My MVD surgery was Sept 17th. I was pain free until Thanksgiving. That morning, I woke up, ate a bowl of cereal (nothing crunchy, it was Lucky Charms - yep still love the kiddie stuff), and 10 minutes later I had the exploding pain in my lower jaw. It felt like my teeth were going to pop out of my gums. It lasted about 5 minutes. Throughout the day I started getting the burning, stinging feeling in my gums, cheek, jaw, teeth, and it felt like it was even in the muscles of my mouth. This went on for two days and then the third day, Saturday, the fireworks started. The pain was popping around all over the place and it was getting stronger. By Saturday night I couldn’t take it anymore. It wasn’t the worst pain I’d felt from TN but it was exactly like the pain I felt in Oct 2008 when this TN started. I broke down and called the on call doc from my surgeon’s office. I told her how I had been weaned down to 200mg of Neurontin a day (for the last 3 weeks) and had stopped taking Tegretol and Topamax several weeks ago - but in the last 3 days I had upped my Neurontin and started taking the Tegretol again in hopes it might help the pain. She sent me to the emergency room.
I just got back from the ER - they gave me a round of IV Dilaudid and Toradol and then gave me the option of being admitted and staying overnight. In the end I decided to go home and he gave me a prescription for Toradol and Zofran (for nausea) and new directions for the Dilaudid I already have at home.
I hope this works and that it’s the end of the pain. I am to call my surgeon or neuro on Monday.
I am really sad this is happening again. I don’t understand how or why. I can’t go through this again, especially since I just had the surgery. I hope to get more answers on Monday.
I’m really sorry to hear that it came back like that, and so soon after having the surgery. I’m not a surgery candidate, but if I was I admit I would also give it a try. I heard it does occasionally come back, but usually a few years after the surgery is performed.
Hope the meds get you through today and that there are answers for you tomorrow.
It’s always disheartening when you hear someone has beaten it, but there must be an explanation and a light at the end of the tunnel for you Good luck!
Even though I haven’t been through as much as you, I feel you pain. Literally, a not so literally …
Its the whole ‘waiting’ thing that gets me. Just when you feel like its gone, its back. Even though I am not really diagnosed yet … I understand your sadness. Why is it back.
Hi Misty. I can totally relate to your pain. At first, I thought my pain was root canal then I felt a burning sensation in my eye socket and having migraines. My entire right side of my face was in intense pain. I thought I was going crazy. My dentist said my x-rays were inconclusive and suggested I see a neuro. I was releived when he told me it was TN the moment I described to him the details of what I was feeling. He prescribed lyrica at 75mgs twicw a day. It didn’t work overnight but after I’ve been taking it awhile, it helped relieve the pain. The aura is still there but at least I can manage and keep it in check. Lyrica is prescribed to patients with fybromyalgia but doctors can not explain why it works for TN patients. To be honest, I find neurontin a strong medicine since it is prescribed to bi-polars.
I had surgery Nov. 2009, felt good for 5 weeks, then I started having pain in my lower jaw. It also is partially numb. What bothers me is it feels like I have a lump in my jaw and it is swollen. I called my surgeons office too which is 150 miles away from where I live. They feel I may have a secondary problem, so I am going to a ENT this week and than on to see the neurologist. Like you I am disapointed.
