Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
had a good trip to durham. I made it to Duke and met Dr Paul Burke. He seems really nice. He was a little perplexed at my facial pain and symptomes. He said it's a combination of the 5th (TN) and 7th Nerve. He asked what meds I had tried I told him and he said ok have you ever seen a surgeon. I said no sir. He said he would go transcribe some stuff & be right back. He called a surgeon while gone. The surgeon wants to meet me after I have a specialized MRI done. He said I do need brain surgery for my 5th and 7th nerves. they are both affected bilaterally. I have been put on a new med (baclofen) that's a muscle relaxer for my facial pain. He said it will help some with the pain. I have tried muscle relaxers before and they didn't do much to help. Just made my CFS worse. I will try it again though.
I do not have MS although the medicine I am on is used to treat MS and spinal cord injuries. He said it might also help where I broke my back and spine when I was younger. I don't have a tumor in my brain either. That's good. My brain function was good.
Dr Burke want's to try an electrostatic (?) test to see how much damage is done in my face as I have lost some feeling in my face over time and the sensitivity areas. I was like I don't think so uh NO. If it's absolutely necessary I will do it. I just don't like the idea. I fear stuff touching my face.
While I was @ Duke my lil nephew Nick called his mom (who was with me) and asked "Are they going to cut Aunt Lisa's brain today?" I thought that was cute he was home with Strep and an ear infection adn thought about me.
I have teh MRI done 15 November. and then we will see about surgery.
Love ya,
Lisa
I do not have MS although the medicine I am on is used to treat MS and spinal cord injuries. He said it might also help where I broke my back and spine when I was younger. I don't have a tumor in my brain either. That's good. My brain function was good.
Dr Burke want's to try an electrostatic (?) test to see how much damage is done in my face as I have lost some feeling in my face over time and the sensitivity areas. I was like I don't think so uh NO. If it's absolutely necessary I will do it. I just don't like the idea. I fear stuff touching my face.
While I was @ Duke my lil nephew Nick called his mom (who was with me) and asked "Are they going to cut Aunt Lisa's brain today?" I thought that was cute he was home with Strep and an ear infection adn thought about me.
I have teh MRI done 15 November. and then we will see about surgery.
Love ya,
Lisa
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
For some reason I thought you were having surgery last week down at Duke. I got that all messed up I guess, but it sounds like the trip was important.
Are you getting the "thin-cut MRI " I've heard about ?
I don't know what the electrostatic test is.
Big hugs for you . I hope the new medication works out.
XXXXX
It's called a bilateral CM5 sequence ostenbach protocol. I am not sure what all it entails
the electrostatic test is basically electric shock as I am begining to loose feeling in my face aftere constant pain for 3 years and he needs to access the limits of my feeling.
Sounds like you are at the best place to get some help. It is very frustrating to have to wait so long for tests. Be patient while they work on the best answer for you.
Glad you are getting the help you need.
Becky
Thank you for recording your experiences and concerns.
XOOOXOXOO