"The stream is always flowing to get you where you want to be"

I was misdiagnosed with ulnar nerve neuropathy and went through an ulnar nerve transposition surgery by an orthopaedic surgeon in Edmonton after years in pain. 

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I was told that the surgery was successful and the surgeon even asked if I needed the other arm done at the two week follow-up. Recovery time for this type of surgery is one year. Fast forward to one year post-op, the pain returned even stronger and I once again had to pursue diagnostic testing and medical care on my own while being dismissed by multiple medical practitioners.

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Eventually an EMG doctor ordered an MRI of my spine and the phone call following that said that the results came in "a little more than we expected". The new diagnosis was Chiari Malformation Type 1 and extensive syrinx. In other words, the arm problem was not an arm problem but a spine problem as there were cysts all along the spine pressing on the nerves.

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The EMG doctor then referred me to a neurosurgeon who offered to operate in two months. I requested a referral for a second opinion but he would not make it. I pursued several referrals for second opinions through my family doctor (GP) which all came back as redirects back to the original surgeon, apparently he was the head of the department at Royal Alex Hospital. 

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I went through with the surgery offered in June 2022 in Edmonton by the above neurosurgeon. I ended up in the hospital for two months. I could not breathe, swallow, talk, walk... I got pneumonia. I was told that they missed a brain tumour on the original scans pre-op. Then I was told that the surgery that was done made my condition worse, the syrinx (cysts) worse and that now it is urgent to operate again otherwise I faced the possibility of becoming paralyzed. 

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When questioned why the surgeon missed the brain tumour, he said "the radiologists get paid to look at scans, I don't get paid to look at scans."

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The above surgeon then refers me to a skull base neurosurgeon who breaks the news to me that I have a suspected chordoma brain tumour. She proceeds to be pushy about a biopsy within a month in order to confirm the diagnosis. 

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When asked about a referral for a second opinion, she spends about 15 minutes asking why and dodging the question. Ultimately, she refuses to refer for a second opinion. Her after visit summary says that the patient is afraid of surgery, due to past complications, never mentioning that I had asked and was denied a second opinion. Me being afraid of surgery was never discussed, not even by a long shot. There is a voice recording of the entire encounter.

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Several days after this appointment, I found out that biopsies are not done on clival chordomas because they cause seeding. Also, no real expert is confused about what type of tumour it is. Only she was confused and advocating for a biopsy. 

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The next time I met with this doctor, after I had mentioned my own research to a few other medical practitioners, biopsy was never mentioned again and she was now proposing surgery through a lateral rhinotomy approach... This doctor could not do EEA surgery (done with no issues in Pittsburgh) and she was not upfront about her incompetence not only in terms of the approach to surgery but also in terms of her experience. 

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Meanwhile, the original neurosurgeon was also pushing to operate again now realizing that he is liable for the worsening and progression of my disease. Every single voice recording of the encounters with him, he is flip flopping, not knowing what to do, advocating for one treatment, a month later, another treatment, telling me stories about his herniated disk patients as if my condition can be compared to a herniated disk patient. In general, he is an embarrassment and a disgrace to the good doctors out there, so is his fellow neurosurgeon above. 

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In the midst of this, I had acquired medical opinions from world-class chordoma experts in the USA. This process was exceptionally smooth and resulted in me making an informed decision to seek treatment in Pittsburgh PA with Dr Paul Gardner. 

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The blessings have been many since my brain cancer journey began; the new people who I met along the way have been a blessing, the discovery of my brain tumour before it became inoperable is a blessing, the doctors who so successfully treated all of the disease are a blessing. Dr. Hamilton, the spinal surgeon from UPMC wrote:

“This is unusual highly complex reconstructive surgery done by very few centres around the world… She will be in the top 1 percentile of difficulty around the world with regard to the reconstruction that was needed”.

 

Dr Gardner also wrote: “This combination of the retroflex dens with platybasia and skull base anomaly as well as assimilation and partial subluxation combined with the clival chordoma led to significant compression in the posterior fossa with a ventral compression. She underwent treatment at home in Canada with posterior Chiari decompression which actually made her condition worse and that allowed the anterior vector to progress. As a result, Khrystyna had an extraordinary complicated disease process with 2 diseases acting in concert to provide ventral brainstem compression. Both of these diseases required significant expertise to manage, including a multidisciplinary team”.

 

Dr Gardner further concludes:

“To my knowledge, there are no other teams available in Canada with the experience to manage this complexity of disease and certainly this was not offered to the patient”.

 

You don’t have to be a doctor to figure out that things were missed. Mistakes were made. Time and again people who did not investigate far enough, proceeded to treat something thereby leading to disabilities on me. My left arm now has zero grip strength. The decompression that was done in Canada was unnecessary and made my condition worse. The cancerous brain tumour was missed by multiple doctors, neurosurgeons, radiologists etc…

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People think that they would be covered by an out-of-country funding committee if they needed insurable health service, that can't be done in Canada. It is clear that is not the case. I've also heard mysteries about how the government would pay back whatever the procedure would cost in Canada. This is not the case. You may not be used to paying for health services in Canada, but as my case clearly exhibits, life-saving treatment is not always available and we are not insured for that.

 

The only body responsible for making decisions about health services out of province is the Alberta OOC (in this province) and they are not in the habit of approving out of country care. From my first telephone conversation with 'the Chair' before they even knew me, or my story, she expressed her sympathy, and said that they operate under very strict rules. The rule must be to deny funding, otherwise, how could she know the outcome before reading the scope of the case?