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severe continuous bilateral facial pain
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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DMG, Your history is similar to mine which started 11 + years ago following sinus surgery in June 2014. Since then i have had many unsuccessful treatments and very few reliable diagnoses. I had gamma knife surgery to my right trigeminal nerve which did nothing. I spend 5 days as an inpatient at Jefferson Hospital in Philadelphia for an infusion of lidocaine. No help. I've had botox and nerve block injections and my current doctor wants me to have some more botox injections. I have had acupuncture, acupressure, message (Crainosacral, etc) and therapy with psychologists and psychiatrists. I have been to see specialists at the Univ. of Florida, Maryland, Virginia, and Colorado (where i am now in treatment). A neurosurgeon at Johns Hopkins advised that he did not consider that my conditions suggested that neurosurgery would help. Since i have a bulging disk at C 3-4 (asymtomatic) I did have steroid injections there. If only the sedation would have lasted longer, that might have helped, but alas, the pain was back in 20 minutes.
The most help i have found was from various pain mediation devices i use. Here's a list:
1. On an overnight train trip to New Orleans we thought to use blinder masks to help us sleep. That was my best night's sleep in years . I now use a sweat band on my head 95% of a 24 hour day. The light pressure around my head, with the band just above my eyes gives tangible relief and i wear one over my eyes to sleep at night.
2. I also find significant relief from using a "Migraine Cap" bought thru Amazon. When not on my head these caps are kept in the freezer. I have about 4 of those.
3. I have found that applying pressure to various places around my head gives relief. In my shop i have made wooden sticks of various lengths that i use to apply pressure around my temples, eyebrows, beneath my nose, my chin line, etc. I keep one of those sticks in the car.
4. Finally, i have recently started using a CPAP device to help with a sleep disorder. I find that the mask covering my nose and mouth does put pressure around my nose. That source of pressure provides some pain relief.
Currently i am optimistic that my current neurologist near Denver, Co. might help me. Her diagnosis is "Chronic Migraine Headache". I am now, once a month, injecting myself with Ajovy and i MUST keep that up for about 6 months before I can expect to detect any relief. I also have some pills of Ubrelvy to take in times when i sense an increase of the pain. Since the pain is constant it is difficult to know if it is getting worse or just the same old pain.
I also thank my wife and family for the support i have received from them. Don't know how we would get thru elusive recovery without them.
No doubt there are several misspellings in this too long reply. I hope some of these home remedies might help you. Your responses back to me are welcome.
WSC
@wbc thank you for your reply. You did not mention neuromodulation. Have you had any nerve stimulator implant surgery or has nerve pain been ruled out as the source of your pain?
DMG, Although this feels like nerve pain, I've never tried neuromodulation or implanted stimulators, except at UVA with white rats in my college course on physiological psychology. Have you tried neuromodulation or implanted stimulators? None of my dozens of doctors have ever suggested that as a possible cure. Sounds like serious and risky brain surgery or an experimental study for which I'd want the best experts to feel confident it would help. I may bring that up with my doctor to see what her response is. I have never had that ruled out. Doctors have a difficult time reaching a diagnosis. One decided it was CRPS. Some can't come up with a diagnosis and so, to move me along out of their office, they say it is psychological and not their field. I have subsequently ruled this out as psychological.
At this moment I'm wearing a migraine cap, fresh out of the freezer which brings on quick relief, but warms up in about 5 - 10 minutes. Some of my grandchildren have never seen me without my sweat band on my head. I'm looking forward to injecting myself again with Ajovy but can only do that once a month for at least 5-6 more months to expect to feel a difference. So its a waiting game for now. Hope you can find some relief. WBC
@wbc i have had four nerve simulator implants. It's usually quite a simple procedure and any competent pain doctor can do it. The high cervical was an exception. It was invasive and somewhat risky. 90% of all nerve stimulators are for spinal.So using it for nerve pain is very off label. Nonetheless neuromodulation is becoming a little bit more frequent for facial pain. It's certainly worth discussing. Having an extremely rare condition such as my facial pain, I can really relate to you. We have been through some of the same things.At this point I'm just trying to survive and continue looking for viable treatment options. I lean heavily on my spirituality and upon my dear dear wife. Let's stay in touch.
By all means, lets stay in touch. When you find a cure please let me know how you did it and i'll do the same for you. By the way, I once attempted to make an appointment with a neurology professor at the U of Pennsylvania, but hia secretary advised me that he did not want to take on a patient whose complaint was Facial Pain. We have a rare condition that is not easy to cure. Hope yours is well soon. WBC