Denise’s Chiari Malformation Journey

Our name’s are Cheyenne Mikkola-Rahja, Bridget Mikkola-Rahja and AudraSue Preble. Cheyenne is the youngest daughter of Denise and Jeff Mikkola. Bridget is their daughter in law. Audra is Denise’s longest best friend. Together we make up a small part of the support team that will provide constant care for her as she begins the journey to healing and recovery. But first, let us tell you a little bit of Denise’s story.

To the best of her recollection, Denise was attending a work function event in March 2011 when she experienced her first major symptom. She was enjoying a cool winter day with her co-workers and while laughing heartily she felt a sudden and sharp pain in the back of her lower skull. She self-assessed and then made a comment to Audra, who was also in attendance for work, that if something happened, this seemed to be a predecessor. Having no more pain after a few minutes, she thought it was associated with being out in the cold and/or allergies and went about her day. Gradually as the years passed, she experienced pressure headaches related to laughing and coughing.

During the summer of 2021 while on a trip to pick up their family pet, Rivir, Denise developed a cough. At the time, they felt it was most likely allergy related as they were traveling in the south and encountered several plants and trees we don’t have in MN. After several weeks without the cough letting up or going away, they became concerned. After contacting their primary doctor, x-ray’s were completed and were found to be unremarkable. Again, the general consensus was that it’s allergy related. Unfortunately with this cough came horrific pressure headaches. Denise was experiencing daily headaches that no amount of OTC medicines would relieve. She pushed through each day trying to remain positive and productive.

By January of 2022, Jeff decided to take matters in hand and reached out once again to the doctors to request MRI’s. Jeff and Denise met with their primary in February and it was agreed that those tests would be ordered, a referral to the neurologist was also made. By that time, Denise got so desperate that she did was she always tells others not to do; she Googled all of her symptoms in one long run on sentence; and up popped Chiari Malformation Type 1. She was absolutely certain she had just found the answer.

It was at this point that Denise’s symptoms began to worsen and progressed quickly. She went from taking care of her home, her animals and her family to needing to rest much of the day. She was experiencing more headaches, more often and with much more intensity. She was having balance issues, neck pain, memory issues, difficulty concentrating, not able to recall words, numbness in her left arm, both legs and vision issues. She can hear her heart beat and what sounds like whooshing water in her head when she lays down. At times she required her husband Jeff to help her out of her chair or into/out of the shower. Some days she could walk but would have horrible headaches, other days she would need assistance because she would bump into the walls while walking down the hallways. Months earlier she fell up the stairs from her basement while doing laundry. By now she was almost incapable of walking up and down the stairs with out assistance.

As is her nature, Denise took it upon herself to research and find out as much as she could about this condition. She also met with the neurologist and mentioned to him that she thought it’s Chiari; while he didn’t disagree with the possibility, he couldn’t be sure until imaging confirmed it. On March 24, 2022 she had several MRI’s and on the morning of March 25, 2022 she received the results which included the confirmation of a Chiari Malformation.

During the next few months, she had more testing and images, met with her neurologist in Duluth and continued her research to find relief from the symptoms. She also tried medications prescribed for pain management but because they are so harsh on the stomach, they are very short term. Her neurologist told her that he would give her a referral to a neurosurgeon. There is no known cure for Chiari, there is only pain management and a procedure called decompression surgery or a craniotomy. While this isn’t a cure or even possibly even a permanent fix, it allows the patient some pain relief for several years. While some patients never have another surgery, other’s may need more.

During her research, Denise found a specialty clinic in Cincinnati, OH. After asking her local neurologist for a referral, she ultimately self-referred. During this time, Jeff was working one day and heard someone speaking about Chiari. She was talking about her sister who had the operation done nearly 19 years ago. She was surprised that Jeff had heard of Chiari and he said he has, and that his wife suffers with it. Eventually, she spoke with her sister who offered her contact information and Denise spoke with her. Angel shared her story, her neurosurgeon information as well as her recovery process. Again, Denise self-referred to the neurosurgeon in Seattle, WA. Denise interviewed the neurosurgeons at both locations and felt the relationship with Dr. Richard Ellenbogen was the best fit for her and her surgical needs. Dr. Ellenbogen is a renowned neurosurgeon, very well published in his field and teaches other neurosurgeons the decompression procedure he performs for the best results and successful recovery for patients.

While Denise has insurance through her husband Jeff’s work, the cost of travel, lodging, food, transport to and from the hotel to the hospital, loss of work for Jeff is astronomical. The funds raised will go directly to them to pay for these much-needed services so they do not have to incur more debt due to using credit cards.

Denise and Jeff have lived in the Cherry community for over 35 years and have always supported or spearheaded fundraisers for others. Now this couple needs our help to overcome their own financial obstacles in order to get the necessary brain surgery Denise needs to live a pain free, healthy, productive and happy life.