After 6 weeks of waiting, I am finally seeing a neurologist on Monday. What are the best questions to ask? I am currently taking 2700mg of Neurontin and 400mg of Tegretol. The frequency of the sharp pain has decreased but the constant tingling and searing pain on the left side of my face remains. Any suggestions are welcome.
First, make sure your neurologist is familiar with the condition. Most doctors, including many neurologists, are somewhere between barely and completely unfamiliar with the condition. Even the Neurology textbooks used today are borderline offensive in how they describe TN. My wife is lucky enough to have found a neurologist familiar with TN, but we haven't seen him in years, as he hit the wall with treatments to suggest. We're fortunate to have found a GP and a pain management doctor who both know a good amount about TN, but finding these doctors was no easy task.
I highly recommend you take 2hrs to watch Ask the Doctor Series with Ken Casey prior to your visit. It's probably the most informative 2hrs on TN we've experienced since my wife's diagnosis, and I found the link right on LivingWithTN in this thread: http://www.livingwithtn.org/video/ask-the-doctor-series-with-ken
Finally, GOOD LUCK with the appointment! It sounds like you have type 2, or atypical TN, but the sharp pain could be type 1. Do you know which type you have? Do you know when/how it began?
I see you have type 1 and 2 .
First visit - ask how many TN patients they serve---
Ask for lidocaine face patches, mouthwash, cream, anything that will work in your particular areas
The med took a toll on my IQ - I had TN symptoms for 1 year - was in remission - then went to Dr. Casey in Michigan and had my MVD. I watched that video and fell in love!
There is nobody that I know - who have done Thousands Of MVD's for decades!
You can email him and he will guide you in the right direction if you can't leave the state -- the MVD with no complications are 2 nights in the hospital - 2-3 weeks in bed
I have been in no pain, no meds, 2.5 years.
It is the gold standard - It has a higher percentage to help stop TN1 - but surveys say that ATN can be greatly reduced / and / or life is better after.... may take lower meds for life..... but takes the edge off. It is cranial surgery, not brain.
What you have to NOT do, is to have other procedures that damage nerve - like gamma - then go back later and try and have MVD --- lowers the success rates down if you do it that way.
Learn all you can - soak it up
Ask, read, learn, repeat!
You can also ask about a marijuana medical card - there are many anecdotes here - and many studies on line where it can reduce symptoms of Neuropathic PAIN
Keep Posting!
Thank you for your response. I have been diagnosed with TN1 & TN2. This all began for me in April when I had Lasik surgery on my left eye. It began with pain in my left eye that shot up to the top of my skull and drooping. I returned to the Lasik doctor several times who had no explanation and eventually sent me to my PC for a CT scan. I went to my PC and my eye doc and they suggested several treatments but nothing worked and the pain got much worse. I began to have shooting pain up thru my left eye to the top to my skull, from my left eye to my nose and down behind my left eye into my jaw. My PC finally sent me to urgent care one night after the pain was so bad I had vision changes and the urgent care doc said "you have TN". I saw my PC and he disagreed with the diagnosis but after several discussions and him consulting with an ER neurologist, he prescribed Tegretol. I'm having a difficult time with the side effects but it has helped with the frequency of the sharp attacks. The daily tingling and searing pain are still there but I'm hoping the neurologist can help.
dankoni said:
First, make sure your neurologist is familiar with the condition. Most doctors, including many neurologists, are somewhere between barely and completely unfamiliar with the condition. Even the Neurology textbooks used today are borderline offensive in how they describe TN. My wife is lucky enough to have found a neurologist familiar with TN, but we haven't seen him in years, as he hit the wall with treatments to suggest. We're fortunate to have found a GP and a pain management doctor who both know a good amount about TN, but finding these doctors was no easy task.
I highly recommend you take 2hrs to watch Ask the Doctor Series with Ken Casey prior to your visit. It's probably the most informative 2hrs on TN we've experienced since my wife's diagnosis, and I found the link right on LivingWithTN in this thread: http://www.livingwithtn.org/video/ask-the-doctor-series-with-ken
Finally, GOOD LUCK with the appointment! It sounds like you have type 2, or atypical TN, but the sharp pain could be type 1. Do you know which type you have? Do you know when/how it began?
Thank you for the information. I will contact the doctor you suggested and see what he has to say. I am not against going out of state if it will bring me relief. Congratulations on being pain and med free! That is my goal as well.
Kc Dancer Kc said:
I see you have type 1 and 2 .
First visit - ask how many TN patients they serve---
Ask for lidocaine face patches, mouthwash, cream, anything that will work in your particular areas
The med took a toll on my IQ - I had TN symptoms for 1 year - was in remission - then went to Dr. Casey in Michigan and had my MVD. I watched that video and fell in love!
There is nobody that I know - who have done Thousands Of MVD's for decades!
You can email him and he will guide you in the right direction if you can't leave the state -- the MVD with no complications are 2 nights in the hospital - 2-3 weeks in bed
I have been in no pain, no meds, 2.5 years.
It is the gold standard - It has a higher percentage to help stop TN1 - but surveys say that ATN can be greatly reduced / and / or life is better after.... may take lower meds for life..... but takes the edge off. It is cranial surgery, not brain.
What you have to NOT do, is to have other procedures that damage nerve - like gamma - then go back later and try and have MVD --- lowers the success rates down if you do it that way.
Learn all you can - soak it up
Ask, read, learn, repeat!
You can also ask about a marijuana medical card - there are many anecdotes here - and many studies on line where it can reduce symptoms of Neuropathic PAIN
Keep Posting!