2014: As my husband, Steve, and I toasted to the start of 2014, we knew we had a great year ahead. We were kicking the year off celebrating two of our closest friends’ wedding. I was going to finish up my first year within my Masters of Occupational Therapy program at Temple University. I had just secured an awesome internship opportunity for the summer, perfect for my OT master’s experience. Everything felt perfectly lined up and I was ready to go full speed ahead. After all, my mentality had always been to get that list together, check each box off one-by-one, and continue to move forward towards the goals.
As the year progressed, I noticed an increase in some left-sided headaches, numbness and tingling symptoms which had popped up over the previous few years. I would often attribute them to a stressful moment and leave it at that. My method of dealing with them was to shake the symptoms off, go for a walk with our amazing corgi Major, and get back to my checklist and schedule. This technique seemed to work for the previous few years, but now they seemed to be coming back stronger with more frequently. I also noted to myself that it was an extra stressful time as our amazing, loving and wonderful grandmother, Helen Xibos, had been in and out of the hospital that year. During one of my visits to see Grammy, I still remember one of her neurologists explaining she had extra veins and arteries in her brain, but left it at that. I didn’t think to ask additional questions at the time. Little did I realize that less than six months later, a very similar diagnosis would be coming my way.
Our very much-loved Grammy passed on August 19, 2014. As many can understand in similar situations, our family went through some difficult weeks. Over the next week and a half, my symptoms increased, and again, I attributed this increase to the sadness of the previous month, as well as the general stress leading up to resuming grad school classes the first week of September. On August 29th, the headaches, tingling and numbness increased to the point we decided to go to the ER on August 30th, just to make sure all was good. I truly felt silly going in, and was 99% sure that the ER team would do a quick look over and tell me to go home to get some rest and relaxation.
Diagnosis
I will never forget the feeling of seeing those four white coats walking towards me after having a standard ER CT Scan. I remember trying to say ‘Arteriovenous Malformation,’ let alone processing what it meant. The team mentioned additional unruptured aneurysms and further testing. The following week flew by. We transferred to Thomas Jefferson University Hospital, to see Dr. Robert Rosenwasser and his neurosurgery team. I am incredibly grateful to have been introduced to Dr. Rosenwasser and Jefferson Neurosurgery to this day. Additional MRIs and my first angiogram confirmed a Left-Temporal Lobe AVM with additional unruptured aneurysms, hemosiderin staining indicating a previous bleed, as well as a left-internal carotid artery pseudoaneurysm.
Following the initial tests, treatment options were discussed. The AVM was too deep, too large and too entangled within the cognitive area of the brain which could/would impact speech and word processing. Surgery was not an option. The team explained that surgery would be more dangerous at this stage, and they recommended an initial round of Gamma Knife radiation, followed by a second round one year later to essentially erase the AVM and unruptured aneurysms. We were 100% on board to schedule the procedure as quickly as possible.
My Gamma Knife was scheduled for November 12th. To say the weeks leading up to that were stressful is truly an understatement. I decided to continue to move forward with my second year of grad school, after all, getting back into a routine and following my checklist was my tried-and-true coping strategy. This strategy was quickly turned upside down on October 13, when Steve was diagnosed with Stage 2 colon cancer.
Introduction to The Bee Foundation
Following a truly crazy October, filled with doctor appointments for both Steve and for myself, we were incredibly grateful for the outpouring of support from friends, family and many strangers. The amount of love, cards, meals, videos and hugs of support, we received truly got us through the following weeks. At this stage, a friend, Eileen Smith, informed me about an organization that 
she was a part of establishing, The Bee Foundation (TBF). She explained that an amazing coworker had suddenly passed away the previous year due to a ruptured brain aneurysm and that she, along with several other incredible people, were starting a non-profit focusing on increasing awareness and research. I can remember googling The Bee Foundation that November and began to follow it from that moment onwards. Knowing that I wasn’t alone in this truly unexpected new journey made a difference. Aside from hearing that my grandmother had ‘extra veins and arteries,’ I knew no one who had dealt with AVMs and aneurysms prior to 2014.
November 12th came, and while I was scared, between the trust I had in my neurosurgery team, as well as knowing a bit about The Bee Foundation, the time was now to start treatment. The day itself, while nerve-wracking, moved along smoothly. The incredible nurses and neurosurgery team were phenomenal throughout all of the steps, from the angiograms, the MRIs and the radiation portion of the day. Leaving the hospital, there was a huge wave of relief knowing that the biggest step was complete and that this could be checked off my list.
Looking Back
As 2014 came to a close, Steve and I both had our medical schedules set moving into 2015. We certainly had many, many things to be thankful for from one wild and crazy year. I had additional MRIs for follow up on the AVM and unruptured aneurysms, along with a time frame for my next round of Gamma Knife. Steve had his chemo schedule set for the upcoming few months. While we weren’t sure what 2015 would bring, we certainly ended 2014 with a feeling of immense gratitude.
2015 started cautiously, but filled with hope. I completed my Master in Occupational Therapy degree; Steve completed his chemo in May 2015. While on the outside, I felt like my game face and linear checklist schedule was strong, I still felt nervous and at times, very alone. While I will be forever grateful for the incredible amount of support from so many, it was still hard not knowing anyone else who had a similar experience from a patient perspective. The one thing that helped me feel connected was reading about others and their personal stories from The Bee Foundation, as well as following them on social media. It gave me a sense of peace reading their journeys and treatment paths.
The next round of Gamma Knife was set for November 2015, but due to the results of a summer MRI showing increased swelling around the AVM and unruptured aneurysm sites, the second round of treatment would be put on hold until the edema lessened.
Pausing
As the swelling persisted, the next round of Gamma Knife continued to be put on hold each year. There were negatives that developed, such as simple-partial seizures, the loss of driving for a collective 16 months, cutting back on work hours, as well as word recall/speech difficulties at times, but there were also many, many positives following the initial diagnosis. With the help of Jefferson Maternal and Fetal Medicine, paired with consultation from my neurosurgery teams both at Jefferson and at Penn Medicine, Steve and I were able to welcome two amazing and healthy babies into our lives in 2020 and 2022. Throughout this time, during moments of seizures, left-sided migraines or frustration at the inability to drive, I continued to find strength in The Bee Foundation’s posts, updates, as well as the increase of stories by those affected by aneurysms. It gave me hope, even if it was from someone I had never met in person.
Moving Forward
Finally, November 2022, following my 24th MRI since initial diagnosis, the clear to have the second round of Gamma Knife scheduled to finalize the unruptured aneurysms and fully remove the remaining AVM. It was at this time I knew I wanted to become more involved with The Bee Foundation. To say the least, there was a nervousness reaching out to an organization I had only read about, but the warmth I received from TBF will never be forgotten! This organization means so much to me and has helped me in ways it is impossible to put into words. I went into my second Gamma Knife Round on February 8, 2023, and was ready to get this AVM and unruptured aneurysms done for good!
My latest MRI is showing just that, decreased AVM and almost no trace of unruptured cerebral aneurysms. I feel blessed beyond measure as we move forward with this journey. To this day, I contribute finding my AVM and unruptured aneurysms to our Grammy. It was 11 days after her passing that my AVM and unruptured aneurysms were diagnosed. I truly believe her spirit was watching over me and saying, “Get this checked out ASAP Kirsten!” There is no doubt she has been with me in just about every leg of this journey, the good and the bad.
I will forever be grateful for my incredible family, my Paw Fam, and the many, many friends (and in some cases, even strangers!) who have provided us with love, support and hugs throughout these nine+ years.
The journey continues, and it is filled with hope and the unwavering support received from such an amazing organization. It has allowed me to find my voice again, even with the word recall issues at times. My hope is to help individuals know they are not alone and that there are others out here that can provide hope, support and encouragement as well. Meeting others affected by brain aneurysms and AVMs has not only been a blessing, but it has been truly inspiring.
Bee Kind to Yourself
My biggest piece of advice for those going through Gamma Knife, AVMs, unruptured aneurysms or any stage of the recovery process is to give yourself grace, and ‘Bee Kind to Yourself.” Throughout my recovery journey, especially during those initial months and years, I often became very frustrated with myself when treatment did not necessarily go as planned, or during periods of seizures, migraines, or just needing to take time to sit and take care of myself. I felt that it was in my control to always make that forward progress, and when it didn’t happen immediately, it was on me to fix it. It took me years to allow myself to recognize that recovery is not always linear, and may not follow my set checklist schedule. And yes, it is okay to take time to regroup and reach out to others for support. The Bee Foundation has helped me do just that!
