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Gamma Knife Radiosurgery

Posted , 4 users are following.

laurel3865
laurel3865

Hi,

I've suffered TN1 and TN2 for nearly 12 years. I have tried all drugs to help the pain. Initinally they all helped with certain side effects then they don't help at all with time. I'm currently on Trileptal, which was a great drug with hardly no side effect but after 7 months it stopped working. After many of these drugs the main side effect I notice is loss of short term memory and speech impairment.  Does any of you experience this?

I have been researching on Gamma Knife Radiosurgery and really want to do this. Has any of you have this done and what is the outcome? Really appreciate any input. This horrible condition is robbing my joy and my life. I use to be a very happy person.

0 likes, 14 replies

14 Replies

  • sharon33606
    sharon33606 laurel3865

    Posted

    Hi Laura can't help on this procedure just so feel for you. I am still numb down my left side after they inserted glycerol in February. Sometimes painful too. I am on oxcarbamezapine and lam origins twice a day and definitely helps. Must say after the procedure TN has not bothered me just other pain and they have said the TN will return as the procedure is a temporary fix. ??

    i know not easy but do try and be positive if you can, such a debilating condition and so many people suffering. Best Wishes Sharon.

    • laurel3865
      laurel3865 sharon33606

      Posted

      Hi Sharon,

      How many time have you had the glycerol injection and how long does each injection last? Does the procedur hurt? I see that you are still on medication even after the glycerol injection. With the numbness on your face are you able to taste food?  Sorry for so many questions.

    • sharon33606
      sharon33606 laurel3865

      Posted

      Hi Laurel only have had the glycerol once and it was done under general anaesethic and 3 days in hospital. Lots of pain killers required.

      Sharon

  • patricia64722
    patricia64722 laurel3865

    Posted

    Hi, I had TN for 16 years. April 2013 I had a balloon compression. I am pain free and have my life back at last. I can even go under the shower and let water run down my face (HEAVEN) I still can`t believe it. I hope this is of help to you.

    Regards Patricia.

    • laurel3865
      laurel3865 patricia64722

      Posted

      Hi Patricia,

      I don't know much about the balloon compresison procedure. Is that outpatient or inpatient and does it hurt? How long to recover before going back to work? Is this procedure the same as Microvascular Decompression (MVD)?

  • Clunky
    Clunky laurel3865

    Posted

    Hi, 

    really interesting to hear other options for treatment. For me I have only been put on the medicine route as yet. I am unable to tell if helping as my TN 2 is constant and variable. 

    I would like to ask another question, do you all work? Also if you do have your employers been sympathetic to sickness ?

    i ask because I have been off for 2 weeks with exhaustion from the constant pain over   The last 9 months. I had a meeting with my employers today to ask to drop my hours down as struggling with the pace. They were cold and unsympathetic to my plight and are now wanting proof from my GP. Has anyone experienced this?

     

    • laurel3865
      laurel3865 Clunky

      Posted

      Hi Clunky,

      I have been working full time with TN. I never told anyone until today because I had a really bad week where the pain was non-stop. I am a very happy person but I have not smile nor talk much lately and people was wondering why. I am going to see my neurologist tomorrow and will request for surgery. At this point in my life I don't care what kind of surgery they do I just want it. I don't want to live with this kind of pain. No one should.

  • sharon33606
    sharon33606 laurel3865

    Posted

    Hi Laurel,

    yes do work albeit only 20 hours a week Mon - Thurs.

    my boss has been very sympathetic however have not taken time off except for appointments and procedures.

    i also suffer with a bad tummy and have just been diagnosed with bile malabsorption. So probably need to get on another. Forum for thatsad

    BTW I am 61 yrs old x

    • laurel3865
      laurel3865 sharon33606

      Posted

      I don't know what malabsorption is but I'm sure it's not anything good. I hope you will find peace and comfort soon.
  • sharon33606
    sharon33606 laurel3865

    Posted

    Thanks Laurel.

    have only had the glycerol once and don't think I would have it again - too many issues with it but no TN.

    they say it lasts for 1 - 2 years but can be less. It kills the trigeminal nerve which then comes back to life so only a temporary fix.

    Sharon

  • patricia64722
    patricia64722 laurel3865

    Posted

    Hi Laurel,

    They treat you as an outpatient. They knock you out so you don`t know anything. No pain when I came round. Back to normal. I could have done with this proceedure years ago but of course they didn`t do it then.

    Regards Patricia.

     

  • patricia64722
    patricia64722 laurel3865

    Posted

    Hi Laurel,

    I forgot to mention it was for a balloon compresion. It has worked for me.

    Thanks

  • sharon33606
    sharon33606 laurel3865

    Posted

    Hi Laurel forgot to mention I had the glycerol under GA and was in the neurological ward for 3days .
  • sharon33606
    sharon33606 laurel3865

    Posted

    Hi! Laurel, had a consultation with my neurologist the other day and he seemed surprised that I am still suffering with repercussions after the glycerol procedure. He has re-confirmed that it is a temporary fix and the TN will return. He has also suggested MVD, will see me in 4 months to review or sooner if things deteriorate. I have checked out MVD and yes invasive but a true cure. I will need to consider depending what my situation is when the nerve comes back to life. I was told in the hospital that I have atypical TN so may not be as straight forward as it could be a number of vessels putting pressure on the TN nerve. Best wishes Sharon
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