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Old 10-28-2014, 07:26 PM
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zookester zookester is offline
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Quote:
Originally Posted by pained View Post
Deb,

Were any of the people that you come across being treated for Trigeminal Neuralgia had a nerve injured by a surgery, dental procedure, accident (likely peripheral neuropathy)? It was explained to me that if the pain was due to an injury, the injury had to be healed and if the brain did not recognize the healing, Calmare would stop the brain from thinking the pain was still there. Basically like phantom limb pain.

When I called this doctor's office and talked to his assistant, I asked if this procedure stopped the pain going into the brain or coming out of the brain. I was told "into" the brain....but what the doctor explained to me was pain coming out of the brain.

There is 100% probability that my nerve has not healed but I have no idea if it is still sending pain signals. I am still in pain when I am numb, So I do have some neuropathic pain.

When I started investigating whether or not my injury would still be transmitting pain signals, I found some adverse event reports on the FDA website, one specifically about this doctor. I also contacted a doctor who I've kept in touch with to ask if he thought my nerve would be transmitting the pain. When I emailed this doctor about what my doctor said and the FDA report, he became almost hostile that I had been researching behind his back and told me he would not accept me into his practice. It was a warning sign to me but over time, there will be others who can do the same treatments he can. If a doctor doesn't like a patient doing their own research and asking for 2nd, 3rd, 4th opinions, it is a huge red flag to me...especially when I'm wanting to use it for an off-label situation.
Hello pained,

I'm curious if you might possibly have 'anesthesia dolorosa'? Has anyone mentioned this to you or something called 'deafferentation pain'? I ask because in your post above you mentioned having pain "even though you were numb" which is a sign of 'anesthesia dolorosa' another type of nerve pain syndrome and one that I suffer with along with CRPS II that was from a nerve injury during surgery. Though I don't have it in my TN nerve it is very common to have it there - if you would like more information on one treatment that has been very effective for folks suffering from this please let me know and I will gladly search my files for the link.

Wishing you less pain very soon,
Tessa
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