Well today has been very frustrating but I understand the surgeons view point. He’s skeptical about me having TN because he said if Tegretol didn’t help relieve my pain then I probably just have facial pain. Is this true? I was only on Tegretol for two weeks before my neurologist took me off of it because it was causing me to have severe headaches. I don’t agree with this surgeon. But he said he didn’t feel comfortable doing anything so he has referred me to a Dr Wentworth in Dallas. Here in Amarillo we are so limited. He said they can’t even do the MRI that I need in order to see the nerve. I am thankful he was honest. But another thing is he said he typically only sees TN in older patients. I am 35 and that’s one thing that scared him. I ended up in the ER last night due to excruciating pain that I couldn’t control at all. I was at the end of my rope and needed someone to do something. I am so sick of being laid up in bed due to all this pain and medications. I want “life” back into my life! It’s all very discouraging and depressing. So I’m praying the Dr in Dallas has the answers I am seeking. I am not for surgery but I don’t think I have a choice anymore. The pain is too much.
Sorry to read this Nicky. Red has been doing a recent site demographic on age onset of TN, your Dr is a bit out of date. It would seem average age of TN onset has taken a tumble on here. Hope you find some joy with the new Dr.
In our demographic study of 1726 facial pain patients, the median age for first emergence of pain was 41 years old, and ~21% of our patients were age 30 or younger. Half of all patients first have this pain between the ages of 32 and 49. 80% of our members are female. Those are all new numbers to the medical profession.Feel free to refer your doctor(s) to the Face Pain Info tab on our menus.
A positive response to Tegretol can be considered a confirmation of classic TN. And it's common for that response to occur within a few days. But it's not the only way to diagnose the disorder. Nor is Tegretol the only medication that works. We have a much longer list and commentary on medication treatment for TN and facial neuralgia pain in the cluster of articles directly under the "Face Pain Info" tab on our menus. Suggest you print out the article on medical management of TN and take it with you to your appointment in Dallas.
I am very surprised by your doctor's claim concerning the MRI procedure. Although not all MRI centers can do a FIESTA thin-slice (0.66 mm resolution) MRI procedure, surely one or more should be able to in any city of over 100,000 people.
I definitely concur that you need better trained help on your facial pain. Do let us know how your appointment with Dr. Wentworth in Dallas comes out.
Hi Nikki, I was 39, and tegretal didnt work for me eather. I have seem 4 Neuro's until I found one that understood TN and all the medication that can help. Travil if you have to, but finding the right doctor is most important. Life will come back in your life, just hang in there and keep talking to us.
I believe the doctor is way off, one of the reasons being people go a long time before anyone tells them they have T/N. Myself kept going to doctors years with tooth pain sinus prblems and the like. Finally one doctor says I believe you have T/N, and I would like to start you you on a medication program to see if we can get this under control. I am not out of the woods, but the pain has been a lot better.
Hi Nikki, Glad you are seeing another doctor. Sounds like you need a second opinion. Make sure you go with a list of questions and most importantly find out his experience. I traveled out of state to a nuerosurgeon with experience in the MVD surgery. I had the MVD in May 2009 and am pain free. They might even get you on meds that will help with the pain.
Good luck
Connie
Hi Nikki , the fact is that you have excruciating pain. If this doctor does not help you, go to another . It is so common amongst the members to go searching for the right doctor.
Best wishes and blessing,
Seow.
Oh Nikki!! I'm so sorry ... I am glad he was honest but you need to be your own advocate and find answers. I am only 28 and there was no compression when I went in for surgery on Jan. 28th. My surgeon has no answers to why I have/had facial pain — but he manipulated my nerve and apparently that often stops the pain. It's been over 8 weeks and I'm Tegretol free. I have 50mg left of Lyrica and by the end of the week I'll be drug, so go figure. I have pretty atypical facial pain too ... so my suggestion is to go to the new Dr. and keep researching and finding answers. Again, I'm so sorry but we're here for you!! HUGS!