intractable facial pain, complex case
In 2007 I got new carpet in my home. I started noticing a burning sensation in my right turbinates not long after. I didn't think much of it. Around 2010 I started noticing fullness and pressure in my ears and loss of balance. Around 2016 I started noticing worsening orbital headaches and pain in my turbinates. CT scan showed deviated septum and sinusitis. In 2017 I underwent bilateral endoscopic sinus surgery and septoplasty. The pain never got better. My upper right molars started aching when my turbinates would swell. After dozens of visits with no answers I started seeing a new ENT. In 2018 underwent revisionary bilateral endoscopic sinus surgery and septoplasty. The pain never got better. The surgery was in the fall and by winter the dental pain and nasal burning was worsening in response to changes in temperature or humidity. In 2020 I consulted with a Cleveland Clinic neurologist who referred me to their ENT, headache and pain management centers. I also saw an endodontist who diagnosed me with trigeminal neuralgia. As of the end of 2022 I have seen 55 dotors in 7 states. Here is a list of things they have tried
Clarifix nasal cryosurgery x2, no relief
Every antiepileptic and trigeminal neuralgia medication there is, no relief
Supraorbital block, no relief
Sphenopalatine block, no relief
Trigeminal block, no relief
Spenopalatine neurolysis, this destroyed all the nerves in my left cheek and gums but no relief
Stellate block x3, no relief
Upper cervical epidural, no relief
Botox everywhere, even my gums, no relief
Physical therapy, no relief
Platelet rich plasma and prolotherapy in my jaw joint, no relief
Platelet rich plasma and prolotherapy in my neck facet joints, no relief
Trigger point injections in my masseter, temporal tendon and sternocleidomastoid, no relief
Tens unit, no relief
Jaw joint massage, no relief
Class IV laser everywhere, even gums, no relief, hoping it regenerates some nerves
RFA of nasal nerves x4, no relief
Transcranial magnetic stimulation, made jaw pain worse
Here are my symptoms as I sit here today. Burning pain in both middle turbinates, across my nasal bridge, and on the right lateral nasal wall past the right superior turbinate almost to my eye socket. Tingling in my maxillary nerve in my cheek under my right eye. Aching pain in my supratrochlear nerve above my right orbital. Aching pain in my maxillary nerves in my upper right molars. Sensation of fullness in my ears and numbness at the sternocleidomastoid insertion behind my ears. Sensitive hearing and ear pain in response to loud noises. Pain and inflammation in my jaw joint. Masseter muscles feel like they are constantly in spasm. Slight asymmetry of face and difficulty speaking. The pain never goes away but is reduced slightly for the first 2 hours after getting up in the morning then slowly returns to baseline.
The pain is indescribable and has cost me my home, marriage, first love after divorce and career. I have not been able to enjoy a single day of my 7 year old son's life without it. If you saw me you'd think something is really off. People treat me like a ghost. I met a wonderful woman 2 years ago who has been supportive and accompanied me to nerve blocks. I love her dearly and even she is keeping me at arm's length. Of course all this has resulted in depression. I have narrowed the cause down to nasal nerve damage made worse by the sinus surgeries or entrapment of the occipital nerves in my neck or both. One of the occipital trigger point injections changed the orbital pain but did not relieve it. It's hard to describe. I don't think we went deep enough. I can feel the needle going into the painful trigger points in my neck and masseter but nothing relieves the pain.
I've been seeing a great ENT for the last year and he wants to take my middle turbinates out. He spent half an hour performing RFA on the burning nasal nerves 3 weeks ago. He soaked my nose in ephedrine before the RFA and I got some pain relief and improvement in my sense of smell the next day but it was only temporary. I can touch the nasal nerves about 2 inches up with a cotton swab and make the pain worse, but lidocaine applied to the area has no effect. A cotton swab pushed between the narrow gap between the nasal walls makes the pain much worse. I've read about contact point headaches and can't believe they are as bad as what I am experiencing or that removing the contact between the nasal wall and turbinate would give relief. I do believe the theory that there's something in my nose that hurts like hell, take it out, but am not convinced. I am concerned about empty nose syndrome but he said my middle turbinates are small and that removing them would give him better access for RFA further up my nasal wall. I read medical literature where occipital nerve entrapment caused these exact symptoms but the only way to diagnose that is to cut me open. I see one of the world's best pain management doctors and he agrees, however I do not believe occipital steroid blocks are diagnostic. I've been in his OR at Cleveland Clinic for nerve blocks a dozen times and know all the staff on a first name basis. Steroid simply have no effect. I read the entire thread here about empty nose syndrome and think I am suffering many of the autonomic nervous system symptoms. Stellate blocks did nothing to break the fight or flight state I find myself in.
I have not given up hope. Help.