Post Op Appointment Update

Post Op Appt and Update 2:

2/20/2025

Kim returned to the surgeon’s office for an additional follow-up appt today. This appt intended to get further clarification on the reasoning behind some of the operative choices made and to understand Kim’s unique healing trajectory better. In addition, Kim’s aftercare for pain control, general support, and communications between insurance, hospital, and physician have not gone smoothly. In future surgeries, for better continuity of her care and comfort, Kim will be followed by a specialty pain management team to ensure her pain control is safe and effective. 

Kim has been consistently suffering from migraines and mixed headache types. She has severe pain in the jaw, neck, shoulder (the spinal accessory nerve), and inner ear, and trouble with speech and swallowing (the hypoglossal nerve). At this time, the tightly packed musculature of the head and neck are like steel cables. Kim is also contending with shortness of breath, which can be due to the lungs not inflating properly post-surgery but also due to a worsening of her underlying dysautonomia, which results in a slow and inhibited Vagus Nerve. The surgeon made it clear that Kim’s condition is far more complex and worse than the majority of their patients due to her late-stage underlying inflammatory conditions of Lyme Disease, Dysautonomia, MCAS, EDS, and HAE. Kim's healing timeline will be at least TWICE the “normal” expectation, which is an unexpected prolongation. 

The projected timeline:

1. 6-8 weeks: Follow-up appt to re-assess her nerve function and post-operative healing. An ultrasound order will be placed at this time. Due to her underlying conditions amplifying her pain and recovery, Kim should NOT expect many improvements or much relief for this 6-8 week period. This was difficult to hear. Other medications and support equipment were recommended to aid her comfort.

1. Around 8 weeks, Kim will have an ultrasound to determine the success of JV reconstruction and the flow status from Kim’s brain to her heart. How well is that new vein helping to flush the waste and fluids from her brain? 

1. 4-6 months: Follow up to reassess her healing status, symptom management, and nerve function as they recover. Complete nerve function recovery is likely to take a full year. 

1. At the 4-6 month mark, they will begin planning the next steps, tests, and images needed for her remaining surgeries. This will require multiple surgeons to review her case and careful planning for her travel safety. The specialist required for the intracranial work, Dr. Hui, only operates in Hawaii. Dr. Hepworth travels to Hawaii frequently to work with Dr. Hui on the most challenging cases - the category Kim falls into. No other surgeons can do this surgery for Kim on the mainland. She MUST travel to Hawaii to clear the remaining blockages in her brain and the right jugular vein. This will come at enormous expense as the hospital and surgeon are out of network, and insurance will not cover this. 

1. We expect the next surgery to be completed between late summer and October of this year in Hawaii with both surgeons.

Kim is not feeling well at all. She is worried about the ongoing expenses and care of her children, especially since her healing timeframe extended from the original 12 weeks to a year. Additionally, she is concerned about completing her coursework and certification for her functional medicine practice. Despite these challenges, she is deeply motivated to recover and thrive.

Thanks to the kindness of strangers and the generosity of friends and family, the Giffords are making progress toward their campaign goals. However, the new long recovery timeline and the need to travel to Hawaii for the most complicated surgery yet will require continued support from their community and beyond. This is a marathon, and it will lead to significant additional expenses since the hospital and surgeon are out-of-network and not covered by insurance. 

Many individuals with rare and underdiagnosed conditions face insurance coverage denials every day.

Let’s keep the momentum going! If you have an idea for a fun way for your team or family to raise awareness and contribute to Kim’s fundraiser, please reach out. We welcome creative ideas and support!