Went in for my second appointment today, I asked if I have type1 or type 2 atypical? He looked at me funny(like he didn’t know what I was talking about) then said “oh yours is quite typical”. I reminded him that my pain started like a tooth ache with intermittent pain. Then it turned into constant 24/7 pain with varying waves of intensity, not electric shock like pain. (I do have mild shock like pains once in a while) but I didn’t tell him that because he clearly did not feel like listening. He then said to me in a “don’t question my authority tone” " it usually always starts out constant then as it progresses it turns into shock like pains". Now I know I am new to all of this, but I read the face pain info here and on other sites and that is not how I understood it. Can anyone clarify? This among other things that happened today make me think he doesn’t know what he is doing.
...hmmm, had a similar senario my self the first time! He didn't really know what I was talking about with the 'types' and gave me that same kind of look. I hung in there with him because he is very well respected and known in our area - he 'said' he had worked with TN patients before...time will tell. So far, he has helped in keeping his promise of "there is no reason you need to hurt" thing. He has upped my meds and given me more of others to add to them to almost make me the zombie from the Walking Dead...BUT I don't hurt, so I guess he was right!!?? I don't know, I am wondering what to do...but am almost afraid to rock that proverbial boat at this point...keep your self informed - keep looking up the latest and always reading on here! I find out more information from this site than anywhere else - PERIOD! It is good to meet you and hopefully we can learn from each other! Best of luck,
Cris
you may want a neurologist who REALLY knows TN
Can you switch?
Call around and ask how many TN patients they have : )
Your instincts are correct, he is a fool who needs to catch up with the TN information out there, Copy and paste the FACE PAIN INFO to him, might help! Strange how you, a new comer to TN already know more than this fool! Sigh!
My neurologist just said I had tn,gave me a prescription and send me on my way.I didnt even know what tn was until I googled it.Well,I never went back and now Im billed over 2000 dollars for an eeg,I had to wear for 3days at home,and said I didnt have seizures.what an idiot.To find out when I was in the hospital,I do have seizures.Now Im looking for another neurolgist that can help me.Wishing the best for you.
Most Neurologists aren't going to know the somewhat newly implemented facial pain classifications of TN. A Neurologist does not usually know much about TN in general. Some Neuros are good in that they can get you an MRI or refer you to someone better, usually a Neurosurgeon or an Orofacial pain specialist, depending on your case. (Which your GP can do anyway) If you want an expert, you'll need to find one. I know one would expect a Neurologist to have this expertise, but unfortunately it's the exception rather than the rule.
However, just because a Neuro doesn't the new nomenclature, that does not mean he won't be knowledgeable about TN. He may have a few TN patients so that would bring him so experience. Also, older Neuros are less likely to know this new nomenclature, but could have much more experience with actual patients.
My advice to those who haven't found a good Neurologist yet, is to try and work with the doctor in your life that seems the most helpful, within their limited knowledge of TN. (Maybe your GP?) That way, you can do tons of research and find the things that relate to your particular symptoms, and then bring that information to the helpful doctor. Then you two can discuss this info, adding their knowledge, and use it to find a plan forward together.
Just my two cents, the neurosurgeon that I have been dealing with doesnt like to classify TN into a breakdown of types, he feels that it is all tn and should not be broken down into type 1 and type 2 since so many people have so many different types and combo;s of pain. It may be that your neuro feels the same, but he should tell you that like mine did. If you believe he really doesnt understand that some of it is TN, then it is time to start shopping
Wendy
Thanks everyone, sorry I didn't reply sooner but this is my first day on a higher dose of Trileptal so I'm not getting everything done. Crystal and Wendy I think you are both right and I think he is treating it in the acceptable manner, Kc and Jackie I think you are also correct I'm thinking maybe you have had similar experiences and know where I am coming from? What it comes down to is I really don't think he cares or has a good handle on what I am going through. Glad to meet you too Cris, if you don't mind my asking what is he giving you that is taking care of your pain? My guy even said no to a lidocaine patch. Wishing the best for you too Barb I think there are a lot of idiots out there but if we keep looking we can find someone who can help us. I am trying to get in to a different neurologist at the University of Texas South Western. Hopefully they will be more knowledgable.
Thank you Red, as soon as I get in to a new Neurologist I am going to write him a letter, I will be sure to include a copy for him to peruse.
I've had very similar experiences too. I've been to 2 neurologists, neither of who seem to have any idea that there are different classifications or types of TN. My primary neuro even has several other patients who have TN but still seems to have only limited knowledge on the condition. He referred me to a neurosurgeon to discuss a procedure that the surgeon said I would definitely NOT be a candidate for due to my age. He said that he had no idea why my neurologist would recommend that sort of treatment for me (further adding to my doubts). It's so frustrating to spend time and money with specialists who don't seem qualified to adequately treat our condition. With so much time and money invested in one physician, I can't imagine starting over with another. Not to mention that it is apparently considered very taboo to switch neurologists in the area where I live (Northwest Arkansas). That was made uncomfortably obvious by both the 2nd opinion neuro that I saw, followed by my primary neurologist. Oh well, no one said that having TN would be easy. I think your and Red's idea of writing a letter including the Trigeminal Neuralgia Fact Sheet is a great plan. Good luck!
do you have a "regular doctor" you see for other things? You could get patches from them.
I think it's a CRIME not to give somebody something like that ---
What medical judgement against pain patches? There are no narcotics in them!!!!
Sorry this makes me furious because those helped me keep my trileptal at a lower dose so I could think less fuzzy! those patches keep many people from going over the edge - I hope you get relief soon!
I am new here. I just want to reply to the comment that was made re it being taboo to see another neurologist. OMG. I went to one neuro and got a check up, but he did seem distracted. Another one was highly recommended to me by a good friend familiar with TN, so I called for an appt. This second neuro was in a different office, many miles away from the first. Whe I called, the receptionist, after getting my name, saw in her computer that I had recently been to a neurologist. I was shocked. Seems that almost all the neuros in my town have formed a monopoly and it is next to impossible to switch neuros or get a second opinion. If you wish to do either of those things, you have to drive one hour to the next large city. It is too long of a story to post here, but through much good fortune, much help, an unusual circumstance…all of these things, I was able to get to the doctor that was recommended to me as someone who is likely to have more knowledge about nerve pain. I’m shell shocked because the pain is at times unbearable and to have to go through this circus with the neuro monopoly in my city was very trying, sad and frankly…concerning/troubling. None of the office personnel seem to care that my pain is severe and that I would have no clue that doctors in different offices have an agreement like this. Come to find out, a large percentage of the neuros in my city are tied up this way.
Nomad, you will be entirely within your rights if you decide to file a formal complaint of medical malpractice with the nearest branch of the American Medical Association (in the US), or with the local equivalent of your State Board of Medical Examiners. Access to a second opinion consultation is a fundamental patient right. If you don't challenge this practice, then who will?
Regards, Red
sorry I meant Lidocaine patches -- some have other types of patches that have narcotics in them
I would think that is illeagal in US - unless you are somewhere else - you MUST sign a release of info to any other doctor with HIPPA laws - that's awful!
Nomad said:
I am new here. I just want to reply to the comment that was made re it being taboo to see another neurologist. OMG. I went to one neuro and got a check up, but he did seem distracted. Another one was highly recommended to me by a good friend familiar with TN, so I called for an appt. This second neuro was in a different office, many miles away from the first. Whe I called, the receptionist, after getting my name, saw in her computer that I had recently been to a neurologist. I was shocked. Seems that almost all the neuros in my town have formed a monopoly and it is next to impossible to switch neuros or get a second opinion. If you wish to do either of those things, you have to drive one hour to the next large city. It is too long of a story to post here, but through much good fortune, much help, an unusual circumstance....all of these things, I was able to get to the doctor that was recommended to me as someone who is likely to have more knowledge about nerve pain. I'm shell shocked because the pain is at times unbearable and to have to go through this circus with the neuro monopoly in my city was very trying, sad and frankly...concerning/troubling. None of the office personnel seem to care that my pain is severe and that I would have no clue that doctors in different offices have an agreement like this. Come to find out, a large percentage of the neuros in my city are tied up this way.