Support for Occipital Nerve Stimulator Surgery

As Mary’s family, we are reaching out for financial support on behalf of someone we love very much - a woman who is a wife, mother, sister, and friend - but more than that, she is an incredible person who pours her life into others and rarely asks the same for herself. For those of you who know Mary, you have no doubt experienced her vibrant love for people and the passion she directs toward the things she cares about most. Unfortunately, this amazing woman has spent the last 8-10 years dealing with the debilitating pain of occipital neuralgia and intractable migraine (diagnosed in 2014), as well as trigeminal neuralgia (diagnosed in 2016). It would be impossible to describe all that these diseases have taken from her and her family but after years of attempts to bring her lasting pain relief (including countless nerve blocks, a Gamma-knife radiation procedure and many experimental medications), an FDA-approved device has become available that could be life-changing. It’s called an occipital nerve stimulator, and in short, it tricks the brain via nerve stimulation into thinking it's not feeling pain. Thankfully, her insurance is covering at least a portion of the costs to implant this device but the out of pocket expenses may still be upwards of $30,000. This is why we are reaching out - because any financial help Mary and her family could receive toward this procedure and her ongoing medical costs would be a priceless contribution toward getting her life back.

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For those of you who are already aware of the details of Mary’s conditions, you are welcome to scroll down to the section that describes her upcoming and ongoing financial needs. For anyone who would like to better understand Mary and the toll her experience with these diseases have caused her, please continue reading below:


Mary’s Medical Conditions & the Impact on Her Daily Life


Trigeminal Neuralgia is nicknamed "the suicide disease" because 26% of people diagnosed with it take their own lives due to extreme pain, and top medical sources describe as “the most painful condition that exists.” Some of the symptoms can include:

-Episodes of severe, shooting or jabbing pain that feels like an electric shock
-Spontaneous attacks of pain or attacks triggered by things such as touching the face, chewing, speaking or brushing teeth, singing, crying, laughing, wind, cold air etc.
-Episodes of several attacks lasting days, weeks, months or longer — sometimes the pain is constant
-Constant aching, stabbing, searing, and electric shock pain that occurs with muscle spasms 
-Pain in areas supplied by the trigeminal nerve, including the cheek, jaw, teeth, gums, lips, eyes, and forehead
-Attacks that become more frequent and intense over time leaving less and less moments without excruciating pain
-Vomiting due to extreme pain

In addition, Mary also deals with occipital neuralgia which causes intense pain that feels like a sharp, jabbing, electric shock in the back of the head and neck; and chronic intractable migraines which she has suffered from for 64 of the last 90 days alone, despite preventative medications and interventional procedures. It goes without saying that ongoing symptoms this severe are absolutely detrimental to Mary’s quality of life. These are some of the ways her daily life has been impacted:

-Not able to sleep for more than 2-3 hours at a time due to pain
-Riding in the car- no more than 30 minutes without severe pain
-Getting ready in the AM takes hours due to having to stop because of pain
-Daily nausea/vomiting
-Daily dizziness
-Daily peripheral vision loss
-Uses migraine glasses to help block visual noise
-Misses social, holiday, and family gatherings, and when she can attend, she puts on a brave face and pretends she isn’t in terrible pain so everyone can have a happy holiday. During holidays, she frequently leaves the group to vomit, and splash cold water on her face because she is in so much pain she is sweating.
-Shaved most of her hair so she can put topical pain relief directly on her head
-Drinks only water and lots of it
-Had to change jobs because she couldn’t perform the duties, now she does telehealth therapy
-Went from working full time 3 years ago to working only 10 hours a week now, and some weeks not at all.
-Had to change careers to a more flexible one
-Attends support groups
-Attends counseling to get coping strategies for pain
-Frequently misses work /class
-Socially isolated/depressed
-Developed severe anxiety surrounding pain
-Limited household chores-unable to contribute 
-Limited recreational activities-can no longer run, kayak, hike, swim, cycle, road trip, be in the cold, ride roller coasters, or garden
-Can’t drive frequently due to pain and visual disturbances
-Continuous low light/sound needed at home
-Can’t pick up or play on the floor with nephew without extreme pain
-Can’t lift or carry things over 5 lbs
-Clumsiness due to pain and visual disturbances

Despite her continual pain, she has continued to pursue the things she loves and cares about. She served two terms of service in AmeriCorp as a literacy interventionist, ran two afterschool programs, built a children’s library in a women’s shelter, advanced her degree in Special Education and became an ABA (applied behavior analysis) therapist, and is currently completing her practicum to become a licensed behavior analyst. As her family, we are absolutely amazed by her resolve in reaching for hope and continuing to fight on each and every day. She is one of the most loving, empathetic, and courageous people we know, and we are standing with her in every way we can so she can live the life she deserves - pain free and thriving.

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Upcoming Procedure, Costs, & Potential Life Impact

As we mentioned earlier, the procedure Mary will be receiving in the coming weeks will be to implant an occipital nerve stimulator. This is a very invasive procedure with a painful and difficult recovery but it has a record of promising results that could lead to a remarkably better life for Mary. Most recipients of this device have experienced at least a 50% decrease in their daily pain levels, if not more. For Mary, this would mean doing things she hasn’t done in years - hiking, running, kayaking. She could ride in the car for longer than 30 minutes, attend physical therapy for other health concerns, take on longer work hours to provide for her family and finish her practicum to become a licensed therapist. It would mean reduced pain, and therefore less medications and interventional pain management needed. It would mean FREEDOM. 

Based on the currently scheduled doctor’s appointments, preparatory procedures and surgery, here are some of the approximate costs that will be incurred over the next several weeks:

Gas, Hotel, Food & Tolls: $585

Potential Out of Pocket Expenses for Implant Surgery

Several Weeks of Income Lost by Both Mary and her wife Brittaney During Recovery

Medical debt accrued over the last 9 months

Total $30,000

Thank you so much for even taking the time to hear Mary’s story and the needs that are ahead of her. As her family, our hearts are so full of excitement for the potential of this life-changing procedure but we are deeply aware of how crushing the weight of this financial burden could be. Please consider donating to this campaign to help take some of that burden away from Mary, her wife, and daughter; so Mary can live the kind of life she deserves.


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Donations

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  • Sue & Ed Domes 
    • $50 
    • 9 d
  • Courtney Carter 
    • $50 
    • 12 d
  • Seta Ghazarian 
    • $50 
    • 12 d
  • Mary Chapman 
    • $50 
    • 12 d
  • Anonymous 
    • $80 
    • 15 d
See all

Organizer

Brittaney Chatwin 
Organizer
Silverdale, WA
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