Originally Posted by ErikaFranzi

i just underwent a medically induced ketamine coma in an attempt to relieve my intractable trigeminal pain. I was told that I am the 10th patient to undergo this treatment at UC Irvine, and the only one being treated for trigeminal pain. In December, I had my second MVD surgery done, this time at UCI. My previous failed surgery was done at another hospital. The surgery was 100% successful, however 3 weeks after the surgery, a new pain began. This pain has grown over the months and at the time of my induced coma, was intractable 10+ pain. My neurosurgeon thinks, I believe correctly, that this pain is the result of the extensive work he had to do to correct my previous MVD and decompress 8 more compressions on more than my trigeminal nerve. The hope was that the induced coma and ketamine would give me enough relief for long enough that I could make it in at least manageable pain through the next 12 months, which is how it will be before an assessment of nerve healing or damage can be made. The hope is that my nerves will heal and in 12 months I will finally be pain free.
I went under on April 25 and came out on May 2. Over the course of the next 3 weeks, my pain went from a 0 to a steady 5/6. I am taking 5 mg of ketamine orally every 4 hours as needed. It doesn't seem to be enough to sustain the pain relief. Yesterday my pain went rapidly from my usual 5 to a 9+. I'm now awaiting a call back from my regular pain specialist as I have been discharged from the care of Dr. Liao and Dr. Capasso of UCI's Palliative Care Team.
I'm sad to say that I think this treatment didn't work for me. Oral ketamine is not helping and infusions only help while they are happening, but the pain immediately returns when the infusion stops.
I have no idea what's next for me and no one to talk to. I hoped that I could get in touch with you and at least discuss the experience that so few have had.
Please contact me.

Originally Posted by drdalto

Erika,
I have been suffering from Orofacial / head pain since an injury to V3 back in 1993. Like you I have been searching for the magic bullet, holy grail or even just a few minutes of relief.
I have tried every medication under the sun, from anti-convulsive to anti-depressives to opioids. And then in every combination possible. I have had the pleasure of several hundred nerve blocks. Nothing works, nothing sustains.
That brought me to the Ketamine coma and low-dose Ketamine as an after treatment. Unfortunately I have heard of multiple experiences where the trigeminal and associated nerves are damaged / disturbed and none of them have happy outcomes. My neuro got to the point that he would joking day he had a cure. My body would be happy, my head not so much ... then say I guess amputation is out of the question. His way of saying that he and the team are out of answers.
I have frequent visits to a well recognized Orofacial pain team, one that is truly battle tested. They are out of answers. I think that they let me come to vent, then fall into tears. Every time I read another trigeminal story I cry because I know what you are going through and I know that there are few that have an understanding - medical community, co-workers, family.
I wish you the best and hope that there is some relief if even only for a day or two.