Well I was diagnosed 10 years ago and have had decompression surgery, It helped my TN went away but then came back less than a year later. Just wondering if this is common and if so please let me know what you know. With the ACM i had a sub occipital crainiotomy with duraplasty due to limited flow thru the ventricals in my brain, this surgery was not for the TN, but did resolve it. anyone let me know what you think, thanks.
Hi Delro
I have a Chiari Malformation , had a successful decompression 9 years ago. I had duraplasty with a bovine patch, craniotomy and laminectoomy of C1 and C2 vertebra. I never realized that the pain and pressure I experienced AFTER the surgery was TN. It was never constant, just occasional, and I always thought it was from the Chiari. Now, almost 10 years later, I had been in so much pain I finally got the TN diagnosis. I have TN2 Bilateral. I consulted with a neurosurgeon in November, and he thinks there may be some relationship between TN and Chiari, but the surgeries are very different. I am hoping to have MVD in January to correct the TN. Maybe your TN was in remission? I have read of others here who have had periods of that.
Hi Christine and Delro,
I am a chiarian and just diagnosed with ATN/TN. I am grateful to connect with others like me. I had post decompression surgery Jan 2012 and it went well. My CSF was blocked, so it needed to be done. I have a very high tolerance for pain as I have been living with headaches in some shape or form most of my adult life. I have even asked others “don’t you get headaches like this…?” Referring to the burning, stabbing pain…only to hear people say they never get headaches. I ACCIDENTALLY came upon the tn diagnosis by an ETN on the first visit. He ruled out anything wrong with my sinuses, listened, prescribed lyrica and sent me on my way. I am going to send his office some cookies next week, cuz after one week on lyrica, I have already noticed a big difference. I also take topamax and Zoloft. Now, I am not going to blame my NL…in all fairness, I was just quietly living with the pain… I am going to see my NL next week.
So…I DO think there is a connection between the two. Curious. Did you have CSF blockage? Appreciate your thoughts and feedback!
Traci
Hi Traci
I just had MVD on January 25 for the TN on my right side. It was very successful, as I no longer have the pain on my right side. I do however have TN on my left also, so I am planning on having surgery on that side in the near future. I asked my surgeon if there was a relationship between the Chiari and the TN, and he felt there surely must be. Since the skull is too small for our brains, it only makes sense that everything is crammed together, and veins or arteries get pressed up against nerves.i feel that the two must be related, too.
I am so glad to hear you are doing well with meds, and hope you remain pain free!
Best of luck to you!
Christine
I think if you go to the "groups" tab above - there is a group for this -- there also is CMF group on the list that is on the left side of your screen here.