I mentioned my health care team in my talk and I didn’t have time to mention or name the many people who are supporting me. I am incredibly fortunate that I live here in Vancouver and have access to all of these resources. The major take-away message is that not all health professionals are created equal. Errors or neglect by prestigious experts can work against you if they make quick judgements. The trail of erroneous records still bothers me but there is not much I can do about it.

I’ll start with my core traditional medical people who have helped me, especially with managing the MS and TN:

Neurologist – UBC MS Clinic
Neurosurgeon – Anthony Kaufmann, MD FRCPC
General Practitioner/Family Doctor – Dr. Karen Van Wyk

In addition, I have a couple of other chronic conditions — sinusitis and spinal stenosis that currently require monitoring.

Sinus Surgeon – Amin R. Javer, MD FRCSC FARS
Spine Surgeon – Dr. Marcel Dvorak

I also require excellent dental, optometry, and pharmacology support

Dentist – Dr. Ernst Schmidt, Pacific Spirit Dental Centre
Optometrist – Dr. Patricia Rupnow, West 10th Eyes
Pharmacy – Rudy Chin (owner), Ed, Amy, Rebecca, Pharmasave at 30th and Main

Alternative medical practitioners, some of whom were there to help keep me grounded and supported when I was ignored by traditional medical people in Vancouver.

Venoplasty surgeon – Michael A. Arata, M.D., Autonomic Specialists, Newport Beach California
NUCCA chiropractor – Dr. Michael Foran, DC, NUCCA Spine Clinic
Naturopath – Dr. Alexina Mehta, N.D.
Acupuncture – Jennifer Jellis, RAc KLINIK
Psychologist/Counsellor – Myrna Driol, M.A., R.Psych
Massage Therapist – Jessica Farrow, RMT, Owner of Honey + Garlic Health Studio

I am so fortunate to live here in Vancouver where the access to local, organic food, wild fish, and grass-fed meats is extraordinary. This summer with the increase in my energy, I am spending much more time at the markets as I can go to one or more on Wednesday, Thursday, Saturday and Sunday, depending on what I need.

Last week in the cherry line-up, I caught up with a kind doctor, a specialist in integrative medicine, whom I saw for several months in 2012 after my first hospitalization and before my official MS diagnosis. We both knew I had MS because of the first MRI that I had, so we started a few things to improve my health, including supplementing my Vitamin D. The one thing that made him stand out was when he apologized to me on behalf of his profession. He listened to me and apologized for the GI specialist in the hospital who wrote a shockingly-bad report, for my former GP who laughed at me, and for neurologist #3 who had done nothing to help me and was unable to bother doing basic diagnostic work. He also acknowledged that I had had great physicians supporting me, including Dr. Perry and Dr. Javer, the sinus surgeon.

Coincidentally, this morning as I walked into the market at Kitsilano Community Centre to buy a sockeye salmon for our traditional BC Day dinner, I recognized Dr. Javer from behind as he walked and talked with another person. When I heard his voice, I knew it was him. I quickly said ‘hi’ to him and told him I was doing very, very well. What a treat for me to see two doctors who cared for me and helped me at the farmers market. Perhaps the next time I’m there I’ll see Dr. Perry!

Over the past month or so, I had pain on my nose, then on my upper lip. These sites were associated with cold sores. Over the past 10 days, the pain has moved and is being triggered again in my mouth, especially when I eat. The painful spots are on the gumline on both sides of my upper teeth. When the pain breaks through, it throbs and includes my lower right tooth where I had gum graft surgery in January, 2011.

I saw an oral medicine specialist last week who diagnosed me with atypical odontalgia, or ‘phantom tooth pain.’ He told me that he didn’t think that the MS was related to the pain. I wrote an e-mail to him on September 15:

I am inclined to think that my pain is from the MS — however; you are the expert! I would be ecstatic to find that it was not connected to the MS but nothing else makes sense to me, unless a herpes simplex virus attack can induce this pain.

I had been hopeful that it was another sinus infection. I saw Dr. Javer briefly yesterday. Unfortunately, there was no infection. Funny that I had hoped for an infection — at least it would be treatable! He said all of my sinuses look good and healthy.

I started taking nerve pain drugs last week again. I am also using a topical ointment that the oral medicine specialist prescribed for me to numb the sensitive spots in my mouth. The drugs constipate me and the sensitive spots in my mouth are worse. The pain must be originating in my trigeminal nerve at the pons, the part of the brainstem where the trigeminal nerve originates.

I can’t stop crying. I am sinking into a deep depression. I am very lonely.

I made another appointment to see Dr. Javer as I was concerned about my ongoing congestion. It seemed to be taking too long to get past it after the recent cold.

There were two ENTs observing and helping out. One was from Kenya, the other from Saudi Arabia. Both of them are hoping to do the specialty training on a fellowship with Dr. Javer.

Dr. Javer noticed thick mucous in my maxillary sinus. He suctioned what he could reach with the scope and took a sample to send to the lab. There was additional thick mucous in the sinus ‘above the teeth’, the site of the cyst and chronic infection. He rinsed the sinus out twice, then put in additional antibiotics.

I’ll be contacted next week when the results come back from the lab if we need to do more to fight an infection.

Have I mentioned how fortunate I am to have a caring specialist like Dr. Javer?

I started having a few more nerve firings on my palate around late June and I’d have occasional short ‘zaps’ up my face or deep inside my head. I read more about nerve recovery and learned that nerve regrowth and healing can result in unusual sensations. So, I did my best to keep on with all my healthy routines and try not to get into a downward emotional spiral.

I had a sore throat last week and was gradually becoming more congested. Two days ago, I went to see Dr. Javer for a follow-up appointment. He looked in my left naris (nostril) with the 2.7 mm scope and said it all looked good. Then he went into the right and saw some mucous that he suctioned out. He was able to see into my maxillary sinus and he noticed that it looked inflamed, so he sprayed in some antibiotic directly. Since then, my symptoms have improved a lot. I have another follow-up appointment in two months. It feels really great to be working with a doctor who cares. I am so fortunate.

Yesterday morning I went for the follow-up MRI at 6:00 am. It was 20 minutes and it was stress-free. The results will be available in about 10 days but I’ll have to wait for the neurologist to return from vacation next month.

Last night I did a nasal rinse and for the first time had the sensation of ‘water-up-the-nose’ on the right side. Since the surgery, I have only had that ‘water-up-the-nose’ sensation on the left side. Early this morning I blew my nose vigourously on both sides and cleared a lot of mucous.

A few years ago, I would have been cranky with a cold. Today I have a cold with minor nerve symptoms — I’ve been running around doing errands and chatting with people and feeling pretty happy. It’s all relative . . .

We had good weather for the walk this morning. Our team raised $2445 for the Sinus Centre at St. Paul’s in only 12 days. Thank you!!!!

At the registration table, we ran into Adriane Carr, Vancouver City Councillor and Deputy Leader of the Green Party of Canada.  Adriane and I know each other through the Canadian Women Voters Congress. When I was President, we invited Adriane to be the Honourary Co-Chair of the Women’s Campaign School. We walked the 5K together and had a chance to catch up as I haven’t seen her since she was elected to council.

After the walk, we went back to the St. Paul’s table. I met another St. Paul’s fundraiser there, St Paul’s Hospital Foundation board Chair, David Poole. He is the Vice-Chair and Senior Vice-President, BC & Yukon, Scotiabank — the sponsors of the event. He has a killer handshake.

The event was fun and well-organized. It was a great way to celebrate my birthday this year.

UPDATE: Another contribution came in, putting us at $2495! Thank you all!!

FINAL UPDATE: Total — $2550 for the Sinus Centre!

This morning at 11:17, a donation came in that took me to 100% of my personal fundraising goal of $2000. I’m really pleased with this as I only decided to enter this walk/run 11 days ago. I asked almost everyone I knew for support as I know that you can’t raise any money unless you ask. I know that people get asked to contribute to so many things and people have many reasons for supporting or not supporting. I learned a few years ago from Terry Axelrod’s organization ‘Benevon’ that you make your pitch and if people say ‘no’ or don’t respond, you ‘bless and release’ them.

I am really grateful to all the people who sponsored me. I appreciate the support and hope that the Sinus Centre continues to thrive and help more people like me.

I picked up our t-shirts yesterday at the St. Paul’s Hospital Foundation office. We’ll be at Stanley Park early on Sunday morning.

My birthday is later this month but I’m not quite ready for a celebration. However, I have decided to celebrate by participating in the Scotiabank Group Charity Challenge to help raise money for the Sinus Centre at St. Paul’s Hospital. I was fortunate that this skill and expertise was available to me here in Vancouver. I am hoping to raise $2000 before the event on June 24. You can sponsor me here .

Here’s a bit more info about the Sinus Centre:

Based at St Paul’s Hospital, a major academic health science centre, the Sinus Centre provides vital care to patients of all ages, from every walk of life, and from across Western Canada and beyond.

In 2001, Dr. Amin Javer was recruited from the U.S. to transform sinus surgery at St. Paul’s. Dr.Javer performs minimally invasive surgeries, sparing patients facial scarring and pain, as well as long recovery times and hospital stays associated with alternate treatments.

Under his leadership, the Sinus Centre has become the most advanced and comprehensive of any hospital-based program in Western Canada. Every month, over 250 patients are treated and 30 surgeries are performed.  The Sinus Centre is also an active research and teaching centre, which ensures our patients receive the most up-to-date treatments.  Advancements made here have been adopted around the world.

Donors are key to the Sinus Centre’s leading care.  Their generosity helped St. Paul’s become the first centre in Western Canada with computer-assisted sinus surgery equipment that enables specialists to perform critical minimally invasive surgeries to correct chronic sinus conditions and remove tumours and pre- or cancerous lesions.

Feel free to contact me at 604-874-0797  or e-mail [email protected] if you would like to join my team.

I would greatly appreciate your support through my personal fundraising page .

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 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.