Hi Everyone,
I don’t have TN, but my dear sister does. she’s a gentle soul; doesn’t like to search or read posts about TN as reading about people suffering like her makes her pain that much harder to bear. I’m writing here on her behave and only passing the positive things I find to her.
My sister had TN for almost 4 years. Last year her medication was making her even more sick and doing nothing for the pain; she was only taking a very high dosage of Lyrica, as she was allergic to tegretol. So, finally she had the MVD surgery last March.
She recovered from the surgery and she was completely pain free. No pain, No numbness no discomfort what sobever. We were all ecstatic. Her first comment when she was out hospital was “everything looks very bright and colourful” not that she didn’t see colour before, but the pain was tinting everything for her before.
2month post-op and everything was going great, she decided to have a tooth filling that she couldn’t do for the last two year and it’s on the same side of TN pain.
Guess what? the pain was back two days after. The stabbing electric shock like pain when she talks or eats she also start to have the cold sore around her mouth that she used to get when the pain is so severe.
This been going on for a week now. We went to see her neurologist and he asked her if she can touch her right side of face without any pain or tenderness and she said yes. Which is something she couldn’t do before the surgery. He concluded that the source of pain is not the Trigminal nerve but rather a phantom pain or learned pain that her brain remembered after she had her dental work and it may settle down eventfully. We don’t know if or when it will go away.
She was very depressed when the pain came back after MVD and that alone may have increased her pain level even more. But since we saw the Neurologist, and he told her it may go away on its own. She felt a little better.
She still refuses to take any more Lyrica meds because of its side effect. She said she wants to go on as much as she can without any meds until it hopefully settles down.
I’m bit worried about her; when she’s in pain she doesn’t talk much and she stops eating. The months leading up to her surgery her pain was so bad even with medication that she would have only small glass of milk for the whole day nothing else. She was very weak, very anaemic.
Can you please Advise me if anyone of you experienced this phantom pain after MVD? Has it gone away? Does it get worse over time?? What to do you do about it?
I wish anyone who’s reading this who has any kind of TN pain, a full recovery and an immediate relieve of this horrible condition. My thoughts and prayer with you all.
Fawzia