severe continuous bilateral facial pain

Posted by DMG @hashemis1, 19 hours ago

My problem began 13 years ago. it began with the removal of an infected dental implant. from that point through today I have separate from severe , continuous, bilateral Facial Pain. I started with pain doctor in 2013 who misdiagnosed me with trigeminal neuralgia. At that time my pain doc had never seen a facial patient. he started with the regular medications and then proceeded on to injections. finally after two and a half years of increasing pain he called in his mentor a famous guy in the world of chronic pain. They decided to try neuromodulation despite the fact that neither of them nor anybody we could find had ever done it. one of the challenges was of course we used percutaneous leads which are small wires with an electrode on the end. lead migration is a serious risk because your facial muscles are always moving. nonetheless we proceeded with a trial which cut my pain in half down to five. We then proceeded with the nerve stimulator procedure. for two and a half years I got some relief and then began to experience diminishing returns. It soon became apparent to me that the complexity of my case and the Rarity of it had far outstripped the skills of my pain Doc. I then did two more different nerve stimulator procedures using equipment from Abbott Laboratories. neither one of those helped very much at all. so I began to look for a neurosurgeon. it was incredibly hard to find one with facial experience but thankfully here in Dallas we have a huge and excellent medical community. with God's blessing I found one 10 minutes from my house. I was in terrible shape at that time.He sent me to his pain doc for some rule outs. Three different injections none of which helped much. he then suggested a high cervical stimulator surgery which was very scary because it included a laminectomy. you cannot use percutaneous leads for this surgery. it requires something called a paddle. it's very invasive. we did the surgery and it helped me very little which was incredibly discouraging. we Then followed that with an occipital nerve stimulator surgery and it also helped me very little. since then I have tried ketamine infusions which apart from getting a chance to meet John Lennon served no purpose at all. So here I sit day after day in the kind of pain that turns a second into an hour. I have no other suitable courses of treatment at this time. I am a retired psychologist and so I am pretty well equipped to manage the psychological emotional and spiritual aspects of this terrible pain. nonetheless and despite my best efforts are frequently feel unstable these days. were it not for my Judaism and my wife I would be in great despair. I would very much like to hear from any of you that have been through anything like this. Thank you for listening. Lastly please forgive all the typos as I haven't the energy to correct it.

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