Secondary or Symptomatic ATN - Trigeminal Neuralgia Saved My Life!

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,

Tracy

Hi Tracy,

You've had quite a journey in diagnosis and treatment. But your story illustrates a broad principle that I believe will one day be recognized as best practice for facial pain that appears to have a neurological character: high resolution MRI performed both with and without contrast agent should be considered mandatory to detect or eliminate conditions such as yours.

In the 16+ years that I have supported facial pain patients with on-line research and referrals, I have seen patient reports of a wide variety of structural and tumor-related issues resulting in TN as a form of symptomatic pain. These have included schwanoma, fluid-filled cysts, calcium deposits, carcinoma, benign (slow-growing) tumor, and arterio-veinous malformations (AVM). Unfortunately in the socialized medical care systems of Canada and the UK, access to specialists trained in the assessment of such conditions can be so restricted that patients literally DIE of these relatively rare problems before they can be seen by somebody who has enough training to be able to diagnose them accurately.

I congratulate you on your successful outcomes thus far, and wish you well on the further journey.

Go in Peace and Power

Red Lawhern, Ph.D.

Master Information Miner

http://www.lawhern.org

"Giving Something Back"

I'm glad you survived Tracy. My TN is secondary to lupus and M.S.

Blessings, Sheila

Hi Tracy,

that's quite a lot you have gone through, and you still have so much to cope with. Do you ever feel like a magnet for rare diseases? I do.

I too have hearing loss, tinnitus and vertigo, mine started out of the blue way back in 1981, just woke up with it one day. It took ages to get a diagnosis, 13 years, before that my doctors assumed I was faking it. Then in 2000 I was diagnosed with a hereditary neuropathy along with my son. I suspect that my inner ear problems are related to that. Over the past few years TN has flared up. I think I may have had odd bouts going back to childhood, but what started a few years ago has been more persistent. Sometimes it's all too much to take in. But it's there so I have to get on with it.

Have you had any treatment for your ear problems? Most things I've tried, medications and surgery have been unsuccesful, (I have a large dent in the mastoid bone, behind my ear, after endolymphatic shunt surgery) .

Keep well, keep positive, and join in when you can. I don't know how I would have coped without the internet and these rare disease groups. I would have coped (i think), but isolation would have been the order of the day.

jon

Hi Red,

Thanks for the reply . . . Its unfortunate some people go undiagnosed and pass on. I wasen't even aware I only had months left if I didn't have the surgery and thank god the TN pain kept me advocating my case and saved my life.

Take care Red,

Tracy

Richard A. "Red" Lawhern said:

Hi Tracy,

You've had quite a journey in diagnosis and treatment. But your story illustrates a broad principle that I believe will one day be recognized as best practice for facial pain that appears to have a neurological character: high resolution MRI performed both with and without contrast agent should be considered mandatory to detect or eliminate conditions such as yours.

In the 16+ years that I have supported facial pain patients with on-line research and referrals, I have seen patient reports of a wide variety of structural and tumor-related issues resulting in TN as a form of symptomatic pain. These have included schwanoma, fluid-filled cysts, calcium deposits, carcinoma, benign (slow-growing) tumor, and arterio-veinous malformations (AVM). Unfortunately in the socialized medical care systems of Canada and the UK, access to specialists trained in the assessment of such conditions can be so restricted that patients literally DIE of these relatively rare problems before they can be seen by somebody who has enough training to be able to diagnose them accurately.

I congratulate you on your successful outcomes thus far, and wish you well on the further journey.

Go in Peace and Power

Red Lawhern, Ph.D.

Master Information Miner

http://www.lawhern.org

"Giving Something Back"

Hi Sheila,

I didn't know yours was secondary too, I read 2% or MS patients have TN so you are quite rare also. My appt went well today, I need to get a CT scan so they can look closer at the other tumors, they appear less active but are more painful. The doctor was great and is going to be talking to the tumour board head honcho himself and come to PG to see me for a follow up next month. Its to bad I cannot fly with the ICP and they are so far away.

Thanks for your support and sharing your cheerful spirit!

Tracy 1.0

Sheila said:

I'm glad you survived Tracy. My TN is secondary to lupus and M.S.

Blessings, Sheila

Hi Jon,

Thanks for the reply, I did try sound therapy for a while for the tinnitus but it only worked for minutes afterward and drove everyone else nuts while I did it :) not really worth it for a moments peace. I do feel like a rare disease magnet, I bet you do too. I didn't know neuropathic pain could be hereditary. I hope you are doing well and I'm glad you joined our group.

Tracy

Jon Leonard said:

Hi Tracy,

that's quite a lot you have gone through, and you still have so much to cope with. Do you ever feel like a magnet for rare diseases? I do.

I too have hearing loss, tinnitus and vertigo, mine started out of the blue way back in 1981, just woke up with it one day. It took ages to get a diagnosis, 13 years, before that my doctors assumed I was faking it. Then in 2000 I was diagnosed with a hereditary neuropathy along with my son. I suspect that my inner ear problems are related to that. Over the past few years TN has flared up. I think I may have had odd bouts going back to childhood, but what started a few years ago has been more persistent. Sometimes it's all too much to take in. But it's there so I have to get on with it.

Have you had any treatment for your ear problems? Most things I've tried, medications and surgery have been unsuccesful, (I have a large dent in the mastoid bone, behind my ear, after endolymphatic shunt surgery) .

Keep well, keep positive, and join in when you can. I don't know how I would have coped without the internet and these rare disease groups. I would have coped (i think), but isolation would have been the order of the day.

jon