The single biggest problem with communication is the illusion that it has taken place.
— George Bernard Shaw

A good friend once told me that she thought I was one of the bravest people she knew. I wasn’t feeling brave when the pain made me shrink from life. Now that I’m ‘coming back’ I realize that she was right. Being where I am now is due to my courage and my belief that I would find help.

I learned from an early age that it was a powerful thing to intervene in violent situations by being brave enough to bear witness to the violence. I travelled through Europe for a year alone when I was 22 and had a few challenging situations to deal with. A few years later, I successfully intervened in a mugging in San Francisco. About seven years after that, while living in Olympia, Washington, I was able to scare off a serial rapist in my apartment when I was stark naked. I challenged myself personally and professionally to have difficult conversations and learn how to ‘lean into’ conflict and not run away from it. I founded a not-for-profit charity and guided it gracefully through its dissolution and transfer of its assets to another organization. These are not the actions of a vulnerable woman who is a victim.

So, what happened to me? Chronic pain . . . yes. But I had a strong desire to work with medical professionals to find out the cause of the pain and treat it. All I could do was record and report my symptoms. I have no formal medical training and do not have the ability to order tests for myself. That’s when I became vulnerable. I needed help. My symptoms were ‘unusual’ and ‘atypical’ — and invisible, unless you knew where to look. The gastrointestinal problems I believe were secondary to stress from chronic pain associated with eating. I do recall having a conversation with Dr. Bressler last November when I told him that there was something wrong with me and that my GP thought it was ‘in my head.’ Of course, the irony is that the problem was literally ‘in my head’ — it was in my sinuses.

Once my GP had written me off, I was on my own to access care. It’s why I needed to go to emergency to get admitted to the hospital. The doctor who consulted on my case upon my admission — who was not a psychiatrist — decided I had a ‘psychogenic problem/conversion disorder’ and wrote a report that was so full of errors that it would be laughable if it weren’t so damaging to my care. After receiving my medical records in the mail on April 13, I understood why nobody really listened to me when I was in the hospital.

In 2003, Daphne Brahman of the Vancouver Sun wrote an article about me and my work with people who have aphasia. I told her about my recurring nightmare.

. . . she began having a recurring dream that she was aphasic. “I was talking and nobody was listening and nobody was understanding. People were looking at me blankly. It’s my own personal nightmare that I have tried to embrace and understand.”’

Little did I know that you could be fully competent in mental and communicative status and still be ‘unheard’. Being a woman, you’re more likely to be dismissed as having a psychiatric problem. Once you have that label, you are not heard.

I’ve survived my nightmare.

One year ago today, I entered a new stage of pain, with bouts of pain up to 30 minutes at a time. The first pain occurred suddenly while I was having a bowl of lentil soup for lunch before heading downtown to see a client. I cancelled the client after the pain subsided. These pains continued through to mid-July. I was having acupuncture while waiting to see a neurologist. I did my best to be strong throughout all of this pain.

When I got up this morning, I turned on CBC to listen to the “Sunday Edition.” I decided to make the muffins that Dr. McPhie recommended to me. They turned out quite well. My husband is usually the one to make muffins in our house but he’s in Quebec at a family reunion, so if I wanted muffins I had to make them myself.

Later I went grocery shopping on Main Street. At Heritage Hall, there was a market hosted by Blim . I met some nice young women there who had some interesting cards that really appealed to me.

After I purchased them, they offered me a bonus card that I could choose from a fanned-out pile. The card I chose was “Gratitude.” I told them I had much to be grateful for.

Their website is Little Treasure House.com . The artist describes her inspiration. “Giving makes life worth living. Whenever you give a Little Treasure, right then and there at the perfect moment, you make the power of your own heart visible and tangible in an another person’s heart… that is the power of living” Perfect!

When I first developed facial pain and had the diagnosis of ‘trigeminal neuralgia’, I did what I could to learn about the condition and treatments. I joined the TNA/Facial Pain Association in the U.S. as well as the Trigeminal Neuralgia Association of Canada . When I joined the US organization, I ordered a copy of the book “Striking Back” which provides comprehensive information about the condition and the variety of treatments. (I received another free copy this year when I renewed my membership and I donated it to the Vancouver Public Library . I’m glad to see it’s being catalogued right now.

Anyway, I have read a ton of stuff about nerves and diagnosis and treatments. I’ve watched the education sessions from the conferences available through the TNA/Facial Pain website. I considered going to the Centre for Cranial Nerve Disorders in Winnipeg for surgery if it was indicated. My sister wanted me to go to New York where I could get the best diagnostic evaluation done. She and I were both frustrated with the lack of local resources or even interest in investigation. I had specifically requested a referral to the neurologist I was seeing as he came highly recommended by the local support group, yet he didn’t seem to have a lot of tools for differential diagnosis other than the MRI. Classic TN is pretty easy to diagnose. If you have ‘atypical’ TN, it’s not as clear. I had great hope when I saw the neurologist that he would say ‘yes, I’ve had people with your problem before and it’s _____ .’ That didn’t happen. Instead, he would look at me with a puzzled expression on his face, then write a note to my GP.

When you are at the mercy of doctors to order tests or prescribe drugs or help you with pain, you are in such a vulnerable position. You get the feeling that they start to categorize you as needy and perhaps think of you as having Munchausen syndrome . The last time I saw the neurologist on February 14, I told him that nothing would make me happier than to never have to see him again.

I had five weeks to wait for surgery.  If I wanted to cancel, I was instructed to do so two weeks before the scheduled date. I went back to the book “Striking Back” and read everything they had on sinusitis.

Dr. Parker E. Mahan, a dental professor emeritus at the University of Florida, says the starting point is figuring out whether the pain is originating in the trigeminal nerve or merely being transmitted through the nerve from some other part of the body.

“All other tissue — bone, teeth, muscles, skin, glands — send signals through the nerves,” he says. “So, it is important to ask, ‘From whence does the pain come?”

On that same page, there was a story of a woman who had congenital sinus problems and was able to reduce her pain significantly with sinus surgery. She says “my own conclusion is to keep an open mind and remember that the cranial nerves can be irritated for a variety of reasons, just like the other nerves in the body.” One of the board members of the TNA/Facial Pain Association tells of her story with Haller cells in the sinuses and her successful surgery.

I posted a question on the TNA/Facial Pain support group page and received a response from a woman in California who strongly recommended I not have surgery. However, she did suggest that using prednisone to reduce inflammation of the sinus nerves could give some valuable information. If it failed to do so, it would be more definitive of TN.

I continued my research. I contacted a specialist in New York and I wrote a series of questions  to Dr. Javer. He had operated on people with trigeminal nerve pain before and it was usually from inflammation of the nerves from infection. I also asked him if the surgery would help with the frontal sinus as I had sensitivities on the ophthalmic branch of the trigeminal nerve. He replied that he believed they would be opening the frontal sinus as well but would review with me pre-surgery after re-reviewing the CT scan.

I found this abstract and took it to heart.

Trigeminal neuralgia associated with sinusitis.

Sawaya RA .

Source

American University Medical Center, Beirut, Lebanon. [email protected]

Abstract

When a patient presents with trigeminal neuralgia, one usually thinks of a vascular loop at the root entry zone of the nerve and consequently of vascular decompression. An image of sinusitis on the MRI may be considered an incidental finding. We present a case of an elderly woman who experienced severe neuralgic pain in the distribution of the trigeminal nerve on the left side following a mild upper respiratory tract infection. Routine MRI revealed severe sinusitis with no pathology in the brain. Following antibiotic treatment for the sinusitis, the symptoms of the neuralgia resolved completely and no other therapy was necessary. A review of the literature reveals a wide variety of etiologies for trigeminal neuralgia. A vascular loop compressing the nerve may be the most frequent cause of trigeminal neuralgia. Nevertheless, other etiologies must be considered prior to decompressive surgery since some can be treated medically.

Then I read some more about neuritis. From “Striking Back”:  “Trigeminal neuritis is often described as dull and burning, sometimes with tingling, numbness and/or hypersenstivity in the affected area. It can occur in any area that the trigeminal nerve serves and it’s always a constant pain, not fleeting as in classic TN.” What was interesting to me is that I had all of those sensations at different times, plus the shooting pain at other times. I also knew that the nerves would scream until I paid attention to the problem, i.e., the source of the pain.

There were no promises or guarantees that all of my pain would be gone or that the sinus infection was the cause of all of my pain. I did know that the more pain you introduce into the system, the more likely it is to overwhelm the nerves and cause them to misfire.  I consulted all of my therapists and asked family and friends for prayers and support.

Once I started the pre-op prednisone and had reduced symptoms, I became more confident that it was a good decision. I knew there were risks and possible damage to other nerves, including the optic nerve. I am legally blind in my left eye — my right eye is my good eye. I was willing to accept the risks as I would prefer to be blind than to live with the pain.

I had another surgical follow-up appointment today. Dr. Iain Hathorn, Sinus/Skull Base Surgical Fellow, scoped me with the 2.7 mm scope to assess my recovery and healing. He reports that everything looks good and the sinuses are open. I can continue to rinse with the Manuka honey rinse, about once a week. Dr. Hathorn will not be at my next follow-up in two months as his term is ending and there is a new fellow who has just started. I know he learned a lot and I hope that he can help lots of people like me. When Dr. Javer joined us, I was able to take a photo of my two surgeons. I always have so much I want to say and such gratitude I want to convey. I’m still quite teary as I think about what an experience this whole thing has been for me.

My ‘camera guy’ is out of town, so I’ll do a written update of my symptoms. Each day things get a bit better. The nerve sensations are really reduced. The spot on my alveolar ridge is almost back to ‘normal’. I get a few small nerve sensations sometimes when I touch my philtrum (the little groove between the nose and upper lip.)  And I get a bit more diffuse small nerve sensations when I blow my nose gently. I’m looking forward to the day when I can blow my nose vigorously. I can be patient as it takes nerves time to heal. I am still pain-free and drug-free.

Tonight is the YWCA Women of Distinction Award Dinner. What a joy that I can go and not worry about pain!!  Thank you Dr. Javer.

On March 12, Daniel and I went to False Creek Surgical Centre to meet with Dr. Javer. I told him a bit of my history and provided him with a couple of reports. I showed him the cone-beam CT scan and he showed us the cyst above my teeth. He said it was likely infected. Then he said to me, “you’ve probably been in a lot of pain.” (Once identified by someone who knows how to read the images, the cyst is obvious. On the image from Orbit Imaging , looking at the bottom row, you can see a circle that is a cross section of the cyst.)

I started to cry because this was the first time my pain had been acknowledged and validated by somebody in “conventional” medicine. And this was somebody who could probably help me. I knew that he was one of the best sinus surgeons in the world and it was such a sense of relief that he saw something worth looking at. Dr. Javer recommended that we get a CT scan of all the sinuses and meet him again. What still amazes me is that the CT technician worked through his lunch to do my scan and I met with Dr. Javer right afterwards. All in the same day!

Dr. Javer asked me when I had broken my nose as my septum was so deviated. He showed us the difference between both sides and described what a healthy sinus looks like. He was able to see problems in the ethmoid sinus as well as the maxillary and recommended surgery to remove the infection. He scoped me with a 2mm scope that confirmed what we saw in the CT scan, mainly that the right side of nose couldn’t accommodate the very small scope.  I was eager to have the surgery as soon as possible. I was given the choice of having the procedure done privately or publicly. I could book a private procedure in 5 weeks. A public procedure would be at least 3 years. With the anesthesiologists threatening job action, it was likely to add more time to these ‘elective’ surgeries.

CT scan (coronal view) — slice with the face forward clearly showing the infection in the right maxillary sinus.

CT scan (axial view) — slice from the top of the head to the level of the nose showing the deviated septum.

Another five weeks to wait. With hope, anything was possible.

I first saw Myrna Driol in 1992. I was referred by my great GP. (That  GP closed her practice in the late 90s and I haven’t had much luck with GPs since then, although I’m really liking the new one I started with on January 30, after leaving the doctor who laughed at me when I was in pain.) Myrna and I did great work together and she helped me deal with a lot of the traumatic events that shaped me when I was a child and young adult. I saw her again after a rape attempt when I was working in the U.S. And I did additional work with her when I found my biological family 1n 1997. I last saw her in 1998 when we both believed our work was done. So, I was really happy to learn that she was still practicing when I contacted her for help in early November.

Myrna helped me tap into my strengths again. One of the best things we did this time was to develop a ‘pain advisor’ — a place to go and ask questions. My ‘advisor’ was very wise . . .

When I was in the hospital, they started me on a drug called gabapentin that I hadn’t taken before. That was December 29. Previously, I had taken a drug called Lyrica (pregabalin) as well as Tegretol (carbamazepine) in May/June 2010 that gave me hepatitis. Upon discharge, the doctor in charge of my care encouraged to take as much gabapentin as I needed as the maximum dose — for those who can tolerate it — is high. I had a fair bit of swelling in my legs with it and later with my hands, even at a low dose. I had another series of botox injections on February 14, then weaned myself off of the gabapentin because of the amount of swelling.

I wrote to my neurologist on March 5.

Since Feb 14 botox- able to enjoy a few days of ‘drug holiday’ but pain is now breaking through regularly, especially when eating.
Feb 17 – decreased Gabapentin 200 mg tid to 100 mg tid
Feb 21 – bothered by swelling of legs, so went off Gabapentin
Feb 25 – pain returned, started Lyrica 75 mg bid
Feb 28 – unexplained bruise on finger, decided to take Lyrica prn
Mar 3 – pain returned, back on Lyrica tid
Mar 4 – lots of pain all day

I’m not sure what to do at this point as I used to get quick relief from the drugs but I’m not getting reliable relief now and suffering a lot of pain, even with botox plus drugs. I have to eat to keep my weight up but eating is ‘torture’ right now. I wear a palate protector that helps a bit.

Not receiving a quick response, I followed up with another message two days later to explain a bit more:

Is there anybody else in Vancouver that Dr ____ can refer me to so we can figure out the source of my pain and ways to deal with it?

I’m suffering a lot and need help. Eating is very difficult as I get burning pain up my face. The mouthguard I had custom built isn’t protecting me as much and I have to eat with my head sideways to keep food in the left side of my mouth to minimize the pain although it’s still significant.

I received this response on March 7.

Dr _____ says that you need to see an orofacial pain specialist. As Dr _____, who you saw previously, is no longer in practice, he recommends that you ask your GP to refer you to the OroFacial Pain Clinic at VGH, under Dr. Eli Whitney.

So, there I was, back to the drawing board. The first doctor I saw in May of 2010, that I paid for privately, no longer in practice and the doctor I was being referred to has a waitlist of one year. I was five days away from the appointment with Dr Javer.

I started to use a toothpaste for sensitive teeth and that helped a bit. I continued to eat sideways and did my best to keep eating.

While waiting, I read everything I could about sinuses, facial pain and sinus surgery. These were difficult and miserable days.

I had the appointment at Orbit Imaging in Richmond on February 9.  We received the results on February 16.

Radiologic impression:

1) Extensive pneumatization of the right maxillary sinus in the region of 16 and 17, particularly inter-radicularly reducing the amount of bone volume for implant placement.

2) Polypoidal mucosal thickening of the floor of the right sinus — intrinsic sinus disease.

I did a little search for information on sinus disease and facial pain and found that it was a possibility. I e-mailed the photos and the report to my neurologist, excited that I had found something that could account for the facial pain I had been experiencing — at least something that was worth investigating further, especially as my case was considered to be ‘atypical’ or ‘idiopathic.’

I received this response from his office on February 17:

Dr __ says that the changes reported on the dental x-rays are minor and do not cause your facial pain or other symptoms.

They are commonly seen in patients with no symptoms of anything. He does not believe that seeing ENT will help, but you are welcome to discuss this with your GP.

As soon as I received that response, I asked my dentist to contact him to encourage him to make a referral to ENT, as I believed a referral from one specialist to another could be done quickly. She didn’t think she would be able to convince him but she did encourage me to see my GP and get a referral to an ENT as she couldn’t make the referral for me.

All I knew was that these results called for a second opinion. I also knew that it would take me a couple of weeks to see my GP, then who knows how many months before I could see an ENT. I took a look at False Creek Health Care Centre to see what my options might be for a private consultation. When I saw that there was a sinus specialist available, I was really happy. I called and booked an appointment to see Dr. Javer. It was a five week wait to see him — appointment booked for March 12.

As a backup, I also made an appointment with my GP and managed to get a referral for a consultation with Dr. Javer in the public system. That appointment was booked for November 7. I also learned that there was a 3-4 year waitlist for sinus surgery.

I first  saw Dr. Foran on September 13 for an initial consultation. While I was booking a follow-up appointment at the front desk, I had a bout of severe pain. He looked at me with compassion and asked me if I wanted to wait while he reviewed my x-rays before he could make an adjustment. He stayed late to do this for me as he knew I was leaving on a trip in three days and he wanted to help. He made an adjustment to my cervical spine and I felt immediate improvement. I was surprised but very happy. I had one more adjustment before going away.

After my return, I started seeing Dr. Foran regularly. I learned that my cervical spine was ‘corkscrewed’, meaning that my first vertebra was off centre in one direction and the second vertebra off centre in the other direction. With each adjustment, I would improve but I knew that the problem I was having with reflux was also having an impact on my pain.

After learning about the cone beam CT scan for the teeth, I spent a fair bit of time searching for a local dentistry service that could assess my teeth.  I found one in Portland, Oregon, and was considering going there as I could get an appointment quickly. I was at Dr. Foran’s office on February 6 grumbling about the lack of local resources and my frustration. He called his intern into the room because he recalled that she knew of a company that did  cone-beam CT scans of the teeth. I left the appointment with the names and phone numbers of two local companies. I needed a referral from my dentist, and three days later, I was at Orbit Imaging in Richmond for a CT scan of my upper right posterior molars.