TN pain type 1 after meningioma removed

Hi everyone,

I've been off the discussions for several months...in January 2014 I started with non-stop ATN that landed me in surgery in April '14, to remove the meningioma. I was nearly pain free for nearly 5 months but now,in the past 3 weeks horrible pain is back but different. I no longer have all 3 nerve branches hurting, but the 3rd one (jaw, mouth, teeth, ear). The pain is bad enough to prevent me from speaking and eating though speaking is the worse. I discovered, by intense unrelenting pain, that when I lay down even partially the pain becomes unbearable. I can't get a good response from the neurosurgeon as to what could cause the pain since the removal of the meningioma was successful and there appears to be no compression on the trigeminal nerve.

I researched for hours online and found several sites speaking of TN pain from position, or agitated nerves. I have lost hope or living a normal life and the nightmare of the return of this pain is quite the difficult thing to cope with (not doing so great).

My question, has anyone found solid information regarding recovering from brain surgery to cause TN; or position only pain...for my entire recovery time I slept on the side of the surgery/incision site to relieve heart palpitations, (which worked and now the palpitations resolved)? I'm so confused and frustrated (as I know most of us are) but actively researching trying to find a facility/doctor who recognizes different causes of TN and can piece some of the puzzle together.

Prudence,

I'm so sorry that you are having so much pain...ATN is soo horrible...I was told I had Atypical Odontalgia two years ago.I have pain in my mouth, jaw, chin, ear and my canine tooth..I took Amitriptyline for about 8 or 9 months and the pain went away. I recently got a bad cold and my pain started up again..Tonight it is almost unbearable pain in my tooth...I cant understand why the pain is so bad tonight and hardly noticeble other nights..It is very difficult to live with..I just want to get through the Holidays..This pain had changed me and my life..We can only hope someone finds new medications, surgery, or a cure for this..I hope you find someone who can help you get your pain under control soon...

Stephanie

The biggest researcher here is the moderator… RED

Send him your question… He will probably have had come across this in his years of TN research!!!

How do I send a question to RED?



Kc Dancer Kc said:

The biggest researcher here is the moderator.... RED

Send him your question..... He will probably have had come across this in his years of TN research!!!