On January 6, we planned a discharge meeting for 10:00 with the attending physician, Dr. M, and Resident K. My husband had a tough time parking, so he was a bit late — a bit distressing for both of us because he is NEVER late. The attending physician didn’t seem to understand why it was important to me for him to be there. I was surprised that there would be any question and I assumed they would think it was important too. So, when he arrived, the meeting commenced.

I took notes as I always do. They assured me that there was no ‘pathology’ — at least no ‘life-threatening’ pathology. We discussed a plan for me to increase my oral caloric intake to 2000 calories/day and to gain weight at about 1 lb/week. That alone was surprising to me as there was no discussion about ‘nutrition’ with a self-professed nutrition expert. It was all about calories.

I was to follow up with the out patient dietitian. I was to follow up with my family physician within the week and to see him for weekly ‘weigh-ins’. I was to continue with drugs, including pantoprazole, mirtazapine and gabapentin. Dr. M gave me a prescription for a ton of gabapentin as it is tolerable in high doses for most people. And I was to follow-up with Dr. M at her clinic within the next two weeks. Yes, that’s right — her eating disorders clinic, despite the psychiatric assessments that did not indicate an eating disorder. If your only tool is a hammer . . . I guess they couldn’t really think of another reason that I wasn’t eating and they wanted to prevent another hospital admission. I was more than happy to do that. I had tried my best to prevent this one and I NEVER wanted to go through that hell again.

The other main focus of this meeting was to tell me to stop being ‘disease focused’ as I needed to work on ‘life balance’ and get back to doing things that I liked to do. They recommended that I engage in cognitive behavioral therapy. There were no suggestions on how to do that or where to go for that. Fortunately, I had been seeing my psychologist and I would be back to see her after returning home.

Resident K wrote the discharge summary. She did a pretty good job, summarizing the information in the chart and fortunately, did not repeat the many errors in the initial GI consult report. But that didn’t mean that the GI consult was out of circulation. And at that time, I didn’t know exactly what it said but I knew the hospital admission had saved my life but left me on my own again with no real answers.

And she called me Mrs. Sweeney — I HATE that!!!! — almost as much as I hate being called a ‘lady’ in medical reports. Fortunately, in this report, she called me a 51-year-old female. My husband and I have different last names. It surprised me that a young woman would call me Mrs.

I’m not a lady and I’m not a Mrs.

On the morning of January 3, I was woken up by a familiar face. The new resident on my case, Dr. K, was the same resident I had seen about three months earlier on October 14 at VGH. I went into emergency there seeking help as I was losing weight (about 124 lbs) and I wanted to prevent a hospital admission. I went in calmly and coolly, knowing that I was on the verge of some possible serious consequences. At that time, she encouraged me to pursue any options I had. I knew there was something wrong with my body but everything was ‘normal’, so I was sent home as I wasn’t dying on the spot and wasn’t in need of emergency treatment.

So, it was a surprise to see her and perhaps it was a surprise for her to see me. The tone of my interactions with physicians and other staff improved over those last few days and she was responsive to me. I was concerned about the lack of tone in my anal sphincter. They were sending me home before I regained control of my bowels. She told me it would improve. I told her about my numb feet but that never got into the chart notes or her discharge summary.

I had some hope that she might do some additional thinking and perhaps consider what might really be happening to me. But she was under orders from the attending physician and all I was at this time was a case for residents to practice on and to discharge me as soon as possible.

My husband had organized meals and food contributions from friends, and that was really nice to have visitors with real food. I spent the last few days walking as much as I could around the ward to try to regain strength. On January 5, the feeding tube got blocked again, so they pulled it out for good.

I forgot to mention any follow-ups with the psychiatry resident. He was a nice man who came in for chats once in a while. I had one last meeting with the female psychiatry resident who first saw me with the official psychiatrist, and I was cleared to go home. Nice to know that none of the psychiatrists thought I was seriously mentally ill. The admitting gastroenterologist had told my husband that I would be in the hospital for a long time, probably because he thought I would be admitted to the psych ward.

This was the day that the ‘team’ came up with my diagnosis of functional dyspepsia. The attending physician, Dr. M, came to see me and provided me with a handout from the internet describing the condition. I told her I didn’t have heartburn. She said I did. I decided not to argue with her as I didn’t want her to pull my tube out. I asked again about my swallowing problem. She called it my ‘perceived’ swallowing problem. I knew that I had to get out of there as soon as I could. I wasn’t happy with the ‘diagnosis’ as it seemed to be a general label applied to a group of symptoms but had nothing to do with a diagnosis for the cause of the symptoms.

It’s also interesting to note how one minor interaction with one nurse gets over-generalized to ‘at times rude to staff’ when I was as pleasant and cooperative as I could be, even when distressed or in pain. I can imagine the discussion at rounds and I know that those things get talked about. I’ve sat through rounds and been appalled by the things that get said. I was always the ‘outsider’ when in acute care as there were so few speech-language pathologists. The bully culture thrives in the health care system, and it affects patient care.

I had several friends come to visit that day. It was nice to see people.

My pediatrician friend came by that day as well. I showed him the functional dyspepsia handout and we talked about it. He was as disappointed as I was about the lack of a real swallowing assessment. He stayed for about an hour and he talked about the pitfalls of internal medicine and why he chose pediatrics for his specialty training. Anyway, he’s super smart and proposed a diagnosis of ‘possible MS’ way ahead of anybody who ‘should’ have diagnosed me. He did it by listening to me over the phone in November. It was highly unusual for me to call both of my doctor friends at home that month with questions about my health but I needed good brains and good ears to help as I was suffering so much with no answers or help.

I’m not sure what this nursing note meant with ‘doctor friends’ in quotation marks. I guess it was beyond imagining that a crazy woman like me had any friends who were doctors! Maybe I’m reading too much into it but I wonder if that was also part of the behind closed doors conversations about me. I hope I didn’t tell any of them about my ‘astronaut friend’, my ‘lawyer friends’, my ‘university professor friends’ or gosh, even my ‘politician friends’! As I had told the nurse, I felt that the weak diagnosis was insufficient, and I felt that way even before talking to my ‘doctor friend’.

I was gaining strength and feeling a lot better. I went for walks around the ward to start rebuilding some lost muscle tone. I was on my way out without any answers.  I was determined to deal with the GI problem first, then figure out what to do about the facial pain. They had started me on gabapentin a couple of days before and it was helping with the pain.

In the morning, I asked the male nurse to turn down my tube feeds as I had had a miserable night. He was doing what he was told to do and I probably put him in a bit of an awkward position, but I insisted. I called him ‘sir’ a couple of times, with a bit of attitude and ‘tone’, perhaps it was because he made a comment about not needing to be rude. It was early in the morning and it was difficult to sleep and I had been miserable all night. Ninety-nine percent of the time in hospital I was nice, nice, nice . . . but when you’re in pain and misery, it’s really hard to be nice all the time.

As I mentioned previously, not one person in the health care team ever asked me to fully describe my swallowing problems or evaluated me using a standard screening questionnaire. I never had anybody with any real swallowing expertise evaluate me, even though I requested it when Resident N came in early to see me.

This was the note written by the female Resident N.

This was accurate. I knew there was ‘something’ wrong with my swallowing but I couldn’t figure it out. I didn’t want to leave until they figured out what was wrong with me. Things moved through my body very slowly and when they increased the flow rate of the tube feeding, I was in great discomfort. I don’t think I said anything about MS when I was in hospital because I knew they already thought I was hypochondriacal and I didn’t need to give them any more ‘ammunition’. I naively thought they might consider it and investigate it. I can see in the chart notes that it didn’t even cross anybody’s mind.

In November, my radiologist friend in Portland had talked with me about ‘gastroparesis’ as we both concluded that my reflux wasn’t typical reflux. And my pediatrician friend here in Vancouver had mentioned MS but I got nowhere with that when I spoke to the specialists I was seeing. To be honest, I thought that more subtle signs of MS might have been observable with thorough bedside evaluations. Of course, now I know that’s not necessarily true, even with highly skilled and experienced neurologists. If you are a doctor or neurologist reading this, please make sure that you order an MRI before you allow your patients to suffer like I did — and please pay attention to the radiology report.

A bit later that day, the attending physician must have received a nursing report or update about my insisting to have the tube feeds turned down. That afternoon, Resident N came into my room and was going to pull out the tube under the instruction of the attending physician. She was reaching for the tube as soon as she walked in. My husband and a friend were there. We were all stunned. Apparently, I wasn’t being compliant with the medical treatment plan. This was a plan that had been developed behind closed doors and not communicated to me at all.

My husband made a passionate plea for her not to remove the tube as I was finally gaining a bit of weight and was more alert. He couldn’t believe that they would do that to me. She had to leave to get permission from the attending physician. About ten minutes later, Resident N came back and read us the riot act. I had to comply with whatever they said or decided was best for me or I was out on my own.

This is the note she wrote:

I knew then that I was in the wrong hospital, with the wrong doctor and the wrong team. I went there because my GI doctor had admitting privileges there and I respected him. Unfortunately, he was away and I got stuck with the one who couldn’t take a proper history and then decided to be a psychiatrist and diagnose me with a conversion disorder because I ‘somehow’ didn’t know that my mother was dead. Grrr . . . and my neurologist had privileges at the other major hospital but I didn’t trust him as he had done nothing for me to help me figure out my facial pain and completely dismissed/ignored my GI complaints.

The day after my difficulty swallowing a pill, I believe I had my ‘swallowing assessment’. A male resident came in with a tongue depressor to check my gag reflex. He checked it and left without saying a word. I had seen him several times before but that was the last time I saw him. There was no chart note about it. He had probably done it at the request of the attending physician. (It’s amazing to me that the nurses have to chart every single thing they do — and they did meticulously. But this lack of charting by physicians is surprising to me.) I can still see him in my mind’s eye although I can’t remember his name.

I knew exactly what he was doing and I accepted the fact that swallowing knowledge in parts of that hospital was still in the dark ages, perpetuating a long-held belief/myth that an intact gag reflex indicates normal swallowing. I now know that I was in the CTU or Clinical Teaching Unit, so, if that’s what they’re still teaching medical students/residents, you can be sure that it’s going to take a long time for that myth to die. Fortunately, the medical literature seems to be advancing but old myths die hard. It’s nice to see an article co-written by MDs and a speech-language pathologist where they state:

A gag reflex can be elicited in most normal persons. However, absence of a gag reflex does not necessarily indicate that a patient is unable to swallow safely. Indeed, many persons with an absent gag reflex have normal swallowing, and some patients with dysphagia have a normal gag reflex .

I wanted to have a real swallowing evaluation. I was starting to feel a bit stronger and I knew that there were speech-language pathologists in that hospital who could help. I wasn’t authorized to make a referral, so I waited until I saw Resident N again, as she seemed to be spending more time with me than any of the others.

I got a pill (gabapentin) stuck in the same place that day. I realized that that passage of the pill through the left pyriform sinus was partially occluded by the feeding tube that was down my throat. Once I thought it through, I remembered a technique we used with stroke survivors, that was to turn my head to the left when I swallowed so that pills would go down the right side more easily. After this episode, I used the head-turn technique for all medications I was given by mouth and had success with it, as well as using apple sauce to facilitate the passage of the pill.

They increased the rate of my tube feeds that day and I had a fair bit of discomfort overnight.

One thing that I was never really asked about was the work I did, except for one nurse at night — she only worked one shift with me and I never saw her again. She knew from how I was describing a problem I had with a pill stuck that I knew something about the anatomy of swallowing. I had a pill stuck in my throat, and I could feel that it was low, likely at the left pyriform sinus.  She asked me if I was a speech-language pathologist. I told her I was. I had worked in hospitals and I knew about swallowing disorders and used to teach lots of health professionals about swallowing. I even did a session for the radiologists at Shaughnessy Hospital back in 1993.

This wasn’t the most common problem I had — the more distressing one to me was food coming back up — regurgitation — and frequently the sensation of pills stuck in my esophagus that I would taste subsequently. Not one person in the health care team ever asked me to fully describe my swallowing problems with a standard screening questionnaire, like one I had used hundreds of times.

This was the note the nurse used to describe what was happening on December 30, 2011.

It’s obvious to me and anybody who knows any anatomy that if a pill was ‘stuck’ in my esophagus, I wouldn’t be doing any manipulations at my throat or clavicle. I don’t recall if I told her that I felt it stuck at my pyriform sinus because I’m not sure that I would have expected her to have the same level of knowledge about swallowing as I have. I have met very few nurses who know much about swallowing anatomy and physiology, and it bothers me that she decided to describe something different from what I said. (This is a recurring theme of this hospital admission — misunderstanding or reinterpretation of things I said.)  What I do know is that I was deconditioned, my muscles were weak, and I had only been on tube feeds for about 12 hours at that point, so I was still weak.

Later that evening the nurse went on a break and offered to get me something at a local coffee shop, and she came back with a herbal tea. I sipped it while looking out the window at the lights and wondered how I got there and why nobody could find anything wrong with me when I knew there was something wrong.

A few short days before I had given up completely. Now I was in for a bigger challenge and I was afraid I was on my own again to figure things out.

My husband came to see me every day and brought me food that I could eat. The hospital food was truly abysmal. On December 30, I told him that I had noticed a change in how I was being treated and that they were going to send me home without doing any more investigations. (This was the day after my new attending physician came to see me and told me she was an expert in nutrition.) I was no longer included in the morning rounds with residents and the occasional resident came in for a quick discussion. I think I was just a curiosity as they were probably ‘learning’ how to spot the loony, an important part of being a doctor, it seems. I told my husband that I thought they thought I really was crazy and I wondered what the second psychiatrist (a resident) had said in his notes. So, I encouraged him to get my chart that was in a pocket by the door and we could review what had been said as there was no real communication happening with us. I know how to read medical charts as I’ve worked in health care for years.

Just as we found the section on interdisciplinary chart notes, my nurse walked in the room. I felt like a child being caught red-handed. I tried to put a blanket on top of the chart but she came over and took it away. She told us that we could put in a request to see it but that it would take six weeks for that permission to be granted. From then on, my chart was kept in the nursing station away from my prying eyes.

The day nurse reported it verbally to the nurse who relieved her and this night nurse made a note of this in my chart before she left her shift the next morning, and after she had helped me with a problem swallowing pills.

I’m not 100% sure that it would have made a big difference if I had shown them the number of errors in the admitting report. No matter what I said, my attending physician disagreed with me. I told her I didn’t have ‘heartburn’ as described in my chart, and she told me I did. I told her I had a swallowing problem, and she referred to it as my ‘perceived’ swallowing problem’ . . . I couldn’t win. They had all the power. I had been isolated and dismissed.

I went down for an ultrasound on the morning of December 29. A cyst had been observed on an ovary in the abdominal CT scan on December 22. I was escorted in a wheelchair down to the hallway for ultrasound. I looked at a seating area and saw one of my former colleagues, a physiotherapist, from GF Strong. The wheel chair came to a rest down the hallway, so he got up to see who it was, as I had used his name. He was surprised to see me looking as I did. We talked for a bit and he could see I was in pain while talking. But there was one word of advice I gave him. I said to make sure that everybody he loves has a bowel movement every day.

The ultrasound technician was unable to locate the cyst. She said it wasn’t unusual for them to come and go but she did want me to get up, drink water, and do it again. I was exhausted, the tube feeds had not been working, I knew I didn’t have cancer, so I refused to go through the ordeal again. They recommended doing it again as an outpatient but that hasn’t happened yet. I remember feeling pretty miserable that day.

I received a question in a comment posted today about Tecfidera and my facial pain/shocks. (There was also a nice compliment that I had to include!)

Hi! I was curious if you are still on Tecfidera and how is it working? Did it cause you to have TN shocks when first getting on it? ( like first week starting full dose?)
This blog is a great resource! Thanks for making it.

So, I realized it would be a good idea to talk about my second try with Tec. I am on a facebook group with about 1,400 people using or interested in using Tecfidera. From their experiences and their discussions with neurologists, I decided that I could increase my dose more gradually than the standard ‘one size fits all’ instructions they give. In Canada, all of our pills are 120 mg, it made it easy for me to do.

Instead of one week at 120 mg twice a day, I decided to go for two weeks. And then, instead of doubling it right away, I decided to spend another week with 120 mg in the morning, then 2 x 120 mg in the evening. This morning was the first day of taking 2 x 120 mg in the morning and the evening, i.e., full dose. So far, so good.

I have not had any major facial shocks since late June, so there has been no relation to the Tec. I have had an achy face at times, but nothing too debilitating. And since restarting my use of the Tec, I find that the ‘buzz’ I have on my lower right tooth #44 is less noticeable when I brush my teeth.

At the end of day 22, all is well. One episode of flushing, very mild nausea at times, a bit of constipation . . . and the tongue is better than it was the first time round. And today my feet felt more ‘normal’ than they have in a long time.

For the first couple of days in hospital, my attending physician was an older, experienced male. His write-ups on Rate MDs is quite good. I liked him. He had a good beside manner. He evaluated me with a group of residents or medical students in the room.; however, I can’t find a chart note about the evaluation or his signature on any of the notes, although, in the discharge summary it states that I had been admitted to the Clinical Teaching Unit for investigation of my symptoms. Many the notes labelled CTU – Yellow are written by residents. I guess I was a teaching guinea pig. That doc did notice a right-sided facial droop when he examined me. I said it was probably from the botox injections I had had in November from neurologist #3. Nothing written about it in the chart notes. Of course, knowing that I have MS, it’s possible that the facial droop could have been associated with brainstem lesions. Interesting that my pediatrician friend considered possible MS with the trigeminal neuralgia plus GI problems. With all those doctors and keen medical students, you might think that the question would be asked or they might say ? MS in the note. But the fact that I was seeing the top GI doc and and a well-known neurologist seems to have frozen their brains. Or they might have believed I was too old for MS, even though you can get MS at any age.

It has been reported in the literature that people have starved to death from the pain of TN. On his website, Dr. Honey talks about Dr. Johann Bausch, a doctor who starved to death from TN . I believe he’s referring to me in this comment:

Readers will be horrified to know that one of my patients reported that she almost starved to death before the diagnosis was made and she received treatment in 2012.  History repeats!

On December 29, very early in the morning, the tube feed was blocked and they tried flushing the tube unsuccessfully at about 3:00 am. It was plugged and would need to be changed. Later that morning of December 29, before breakfast, my new attending physician came into my room and woke me up. She introduced herself and told me she was an expert in ‘nutrition’. I reached for her hand to thank her.

Little did I know that she was either on her way to a meeting or just finished with a meeting where my case was discussed. A decision had been made. My problem was ‘functional’ as per GI — all of us in health care know that is a code word that means ‘in your head’, and they were going to at least treat my pain. They would be sending me home asap and I would follow up with her in her office because she is an eating disorders specialist. The assessment had been made and no further investigations would be made. No neurology, no swallowing assessment. But it’s interesting to note that the psychiatrist said I didn’t have an eating disorder. I guess they didn’t listen to her either.

None of this was communicated to me at this time and I was still holding out for some hope. I thought I might be able to engage in discussion with some of the doctors but I was excluded from discussion. So much for patient-centred care. Once you’re ‘crazy’, you are not part of your own team. Nothing I said about other symptoms (e.g., numb feet) ever made it in the notes.

At least they had expertise on the complexities of ‘refeeding’ that is referred to in the note. This is moving from a starvation state to feeding again and they did extensive blood work to monitor me everyday until my discharge. I was grateful for that expertise. The additional complication is that starvation can cause GI problems, so the picture was muddy.

I should never have reached the point of being hospitalized. Where did the system fail me? What did I do wrong?