My TN is right sided. Last fall I had an unsuccessful MVD. Since then my pain has been escalating and more difficult to control.
In the past few weeks I have noticed twinges on my left side. Mostly my tongue so far. At first I thought it mere coincidence but the frequency is beginning to feel familiar. I know I have a huge compression on my left side but till now it was not ‘active’.
If any of you with bilateral TN would be willing to share your story with me it would be much appreciated.
Wishing you all many pain free days ahead.
Hi Patty,
Sorry to hear you are in so much pain. I have bilateral ATN, with both the shocks and the constant burning boring pain. My right side was involved for a lot longer than my left. The right side TN2 type pain had been on and off for about 9 years before becoming constant and intense, and then the shocks started in January 2012. I tried several medications, but never got complete relief. My left side pain , both the shocks and constant burning, boring,started in October 2012. I saw a leading TN expert in November 2012 and had MVD on my right side in January 2013. Unfortunately, the burning boring pain never resolved, so in August 2013, I had a PNS implant to control the right side pain. I am happy to say that works very well for pain management. In October 2013, I had MVD on my left side, and so far, that was successful. I no longer take medication for my TN!
Please feel free to ask me any questions.
Best,
Christine
Thanks for sharing Christine. I am desperately hoping that these twinges are just a fluke and not the early signs of TN. I admitted them to my husband last nite and predictably he was very worried. Nothing can be done to change the course. I guess it’s a wait a see game now. Perhaps it is my morning brain but what is a PNS? Thanks again.
Christine said:
Hi Patty,
Sorry to hear you are in so much pain. I have bilateral ATN, with both the shocks and the constant burning boring pain. My right side was involved for a lot longer than my left. The right side TN2 type pain had been on and off for about 9 years before becoming constant and intense, and then the shocks started in January 2012. I tried several medications, but never got complete relief. My left side pain , both the shocks and constant burning, boring,started in October 2012. I saw a leading TN expert in November 2012 and had MVD on my right side in January 2013. Unfortunately, the burning boring pain never resolved, so in August 2013, I had a PNS implant to control the right side pain. I am happy to say that works very well for pain management. In October 2013, I had MVD on my left side, and so far, that was successful. I no longer take medication for my TN!
Please feel free to ask me any questions.
Best,
Christine
Hi Patty,
I'm sorry you are going through this and are in pain. I have been there a few times now. It is exhausting.
I have bilateral ATN. I have had left side ATN for a year and a half-teeth upper and lower, jaw, cheek and ear. I take Amitriptyline which works well for me. Then three months ago, same as you, with the tongue. Incessant, constant pain. Within a couple of weeks it spread to the teeth, roof of my mouth, under my lip and up to my ear. An increase with my medication has things pretty well under control again.
I have had two MRI's. Neither has shown anything.
Hi Patty,
A PNS is a peripheral nerve stimulator. This device has been used for years for chronic back pain, and some types of migraines . It is made up a battery that is connected to wires, or leads, that are placed just under the skin along the path of the trigeminal nerve. The battery, which is placed just under the skin in the chest, delivers electric current to the leads, which basically shuts off the pain impulse to the nerve. The amount and intensity of the current is controlled by me with a handheld device. I know this sounds bizarre, but it works amazingly well at pain control.
My device is made by St.Jude Medical . You can go,to their website for more information, and please don’t hesitate to contact me if you have any questions.
Christine