intractable facial pain, complex case

Posted by carterbeauford @carterbeauford, Jan 2 4:19pm

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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@carterbeauford First, let me welcome you to Connect. You have been through some extensive medical treatments, but it was your first sentence that got my attention about having new carpet. That comes with lots of chemicals, perhaps glues to lay the carpet in the home and formaldehyde which will be out gassing chemicals into the air. This is something that I cannot tolerate because of asthma and allergies, and we built a home and made choices to eliminate formaldehyde in building products, finishes and paint. When I worked in a building that that was newly renovated and with new carpeting, my face would turn red and swell, I had sharp ear and sinus pain, and I had horrible headaches and asthma issues all the time.

Did any of your doctors question if you were reacting to the new carpet? If you are allergic or chemically sensitive, your body will react no matter how many surgical procedures you have.

Here is a website of the practice that established environmental medicine as a specialty. There is information there about sensitivities and treatments.

Environmental Health Center of Dallas
https://www.ehcd.com/
You can also search for a provider at https://www.aaemonline.org/

I saw an environmental medicine provider about similar issues. I am so sorry this has affected your life in a negative way. I hope that you can build new relationships with people who are understanding. If this is what you have, it is a disability, and it's not your fault. Everything you are exposed to externally in the air and water, or internally such as compounds in dental work may have an effect. I had old dental work with root canals that failed that were leaking toxic compounds into my body. I also had all the old silver amalgam fillings replaced with safer materials. Those leach out toxic mercury when they are old. When all of that was removed, my health improved a lot.

Do you think environmental factors should be considered? Can you make a list of potential things that might be bothering you? Have you had typical seasonal allergies such as to outdoor molds before? If there is any water leaking, you could have possible mold exposure inside your home too. I am very allergic to molds and use HEPA filters inside my home year round.

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I told every doctor about the nasal burning after the new carpet but 9 years elapsed between when I got the new carpet and when I first saw a doctor. I have not lived in the home with the new carpet in 6 years. I built a new home with good indoor air quality and all hardwood floors and the pain worsened. I got divorced and live in a condo built on a slab with good indoor air quality now.

I would still be experiencing the pain in a completely sterile room. The pain is always a 9 but the other day I was cutting wood with a chainsaw and the exhaust affected my nasal nerves and made it a 10. The ephedrine my ENT used acted as a vasoconstrictor which makes me hopeful that this is indeed all coming from my nose.

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@carterbeauford
I am sorry you have experienced this.
You are very detailed, which I know takes a lot to recount all of the visits and treatments.

I want to let you know that I understand you. If anything I hope that can provide some type of relief.

I have learned a lot on my journey which is eerily similar sounding.

I will share what I have learned and you can see if any of it resonates with you.

The nose/sinuses are ALL nerve related. Regardless of what we feel, when or how it is ALL nerves. People who are more sensitive to things in general, typically the nose follows suit. I believe Vasomotor rhinitis or “non allergic” rhinitis is very misunderstood in the ENT world. Typically a person with vasomotor rhinitis is also on the migraine “type” spectrum of Trigeminal nerve activation, Occipital nerve activation and sensitivity.
In other words a lower threshold of Trigeminal nerve in general. Some even being predisposed to TMJD.

When a patient first presents to the ENT, it is hard to chase referred pain, which often can express itself in the nose and sinus area.

I believe patients with Vasomotor rhinitis can present with sinus inflammation on a CT, due to hyperactive nerve inflammation.

When a person enters the world of surgery to treat nerve irritation on already hyperactive nerves of unknown cause that’s when the system can go ary, especially on someone pre disposed.

For me- I never had issues with my sinuses or nose. At most I had a complaint of congestion. I was showed a scan of “sinusitis and a deviated septum” -made to believe that was the source of my “atypical headaches”. Knowing what I know now, and the 2 Neuro/Headache specialists I’ve met with, I know my original issue was predominately coming from my occipital nerves up my head into my ear, causing fullness and disequilibrium. It was the ear fullness that drove me to an ENT, because I never would have thought it could have been coming from my neck or head.

Unfortunately I went the ENT path and started an issue in an area that was not causing any issues, but predisposed to sensitivity if bothered, altered or touched.

The Neurologist now wishes they would have intervened more, as all I would have originally needed was some attention to my neck and upper cervical area for trigger point therapy and strengthening.

I was completely healthy, prior to my sinus surgery. I was working out 2x a day. And lived an active healthy lifestyle, with health actual being my passion and teaching others. Someone running 8 miles a day is in repetitive movement shooting pain through my occipital nerves not knowing it was ever coming from the trigger point in my trap muscle. When the referred pain hit its weakest link, it hit my scalp and ear, making me thing it was my sinus/ear issues. I should have never been recommended any type of surgery, given my history. I was simply following the theory of a medical “expert”. I was given medications that wouldn’t have worked in the first place.

Immediately after my surgery-I knew something was wrong. I could no longer look down with my eyes or move my head left to right. I was told it was just because I had post surgical inflammation and I ended up in PT for two months just to get some neck mobility back-never neck mobility issue in my life. I lost 10 pounds in 3 weeks with out even trying all because of my nervous system, pain and the inability to sleep. At one point I was awake for 48 hours because my breathing would not allow me to sleep. Then it turned into awful autonomic nervous system disruption.

Every inhale after surgery felt stiff and painful. Again I was told it was just inflammation. I said if this is inflammation, then I’ve never had inflammation before in my life. Which every adult has felt inflammation in their nose at some point.

After a month I was doing any and everything I could do to stop the pain in my nose.

I asked for every type of block I could get. Too many to list, but all similar to yours.

I could point in each area that I felt needed a block.

Mind you I had a completely clean medical record history. Never even took an advil. Now I was going to every professional I could for the neck up to stop the pain.

Overtime the bracing and guarding from the painful inhilation has caused worsened tightening of my neck head muscles and eyes.

I know this is not allergies or from other environmental irritants. If anything I feel like my already sensitive nerves have nothing protecting them inside my nasal/sinus cavity-so air that otherwise wouldn’t be hitting bone and tissue is hitting nerves. The faster the air travels in the more pain and bracing happens. I had an amazing sense of smell prior to this and now smells burn my nose. But not in a way that is just bothersome. It’s as if I have no protection surrounding the olfactory area and everything crosses over the nerves too fast and too much into the brain.
I get a brain freeze like headache with each inhale. This causes facial and muscular tension and almost a permanent migraine.

The Neuro I have worked with post surgery is perplexed and does not understand how the pain is ongoing and does not stop. It’s hard to put it into words to someone whom has not experienced it. It’s like if you took insulation out of the walls of a home and all of the doors and windows, it would feel cold, empty and sound rickety and not be protected. I believe that’s what happens with these surgeries. The nerve insulation is almost as if it is stripped away.

If there is a widow cracked in my home, I can feel it now way too easily, from the draft sensation hitting my nose.

I don’t believe in the name “empty nose syndrome” or the ENTs theories behind it. I do believe that with any surgery there are risks, and unfortunately the ENTs surgeries are overly recommended without real and proper diagnosis. Especially for people who have unidentified headache syndromes.

It sounds like you are working with some pretty knowledgeable people, so feel confident in that. At the same time you are seeking out treatment. I recommend you work with someone whom can help you with your bodily tension and nervous system. The tension, lack of real rest and pain will keep the autonomic nervous system revved up as well. And anything that can help calm nerve sensitization, which I’m sure you have tried many. Try as many things as you can do to keep the surrounding areas fluid, moving and stretched.

I provide these details to assure you, you are not alone and to also bring awareness to others who may read this.

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@carterbeauford

I wanted to add these two case reports in here for you to read as well to see if any of this resonates.

I think it is important that these are shared because these situations are under-reported so they are not in literature or for anyone to access.
Referrals to Neurology following these procedures are not rare.

In fact some ENTs are just now starting to prescribe gabapentin post op instead of pain medication, because they are aware of the huge nerve component at hand in which they are dealing with.

Maybe there are something in either of these that could provide help or direction.

Both cases represent, misdiagnosis for septoplasty and inappropriate early care of neuropathic pain.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8716246/
https://www.researchgate.net/publication/347080229_Maxillary_Nerve-Mediated_Postseptoplasty_Nasal_Allodynia_A_Case_Report

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I had not read the first article. The peripheral nasal nerves are completely refractory to lidocaine. My ENT injected 10% lidocaine that isn't even available in the US near my middle turbinate and the nerve pain kept burning through the numbness.

I read the second article and Dr Yu took me as a patient. He said rather than fly to San Francisco for RFA he'd consult with my ENT. Two different ENTS have performed 4 pulsed nasal RFAs and I am baffled as to why the nerves continue to burn. My only explanation is he didn't go up far enough in my right nasal passage and hit the nerves on the narrow nasal wall. I requested he perform RFA without anesthetic so I could make sure he hit the right nerve but he would not. Again, the ephedrine used during the RFA acted as a vasoconstrictor which relieved some of the pain and allowed me to breathe and smell better the next day but it was only temporary. This gives me some hope the pain is coming from my nasal nerves. Any pain relief and improvement in smell immediately improves my mood. I sent a message to Dr Yu asking his thoughts.

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As far as the referral to neurology, I've seen 8 neurologists at Cleveland Clinic. They attempted to treat me with antiepileptics, biologics for migraine and botox, all of which gave no relief. Tried gabapentin, tegretol, topamax, indomethacin, and aimovig. This is not trigeminal neuralgia or migraine.

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@carterbeauford

As far as the referral to neurology, I've seen 8 neurologists at Cleveland Clinic. They attempted to treat me with antiepileptics, biologics for migraine and botox, all of which gave no relief. Tried gabapentin, tegretol, topamax, indomethacin, and aimovig. This is not trigeminal neuralgia or migraine.

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@carterbeauford

Thanks for the clarification.

I’m curious pre first surgery what was your chief complaint that prompted you to see an ENT?

And if chronic rhino sinusitis was the diagnosis, what form of maximum medical therapy was tried before a CT scan? I know there is a lot of grey area in this protocol and every provider is different, which is a problem.

And your 2nd surgery, I’m assuming they deemed the 1st as incomplete?

And what ongoing topical therapy was agreed upon for the ongoing management of the inflammatory process of CRS?

I’m asking to simply understand the condition pre/post.

I’ve seen many ENTs like yourself. At 2 major University systems as well. They have all been very honest with me about what they know/don’t know about the “disease” state they diagnose. Turns out there is a lot more that they admit, they don’t know.

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@nrd1

@carterbeauford

Thanks for the clarification.

I’m curious pre first surgery what was your chief complaint that prompted you to see an ENT?

And if chronic rhino sinusitis was the diagnosis, what form of maximum medical therapy was tried before a CT scan? I know there is a lot of grey area in this protocol and every provider is different, which is a problem.

And your 2nd surgery, I’m assuming they deemed the 1st as incomplete?

And what ongoing topical therapy was agreed upon for the ongoing management of the inflammatory process of CRS?

I’m asking to simply understand the condition pre/post.

I’ve seen many ENTs like yourself. At 2 major University systems as well. They have all been very honest with me about what they know/don’t know about the “disease” state they diagnose. Turns out there is a lot more that they admit, they don’t know.

Jump to this post

I don't remember much other than the nasal burning but I'm sure I was having what I believed to be sinus headaches and frequent sinus infections and postnasal drip that always turned into a cold. My grandparents had a condo in Palm Springs and every time I went to the desert air I got sick. First ENT tried flonase, when that didn't work he went up there and ballooned my maxillary sinuses and straightened my septum. When I kept having nerve pain after recovery he tried singulair. Second ENT said first ENT didn't do a very good job straightening my septum and did a revision and ballooned all my sinuses. When I kept having nerve pain after recovery he tried allergy shots. The only other treatment I've had for CRS is the two clarifix nasal cryosurgeries. The second one performed by my current ENT was specifically to try to freeze the nerves that hurt. He even said let's shoot a second canister of CO2 up the right side. And nothing.

I hardly ever get sinus infections anymore, if ever. Hardly ever get sick anymore either. Sinuses drain great, all the obstruction is from nerve inflammation.

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I was under the impression that you could not use a balloon procedure in the ethmoid cavities.
Only frontal, maxillary and sphenoid. So were your ethmoid sinuses ever accessed?

Both times were balloon procedures only or FESS?

I’ve also been told that sinus surgery is only an adjunct to assist in ongoing topical therapy to control the inflammatory response, which happens systemically.

I have read on here from another person that they had balloon sinuplasty on their frontal sinus and has been having severe pain in that spot ever since and diagnosed with “Trigeminal neuralgia”.

Pain from the neck up is very complex and misunderstood.

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I'm not sure what all they did, this was 4-5 years ago. The nerves were damaged from chemical or infection before I ever had sinus surgery.

The frontal sinus is very close to the supratrochlear nerve but I was already having nerve pain in this area before I ever had sinus surgery.

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