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 Richard A. "Red" Lawhern on February 1, 2012 at 4:18pm

Pat: at least one individual has posted a positive recommendation for any physician named above. If you can message me privately with the names of others who have had problems in MVD procedures he's done, I can quietly remove his name from the listing after I verify their stories. Likewise, the free-standing page where the complete listing resides, contains the following appropriate qualifiers:

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Please understand that each of the names below has been provided by one or more members of this site as a positive recommendation. However, no two patients are alike and it is possible for different patients of the same doctor to have different experiences – some good and some not so good.

Thus the owners, administrators and moderators of this site cannot verify or validate the skills or qualifications of the named practitioners. Nor can anyone guarantee your results in consultation with these people. For a list of practical questions that you may ask during your first appointment with any medical care provider who treats pain patients, please see “How Do I Develop a Positive Doctor-Patient Relationship? "

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Regards, Red

Pat said:

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

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Permalink Reply by Larry on February 1, 2012 at 5:40pm

I would like to add the surgeon that did my MVD almost 4 years ago and cured me. Dr Robert Chilton in Kansas City, MO.

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Permalink Reply by Richard A. "Red" Lawhern on February 1, 2012 at 6:56pm

Thank you Larry. I've updated the completed list among our "Face Pain Info" articles.

Regards, Red

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Permalink Reply by JessicaG on February 1, 2012 at 7:40pm

WOW! This is great! I'm in Utah and Dr. Ronald I. Apfelbaum M.D. has retired. Dr. Paul A. House just preformed my MVD last week ... as far as I know he is the best of the best in Utah.

Thanks for putting all of this together!

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Permalink Reply by Min on February 1, 2012 at 7:43pm

This is sooo awesome!! Thanks you very much Red. Min

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Permalink Reply by Mommthekid on February 2, 2012 at 10:09am

Hi Pat, based on some of your posts, I think you had your MVD surgery performed by the same doctor who performed my 16 yr old daughter's surgery. She is about 6 weeks post-op and is having severe pain around the incision site. The TN pain is gone, thankfully, but now we are dealing with a different kind of pain that doesn't want to let up. Anyway, I would be interested to know who exactly performed your surgery and if it happens to be the same guy, I will read more of your posts to see what all issues you have had. I'm very nervous about the amount of pain my daughter is experiencing because it doesn't seem right.

Pat said:

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

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Permalink Reply by Pat on February 2, 2012 at 11:06am

Mommthekid,

I'll be glad to talk with you if you send me a private message. Hopefully it's not the same surgeon for her sake and yours.

Pat

Mommthekid said:

Hi Pat, based on some of your posts, I think you had your MVD surgery performed by the same doctor who performed my 16 yr old daughter's surgery. She is about 6 weeks post-op and is having severe pain around the incision site. The TN pain is gone, thankfully, but now we are dealing with a different kind of pain that doesn't want to let up. Anyway, I would be interested to know who exactly performed your surgery and if it happens to be the same guy, I will read more of your posts to see what all issues you have had. I'm very nervous about the amount of pain my daughter is experiencing because it doesn't seem right.

Pat said:

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