Just a quick update for those people who read my blog to find out how I’m doing.

I continue to have problems with digesting food. I am losing weight again. I suspect this is more of a problem with my small intestine rather than the large intestine. I have been taking high doses of Nystatin to try to eliminate the candida infection in my intestines.

I had a severe pain in the right side of my face four nights ago. I increased the dose of nortriptyline to help with that. I have been working with a few new professionals to try to get things back on track but I am starting to get discouraged.

My left foot and leg are getting weaker. I continue to have difficulty sleeping. If I were stronger and digesting food, I think I would be doing better but I’m in bad shape.

When I first started the idea of writing about great life experiences, I was not feeling well and figured I’d never feel great again as MS is a terrible disease. I wanted to leave some evidence that I was HERE and I LIVED a life. The best I could hope for was not to get worse and that’s why I started the drug treatment. Little did I know that some of the people and ideas I encountered along the way would provide me with much more hope and some actual healing. I got to the point where I thought I might be one of the lucky ones who figured out how to stop attacks.

Now that I am suffering another brain stem attack so similar in many ways to the one in 2011, I realize I was wrong. Did I do something wrong? Exposure to gluten or dairy? Stress? Surgeries? Exposure to toxins? Re-stenosis of my jugular veins? I was tolerating the drug well but the only things that really made a difference to how I felt were the TVAM/CCSVI procedure in California in February 2014 , and the change in my diet following the example of Dr. Terry Wahls. After the TVAM/CCSVI, my energy improved, my blood pressure and pulse normalized, my hands and feet got warmer. I tolerated heat better and actually began to sweat.  With changes in my diet, I had quite a remarkable two years, ate food and enjoyed so many things in my life again that I thought were long gone, including exercise, swimming, riding my bike and hosting dinner parties with friends! I even had a glass of wine once or twice on very special occasions. Yet these times were interspersed with episodes of recurring trigeminal neuralgia, pain, stress and trips to Winnipeg for surgery.

Last summer, I recall saying to Daniel that it almost felt like the MS was gone. I was doing a lot of fun and interesting things. I felt mentally sharp. My feet felt normal and the feeling was coming back to my face as the rhizotomy healed. The only thing that persisted was a bit of tingling in my hands from the C5-6 spinal stenosis. But it wasn’t getting worse and actually had shown some signs of improvement with the annual MS MRI scans, plus I was seeing my chiropractor regularly and physiotherapist occasionally.

As I may not have time to go through all of the great experiences and scan photos, I’ll list them in the next post.

September 4, 2013

Dear Dr. X:

I was hoping to be able to find you as I wanted to update you on what has happened since we last met. When I saw that you were a neurology resident, I thought it was even more important that you know the outcome of my story.

I first saw you for my concern about gastrointestinal complaints (severe constipation, reflux) and weight loss at the (hospital A) ER department in October, 2011. Almost three months later, I saw you again after I had been admitted to (hospital B) for more of the same. In addition, you may recall that I had trigeminal neuralgia that my former neurologist called ‘idiopathic’ without having truly investigated the cause of the pain.

You wrote the discharge summary from (hospital B) and you did a good job on it with the information that was in the chart that I have reviewed. You said that I was given the assurance that there was no underlying patholog y. But I am disappointed that you didn’t chart at all about my numb feet . I clearly recall telling you about the numbness.

I had been trying for months to get help as I knew there was something seriously wrong with my body but nobody would really listen to me. Unfortunately, this happens to a lot of people, mostly women. Once the team at (hospital B) decided I was mentally ill with an eating disorder, I knew I wasn’t getting anywhere. I knew that I had not been fully assessed. I did have hope when I saw you again as that’s when my general care did improve – perhaps Dr. F didn’t like me. Although, I imagine it must be difficult for all concerned who had to ‘care’ for me when they must have thought I was just doing all of that to get attention. None of you had any idea how much I had suffered and how much more suffering I was going to have until I got a diagnosis and some help. You will probably never, ever experience that type of pain in your life, even on your deathbed.

After my discharge from (hospital B), I went to see the GP I had been seeing for only a couple of months. He laughed at me and mocked after he received the reports from (hospital B). I quickly found a new GP and things started to turn around after that.

An MRI in May 2012 revealed evidence of demyelination. I had to chase down Dr.(neurologist #3) for the recommended follow-up MRI in July, then I had to bypass him to get myself referred to the MS Clinic. Dr. (neurologist #3) saw me on October 9, 2012, and told me I couldn’t have MS if there were no changes in my muscle strength or reflexes. He was wrong.

It was at UBCH Urgent Care in November 2012 where I was finally was seen by some doctors who decided not to go the psychiatric route (as chosen by hospital B) and admitted me for pain and brought in a neurologist right away. Dr. Silke Cresswell, neurologist, advocated for me to be admitted. I was diagnosed quickly with MS and the brainstem lesions from the MRIs that (neurologist #3) ordered – but never looked at – were consistent with my major physical complaints. (left medulla, right pons)

As I tend to be very sensitive to drugs, I developed an allergy to phenytoin. I was unable to control my pain with pharmaceuticals. I then had to go to Winnipeg for a balloon compression rhizotomy that has taken me out of pain for now.

I am hoping that my case will be of benefit for medical professionals to learn more about MS and its interesting presentations. I have learned that many of us with MS are misdiagnosed with psychiatric conditions before our concerns are taken seriously.

I have outlined my case in great detail on my blog at my website, www.jennifersweeney.ca As I haven’t been able to work in my profession for a while, I converted my professional website into a personal site with my online medical record.

I invite you to look at it and perhaps to share it with some of your colleagues. I should not have been left as long as I was without a brain MRI, especially with the facial pain, as it could have had multiple etiologies, including a brain tumour.

You were nice to me and I appreciated that. I have hope that you will be part of a new generation of neurologists that combine good bedside manner with superior diagnostic skills. Please don’t hesitate to order MRIs, read the reports and insist on looking at the images yourself. It may be time consuming but you may spare somebody the suffering I have been through.

I’ve included a copy of my MRI from March 2013 for you to review. It’s amazing to me that I can have that many lesions, including old (cavitated) ones and dark holes and still be able to go through a physical exam with no observable evidence of MS. In order to get to the diagnosis, a doctor would actually have to listen to me – and look at the MRI.

Thanks,

Jennifer Sweeney, M.Sc.
Vancouver, B.C.

www.jennifersweeney.ca

I have been having occasional bouts of insomnia in recent weeks. While I have been able to keep active with all my activities, including volunteer patient sessions and workout classes, I was concerned that it might affect my health.

I went to see my neurologist for my annual meeting on April 14. He was encouraged as the lesion at C1 had disappeared. He said it was good news as it indicates that I am able to heal. We will schedule another MRI for next year. I told him I had stopped the drug Tecfidera because of increased risks of PML.

I also had several really good volunteer patient sessions and even had the chance to catch up with the Dr. who was my first ray of hope throughout my ordeal, Dr. Silke Cresswell. She was pleased to see me looking so well. She remembered my case very clearly and told me she felt so bad for me as my suffering was acute.

About a week ago I started to notice that the roof of my mouth on my left side was feeling a bit numb. this has progressed to include my lips. And on Thursday evening, I had a small shock under my left eye. This is the potential nightmare with MS — having TN on both sides of the face. I know the routine. The first time I got shocks on the right side of my face, I had a full year before I had excruciating pain. But at least now I know where to turn for help, I know which drugs work and don’t work for me.

I sent a message to my neuro and we’ll be having another visit in October to discuss options. That will give me time to think a bit more about it.

Over time, my life gets smaller and less engaged. And I’m still ambulatory and nobody can even tell I have MS. Each year it gets harder and harder to ask for donations for the MS Walk . You don’t want people to donate out of pity but it is so easy to be forgotten. That’s another post for another day.

The best donations are the regular ones who give every year right away. And some of them send the most beautiful notes, like this one:

“You have our support my dear friend. You are a hero and inspiration to all.

And yesterday I received an unsolicited contribution from a staff member at my old high school. That was extra special. I’m not sure how she found me but it was a pleasant surprise.

I’ve been thinking a lot lately about the many challenges people encounter when they have the great misfortune of experiencing the facial pain of trigeminal neuralgia. A few times each month I am contacted by people who are experiencing the pain of MS-related TN and looking for help. Some of these contacts are made through the TNAC (Trigeminal Neuralgia Association of Canada) and others find me directly through my website/blog.

I listen to the stories of the difficulty in finding medical support as so few people in the system know anything about TN. And even if they do, they don’t really understand how painful it is. It disappoints me whenever I encounter a professional working with people who have MS who don’t get it at all. I remember being at the MS Clinic and getting information from a nurse about drug therapies. When I mentioned the TN to her she said that she had heard it was like a bad toothache. My eyes popped out of my head when she said that and I broke down crying right there, telling her it wasn’t just a toothache — it was like being electrocuted in my head. She looked surprised but I was really angry that she was so quick to minimize it.

Another time I was at a conference hosted by the Lower Mainland Chapter of the MS Society. One of the guest speakers was a doctor who was a physiatrist, a specialist in physical medicine and rehabilitation. He mentioned trigeminal neuralgia in his description of the neuropathic pain that a person with MS may experience. He said it was like a burning in the face. Oh, is that all, I thought to myself. As the room was full and I was in the back, I opted to write out my feedback to him and asked him to make sure he learns a bit more about TN as I was really quite offended.

Then there was the time that I visited another friend with TN in the hospital. I spoke to his nurse about his TN. She asked me to spell “trigeminal” for her. I wondered how she managed to become a nurse without learning the names of the 12 cranial nerves.

So . . . if these local health professionals and experts are in the position to disseminate information about TN and to “educate” people about it, is there any wonder that people in the system who have many other things to know and learn about don’t know enough about it to be empathetic? If health professionals don’t understand the intensity of the pain, they will be treated with “callous neglect” as one of my TN friends describes it. And we end up being “treated” for “depression” and “anxiety” — who wouldn’t be depressed or anxious from the pain and neglect and sometimes abuse as I experienced?

I have been in conversation with a couple of people at the national office of the MS Society as I think we need to raise the level of conversation and get people some understanding and also some help. Fortunately, it looks like they will be doing a series on pain and my story will be featured in the first article.

I would also really like it if we had a national centre of excellence for TN. I am consistently referring people to Winnipeg and Dr. Kaufmann’s team as it is the only setting that treated me like a full human being. Isn’t that how we all want to be treated when we need help?

I realize it’s been almost two months since I last wrote a post. As we enter an early spring, things are getting back to normal. My energy is good, I’m back at the gym, and my social life has actually been more active. It took a while for me to move past the last trauma of the pain and the surgery. The facial numbness is profound and strange but there is no pain. For the first month or so I had a few strange nerve sensations that gave me some anxiety but they seem to have settled down.

I decided to leave the business partnership I entered into last year as I realized I just didn’t have the drive to help people in the way I used to, especially after the last surgery. I continue to volunteer for the MS Society by facilitating a monthly group on The Wahls Protocol. I am so also a volunteer for the Trigeminal Association of Canada for people in BC, as I am occasionally asked to correspond with people who have TN from MS or people who are considering going to Winnipeg and Dr. Kaufmann for help instead of waiting for 2-3 years for Dr. Honey here in BC.

I have lots of ideas about things I want to do. So, rest assured that I am still here, I’m doing well, and incredibly grateful for my good fortune with my home life and my team of support.

I was contacted this past week to participate in the volunteer patient program at VGH again. I had a session with neurology students and the instructor was the head of the MS Clinic at UBC. The next day I had a session with second year medical students taught by a wonderful neurosurgeon who really gave me the opportunity to tell my story. He was very interested in my surgery and he understood that it indicated that the TN I had was profound as it is a rare procedure.

Upcoming are my annual MRI on March 12, a speaking engagement for the meeting of the Trigeminal Association BC Chapter meeting, tentatively scheduled for April 2. And I get to see my lovely neurologist on April 14.

Just to let readers of my blog to know that I had a very good experience yesterday at the other large hospital in town. I went in under the advice and counsel of my lovely sinus surgeon, Dr. Amin Javer . I spent the day there and they analyzed the fluid from my nose — and they gave me specific instructions on how to do it, how much to gather and what to do with it. I had blood drawn. And then I had a specific CT of my head done according to the Javer protocol.

When Dr. Javer was finished his surgeries for the day, he and his resident explained their findings. No evidence of cerebrospinal fluid in my nasal dripping, no sign of problems in any of the potential leak areas in my head. And Dr. Javer explained that the cutting of the trigeminal nerve has affected my parasympathetic nervous system and is now over-reacting. He says that the alteration in my taste will likely also be lifelong. He gave me a prescription for a nasal spray that will help with the dripping.

And with a great sense of relief and gratitude, I asked him if I could give him a hug.

He is a truly great doctor and I am among the lucky people in the world to be one of his patients. Smart, clear thinking, and kind. Thank you Dr. Javer, for peace of mind. And to you Dr. Kaufmann, for eliminating my pain.

It’s a good Christmas today.

I asked Daniel to take a photo of my staples the day after surgery as I wanted a record of the healing. Each day, I had a bit more energy and felt encouraged with the recovery. I knew I was to watch for signs of infection or discharge from the wound. No issue there. And it was nice to know that once I washed my hair, my scar wasn’t visible.

And after a week, it seemed that most of the things I most feared were not happening — headache, return of pain etc. At about day 10, Thursday, December 10, I thought I was coming down with a cold as my nose started to run. After a couple of days I started to wonder why the cold didn’t evolve like a normal cold with increased congestion or a sore throat. Then I started to wonder if this was a dreaded cerebrospinal fluid leak. So, on Sunday, I wrote to Olive in Winnipeg and asked if I should be alarmed.

I received a response the next day and was advised to keep my head elevated 24 hours a day to see if the dripping would resolve on its own. In my discharge notes they had recommended I see my doctor as well. I saw him on Tuesday afternoon. He thought it was serious enough to send me to Emergency. So, I went and they admitted me for observation that resulted in an unsatisfactory experience for all involved.

It was somewhat frustrating at the hospital because I saw different people every day and each had a different opinion. I had provided them with Dr. Kaufmann’s cell phone number and email address but they did not contact him. However, on Thursday morning when they started wanting to escalate the intervention, I called Dr. Kaufmann myself to discuss. He had a different choice of management. I wanted to discuss it further with the resident who had been assigned to me that day but he was too busy to come and talk with me. The neurosurgeon whose official care I was under only saw me once during the whole hospitalization early my first morning and never came back. All communication with him took place between the residents and the nurses. Somehow, my neurosurgeon in Winnipeg and I were not part of the decision-making team.

It is very difficult to build trust when communication is poor. And I spent two full days in the hospital confused, receiving mixed messages, in less than ideal conditions.

I waited for several hours for Thursday’s resident to return to discuss and formulate a plan. He was paged and said he would be by in 30 minutes and I waited an additional two hours after that. It was approaching dinner time. I was on a ward with sick people . . . my husband had come by to pick me up, so I discharged myself “against medical advice” as the nurses had no discharge instructions from a doctor.

Upon my arrival home, I wrote to my neurologist and to Dr. Kaufmann explaining the situation to them. I am capable of doing everything that the nursing staff was doing for me at the hospital, in a much cleaner and quieter environment — monitoring my temperature, asking myself if I have any pain or headache, giving myself medications, etc. The only thing I can’t check at home is my blood pressure but it’s always 95-100/65 so it’s not really an issue as far as I can see. And we live 5 minutes away from the hospital by car or ambulance.

The irony is that last night I came down with a real cold, so that has made things a bit tricky for me. I have to stifle coughs and sneezes and make sure that I do not blow my nose. I am sitting a lot, sleeping with my head up at least 30 degrees and doing my best to eat well to maintain healing nutritional status.

My right ear is somewhat plugged so I’m taking that as a good sign, indicating that there is fluid building up there and perhaps suggesting that a leak into my ear from my skull is slowing and possibly healing.

Dr. Kaufmann has asked me to keep him informed of my status. The nasal drip has been present for 10 days and is much less than it was a week ago. If it doesn’t resolve, I may need another surgery to repair it. But we still don’t know if it’s a leak or not.

As soon as we arrived in Winnipeg, we set out to stock our kitchen. We had booked a room at the Mainstay Suites as they provided basic cooking facilities for us. As I had no intention of eating in a restaurant or going near the dreaded hospital food, this was my top priority. A friend in Vancouver had alerted me to the fact that Costco carried GT’s kombucha, so we made our way to the closest Costco and found a case of my favourite flavour, Gingerade.

We had brought some kitchen essentials in our luggage and then worked on getting greens, vegetables, sauerkraut, fruits etc. at two organic stores.

We had a decent-sized fridge with freezer and a stove top to cook on. We brought our own frying pan in our luggage as they only provided the non-stick pans that are possibly toxic and I won’t use.

Of course, if you are going to be in the hospital, you need to have a devoted and loving person in your life to prepare your food and deliver it. Daniel had lots to do, shopping, prepping food, delivering food, as well as attending my appointments and visiting me. On top of this, he had to feed himself, exercise, and sleep too!

Mixed green and berry smoothies were a staple, and we had good meals at the hotel too.

We had a chance to try elk again, this time in a stir-fry.

With Daniel’s great help, I was able to stay true to the Wahls Protocol on the trip. And I like to think that my quick recovery from both surgeries was because of my improved nutritional status.

I’ve been meaning to update my blog for some time. As things have become a bit complicated, I’ll go back to the time we were in Winnipeg between the two surgeries. (The video above explains how difficult it was to have all the pain come back so viciously after the balloon compression rhizotomy of November 24. I made the video on Friday November 27, three days after the balloon compression rhizotomy.)

On Monday morning, November 30, we went back to the Health Sciences Centre for the big surgery, cutting into the skull to cut 2/3 of the nerve. Dr. Kaufmann’s intention was to preserve some sensation in my lower face as well as the motor part of the nerve so I could chew.

I got into the hospital gowns and put my clothes into the huge bags they have for patient belongings that they deliver to your bed on the ward.

I signed the consent form for the procedure.

And they came to get me with a wheelchair to take me to the OR. They hadn’t sent a chair for me 6 days before and none of the other people going for day surgeries were in chairs. I told my escort I would prefer to walk, so I did. I sometimes think when they see the words MS in a person’s chart, they make assumptions about what they will see. I still don’t “look” like I have MS.

I came out of surgery at 10:00 a.m. and a volunteer went out to tell Daniel. And then at 10:10, Dr. Kaufmann went out to tell Daniel I had regained consciousness and that all had gone well with the surgery. He would be able to see me after my transfer to a post-surgery bed on the neuro ward.

It took several hours for a bed to become available but they did let me speak to Daniel over the phone. He went back to our hotel to prepare some food for me to eat as I maintained my diet the whole time we were away.

I was hooked up to lots of tubes and even a catheter! That was a first for me. I asked for it to be removed so I could go to the bathroom on my own. And I asked for them to remove the IV drip as it had dextrose in in and I did not need them to pump sugar into my blood as I was able to eat and drink.

I asked Daniel to take a photo of the scar. It turns out that they didn’t shave any of my hair but I did get an autograph from Dr. Kaufmann with his initials on the surgical side.

Dr. Kaufmann came by to see me a total of three times on the ward! On the morning after the surgery, he encouraged me to leave that day if I felt up to it. He said that we could stop by the clinic on our way out. As I was feeling good, I got dressed and we left.

We met with Dr. Kaufmann in the clinic on our way out and reviewed possible complications and things to watch out for. I was to take it easy for the next while and increase activity as tolerated, as well as taper off the pain medications.

Our return flight was booked for Saturday, so we had several days to stay close to the hospital in case of complications and to see a bit of Winnipeg.

We were relieved — the pain was gone, there were some strange sensations in my face but these are to be expected when you cut a nerve. Dr. Kaufmann reviewed some of the potential risks to my right eye and encouraged me to book an appointment with an ophthalmologist upon my return to Vancouver.

We had a few days to explore Winnipeg.