Would anyone have a recommendation for a neurologist specializing in facial nerve pain/atypical TN in Chicagoland? I had an appointment today with a neurologist at Northwestern (one of the best hospitals in the country) and left in tears. He saw in my medical history that I was previously diagnosed with anxiety and basically told me to up my Paxil and blood pressure medication and refused to help me in any way. He told me I definitely don’t have TN because I don’t have the shocks and electric pains and wasn’t remotely interested in me telling him i have constant tight burning pain in my cheek and nose. I need someone who will actually listen and knows this condition.
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I’m so sorry to hear you had such an awful experience, I can relate. I found my neurosurgeon thru the FB association & suggest to try that if you don’t get a recommendation from someone. I was willing to go to John’s Hopkins & I live in AZ but was lucky to find an amazing specialist locally. Im sure you can too as Chicago is such populated area.
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I can help you tremendously!!! I am a dentist who sold my Michigan Ave practice because of TN. Did you know there is a facial pain clinic at the University of Illinois Dental School!!! I went to the lectures of the Head Dentist who runs the clinic. Shes a lovely Indian woman who is soft spoken and knows her stuff!!! Did you know there is a pain speciality in dentistry than is an extra 3 years of study after dental school? There are only 12 dental schools that offer this speciality in the US. She is the only dr in Chicago with this speciality training. I’ll send you her name when I have a better internet connection.she does have private office hours sparingly. Also there is a head and neck oncologist at rush Dr Kirsten Stenson that is fantastic!!! She referred me to Dr Thomas Kelly a neurologist at U of C. He saved me!!! It will take you 6 months to see him, so I would start at u of I dental school first.
I have to say that only a few dentists and neurologists are knowledgable in facial pain. I first went to northwestern and they did not know how to treat me. Every one with facial pain suffers in different ways!!! How dare those doctors poo poo you!!! They did that to me too because they are not well read up!!! I was injecting lidocaine into my face daily until I received the proper help!!!
How can we chat off of this site. What is your email?
Also the Dr who wrote the book on trigeminal
Issues is at U of Illinois too. Help is on the way
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The pain dr at Univ of Illinois is Jasjot Sahni- you will love her!!!
Also dr Michael Miloro wrote the book on TN pain!!! It’s the only book that is comprehensive on TN. He’s a univ of Illinois too.
Dr Sahni sees patients in the loop- look her up if you don’t want to spend a million hours at the dental school.
Good luck
@Atypical_dentist thank you so much for getting back to me. Just last night someone else recommended Dr Sahni!!! I will def be making an appointment to see her!!
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Sorry to hear of your troubles, no one should live in pain and certainly not be ‘fobbed off’ by health care professionals; something I know all too well.
Unfortunately you haven’t given much details of your symptoms and if a Neurologist has said it’s not TN, definitely get MULTIPLE opinions; I’m on my 5th :’( (If I had believed 2 of them, I’d still be in excruciating pain.)
I’m not a doctor but am learning fast. Have you verified it’s not sinusitis or nasal polyps? Also, do you possibly have attacks when your systolic blood pressure rises? (Otherwise, there is little point increasing your blood pressure meds for the pain.) Have you had a CT scan and MRI to rule out any possible other causes?
I was originally diagnosed with possible TN but in my case it’s likely SUNCT and Hemicrania Continua. Unfortunately TAC’s are very often overlooked too.
Good luck in your quest for ‘normality’ x