Atypical Bilateral Trigeminal Neuralgia And There Is Nothing More They Can Do

I got what the Nero said was Atypical Trigeminal Neuralgia on the left side in 2008. They did surgery in 2009 and discovered that I had 2 arteries that swelled and wrapped the nerve and damaged it.  Ok, So, I'll be on meds forever but the pain is better.  But my question is, why did they not question why the arteries swell to cause this in the first place.  So, a few months later the right side went but not with the same type of pain.  Bad as it was but not the same.  The pains have been so bad that the hospital has had to numb my whole brain.  3 years later I've had enough.  It's gotten worse and the meds are not working as they should.  My nero dr sends me to the nero surgeon yesterday only for me to be told that he can't do anything to help me.  WHAT?  I am not a candidate for any surgeries because what I was told was typical on the right side ended up atypical and because  the left side surgery didn't take the pain away, it wouldn't for the right side either and it would be to risky to do the needle one because I might have things misplaced and things could go wrong.  I am only 38.  I have watched 3 kids graduate while I was in pain and I'll have to watch the other 3 graduate in pain and begging for someone to put me out of my misery.  I go to Dr. Jennetta's office in Pittsburgh but he's no longer in office.  Any idea's on who I could go to to figure this out?  
kellybrad kellybrad
4 Responses May 18, 2012

I'm so sorry... I get told horrible things by drs all the time .. Don't stop searching and looking for the doctor who WILL treat you, that's what I'm doing and I won't give up! We know our bodies better than they do.. Good luck my friend

Is there anything you would do in retrospect? I started having ATN 2 months ago on the left side of my face. I can feel break through pain on my right side gradually getting worse. I am only 23 years old. I haven't done any surgery's yet. Although I think Gamma Knife might be a good idea and a good first option. I am on 2400mg of Neurotin/Gabapentin, but I keep raising it. My work just fired me, because I can't be reliable. My doctor has (so far) refused to put me back on disability which my company offers.
I have to say, I couldn't IMAGINE going through this without my narcotics. A good rule of thumb I have found for narcotics is if you are not in ANY pain, you are taking to much. If I still have some, I feel pretty level headed. Albeit, it is not as easy to concentrate. Since my pain is worse at night, I would never take it at work. I would take them when I got home.

don't be afraid of narcotic pain relief use it with respect and you can have some of your life back good luck.

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