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Microvascular Decompression for TN

Posted , 8 users are following.

nikola25969
nikola25969

Hi, I had my surgery 1 week ago today, and I can safely say I have had no TN symptoms since.  However, the surgery itself wasnt the most pleasant I have even had and the recovery I have been told is 6-8 weeks.

Straight after surgery I had the worse headache I have ever had, but was told this was normal due to the leakage of CF and my brain becoming mushy (consultants words) and needing to sort itself out.  After a 4 day stay in hospital I am home, walking around although slowly as still abit light headed and dizzy. Only taking paracetamol and codeine for pain.  Surgery was approx 6 hours and have only lost a small amount of my hair.

So if I was asked again would I have the surgery, I might hesitate for a while and didnt like the immediate feeling after surgery, but to not have to worry about when the next pain was going to come or for how long, then the answer would definately be YES. lol

1 like, 11 replies

11 Replies

  • alan21271
    alan21271 nikola25969

    Posted

    Hello,

    How did you manage to weigh up the risks for such a procedure. I assume your TN was very bad? Do you mind me asking where this was carried out. 

     

    • nikola25969
      nikola25969 alan21271

      Posted

      Firstly, I was fed up of being on medication all the time and paying out a fortune for them.  I throughly researched the operation before hand and decided it was worth giving it a go. I have had TN for about 4 years now and was misdiagnosed to start with....

      I had the surgery done at The Royal London Hospital by Mr Wardley. 

      Today not feeling quite as good as a localised infection, but other than than feeling great.

  • mufti04211
    mufti04211 nikola25969

    Posted

    I am going for the surgery too. You encouraged me. Thanks for sharing your experiences.

    I was told that it is less than 2% life threat. I agreed even if 90% life threatening. I just want to get rid of this TN pain, to enjoy the taste of food instead of swallowing, to drink cold water, to live one day without pain or worry about the next seizure, to taste lemon, to feel normal again which i have already forgotten.

    I have TN for two years now. I think it is from hell. I wonder how people tolerate it 15 years.

    Thanks, please keep us informed about your TN.

    • nikola25969
      nikola25969 mufti04211

      Posted

      I am glad that I have encouragd you. It is a horid illness and I had it for approx 4 years and that was definately long enough!!!  I have gone slightly deaf in my left ear, but told this will go back to normal eventually. Got a localised infection at the moment so face and neck are sore but dorctors dont think its anything to do with the TN, just my bad luck.  Im feeling drained at the moment but that might be because I'm doing too much!!!

      Good luck with your surgery, keep me updated xx

    • mufti04211
      mufti04211 nikola25969

      Posted

      Dear sir

      I have done operation yesterday. TN pain is zero. Only post operation pain. I wonder why to tolerate TN but not the operation. All nurses offered me pain killer but I usually refused as I experienced the horrible TN pain. Thanks for the encouragement. I hope you will live long and pain free life.

  • marielouise1966
    marielouise1966 nikola25969

    Posted

    Hi Nikola,

    I bet you can't wait til it's all over.  I have my surgery at Kings on the 21st Aug, my May date was cancelled - so annoyed as I was within 2 weeks of having it and really excited.  I've told work 3-4 weeks off so your 6-8 weeks has frightened me a little!  You mention hair loss - can you explain more as I'm expecting about a third of my head to be shaved!!  Let's hope not.  I've had TN for 10 years and have had about a gut full of it, suffering from memory loss etc with too many anti convulsants and I'd really like to see a dentist! .  In fact it's probably the first thing I'll do.  Not sure what I'll do if it doesn't work.  Marie x

    • nikola25969
      nikola25969 marielouise1966

      Posted

      Hi Marie,

      no need to worry too much about hair loss, it is literally a small strip of hair behind your ear hope this picture helps. I have only been told 6-8 weeks due to my job, so you might only be off 3-4.  Do expect a sore/tender neck however, but it soon wears off after about a week, I am now moving my head a lot better although not wise to bend over too far.

      i was told success rate is 95% so don't worry. Good luck let me know how you get on.

      Nikola x

  • bigalan
    bigalan nikola25969

    Posted

    i too had surgery.had to have this done because i could not stand the pain anymore.i agree that after waking up after surgery,that its not a pleasent experience.but weighing all things up i would not hesitate to have my other side of my face done if it comes to it,as i was on the verge of killing myself.so there is help out there.ps i had a wonderful surgeon at the leeds teaching hospital.so if your going to have surgery soon think hopefully of the goodtimes ahead.
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