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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.
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In any of this time pre-surgery was a long course of oral antibiotics and oral steroids tried together in combination therapy?
And or post surgery a oral steroid taper?
Many times.
I assumed as much. Just thought I’d ask, as you only mentioned Flonase before.
I know you said you’ve seen many doctors, which that can be exhausting in and of itself.
Really sorry you have experienced this. Nerve pain and pain in general is very tricky from the start, especially the neck up.
You are fortunate you are working with an ENT whom is willing to try and locate/re-create the pain pathway for you, to hopefully get to some relief.
@carterbeauford
I also wanted to include this video clip for you.
I met with the Neurologist-Specifically Head Ache specialist whom see’s people from all over the country. She gets many referrals post sinus surgeries as well as speaks at many Rhinology meetings, trying to get ENTs to understand the correlation.
The word “migraine” is an umbrella just like other syndromes and encompasses a whole bunch of different presentations in people throughout life.
The nerve signaling of someone on the migraine “spectrum”-their nerves do not like change. This means, weather, environmental, disruption in sleep or things new in the environment. Things that you mentioned like that might resonate with you.
Short clip-10 minutes, focusing on the Trigeminal system MOA. And how it shows up in the nose and sinuses.
https://m.youtube.com/watch?v=RJeqcikMKAI
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2 ReactionsI had a visit with Dr Das who told me in 15 minutes what happened to me, what it's called, and how to treat it.
http://www.usasinus.org/meet-dr-das
Traumatic trigeminal neuroma. Something my body really didn't like came in contact with my middle turbinates and damaged the nerves. Sinus surgeries only made the damage worse. Any allergens or changes in pressure caused an abnormal immune response making the pain worse. Something that's taken 58 doctors and 7 years. He found visible chemical damage on endoscopy and injected platelet rich plasma and stem cells into the area and said you might feel better in 4-6 weeks. The nerve was in there deep and I knew within a second of the injection he hit it.
Anyone suffering from ENS or anything like it you won't find any better care than this guy.
@carterbeauford-
Thank you so much for coming back to follow up w/ your visit from Dr. Das. That’s great you were able to see him and he was able to provide you with some hope.
When I first read your story, I deep down knew it had something to do with the middle turbinate nerve sensations way up superiorly. It’s like something you can not explain.
I have learned through all of this that the Middle Turbinates are not something to be messed with due to their higher nerve sensitivity and protection of other areas.
Wishing you the best and hopefully you will be on the road to recovery soon.
Again-thank you for reporting back as you may save some people from making the decision to chance nasal/sinus surgeries. They are not to be taken lightly.
Dr Das only cares about money. $3,000 later I have gotten no relief from PRP, stem cells and botox.
I met with a new neurosurgeon, Dr Zenonos, who said my peripheral nerve pain is so severe an implanted spinal cord stimulator would give me some quality of life. I am also meeting with an intranasal plastic surgeon, one of the best in the country, Dr Guyuron in August. I don't know what he will be able to do other than resect nerves.
I had a vasectomy 18 months ago, unrelated to nerve pain but every time I masturbate I cry and have excruciating anxiety the next day. Lab work showed a testosterone level of 350 which I believe may be playing a role. I am going to see if I can get on low dose TRT in a few weeks. Explains the ED, mood swings, anxiety, spatial disorientation and brain fog I have been dealing with for 15 years. I read low testosterone can make the brain not able to process pain.
I still do not feel it is central pain syndrome since it is vascular in nature. A clue should be that Cialis and Levitra make it worse and soaking my middle turbinates in epinephrine make it slightly better.
@carterbeauford-
Sorry you experienced the unsuccessful PRP treatment.
Going back way before your first surgery, were you ever on long term allergy therapy before any type of turbinate reduction or sinus surgeries?
Allergy shots since adolescence.
@carterbeauford
And into adulthood were you ever on any regular topical allergy regimen?
I’m sure you’ve had all the questions.
Allergic Rhinitis/Non Allergic Rhinitis/Migraine type symptoms all can overlap as much has to do with high histamine levels and increased nerve sensitivities.
I believe there is help out there for your pain and chasing pain at the source is very tough.
I know nasal/sinus surgeries can help a small % of people who check all the right categories.
However the things that caused allergies sensitivity as well as non allergic will still be there.
There are many people whom suffer through the first change in winter season post surgery due to their sinuses being more open. They tell you your brain will just have to get used to the changes.
But when allergic/non allergic/migraine type sensitivities are in play, that type does not like changes to the already activated nervous system.
It’s way too deep and complex.
But it all plays into one.
Which is why I do not agree with nasal/sinus procedures for each and every patient (it has to selective).
I’m sure you’ve also been offered an SSRI at this point as at a low dose they work on the pain pathway. Dopamine, Norepinephrine,Seratonin. It’s all just really complex.
This might be very multifactorial for you at this point. So I recommend working at it through multiple channels as it might not just be one source. But I’m sure you have been told that already.
Good luck to you in your search with this.