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How long after you were diagnosed did you have surgery?

Posted , 7 users are following.

ashley86320
ashley86320

I am a 29 yr old female who got shingles on my left side of the face after i joined the army from getting my wisdom teeth out. As soon as the shingles were over i had what they called post theraputic nueralgia. That was in 2014, and in january i was diagnosed with TN. My face is a wreck, there are day where i can eat and days were i can't. There are days where i get shocks to my eyes, cheeks and up my nose to forehead and days where it goes along my jaw. I can not be in the Army and be in this much pain. I need help, i see the surgeon tomorrow and am hoping he can end this pain. I cannot be taking 5000mg of meds a day and still be in so much pain.

2 likes, 8 replies

8 Replies

  • lee12629
    lee12629 ashley86320

    Posted

    Oh i feel so bad for you. Please look up gamma knife for tn. Its non invasive no cutting involved and can dramatically help people with tn. Xx
  • carol97610
    carol97610 ashley86320

    Posted

    Hi it was about 2 weeks .. mabe it was there earlier but as I didn't have any feeling there I don't no.. I feel your pain as I'm the same.. I have 25mls every hour through a patch.. I take 450 lyciria... 1600 MLS of ibrufen most days I'm sleeping x

  • army183
    army183 ashley86320

    Posted

    Hi Ashley

    Sorry to hear your circumstances. For information it was about 3 years after my diagnosis and after my breakthroughs and less effective drug control. Then I had surgery (MVD) about 2 months ago. Never looked back since then

    Good luck

    Big D

  • marlene36342
    marlene36342 ashley86320

    Posted

    Hi Ashley - I was diagnosed in May 2006 with TN.  After seeing many doctors, specialists, surgeons, I has MVD surgery in November 2009.  Unfortunately, the surgery was not successful but don't be discouraged about my story.  I have had the opportunity to speak with 3 people who had the surgery and now are living with pain-free days.  The right side of my face and jaw and also upper lip are not free from any pain.  The pain is constant - never goes away.  Before I had my surgery, I had many shocks to my lower jaw.  Because of the surgery, the shocks are now gone.  I do take a pain med every day in order to have some quality of life.  Unfortunately, cannot work but as I said this is my story - so please don't be alarmed.  Wishing you the best with your surgery appointment.  I would really like to know he if recommends surgery for you.  So sorry for your pain - it sure has changed my life.

    • army183
      army183 marlene36342

      Posted

      Hi Marlene

      Did you have MVD because your MRI and other scans confirmed that you had vascular compression of your Trigeminal nerve? Or maybe they found that when they did the surgery? Or perhaps they didn't find the compression?

      I think the compression status of TN type 1 cases is important in determining the possible outcome after surgery

      Thanks

      Big D

    • marlene36342
      marlene36342 army183

      Posted

      Hi Army - I did have an MRI but all was negative.  I was told by a pain specialist that a MRI would only pick up a mass i.e. tumor.  When I did have the MVD surgery, the surgeon reported that all my blood vessels in my lower right jaw were all comingled - all knotted together so had to straighten them out.  Also I had a blood vessel that was growing.  It grew up to my trigeminal nerve, wrapped itself around it and was chocking off the nerve.  If I refused to have the surgery, pain levels would continue to become much worse.  I am not familiar at all with the TN1 and TN2 diagnosis.  This was not ever mentioned to me.  Please get back to me if you have any further questions. Also, I cannok work - but I do know that this surgery has been successful.  So sorry for what you have to deal with.
  • marlene36342
    marlene36342 ashley86320

    Posted

    Hi Ashley - I was diagnosed in May 2006 with TN and in Nov 2009 I had micro vascular decompression surgery (Brain surgery).  Unfortunately the surgery was not a success for me.  I have had the opportunity to speak with 3 different people who had the surgery and are now living a pain-free life.  I can relate so much with you about eating.  Some days are ok and then cannot chew at all.  This is a trigger for me.  Also, have experienced many electrical shocks that would bring tears to my eyes.  If you have any more concerns/questions, please do not hesitate to contact me.  Wishing you the very best.
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