Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
Okay ~ I have posted many times on the support site and absolutely love the responses. Maybe I am just going through a rough week or something but I really have a lot on my mind.
I have not been to work since Feb 2011 because of the pains that I have been experiencing. I was officially diagnosed with TN in March 2011. I have been on Carbamzepine since then along with Vicadin. I got really frustrated with the Oral Surgeon that diagnosed me so I went to my PCP and got a referral to see a Neurologist (saw him on April 19th). That was a great appointment and the doctor was reassuring with me. In the meantime, I have been appealing with my Short Term Disability because they denied my initial claim. Since they denied my claim, the company that I worked for has "severed" our relationship (meaning they fired me). Like I really need that in this point in my life ~ times are tough. However, I am still appealing with STD to get it overturned.
I had an MRI on Tues (May 3rd) ~ the Neurologist nurse called me that afternoon with results. She said that it came back "negative" for cancer, leisons and MS. GREAT!!!! Where do we go from here? Why am I experiencing this pain??? Her response was that there is no reason why you should not return to work and no explanation why you are having those pains. I was shocked!!! Are you fricking kidding me?? I just sat there and cried on the phone because I had no idea what to say then I asked her so "are you saying I do not have TN???" she said YES ~ you do and we will continue to treat you and there is no reason why you are not able to drive and continue with your everyday life. Really??? I am so confused right now because I sit here every morning and read through the post on this support site and MAJORITY of people are not able to work or drive. I am experiencing what most of you are experiencing and I am just confused. My triggers are talking, eating and brushing my teeth. I have had an attack driving to pick up my daughter from school. I am terrified to leave my home because I do not want to experience an attack driving or in public. The nurse stated that I do NOT want MVD surgery and that I would be better off with Gamma Knife because it was outpatient surgery with less recovery time. Is that true?? I was left really dazed and confused after talking to her.
Right now ~ financially times are really tough in my household right now and I honestly do not know what to do. Do I start looking for a new job and suffer through this and risk getting fired?? Who will hire someone that is in constant pain or calls out?? Right now ~ we don't have the extra $$$ to get copies of all my medical documentation in order to file Social Security Disability and when I was speaking with the Disability Group for assistance they said they are only allowed an allowance of $15 per record from each office however some of the doctors offices were charging $25 and they were not approved to do that. Well ~ we don't even have the extra $$$ to pay for the difference. So that process was shattered before me even before it got started. I have been online searching on how I could do this on my own with Social Security and everything directs you to a different link. So where do we go from here?
On a positive note: I have been in contact with a couple of members that live in the same state not to far and working on setting up a local support group to meet once a month at a park for people who suffer from TN and hopefully come up with a game plan to raise awareness for this nasty mean disorder! Any suggestions for this group is extremely helpful as well.
Thank you for taking the time to read my frustration and my venting ~ it means alot to me with the support this site has offered.
I have not been to work since Feb 2011 because of the pains that I have been experiencing. I was officially diagnosed with TN in March 2011. I have been on Carbamzepine since then along with Vicadin. I got really frustrated with the Oral Surgeon that diagnosed me so I went to my PCP and got a referral to see a Neurologist (saw him on April 19th). That was a great appointment and the doctor was reassuring with me. In the meantime, I have been appealing with my Short Term Disability because they denied my initial claim. Since they denied my claim, the company that I worked for has "severed" our relationship (meaning they fired me). Like I really need that in this point in my life ~ times are tough. However, I am still appealing with STD to get it overturned.
I had an MRI on Tues (May 3rd) ~ the Neurologist nurse called me that afternoon with results. She said that it came back "negative" for cancer, leisons and MS. GREAT!!!! Where do we go from here? Why am I experiencing this pain??? Her response was that there is no reason why you should not return to work and no explanation why you are having those pains. I was shocked!!! Are you fricking kidding me?? I just sat there and cried on the phone because I had no idea what to say then I asked her so "are you saying I do not have TN???" she said YES ~ you do and we will continue to treat you and there is no reason why you are not able to drive and continue with your everyday life. Really??? I am so confused right now because I sit here every morning and read through the post on this support site and MAJORITY of people are not able to work or drive. I am experiencing what most of you are experiencing and I am just confused. My triggers are talking, eating and brushing my teeth. I have had an attack driving to pick up my daughter from school. I am terrified to leave my home because I do not want to experience an attack driving or in public. The nurse stated that I do NOT want MVD surgery and that I would be better off with Gamma Knife because it was outpatient surgery with less recovery time. Is that true?? I was left really dazed and confused after talking to her.
Right now ~ financially times are really tough in my household right now and I honestly do not know what to do. Do I start looking for a new job and suffer through this and risk getting fired?? Who will hire someone that is in constant pain or calls out?? Right now ~ we don't have the extra $$$ to get copies of all my medical documentation in order to file Social Security Disability and when I was speaking with the Disability Group for assistance they said they are only allowed an allowance of $15 per record from each office however some of the doctors offices were charging $25 and they were not approved to do that. Well ~ we don't even have the extra $$$ to pay for the difference. So that process was shattered before me even before it got started. I have been online searching on how I could do this on my own with Social Security and everything directs you to a different link. So where do we go from here?
On a positive note: I have been in contact with a couple of members that live in the same state not to far and working on setting up a local support group to meet once a month at a park for people who suffer from TN and hopefully come up with a game plan to raise awareness for this nasty mean disorder! Any suggestions for this group is extremely helpful as well.
Thank you for taking the time to read my frustration and my venting ~ it means alot to me with the support this site has offered.
My husband had his MVD surgery May 26, 2010 and has NEVER regretted that decision for one second. He is painfree at this point - it took him a little while to get there - some are painfree the moment they wake up, others it takes a while, but is MUCH better after surgery. Fewer attacks, less intense, very manageable without meds. Please don't settle - look for help!
I suspect that your disability was denied because they have no idea what you have and as for your job, they only have to "hold" your job for 12 weeks according to the FMLA laws. Sorry.
Hugs & Prayers for you and your family.
I'd think carefully about the implications of gamma knife surgery - short term benefits, but at a huge cost.