I've been seeing the same neurologist for some years now, who is old school from Stanford and still insists that there are only 2 classifications for TN - Classic TN and Atypical Facial Pain. Because my pain is constant, he has me in my records as AFP. I have brought him paperwork numerous times from various sources to show him that things have advanced since then, and usually he won't even look at them. This time he did scan them, and said, well, by their definition, you are TN type 2 (Hallelujah! - finally!). I asked him if he wanted to keep what I had brought him, he declined. I asked him if he would then update my records with that, since AFP is becoming a definition that infers that there is a psychological component for the pain, and that I was worried that it would affect my private disability (and my federal disability, for that matter). Instead of updating me to TN, he said that he would just send them a letter of clarification if they needed it, but my record that all other doctors in Kaiser see is still AFP. I'm so tired of going to the ER when the pain is just killing me, and there to be no notation of TN in my chart. I'm DONE with that. I'm done with writhing for 5 hours while they triage me as a "headache syndrome"
Please, does anyone know of a Kaiser doctor (Neurologist, not Neurosurgeon) in Northern CA who SPECIALIZES in TN? I'm so tired of this run-around with him!!! I've had this since 2006, if I haven't gotten anywhere with him, then it's not going to happen. Please help, I'm willing to drive for hours for the right doctor, and so is my husband. He is just as sick of this as I am. He works with a few neurologists, he is going to ask them as well.
Thank you for any help, and thank you especially for your willingness to read through this entire long missive!!! ;o)
I went through Kaiser and have both TN 1 and 2 regions 1 and 2. I finally found some relief through Kaiser Redwood City Dr. SEDRAK. I have a spinal simulator implant that has allowed my med to be reduced to almost nothing and I have my life back.
You need to be proactive and insist on a referral there. My primary care Dr.is Mecklenburg out of Santa Rosa.
Thanks for your reply! I am so happy to hear about your good results! How long has it been in? Is it placed in your face, or on your spine? And how do you feel about Dr Mecklenberg? Is he a neurologist? Would you recommend him? Do you feel that he has a relevant understanding of this condition, or would I find myself in the same boat as I am in now? You don't say much about him and I'd like to hear more.
I am actually a former patient of Dr Heit, who did my (failed) MVD, and also did his very first PNS on me. Prior to that he had offered to do either an MCS or DBS. but I didn't want another hole in my head, because my MVD had been fraught with complications.There were also too many complications with the PNS and it had to be removed. I worked with Dr Heit for 6 years until there was nowhere else to go at that time, and moved on to a Chronic Pain Specialist.
When Dr Heit had to leave himself, (for a degenerative condition where he actually became a patient of the same department), I was assigned to Dr Sedrak. Dr Sedrak has offered to do a Gasserian Ganglion Stim, but he would have to cut into my scalp in one of my worst pain areas, which is already scarred up from the PNS and a shunt that had to be implanted after the MVD. So that is my Kaiser saga. He said that I have Trigeminal Neuropathy. Dr Heit had said, at different times, that it was type 2, but then in other records, he called it AFP.. I am a mess! Somebody please decide on my diagnosis once and for all!!
So I'm guessing you are starting to see where I am coming from. ;o)
The only NS whom I have ever met, who uses the most recent terminology, is Dr Chang at UCSF, but I need no NS services at this point. So I am looking for a neurologist who is up on it all. I hear that the neurologists at UCSF have very mixed reviews, so I have avoided them because seeing them would be out of pocket. I am considering going to Stanford at this point, but I don't believe that the Kaiser system would necessarily accept their diagnosis. What do you all think? Should I just go to Stanford, or do you agree that Kaiser wouldn't accept their assessment?
Thank you for your advice, I really appreciate it, and I hope to hear back from you re.: Dr. M. .
Who is your current Kaiser Neuro and is he/she in Oakland? have you considered asking Dr. Chan or Dr. Efron (RWC neurosurgeon who also spoke at Oakland support group) for a reference (not referral, but reference, i.e. who would they specifically recommend in any Kaiser bay area facility or even outside of Kaiser). I haven't had much to do with my Oakland Kaiser Neuro but I'm not fond of him and I think he is also very close minded. Perhaps one in the same.
My Neuro is in Walnut Creek, and he is very good, very intelligent, but apparently not open to change :o)
I have met Efron to have my shunt adjusted, but he also ascribes to the two diagnosis paradigm - when he spoke at one of the TN support group meetings he had presented pretty much that. Dr Chang from UCSF had spoken at one of the prior meetings and he was much more on top of the current definitions. I like Efron, but he wouldn't be of any help. However I don't know Dr Chan - is he a neurologist or a neurosurgeon? I would like to hear more about him.
It's funny what you say about the Oakland neurologist, I know exactly which one you are talking about, and I totally agree!!! I was told that he is very sexist and often diagnoses women as "psychogenic", which he did with me. He also has that reputation among the other East Bay neurologists, so yes, he is that bad!!! You gave my husband and I a good laugh with that comment.
I am realizing just how much I've experienced along my route with this illness.
I look forward to hearing about Dr Chan, I hope to hear more about him.
I went through 17 years of hell. I feel like I saw every doctor and took everything they prescribed. I even went to Texas and Nevada to see doctors. I would be happy to share whatever information I can with you. Though I am in disbelief myself, I was finally able to solve my problem with supplements and diet. Why don't you read my bolg, Part 4 and see if there is anything there that you think might help.