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Posted , 5 users are following.

RachisCool
RachisCool

I've had TN for 1 yr and how do I get to have the op asap?

1 like, 13 replies

13 Replies

  • natalie87047
    natalie87047 RachisCool

    Posted

    Hey you need to go to a nuerosurgeon that treats facial pain and discuss your options.
    • RachisCool
      RachisCool natalie87047

      Posted

      it's just a matter of persuading my doctor to refer me and stop giving me ending tablet variations which as most know don't actually work. The op doesn't worry me what so ever if it cures it at least for10 years, it's a no brainer. Lol.
  • tony91887
    tony91887 RachisCool

    Posted

    Hi Rachel,

    My name is Tony, I a 50 year old male from USA.

    I was just diagnosed with TN about a month ago, but.

    Truthfully; I started to fill the TN symptoms for the very first time last year. At the time; I did not know what it was, I dismissed it as an eye strain problem, since I spend a lot of time in front of a computer. At that time;

    My pain lasted about 3 weeks, but. Eventually it went away! Now it returned about a month ago, and boy… It returned with a vengeance!

    My pain was so bad, I could not stand it, so I went to see a ophthalmologist, since I though it was related to my eyes, since my pain starts at the bottom of my eye traveling upwards to the middle of my skull at my left side. It feels like I am going to have my brains pulled through a tiny hole in my head using a string or something? Any how, the ophthalmologist concluded that it was not my eyes, and suggested I went to se my primary doctor. I did, and after a few tests and procedures, it was established that I haveTN.

    I just started seen a neurologist, a couple of weeks ago, and he has been quite helpful so far. He adjusted my intake dosage levels of Tegretol (Carbamazepine). I am currently taking 500 MG of it and it seems to be working about 90% of the time.  Every now and then , I do get occasional pain episodes. But. It is mostly under control, with the exception of: When I brush my teeth, or eat.

    Before I started to take the Tegretol medicine, I was getting pain spasms every 5-10 minutes, through the whole day. 24-7. (That was bad!)  

     

    I know everyone TN condition is different, and each individual responds different to medicine, but I think you should make sure you have exhausted  all available options before surgery.

     

    My neurologist Dr. says that surgery should be your last option and it does not guarantee that it will get rid of TN pain for ever. He says that in some patients, the pain returns after the surgery, and that it could get much worse after the procedure.

    He recommends; to continue treatment of TN through the use of medicine, there are a few combinations of different medicines, to better treat patients with TN symptoms.

    I know TN is horrible pain to live with… but. I would suggest that you contact a Neurologist if you haven't done so already, and look for all possible options before contemplating surgery.

    Good luck Rachel,

     

    I feel your pain... Be strong, and take one step at a time. I think medicine is the most logical approach to take.

    Have a wonderful day! God Bless!

    • RachisCool
      RachisCool tony91887

      Posted

      Hiya Tony,

      My doctor told me the same about the operation being the last resort but why suffer years of drug cocktails that only make you feel like a zombie and interfere with you working and living daily life when an operation can cure it? It's not rocket science, go in take the anesthesia get the procedure done whilst asleep and wake up cured, job done :-) oh and it won't cost me a penny.

    • RachisCool
      RachisCool tony91887

      Posted

      Hi Tony,

      How are you?

      I've been to the pain clinic last week and the Doctor there said as I have pain in my ear also he's referring me to an.ear nose and throat specialists and suggested its not TN despite the electric shock in my head and electric teeth. He's arranging and drug cocktail remedy and is deterring me from any invasive procedures. I just want to be back to normal again and not on meds. Have you considered any other procedures?

  • michael127
    michael127 RachisCool

    Posted

    Hi Rachis, a bit early yet to think re : operation yet. i`ve had TN for 20 yrs and though recurrent maybe 6 or 7 times now, try a bag of FROZEN PEAS on the affected area, half of your head will be affected so firstly hold bag close to ear area then go towards nose then sinus ,lower jaw ,top of head ,even behind ear cool the lot' if you have tablets pop one under tongue to dissolve. co-codamol is quite good. i feel your pain. now i`m on 9 attacks in one day ouch ouch.
    • RachisCool
      RachisCool michael127

      Posted

      Anything cold remotely near my face sends into a spiral of pain. I'll still with the hat en scarf :-)
  • fed-up
    fed-up RachisCool

    Posted

    Rachiscool

    oh boy do i know how you feel, i've had this for about two and a half months, im on 2400mg of oxcarbazepine and gabapentin which was upped a couple of days ago and pain is breaking through again and i don't know what to do, i want the op so bad too and i haven't even an appointment for a neuro yet! but i am so close to breaking point, there is no way i am going to keep going on with this pain. keep pushing for an op mate.

    • michael127
      michael127 fed-up

      Posted

      I Feel For You As I`ve Hopefully Just Finished A Month Long TN. Cold And Hot Sensations ie Rachis Cool Cannot Bear The Cool Situation But I Was Told By Paramedics To Try The Bag Of FROZEN Peas Touch.I`m 66 And The Pain Gets More Intense As You Get Older. Go For The Operation If It Goes Wrong Your Side Of The Face Will Be Paralysed Forever.
    • fed-up
      fed-up michael127

      Posted

      thanks that makes me feel better. can't wait.
    • michael127
      michael127 fed-up

      Posted

      Hi fed-up, Anything To Ease The Pain,. If You Look Up TN The Notification Is Suicide Sickness. Different People Have Different Reactions No Offence Meant.
    • RachisCool
      RachisCool michael127

      Posted

      The op has a 90% success rate but you might have a bit of numbness but that beats pain for the rest of your life.
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