I've been living with facial pain since 18 and it has progresses into diffrent types of pain throughout the years. Here's what my timeline looks like:
18-19 years old: Jaw and neck pain. Difficulty speaking and eating because it would hurt to much. Sometime's my whole head would freeze up for a few seconds. Saw a walk-in clinic doctor and he said that I have a stone in on of my nerves in my neck.
20-21 years old: The facial pain would come and go. Very unstable. Saw an ORL and he couldn't see anything
22 years old: The facial pain has increased considerably. I have never felt pain like this before. Wind and a hot shower will trigger the pain. I get shocks and would feel my eye twitch at some moments. The pain would feel like it was vibrating up to my ear. I would have to stop everything, close my eyes and hope that it doesn't last long...I've finally pushed to get a diagnosis and the walk-in clinic doctor says I have TN.
This is also the same year I find a family doctor (Hoorayy!!). He makes me go get a 750$ MRI scan. I'll be thanking him tomorrow because they have found a Arnold Chiari Type 1 Malformation.
This is scary, but i'm hoping this is the cause of my TN. Does nayone have some info on these two medical issues? Has anyone had a surgery and had relief?
I had decompression surgery and shaving of 2 top vertebrae 10 years ago for my 13 mm Chiari tonsils. I had severe headaches, 2 rounds of sinus surgery, steroid injections in the back of my head until it was discovered on an MRI. I had surgery less than a month later. Pain gone for 2 years, then headaches came back, turned out they were cured by going cold turkey off of Fiorinal and taking Lyrica. I never had facial pain.
I first got my TN type 1 pain 3 years ago. Pain felled me to my knees in the shower, I was screaming for "ice!", my husband thought I was yelling "Mice!". Was on cocktail of drugs and ER visits for a year, then had gamma knife in December 2012. It worked for 8 months, pain came back. I had another gamma knife this March and so far so good.
I contacted the great Dr. Casey when I was told I was not a good candidate for MVD for my TN due to Chiari surgery scarring. He indicated that TN may be a result of the "squished brain" syndrome we Chiarians have and that may wreak havoc with nerve plumbing.
Have you looked at the Chiari group yet? On the far right of this page there is a list of support groups and we have one for Chiari Malformation. You also might want to plug Chiari into the search box at the top of the discussion list I just did and it brought up several pages of threads so you are not alone.
I have a Chiari Malformation and had decompression surgery in 2003. Soon after I had the burning pain of TN2 in my scalp, and pressure in my teeth on the right side. This came and went until Dec 2011, when it became constant and unbearable. I started getting shocks in January of 2012. I was finally diagnosed in June of 2012, and started getting shocks and burning on my left side in October 2012. I saw a TN expert in November 2012, and he diagnosed me with bilateral ATN. He felt this was very likely a result of the Chiari. I had MVD on the right side in Jan 2013, and on the left in October. The MVD on the right did not resolve the burning pain, ( probably due to the length of time the nerve was being damaged )but did take cre of the shocks. In August 2014, I had a peripheral nerve stimulator implanted to control the pain, and it works very well! My left side MVD was a success, and now I am pain free.
I hope you can find some relif soon!
Christine
Thanks for the info! I will be checking out that group for sure!
shadow2 said:
Have you looked at the Chiari group yet? On the far right of this page there is a list of support groups and we have one for Chiari Malformation. You also might want to plug Chiari into the search box at the top of the discussion list I just did and it brought up several pages of threads so you are not alone.
Very interesting! I'll be put up to date today on what I have and what my options are.
Christine said:
I have a Chiari Malformation and had decompression surgery in 2003. Soon after I had the burning pain of TN2 in my scalp, and pressure in my teeth on the right side. This came and went until Dec 2011, when it became constant and unbearable. I started getting shocks in January of 2012. I was finally diagnosed in June of 2012, and started getting shocks and burning on my left side in October 2012. I saw a TN expert in November 2012, and he diagnosed me with bilateral ATN. He felt this was very likely a result of the Chiari. I had MVD on the right side in Jan 2013, and on the left in October. The MVD on the right did not resolve the burning pain, ( probably due to the length of time the nerve was being damaged )but did take cre of the shocks. In August 2014, I had a peripheral nerve stimulator implanted to control the pain, and it works very well! My left side MVD was a success, and now I am pain free. I hope you can find some relif soon! Christine
I've had moments where the TN would randomly pop-up, like while watching TV or like you said, in the shower. The two moments where I would be the less stressed of my day!
Not fun! They put me on Tromadol and it has helped, but I will almost always get a shock when touching my chin...
mollycule said:
Dear French Canadian Brunette:
I had decompression surgery and shaving of 2 top vertebrae 10 years ago for my 13 mm Chiari tonsils. I had severe headaches, 2 rounds of sinus surgery, steroid injections in the back of my head until it was discovered on an MRI. I had surgery less than a month later. Pain gone for 2 years, then headaches came back, turned out they were cured by going cold turkey off of Fiorinal and taking Lyrica. I never had facial pain.
I first got my TN type 1 pain 3 years ago. Pain felled me to my knees in the shower, I was screaming for "ice!", my husband thought I was yelling "Mice!". Was on cocktail of drugs and ER visits for a year, then had gamma knife in December 2012. It worked for 8 months, pain came back. I had another gamma knife this March and so far so good.
I contacted the great Dr. Casey when I was told I was not a good candidate for MVD for my TN due to Chiari surgery scarring. He indicated that TN may be a result of the "squished brain" syndrome we Chiarians have and that may wreak havoc with nerve plumbing.
I would also get pain brushing my teeth, blowing my nose, talking, chewing and sadly of all, kissing. I am so happy I can do all now, though I keep waiting for the other shoe to drop!