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.
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.
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
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.
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.
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.
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" .
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.
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" .
I am looking for an imaging center that does neurograms, MRI of the cranial nerves, please.
It isn’t a doctor search per se, I was wondering whether it could be a satellite resource though?
At any rate, acute question: does anyone know of an imaging center in the San Francisco Bay Area in Northern California that does TN related imaging / neurograms / MRN of the cranial nerves, please?
the radiologist at UCSF’s China Basin campus just stated they do not do neurograms of the brain, they would only do the cervical spine (not likely to reach up high enough for the critical juncture…)
Thank you!
P.S.: Should I post this some place different/in particular on this board? Thanks again -
Jay, it hasn't been possible to probe our database for the level of detail needed to run a useful listing of MRI centers. From a limited amount of online research, my impression is that Neurograms (aka "neural engrams") are not widely used due to the difficulty of seeing into the desired region at the base of the skull. For that matter, not all MRI centers do the FIESTA MRI procedure which seems to provide the best thin-slice sub-millimeter resolution in the region of the brain stem.
But one way to sort out an MRI center is to call and ask if they do FIESTA MRI. If they don't, then they're likely not appropriate for TN patients.