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.