Hello everyone. I was diagnosed with TN in the summer of 2010. Since then, it has gotten progressivly worse. I am taking 600mgs Neurontin 3-4 times a day and 200 mgs of Lamictal. I just added the Lamictal a couple of months ago and it has helped somewhat but I am still having bouts of unrelenting pain. I went to a neurosurgeon at Vanderbilt hospital in Nashville by the name of Dr. Peter Konrad. I absolutely loved him. He spent so much time with me and answered all of my questions to the best of his ability. He is very familiar with TN and the MVD procedure as he said he does at least 2 of these procedures a month and sometimes even more than that. I had an MRI done over the summer and I took the disc to him to look at. He viewed it before coming in to the room. He said that he is quite sure that he sees a vessel that seems to be very close to my trigeminal nerve. He even showed me the scan and tried to explain in to me but it was so hard to make out. He said that the trigeminal nerve is so small that to be 100% sure would be if there were 3d MRI's. But, he said that he is almost positive that he seen the problem. So, with that being said he recommended that I have the MVD. I am only 29 and in good health so he said that this would be the best time to have this procedure done. He told me that there is a 90% success rate. He gave me all the details of the surgery including the risks and post-op recovery. I am just so scared that I will fall in to that 10% category and that it won't work. I can't imagine how I will feel if I have the surgery and then still have the pain. It would be so devastating to me. I guess I'm just looking for some encouragement and advice and maybe even stories from some of you that have gone through the procedure. Thank you so much.
I've been talking with over 3,000 face pain patients during the last 16 years, Mary. My wife is one of those who manage their pain adequately on medication, and she's in her 70s. However, if her pain stops being manageable with Neurontin and other anti-convulsant drugs, I won't hesitate to recommend MVD to her as the best available solution. I can understand your fearfulness. But I think you need to balance what "might" happen against what actually IS happening, and the effects it has on the quality of your life.
There are also a number of patients out there in that initial 10%, for whom a SECOND MVD turned out to be what was needed for success. I wish you well with this decision
Mary, my 16 year old daughter had MVD on December 7, last week.
She returned home the following day and has been doing
Great!! She has had teeny “twinges” inher face
But NOTHING like what she was living with before!
It was scary, as the unknown often is, but I’m glad that
She made the decision to go through with it. She had
NO quality of life before.
Red, thanks for your advice. I'm so happy that your wife has been able to control her tn with medication. That is so wonderful! I do try to keep telling myself that anything is worth a try right now in order to see if I could get out of this pain.
Natural0195: I'm very thankful that your daughter has had success with her surgery. I hate that she had to have it so young! If you don't mind my asking how long has she had the TN? How was the surgery itself for her and the recovery been? I wish her continued success!!!!
She was diagnosed July 2011 after a horrid middle and outer ear infection. During surgery the doc found an artery and a vein compressing the nerve so he placed two sponges. Her surgery was about 2 1/2 hours and her recovery has been pretty text book. Bad headache after, some nausea, and very tired. She will have the staples removed in about a week. She continues to thank me for not stopping to try to find someone who could help her! She has not been to school since Sept. And has missed out on many activities! I know I was not the one having the surgery, butnot seeing her in pain anymore is awesome! I pray that this continues!!! Feel free to contact us again and good luck!
mamaof2 said:
Red, thanks for your advice. I’m so happy that your wife has been able to control her tn with medication. That is so wonderful! I do try to keep telling myself that anything is worth a try right now in order to see if I could get out of this pain.
Natural0195: I’m very thankful that your daughter has had success with her surgery. I hate that she had to have it so young! If you don’t mind my asking how long has she had the TN? How was the surgery itself for her and the recovery been? I wish her continued success!!!
Hi there --- I'm at 7 weeks of recovery today. I had no pain upon waking from my MVD. I did not want to take those meds anymore- they were ruining my life. I don't regret it and I know I could face another in 5 months or 20 years, but I would do it again vs. pain= having a tazer to my face!