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Unread 04-27-2012, 08:07 AM   #1
ChaosGuru
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Default Hope I've found the right place!

I'm new to this forum, and to forums in general. OK, to computers in general, too. But I have questions about atypical trigeminal neuralgia (I am newly diagnosed) and surgical alternatives.

After months on waiting lists for an appointment with a headache specialist, I finally got in to see one, and he immediately diagnosed me with TN and scheduled me for an appointment with a neurosurgeon. There is some question as to whether or not mine is "atypical" (I will take this up with the neurosurgeon) but I think that until this question is addressed, assessing the efficacy of surgery seems to me to be premature.

Wow, once the ball started rolling, it seems to be rolling FAST. I would appreciate any input I can get.

THANKS!
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Unread 04-27-2012, 06:18 PM   #2
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Hi there I want to at least welcome you and tell you I am glad you found your way here.
i dont know what i can offer as far as input. I have a PNS but you wont get this far for a good while .I dont have a typical either but face pain is face pain .the doc will most likely start you on meds or a combo of meds and then if none of the meds work then the doc will consider surgery. like you say it is premature right at this time. But we are here for you every step of the way ..to vent to get info to find contacts to help cope ... your part of the family now . when are you seeing neuro doc? I do hope very much that you will stick around and update as things move along. there is allot of great folks here ..your not alone and we care. Sending low pain and hope you and yours have a wonderful weekend.
PEACE
BMW
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Unread 04-28-2012, 12:55 AM   #3
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Default thank you -- and a question

Thanks for responding!
You're right--I have been around the block with meds. Nothing has helped.

The first neuro I saw literally threw up her hands and said she couldn't help me. The second neuro heard about the facial pain and said I had TN, and then pretty much tossed me over to the surgeon.

Here's my dilemma: I have had migraines on the left side of my head for decades. Then I started having what I thought were cluster headaches--an intense burning behind my right eye. Then the facial pain started--I don't need to describe THAT. The problem is that the migraine is now 24/7, the eye pain is becoming more frequent and longer-lasting. It seems that I have a triple thing happening. The neuro who diagnosed the TN only addressed one part of it before shipping me off.

I guess my question is: Does anyone have suggestions for how to approach the docs? I don't seem to be getting heard.
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Unread 04-29-2012, 03:07 PM   #4
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Originally Posted by ChaosGuru View Post
Thanks for responding!
You're right--I have been around the block with meds. Nothing has helped.

The first neuro I saw literally threw up her hands and said she couldn't help me. The second neuro heard about the facial pain and said I had TN, and then pretty much tossed me over to the surgeon.

Here's my dilemma: I have had migraines on the left side of my head for decades. Then I started having what I thought were cluster headaches--an intense burning behind my right eye. Then the facial pain started--I don't need to describe THAT. The problem is that the migraine is now 24/7, the eye pain is becoming more frequent and longer-lasting. It seems that I have a triple thing happening. The neuro who diagnosed the TN only addressed one part of it before shipping me off.

I guess my question is: Does anyone have suggestions for how to approach the docs? I don't seem to be getting heard.
Have any of these docs done an MRI? With all three things going on simultaneously, I think someone needs to take a good look. As for getting heard, with some docs it seems nothing you say gets through to them. Have you asked your GP or PCP for a recommendation? That may be a good place to start if you have a good relationship with that doc. They know the reputations of the neuros around you and can/should be able to guide you. With todays insurance, too many of them try to compartmentalize your treatment and they only want to address one thing at a time which is ridiculous, but thats another discussion. I would also take someone with you that can focus on the docs response to your questions and also speak up on your behalf if they don't answer your question. If your insurance allows and you can afford to do so, going to a clinic like Mayo or some other one would also be a good place to start. They work as a team and get input from other docs within their specialty and are very good at addressing all your problems, from my own experience. If you see a doc who doesn't have experience with a particular condition, ask them if they can refer you to someone who has, or better yet, call their office ahead of time and explain the situation before scheduling an appointment to keep you from wasting your time and hopefully they will be upfront with you in return. This is what occurs to me off the top of my head. I do hope you can find someone who can help you. There are places where patients rate their doctors that you can also search on the internet. This may help you weed out the real bad ones.

Take care and let us know how things are going. ee
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Unread 04-29-2012, 06:10 PM   #5
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Default Thanks again!

You have no idea (or maybe you do) how good it feels to have some support from people who are also living with this!

At the risk of being thought of as a nutcase, I took time to type up a summary of my problems, including onset, location and quality of pain, etc. (this way, I don't have that deer-in-the-headlights feeling when I go in there). I have made up my mind that I will go over this with the doc. If nothing else, it will help me to determine if he is willing to meet me halfway and if I'm being taken seriously. That's all I'm hoping for at this point.

You had a good idea about taking someone with me. I persuaded my husband to take a half day off work to come with.

My appointment is tomorrow morning. I'll keep you posted.

Ciao!
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Unread 05-01-2012, 06:25 PM   #6
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Default Gamma knife surgery?

Had my visit with the neurosurgeon. Took your advice and had my husband go in with me. I also took the time to write out my concerns and questions and had them put in my file. Now when I go see the neuro/oncology surgeon next week, hopefully we'll be ahead of the game.

Now we're talking gamma knife surgery. I'm doing research on that now. Any suggestions? Should I start another thread to request input?

THANK you so much!
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