Trigeminal Neuralgia suffers

It saddens me to read about your son. I had TN for 12 years and it finally got to the point that I too did not want to live. The TN pain got worse and worse over the years and the remission periods seem none existence. I'm a 48 year old lady with TN since I was 36. Over the years it was manageable with meds and remission periods. My longest remission was almost 2 years. Meds work in the beginning but they all lose effect after a while. Some loses effect after 1 week. That was pretty crazy. I finally decided on MVD surgery on June 19, 2014. Woke up with right side of my face completely numb with headache and pain from the surgery like I just got ran over by a bus. I did nothing but stayed in bed for two days in ICU. Day 3 I felt better and started physical therapy with walking. By the end of day 3 I was able to walk to the bathroom on my own and was released from the hospital.  This is day 7 at home. I am doing a lot better. I take my daily walk to get stronger. I do my breathing treatment to help open up my lungs. I am able to shower on my own. The headaches and pain from incision are very manageable. Last night I decided not to take the Norco drug that was prescribed to me for pain. It took the edge off the pain for sure, but it made me so groggy and sleepy all the times. I could hardly stay up for 2 hrs then I'm back to sleep again. Now I take Advil 200mg every five hours to help with the pain. So far so good. The one BIG complaint I have is the right side of my face is still numb. Some numbness did improve like my forehead, tongue and lips. These areas are about 15% numb; the rest of the areas like my cheek, chin, teeth and inside of my cheek are still 100% numb. I hope to have relief soon. I can't tell you if my MVD worked or not because since these areas are numbed, i cannot feel any TN pain even if I did have any. According to my neurosurgeon the surgery went very well and my numbness should be gone within 3 months. I wish your son the best and hoping he finds relief somehow. This is a horrible condition and no one should have to go through this. A good family support is crucial to TN sufferers. Keep him positive and pray, pray, pray. I'll be praying for your son to be pain free. 

Take Care,

Nina

My neurosurgeon said MRI does not show compression nerves. We get MRI to rule out tumor and multiple sclorosis. A good surgeon will determine if you're a good candidate for MVD based on your story, history & problems. I was so surprised when I went to see my neurosurgeon for consultation that all he did was listen to me. He asked about when it happened, how did I know I have TN, what did the pain feels like and how long did it last. After I told him my whole story, he then looked at me and said I'm the perfect candidate for MVD and that I will be pain free for a very long time after he's done with the surgery.

Based on my surgery report, there were two arteries (one really big one and one small one) compressed against the trigeminal nerve. He separated them by putting teflons in between. I was instantly pain free after surgery. Tomorrow will be exactly one month post surgery and I'm totally pain free. I got off all meds after two weeks post surgery. My facial numbness has also improved dramatically. I'm about 30% numb in my cheek, chin and teeth. I got feelings back in all other places including scalp, forehead, temple, eyelid, ear. My surgeon said give it 3 months, but I feel confidence that I will get total feelings back before then. My surgeon gave me 5 weeks for recovery, so I will be back to work on July 28. MVD surgery saved my life and gave me my life back.