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After surgery pain increasing

Posted , 6 users are following.

marlene36342
marlene36342

I have had trigeminal neuralgia since 2006 and had the MVD surgery in 2009.  The surgery was not successful and, therefore, had to leave my employment.  Does anyone find that after 3 to 4 years of the surgery,your pain is increasing.  I have been experiencing this and was wondering if this is normal.  I have been on many different meds with no success.  Than you for reading.

2 likes, 14 replies

14 Replies

  • Jewell
    Jewell marlene36342

    Posted

    My neurologist says in some patients scar tissue forms and causes pain. Very sorry you are going through this. I'm scheduled for the surgery in June.

    • marlene36342
      marlene36342 Jewell

      Posted

      Thank you so much for your reply.  It's quite interesting to know that your neurologist mentioned scar tissue.  When I had my surgery I was told by the surgeon that my brain stem was badly bruised and with scar tissue.  Very strange because this was my first surgery.  He could offer me no explanation for this.  Wishing you the very best on surgery day with pain free days to follow.

       

  • floritha95196
    floritha95196 marlene36342

    Posted

    I was just diagnosed with TN I am taking carbamazepine 2oomg 3 to 4 times a day it is working just fine .I had three unnecessary root canals before I was diagnosed so this med was a 'life saver. I don't want to be on medication forever so hearing the surgerydidn't work is depressing I want to go back to work at least in a month I do law enforcement work . can't be on no disability because

    • Rscott2525
      Rscott2525 floritha95196

      Posted

      I have been fight with TN from 2004 full blown head and face pain.I was a test rat at UTSA for many years had radio frq done 3 times lots of Meds.

      then in 2007 i think i got gamma knife done .this helped till 2014 and started having pain .was never taken off all Meds .

      I was able to have the nerve decompressed 8 weeks ago it is great .

      i had scar tissue on aurty and nerve it took the surgeon 2.5 hours to fix me 

      but he did a great job ;off all Meds now and playing tennis and sports again.

      I am 63 and like being med free

    • marlene36342
      marlene36342 Rscott2525

      Posted

      Congulations Rscott - I am so happy for you.  I was diagnosed with TN in 2006 and had MVD in 2009.  The surgery was unsuccessful, therefore, had to leave my employment.  Fortunately, I was approved for disability.  Many days but not all are filled with trying to alleviate my pain levels.  As far as meds are concerned, I believe this will be my way of life for many years to come.  I am always so glad when I hear that surgery was a success for them.  Again, congratulations.
    • marlene36342
      marlene36342 floritha95196

      Posted

      First of all, so sorry for your pain.  Before I was diagnosed, I went to many dental specialists believing that my teeth were the cause of the pain.  This was not so.  I want you to know that even though my surgery was not successful, this is no indication yours will not be.  I have had the opportunity to speak with three people who have had the MVD surgery and are now living pain-free lives.  Please don't get depressed because of my outcome - think of the ones who had success.  Wishing you the very best.

    • wanganui
      wanganui Rscott2525

      Posted

      Great news for you...no pain..yay! Did you have type 1 or type 2? How was the nerve decompressed? Thanks! 
  • joe010117
    joe010117 marlene36342

    Posted

    Im sorry i cant be of any help but my girlfriend had TN surgery a little over a year ago and her pain is back and increasing her pain. I've never even heard of this condition before... So have been trying to do major research on the side looking for home remedies or small solutions even if for ten minutes, please if you have any info that could help or we can try that would be great!

    • marlene36342
      marlene36342 joe010117

      Posted

      Hi Joe - I just read your message.  Currently on flight but in a day or two will get back to you - I have so much info - and also ask any questions.  I was diagnosed in 2006 and had brain surgery in 2009 - talk very soon 
    • marlene36342
      marlene36342 joe010117

      Posted

      Hi arrived - safely at our vacation destination.  Give me a couple of days to unwind here and like I said I have some much info to share - at least here in Canada - a big hello to your girfriend and please tell her I will help with advicd and infor as much as I can.  It is an absolutely aun bearable condition taht one has to deal with this.  Take much care.
    • marlene36342
      marlene36342 joe010117

      Posted

      Hi Joe- as promised - here I am.  My 2 sisters have gone out the the evening so I am having good quiet time - pain is to such a level all day - could not even think of going out.  Here I go with some of my history.  Just going to ramble on here, and hope I do make sense.  I think I told you I was diagnosed in May 2006 and had micro vascular decompression surgery (brain surgery) in November 2009.  UUnfortunately, the surgery was unsuccesful.  Sisters just arrived back -will get back to you in a day with more info - take good care and a big hello to your girlfriend.
    • marlene36342
      marlene36342 joe010117

      Posted

      Hi Joe - will be back home a week from Sunday and then I will certainly get in contact with you.  The internet connection here in st maaeteen goes dow quite a bit - very unpredictable.  I hope you don't think I am giving you the runaround because that is not the case.  Wishing you and your girlfriend many good days.  

    • marlene36342
      marlene36342 joe010117

      Posted

      Hi Joe - I am home and did not forget about you and your girlfriend.  While I was away I did post a little info to you.  I can try to help and explain about this horrible disease.  I can tell you my whole story from the very beginning or I can answer any pinpoint questions.  Either way I will be very happy to do so.  Just as an added note here, before I had brain surgery, I seen five different dentists to rule out dental issues, one visit to a neurologist, two appointments with brain surgeons, and finally 5 different pain specialists along with regular appointments with my family physician.  By making and keeping all these appointments, TN was a definate diagnosis for me.  I look forward to helping your girlfriend as much as possible.  Wishing you and your girlfriend many good days.  Looking forward to getting a post from you!
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