Does anyone else have "Secondary TN" caused by a tumor or another condition? It usually presents itself as Atypical.
Hi, my name is Tracy and I suffer from ATN, mostly the constant burning in my face and gums with sporatic eye, ear and face pain . . . here is my story.
I was born with a rare genetic condition called Olliers disease (Enchondrom atosis) but was not aware of it until recently . . . It has changed my life forever. After many months of pain in my head and burning sensations, I fianlly gave in and went to the dentist, bad choice but who know . . . I had beautiful teeth and nothing appeared wrong so I was referred to a gum specialist who I would get to see in about a year. The pain got greater and greater and I opted to live in the Emergency Dept at our local hospital in June 2009. A CT showed a blocked sinus cavity that required surgery. The surgery went well however things did not seem right, the pain was still there . . . fortunalty I had great doctors who supported me and an MRI was ordered, immediatly after my MRI, I was told the news by the radiologist and the process was started to find someone who could save me. I had a skull base tumor in the worst possible place, a right petrous apex lesion and needed immediate surgery. After alot of research and meeting with Neurosurgeons I made some major decisions and had more surgery in September. The biopsy showed the tumor was a low grade chondrosarcoma and my surgeon who specializes in skull base surgery saved my life. He was able to remove all the tumor and reconstruct the damage it had caused. I now have many titanium plates, screws and mesh where their used to be be bone, it still amazes me. New complications post surgery include, deafness in right ear and tinnitus, dry eye and sinus, cognative memory problems, vertigo, depression, side of my head is caved in slightly, radiation and medication induces weight loss and anxiety. I'm currently on long term disability.
Still the pain remains . . .
In November through February 2010 I received Proton Radiation therapy in Loma Linda California to treat the effected site for residual cancer cells. Because of the rare type of tumor this was the only treatment available but not in Canada as these tumors like to regrow if not treated and chemo and convential radiation do not effect them. Ten years ago my condition was considered fatal. After having other scans, x-rays and ultrasounds we also found other tumors, probably benign enchondromas as well as a thyroid tumor meaning I have a sporatic rare genetic condition called Olliers disease, usually diagnoses in childhood but I never knew. Now diagnosis with trigenminal Neuralgia and we are just focusing on one thing at a time right now. Were not sure which came first the TN or the tumor but with all the destruction the tumor caused I feel it is too much of a coincidense but others may disagree. Either way, having TN saved my life.
The strength I get from being a mother is incredible and I thank god every day for sending me my wonderful children and friends to get me through all of this. My two kids and I are on are own and each day is a challenge, but a challenge I almost didn't have. Now each day is a blessing and I am so happy to have made it this far.
Today I still fight the pain, just like yesterday and tomorrow . . . I pray it gets easier, longer days are harder but most time the medication plan setup by the pain clinic at the BCCA is enough. I now receive constant monitoring for maligmant mutations. Some days I feel like I'm in my own little group here at LWTN and wish I had more time to post. This group has been an amazing source of support and I enjoy reading everyones posts and discussions . . . even if I don't reply. I had to make some more tough choices recently for the sake of my children and my own sanity, we are better off on our own but I feel so alone alot of the time. I know its for the best for them but it doesn't make it any easier. Being a busy newly single mom makes it hard to find the time to post but today I set aside time to do this and to tell you all I appricate your support and to keep posting entries for me to read and learn as we support each other, its an excellent outlet with people who really understand.
Thank you for taking the time to read my story, I hope to get to know you all better.
Hugs and prayers,