Kim's Post OP Update

Kim and her family are working hard to help her heal, find comfort, and rest after the many challenges they have faced over the last five days. One major obstacle has been the lack of pain medication until yesterday. This has been excruciating for Kim, as her body can only tolerate one rare and expensive type of pain medication for her safety. The acute phase of recovery following such invasive surgery requires adequate and targeted pain management. During her surgery, doctors resected (cut) tissues, reconstructed her jugular vein, removed numerous lymph nodes embedded in biofilm-like scar tissue, shaved down cervical vertebrae, removed her styloid bone and stylohyoid ligament, and worked to free up nerves also encased in the same “sticky” scar tissue. The surgery to reconstruct the vein and remove bony structures pressing on it is difficult enough on its own, but manipulating major nerves adds to the unbearable pain. No one should have to endure this. Yet, despite all of this, Kim perseveres.

Is she doing well? No. But she is handling these nearly impossible circumstances as best as any human can. We kindly ask everyone to respect her healing time and avoid texting her during this period.

Today, Kim met with Dr. Hepworth’s PA for her Day 5 post-operative visit. They discussed the medication issues at length to prevent any ongoing problems between the provider and pharmacy. Insurance complications are another matter many people can relate to. They have authorized the necessary medications, and Kim is finally reaching the dosages she so desperately needed five days ago. Anyone who has undergone surgery knows the importance of staying ahead of the pain, as it becomes very difficult to regain control once it intensifies. Please keep Kim in your thoughts and prayers for improved comfort.

Additionally, they reviewed the surgery itself, as mentioned in the original post-operative update on the blog. Pathology results are still pending, but we do know that the lymph nodes removed from her neck were benign (non-cancerous), which is positive news given her recent breast cancer history. The tissue is undergoing further cultures at this time looking for pathogens from infections.

One significant change from the original operative discussion is that the team did not access the veins in Kim's brain, known as intracranial access. During this surgery, they only accessed the extra cranial venous supply, which includes the neck veins leading to the brain's base. Future access to the intracranial veins will require her to travel to see another surgeon from out of state who will work alongside Dr. Hepworth. This surgery will be determined by the team once Kim is deemed ready for another operation to restore adequate blood flow from the right side of her brain. The right and left sides must work together with the veins inside the brain to function properly.

Kim's homework is to REST. The nerves that control her speech and swallowing are painful and slow, making conversation very challenging and exhausting for her. (As an Italian-Irish woman, this is particularly difficult, as anyone who knows her understands how much she enjoys talking with her loved ones—or anyone at all! 😀). Additionally, her vision is affected due to swelling, and she is experiencing significant back and shoulder pain from the spinal accessory nerve. To add to this, the huge master nerve that controls most major organs, the GI system, and the bladder—the vagus nerve—is also irritated and causing some “system errors,” leading to abnormal function. Therefore, REST is essential, especially since it has been impossible to achieve any restful state with the pain she has been experiencing.

This surgery successfully opened the flow of the left jugular vein. However, her right jugular vein remains 100% occluded, and the venous supply in her brain has yet to be explored for additional occlusions and blockages. The hope is that with the increased outflow from the left side, Kim will experience less pressure, improved drainage of toxic waste from her brain (which her body will still need to manage and will likely worsen her infectious symptoms from Lyme disease and other pathogens), and some normalization of nerve function. It will take months to determine the true outcome for her quality of life and to plan the next steps. Kim is scheduled for another follow-up appointment in several weeks, during which a flow ultrasound of the repaired jugular vein will be conducted. She has been instructed to remain in close proximity and maintain contact with her medical team.

All of this is a lot to take in and understand. It is also a very heavy burden physically and financially for the family. They will need our unwavering support and ongoing efforts to aid them.