This is a letter I wrote to Dr. Kaufmann, 10 December, 2012, after being denied surgery at VGH and sent home on Dilantin. When I started to have a reaction to the Dilantin, my GP was unable to get any response from Dr. Honey’s office. Dr. Kastrukoff learned that he was out of town. So, I asked my GP to make referral for me to Winnipeg, as I knew of Dr. Kaufmann’s reputation. He also did a procedure that would be better for me and my ‘good’ eye because of the involvement of the upper branch of my trigeminal nerve.

10 December 2012

Dear Dr. Kaufmann,

I have had two very nice conversations with [nurse]. I have had a long and tortuous journey to a diagnosis of multiple sclerosis, made by Dr. Lorne Kastrukoff on November 15, 2012.

I have placed a lot of information on my personal website and blog if that will help you understand my situation. I have summarized the history on the page “Facial Pain”. The blog includes some youtube videos, including recent ones of me talking and eating with a straw. It can be found at www.jennifersweeney.ca

I have had recent severe exacerbation of my pain and we are coming to the end of drug management. I have liver toxicity with Tegretol and Dilantin (recent blood work attached) and I am currently on Lyrica, 150 mg bid, with insufficient pain relief.

I am unable to eat except with a straw and have started to lose weight again. One year ago (December 27, 2011) I was hospitalized for the same problems yet was treated as a psychiatric case. Unfortunately, the GI doc who admitted me decided I was a psychiatric case and wrote that I had post-herpetic neuralgia. Never having had shingles, it was a mystery to me. I believe it had something to do with his confirmation bias as he proceeded to make me sound infantile and delusional. Anyway, it’s been a long, difficult year. Finally having the MS diagnosis makes everything make sense.

Also unfortunately, the psychiatrist’s assessment I had while in hospital was the best assessment/summary of my situation up to that date, yet it did not hold much influence in the care I received. I’ve enclosed it here. I did not see a neurologist while there. And the neurologist I was seeing for my facial pain did not believe I had MS, even when I last saw him on October 9, 2012. He hadn’t bothered to look at the MRI from July.

I saw Dr. Honey during my recent hospitalization for pain, yet he saw me when I was out of pain after IV Dilantin. I had been referred to him for a rhizotomy by Dr. Kastrukoff. I understand that it is important to rule out all drug management before considering a rhizotomy. Less than a week later, I was unable to function or think and then developed a rash. At this point, I believe the rhizotomy is my last hope for any degree of a normal life.

I have pain and or triggers on all 3 branches of my trigeminal nerve. Up until recently, the majority of the pain was in V2, up my face, and around my nose and upper lip. My recent hospitalization was from pain continuing up to V1, all the way up to the top of my head. The pain in V3 is minimal, mostly along the gumline with a major trigger at tooth #44 that has a big impact on my eating. Right now, I have allodynia again in my mouth. It has come and gone over the past 2.5 years. And every time it went away I prayed it wouldn’t come back. Now that I know I have MS, the situation is different.

I have also provided you with a copy of the MRI that was recommended by radiology to assess MS. As I told [nurse], I am willing to go to False Creek Health Care to have another one done privately and quickly if you need to have a better one.

Many thanks,

I was fortunate that they recognized my cry for help and were able to get me in for surgery within a few weeks.