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  Hug

  From LadyBlessed October 31

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  I’m With You

  From jady October 7

  okay princess
  here is my deal and my opinion... i have atypical facial pain left side for six years now, then last year i got ramsey hunt syndrome on opposite side of my face it's like having bells and shingles at same time nasty nasty virus, which anyone can get if you had chicken pox it's a dormant virus. so i have some hearing loss, and nerve damage to right side of face. is your tn and bells on same side???? or opposites???
  this is what i have learned. there is nothing they can do to fix bells damage, probably caused by stress from dealing with horrible chronic pain. my dr said give it a couple of years to settle down and heal before you do anything. he uped my meds to deal with the nerve pain it causes. my tn issues are NOT caused by blood vessel issues on tn nerve so nothing to "fix" there either. they don't know why i got the atfp. so i would get another opinion like from cleveland clinic or northwestern chicago. my dr is in chicago. he told me right up front after looking at mri whether or not he could help me. meds weren't cutting it so he offered MCS. this is not a cure and it doesn't work for everyone, but he will let you know if he thinks you are a good candidate this is a system that interrupts the pain signals to the brain and allowed me to function more, get off some of the meds and less pain. i am thankful it worked for me and i am doing better. i opted not to have the gamma knife because it can cause more damage. my thoughts were i already have damage don't want to cause anymore irreversible damage. so research and talk to people who have had it. a few of my friends here have had it and are saying it was a big mistake it isn't a cure either and they had to have more treatments after it and couldn't have some treatments because of the damage the gamma knife left them with. it may work for other's but i haven't talked to anyone that it never came back. i hope it has worked for others.
  so i went for the it's not a cure but won't damage anything further route.
  these are hard decisions and everyone has to make their own. hope this has helped. feel free to ask me anything else. also unless there is a game plan i wouldn't let anyone just take a look. they better be a dr. with a plan if they are going to do surgery. but i did hear of one person who when they went in to do MVD she really needed it.
  blessings for pain free days and God leading you to the right decision.
  jady

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  I’m With You

  From Robninja September 2

  It sonuds like your doing the right thing by researching the gamma knife as much as possible and like you say, you never know what might help. Hopefully it'll help you and let you have control of your life back. I'm sure that there must be a way of learning/operating to control this horrible pain, we just have to bite our tongues until we find the way for us!!
  The deep brain stimulation is very scary because it means that I'll have wires in my brain that will be connected to a device implanted in my chest. This device is a computer that can be programmed to pass electricity into the areas of my brain that the pain shows up most in. This is supposedly ment to be relativly low risk because the nothing is being destroyed, just electricuted!! I haven't been selected for the surgery yet becaues like you said, not every will respond in the same way, but I'm being put forward.
  I have an appiontment to go and see a neurosurgeon on the 14th of next month to talk about the operation and what it involves and see if he thinks it'll help improve my quality of life.
  Thanks for your hug and i hope that we can support eachother during this difficult part of our lives.
  Rob

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  Chicken Soup

  From jady September 2

  okie dokie,
  you are right we all do what is best for ourselves.
  prayers for finding you best thing
  julie

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  Hug

  From jady August 30

  hi, i have not had gamma knife. i chose to have something that wouldn't destory anything any further.. a friend of mine got anesthesia dolorosa after the gamma, and most people i know aren't very supportive of it because it returns or is worse. there are some that have had success but ii have heard more negative just be careful. i have had the motor cortex stimulator, not a deep brain surgery and am doing really well. on maint. meds now. it's not a cure but somethign to help you manage pain. everyone makes their own decisions. just make sure you they are educated one.
  jady

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