I attended the facial pain conference in Richmond, Virginia, with world-leading experts in diagnosis and management of facial pain. It was in Richmond, Virginia, on May 11 and sponsored by the TNA/Facial Pain Association in the US. I wanted to go because the neurosurgeon who wrote the chapter on the procedure I had, Dr. Jeffrey Brown , was going to be speaking. And there was also going to be a neurologist speaking who specializes in MS and facial pain.  If you are interested, you can read Dr. Brown’s chapter on ‘ Percutaneous Balloon Compression Rhizotomy ‘.

The neurologist from Johns Hopkins, Jason Rosenberg , was very interesting. I wish he had been my neurologist! He helped us to understand why it was so difficult for us to find people to help us as there are no ‘departments of facial pain’ and the most common complaint that neurologists see is migraines. So, the facial pain neurologists are likely to be headache specialists. There are only 422 headache specialists in the US. But what they need to do to be really helpful to us in the diagnostic process is to collaborate with a neuroradiologist and neurosurgeon. He said that he “still needs to make sure it’s [the pain] not from something else”, thus the importance of an MRI done quickly to rule out other problems. “Everybody [with facial pain] deserves an MRI.” He said it was his responsibility as a neurologist . He said that in general, neurologists stay away from facial pain. That’s what didn’t happen for me. I went the ‘right route’ but the neurologist who was the headache specialist worked independently, didn’t consult with other specialists and obviously didn’t take my pain seriously. (And he didn’t bother to look at either of the MRIs that he ordered. I still can’t believe that.)

Dr. Rosenberg also said that it was possible to have more than one thing going on at a time and it was important to understand the whole picture. For me, I had three things on the right side, a receding gum, chronic sinus infection and the brainstem lesion. All of them contributed to the chronic pain matrix, leading to anxiety, depression and post-traumatic stress. Yikes! And with chronic pain, it develops disproportionate real estate in the brain. He then showed a picture of a homunculus to show us the large sensory area our face takes in the brain.

This 3-d image shows the relative sensitivity of body parts. The hands and face are the most sensitive parts of our bodies.

Dr. Marcus Rice, from Virginia Beach, was the neurologist from the MS Center of Tidewater. He said that 2% of people with Trigeminal Neuralgia have MS. And 2-4% of people with MS develop TN. It is rare as a presenting symptom, and if it is a presenting symptom, patients are considerably younger. (Neurologist #5 my MS neurologist, and I discussed this the last time I saw him, two days before this conference. I now refer to myself as a ‘freak of nature’ as I am really rare, although my real presenting symptoms were long-term and subtle.)

Dr. Rice said that the TN pain may persist cyclically, even when the MS appears otherwise in remission. That was interesting for me to hear as there has been no change in my MRIs from July 2012 to March 2013, yet I had the severe pain in November/December 2012. He says that there is some hope that with advances in MRI imaging that the more subtle changes may become detectable. Hospitalization may be necessary when there are problems with eating.

Over and over again, each specialist presenting talked about the importance of an accurate diagnosis. Yet, it seemed to me that I was still relatively powerless to move the system or to get answers. With complex cases, Dr. Rosenberg said “we don’t want to write people off” and Dr. Brown said it’s important to “step back with a new set of eyes and rethink”, which would include consulting with other colleagues.

I met two other women there who had MS. One was managing her MS with modifications in her diet and no drugs. I didn’t get the full story of her facial pain. The other one was from Florida and she had many treatments and was doing everything she could to stay out of pain, which meant keeping abreast of any developments in the area.

Many of the people there had nightmare stories of misdiagnosis and mistreatment. Most of us went the dental route first. Yet, many of us found that our dentists were more knowledgeable about trigeminal neuralgia/facial pain than medical doctors/specialists. As much as my sister in New York complains about my lousy treatment in Canada with ‘socialized’ medicine, I heard nightmares from wealthy people who had excellent medical coverage in the US. We just happen to be among the unlucky people with difficult to diagnose and treat excruciating pain.

After lunch, we had a patient panel, then breakout sessions with the presenters. I had wanted to talk a bit more with Dr. Rice, but he had to leave, so I sat in on Dr. Brown’s session. I wanted to know what my options were if my pain recurred. He just said the best thing to do was to repeat the balloon compression rhizotomy. He told me of one of his MS patients who has had four procedures. That’s what I needed to know.

All in all, it was a good conference. It was a great opportunity for people with facial pain — and their families — to meet and learn from experts in the field. I met the president of the board of the TNA/Facial Pain Association who encouraged me to consider joining their board. I was flattered, of course. But I have the bigger picture of MS to consider and I am no longer interested in doing board work.

I was asked last month if I would be interested in telling my story in the hopes that we could get some media coverage in Vancouver about the MS Walk on April 28. I didn’t see anything, so it appears that the Vancouver market is a hard one to crack. There were articles in lots of the suburban community papers, but we were unsuccessful getting anything into the Vancouver Courier.

Stephanie Snowden, a recent SFU grad, wrote this article after reading my website and asking me a few questions. I think she did a nice job.

Vancouver Speech Pathologist takes the Reins against MS

VANCOUVER – On November 15, 2012, Jennifer Sweeney – who worked as a speech-language pathologist in Vancouver– was officially diagnosed with multiple sclerosis (MS) after suffering for years with undiagnosed physical problems and pain. Dissatisfied with sitting in the patients’ chair, Sweeney has taken her unique knowledge and experience to encourage the fight against MS by leading a team in critical fundraising efforts.

Like many Canadians impacted with MS, Sweeney’s diagnosis was a long and frustrating experience. “I don’t know if you can imagine how hard it was for me to sit in a third neurologist’s office as he told me that I didn’t have MS,” said Sweeney, “having studied the brain and worked with people who have had strokes and brain injuries at G.F. Strong Rehab Centre, I was able to identify some of the classic lesions seen in MS easily [after viewing the first MRI].” When doctors were finally able to establish the cause of her symptoms, Sweeney states she was grateful, as it gave her answers to physical problems that persistently affected her.

Though only recently being diagnosed with MS, Sweeney is an advocate for finding ways to end the disease, supporting others to understand and cope with the chronic and sometimes disabling disease. Currently, she is leading one of the top fundraising teams, “Kits Kruisers”, in the 2013 Scotiabank MS Walk in Vancouver.  The Kitsilano MS Self Help group set an initial goal to raise $6,000 to support the work of the MS Society, but has since surpassed their objective by more than 100%, generating over $15,000 in donations and pledges to be used for research and support programs.

“For me personally, I wanted to participate in the Walk and do all I could to raise money to thank the MS Society for being there for me when I needed them,” says Sweeney, “I suffered a lot before being diagnosed and it helped to have access to the support group and the educational sessions hosted by the MS Society.” The 2013 Scotiabank Vancouver Walk will occur on April 28 ^th at Ceperley Park in Stanley Park. This year’s goal is to raise $1.2 million in BC and the Yukon to support the MS Society of Canada’s mission to be a leader in finding a cure for MS.

I walked over to GF Strong today for a meeting of the Trigeminal Neuralgia Association of Canada local support group. The group meets a couple of times a year. We learn so much from other people’s experiences. There is nothing as validating for all of us than to be in a room of people who know EXACTLY what you’ve been through and how much suffering and pain there is with this condition.

Today I met another woman with MS. She was diagnosed 50 years ago with MS but the TN was a later symptom. I can’t remember how many years of pain she has had but she had a rhizotomy here in Vancouver last year. She did say that 2012 was a hellish year for her and she ended up on the psych ward as she was looking for a way to end the pain and she insisted on being seen when she went to emergency. She was funny and told us that it was worth it as she had a private room and bathroom. She also said that the other MS symptoms were nothing compared to the TN.

There is another woman who is about my age who has pain and other strange symptoms that led me to believe that she likely has MS. She is taking steps to investigate further.

It is such a beautiful and warm day today! It’s currently 23 C or 73 F. Just a few days ago it was chilly.

Daniel has prepared the front porch for our inaugural drink of the season. Life without pain is a blessing, even if things don’t taste like they used to.

The past 10 days have been full — after Miriam arrived, things accelerated. We visited a cousin of Betty’s — our first cousin, once removed — last Friday. Betty died later that night. On Saturday we went to clean out Betty’s room, then went to the funeral chapel, then St. Augustine’s. Sunday was the MS Walk. Later, we helped Daniel a bit with the casket. I spoke to the priest and we the only day he could do a funeral was Tuesday morning. From then on, it was go, go go — obituary, casket prep, funeral prep, burial prep. On Wednesday we ordered a grave marker, then drove Miriam to the airport. Yesterday was a rest day.

So much happened and such interesting history. I will write more over the next couple of days.