

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Permalink Reply by Richard A. "Red" Lawhern on February 1, 2012 at 3:20pm

I'm going to be doing corrections periodically, Johanna. No offense taken. It's one of the hazards of processing written records submitted by patients on meds (LoL)... Please note the location of the completed listing, of which the record above comprises about half.

Regards, Red.

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Permalink Reply by Pat on February 1, 2012 at 3:26pm

Red,

No doubt this work took a great deal of effort and I respectfully don't want to take away from that.

However, there is a doctor on this list in the state of Florida that performed MVD's on at least 5 members on various forums (that I'm aware of), including myself, who now all have severe disabilities as a result of nerve damage incurred during those surgeries. Several have had to have second surgeries to correct additional complications as well. This doctor's M.O. is to obfuscate about the disastrous outcomes, deflect the blame onto his female patients' "states of mind", and quickly dismiss them without any regard for their after care. After two years, my MVD incision has continued to reopen 5 times releasing debris and is being watched by a new neurosurgeon. It's being watched because my incision is literally located on top of my occiptal nerve. I'll be having an MRI in two weeks that could lead to another surgery to correct this inexplicable complication.

Because we all have lost our careers prematurely as well as our quality of life forever, offering up that resource to any of our members worries us. Those diagnosed with TN are in a tight and scary enough place with hard decisions to make. I pray that no one here is mislead into regretfully walking the same path that we did. When I called the TNA asking if they were aware of complaints regarding this surgeon, I was told that they were - but that was AFTER, too late for me. Let's pls. be sure that this list is not perceived as having Living w/TN's stamp of approval, similar to an "Angie's List" .

Pat