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Medical Updates for Kim (Post Surgical Update) February 5th

 Post-Surgical Update: Kim is in recovery at this time. More details to be released soon. In the meantime, I will give you all a rundown of what the surgery entailed.


The primary focus of today's surgery was opening the Jugular Vein (the large vein that drains blood and waste from the brain back to the heart). This was successfully accomplished through a three-stage process.

1. The vein was flattened and twisted, not a normal open tube. Over 2 cm of the vein was scarred to the first cervical vertebra in her neck. He shaved the first vertebra to release the Jugular Vein and then needed to re-construct the vein itself. It is now flowing at 5 times the pre-surgical rate so the brain is able to drain from that side.
2. Kim had a sizeable cluster of enlarged lymph nodes in the same region that were also engulfed in scar tissue. There are 6 different compartments of lymph nodes in the neck. This was in the second compartment and caused many issues with lymphatic drainage further downstream. They were also occupying a lot of space in the neck and crushing nearby nerves and blood supplies. These lymph nodes were removed in three clusters and will undergo pathology screening as this presentation is often seen in cases of infectious diseases like Lyme Disease/Co-infections, Mono, and Strep.
3. Eagle's Syndrome and The Styloid Bone: This bone is usually the size of a skinny toothpick in width and is hardly seen even on imaging. In Kim's case, the bone and its accompanying ligament were heavily calcified (abnormal bone growth). The length before the removal of a portion was 4 cm! The width was 5 times wider than usual. This is likely a complication of hEDS (hypermobile Ehlers-Danlos Syndrome), which results in abnormal movement of the head and neck in this case. This thick and long bone also compressed her vein and the surrounding nerves.

Overall, the Jugular Vein is now flowing on one side, which should result in great relief once she is through the acute healing process. In the meantime, Kim may have issues secondary to post-operative swelling and manipulation of structures in the area to accomplish the surgery. These may include speech and swallowing dysfunction, increased symptoms from POTs dysautonomia (impacts nearly every bodily system), shoulder pain, and some short-term issues with her gut function. In addition, Kim may experience a worsening of symptoms from underlying pathogens as the brain and body recalibrate.

Updates to follow on how Kim is doing post-recovery and after the family has had some time with her. Thank you all for your love, prayers, and ongoing support. We are very optimistic!

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