Hello Friends!

This year we have decided to celebrate the holiday season by supporting ground-breaking, first ever, Canadian multi-disciplinary research on Chiari malformations. As many of you know, I have Chiari malformation and syringomyelia - both serious neurological conditions - which have changed my and my family's life dramatically. This research is being done at the Krembil Research Institute at Toronto Western Hospital. I have been treated by Dr Zadeh who heads the Krembil Neuroscience Centre. Her colleague Dr Hodaie is the lead on this research.

Research Summary:

"Patients with Chiari malformations commonly have a delay in their diagnosis, resulting in ongoing suffering for patients, who are often unsure of the cause for their symptoms. Patients with Chiari malformations present with a number of symptoms, such as disabling dizziness and headaches. Some patients have symptoms that are difficult to understand, including lack of concentration and fatigue. Compared with other conditions in neurosurgery, there is an unclear correspondence between a potential change in structure and the consequent change in brain function. Overall, Chiari has been insufficiently studied as a neurosurgical condition.

Dr Hodaie's clinical work has been deeply intertwined with research in our attempts to understand this condition and improve ways in which we identify the best type of treatment for each patient. We have focused on the role of advanced brain imaging techniques to understand what happens to the brain in Chiari malformations. Our goal is to develop these techniques to better individualize patient treatment.

The vision for the approach to Chiari malformation at UHN is creation of a consortium involved in the treatment and study of Chiari malformations."  - Toronto Western & Toronto General Hospital Foundation

I hope you can join David and I in supporting the exceptional work at Toronto Western Hospital, and alter the course of history for those suffering from these difficult neurological conditions. Information on the conditions at the end.

Best way to convey why this research matters so much, is through my Chiari journey, so pick up some coffee, and get comfortable. 

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BACKSTORY:

Ever since our beloved Olivia was born in 2010, I had unexplained numbness in my arms, so bad I could not even hold her safely. The numbness subsided, but I had strangely intense fatigue that was all dismissed as new mom tiredness. Then on I went to work, and was in full working mom mode. Over the next few years I was suffering from constant headache and fatigue. On the particularly tough times I remember, my awesome, wise friends all kept on saying that this is not normal, and urged me to see a doctor. Well, I was busy, so I just pushed through.

Eventually in 2015, the headaches become so intense I could no longer withstand the pain. I was unable to sleep and life became about survival. I recall sitting at my family physician office and seeing the concern... MRI was ordered... I think the suspicion was brain cancer...

Few weeks later I was in an MRI machine. Yes, that magical techno chamber (as I call it after having the pleasure of being in one far too many times!) revealed the source of my years' long pain and suffering. DIAGNOSIS: Chiari malformation 1 and large syrinx in cervical and thoracic spine. A neurosurgical consultation was ordered.

This is where the real meat of the story begins.

I got an appointment with neurosurgeon Dr Gelareh Zadeh at Toronto Western March 2016. David and I went together. Dr Zadeh was amazing. She was calm, kind and emanated knowledge and experience. She explained I had Chiari malformation that I was most likely born with, which had caused a large syrinx (syringomyelia) in my spinal cord. This needed brain surgery. Sooner than later. Surgery was scheduled for August 2016. 

At this point, I had actually lost all temperature and pain sensation in my hands and arms, and had strange episodes of losing most of my vision field, along with the unbearable headache and a whole array of other symptoms like difficulty swallowing and pain in my neck and shoulders.

Then it came time to tell my family, friends and work. They were shocked, but also full of encouragement, hope and tremendous support. I will never ever forget the support I received from my family, friends and team at work. My gratitude for their kindness lives on forever. They strengthened my faith in human capacity for true leadership, greatness and triumph in life.

Everyone was so surprised because I "look so great"! Yes, these illnesses are mostly invisible, which contributes to innumerable people going undiagnosed and not receiving care. Many chiarians are labelled hypochondriacs or to have some type of mental illness, even fibromyalgia. Having the proper diagnosis is critical in treating these illnesses, especially when one has syringomyelia as the nerve damage can become permanent if not treated.

BRAIN SURGERY:

Once the surgery day came, we had hundreds of people on prayer alert around the world, and those who may not believe in the power of prayer, sending their positive energy. The surgery went very well, and Dr Zadeh once more was amazing. David was kept informed on the progress via a mobile device. Yet another exceptional service offered at Western! We remember Dr Zadeh's excitement when she told us how well it went! This is how we know for sure she is deeply dedicated to her work in helping people. 

POST SURGERY - OH THE PAIN!

Once the anaesthesia wore off and I was taken to IC, the pain became unbearable. While I was warned about it, there are really no words that can describe the pain... Decompression surgery is no small feat, they cut your neck muscles to get to what they need to do. And that, my friends, I do not wish upon ANYONE.

However, the nurse who took care of me at IC, was an angel. The importance of compassionate, professional care in the midst of indescribable pain is beyond my ability to convey with words.

GOING HOME:

After three days, the team got my pain under control and I got to go home. David, Olivia and my in-laws Rose & Cam came to get me. It must have taken 10-15 min to walk to the car with David's help. And the car ride home: not fun. Let's just say that I am in favour of prioritizing pot holes repair in the City of Toronto! Once I got home the intense pain started again, but thanks to strong meds I managed to fall asleep and start the recovery.

THE BRIEF EXPERIENCE AS A SUPER HERO:

The next few weeks at home were pretty bizarre. You see, I had "gained" super hearing, vision and other senses as a result of the surgery. David and Olivia were kind of amazed - my hearing was exceptional. I heard every word that was spoken two floors up! I had to be in darkness as I could not withstand any bright light. When I finally got out of the house, it was a super sensory experience. I felt like each ray of colour had become alive and I experienced all things around me with great intensity. The flowers I received were extra amazing as they looked so beautiful and vibrant to me. The brain is amazing!

Another sensory change was taste. Once I gained my appetite, the food tasted so good! It was as if I had woken up from a dream and I was now a new person. Over the next few months these symptoms started to subside (good-bye super hero senses), but I was still in pain and overloaded with the sensory experiences. I had decided to stay in gratitude and focus fully on healing. When people spoke, I had a new level of understanding - as if I was "smarter" now. Must have been the newly flowing spinal fluid! Dr Zadeh had been successful in removing the blockage, and now I was in this new "state". In my euphoria and belief that I can now do anything, I went back to work. Those of you who know me, my optimistic nature has been a great strength in life, but this time I was overly optimistic.

RETURN TO WORK:

Three months after the surgery I returned to work. I had a lot of symptoms, but with the newly flowing spinal fluid, returned sensation in my hands & arms and that Chiari pressure headache gone, I was keen to work. I believed I was totally healed and dismissed my symptoms as mere remnants that would go away.

The next months were filled with hope, yet largely overshadowed by denial. I was not back to normal. My body was in healing mode and needed rest. A lot of rest.

Over time my body started to protest. Turned out I no longer could tolerate heat, I was in constant nerve pain, had a lot of cognitive issues and was unable to sleep due to the pain. So, my beloved David, my doctors, friends and family convinced that I should stop. Yet, the will power and belief that I am good as new was so strong that it kept me going...for a long time.

Until one day. I was once more coming home feeling so dizzy I was not sure if I was conscious or not. My friend Rachel happened to be in the bus to catch me. Another angel. This is when I finally understood: I must stop or this is not going to end well.

TURNING POINT:

August, 2017 I stopped working. It was devastating. I love my work! I have worked since I was 16. It was a total turning point in my life. I started to fully focus on healing. Got medication (and side effects!), meditated and prayed for hours each day, moved as much as I could, adopted an anti-inflammatory diet, tried about 10 different kinds of alternative therapies until I discovered that acupuncture helps! Thank you Jessica!

But, I was in mourning. In the middle of massive change in my life. Chiari and syringomyelia had officially taken over my life. That's how I felt. Month by month different doctors and therapists, friends and family poured hope in me. Asked me to be patient. Nerve healing takes a long time. The key is I was not dismissed, but cared and loved.

THE JOURNEY INTO HEALING:

In February 2018, Dr Zadeh sent me to Toronto Rehab for testing. There I was accepted to the Acquired Brain Injury (ABI) Program. That was the best thing. The multi-disciplinary team of physiotherapists, occupational therapist, speech therapist and social worker all worked with me for two months to essentially teach me how to live my life in this new normal. Slowly, my quality of life started to improve - largely because I now understood my limits and had a toolkit of coping strategies. The folks at ABI are total super heroes!

As a follow-up I was referred to Toronto Rehab's LEAP Program - a pain management group course for people with neurological illnesses and Goal Management Training to help with my cognitive issues. Both were great - best of all, I met so many wonderful people who struggle with similar challenges as I do.

NEW NORMAL:

Today, I view Chiari and syringomyelia as my most profound teachers. The intense nerve pain has pushed me to the edge of wondering whether I can withstand it. It takes your breath away. Yet, there are treatments, and hope. There are relentless healers like Dr Zadeh who do not give up. There are amazing physicians like Dr Reid who care deeply about making the life of their patients better. I will forever stand in deep gratitude to them and my entire multidisciplinary care team across UHN and beyond. And finally, I am so very fortunate to have amazing family and a small army (but a strong one) of friends around the world who have carried me to this day of celebration! You are all my heroes. While I am still very symptomatic, we have come a long way together. The surgery averted the progression of these illnesses and that is a victory!

CALL TO ACTION:

It is my deep desire that my story has shed some light on why diagnosis and treatment are difficult, yet possible. My case is unique in its many forms - as is each Chiari case - but the experiences are similar. Not all chiarians are candidates for surgery and each person's symtoms vary. It is a roller-coaster ride of highs and lows for most of us. While I have received excellent care, I know this is not the case for everyone. What is needed is relentless work towards earlier diagnosis, better patient care and energy focussed on the future. This is why Dr Hodaie's multi-disciplinary research is exactly what is needed. We invite you and anyone who you think would be interested to patriciate in supporting the Chiari malformation research that aims to prevent and alleviate the tremendous suffering caused by these illnesses.

Thank you in advance!

Any size of support is amazing. For donations of $20 and more tax receipts are provided in Canada.
Please make a gift today!

In profound gratitude,
Kirsi

Information on Chiari: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet
Information on syringomyelia: https://rarediseases.org/rare-diseases/syringomyelia/