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Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Beyond is the email that Jillian sent out to everyone in advance of their trip to MAYO about the plan:
Family and Friends,
My Cricopharyngeal Myotomy (say that 3 times fast) is scheduled for June 12th. I thought I would take a moment to send you details about the process, as folk have been asking and email is a tad easier. Jeffrey and I head out to MAYO (PHX campus) on June 8th, as I have pre-op appointments on the 9th. I need to stay in the PHX area for ~10 days after the surgery, so we’ll be hunkering down in the lovely summer locale of PHX for a bit. Our brother-in-law, Jonathan, and my parents will be with Jeffrey and I through the 13th.
Surgical Options: - Endoscopic - less invasive, faster recovery, but doesn’t completely remove the diverticulum (it just merges it with the esophagus). Since I have this about 40 yrs. too early, we have no guarantee if another will form in its place or not.
- Open Throat - this would completely remove the diverticulum, which would be good long-term. However, increased risk for infection and harder recovery. Given my current health condition, may not be easiest on my body. Risk with location of my diverticulum, as mine is by the uncommon location of being by my vocal nerve endings.
Typically people are kept in the hospital for 1 night with endoscopic and 3 nights for opening the throat. Due to the severity and frequency of my angioedema, there is talk of keeping me in the hospital longer, so that they can keep a closer watch and ensure that my airway isn’t effected. I’d be okay with this.
As of now, I am slated to have an endoscopic procedure to repair the Zener’s diverticulum. In March, my diverticulum was 2.1 cm in size and the cut-off for endoscopic is 2 cm. That’s life for ya ;) That said, the surgeon still plans on attempting to proceed endoscopically and explore the situation further. While he is in there, he has consent to back out and proceed with the open throat option if he believes it the best fit. We really won’t know until game day, so I guess I’ll find out when I wake up. Surprise!
As you know, during my recent visit to MAYO, a lump was found below my voice box. Upon review of my CT scan, folks were unable to determine whether the lump is cancerous or not, so the surgeon will also take a biopsy of this lump while he is in there. I need to clarify with him, but I assume this means they’ll completely remove that lump too, so that they don’t have to go back in later?
Prep: I’m working on getting myself into an emotionally stable and secure state for the procedure. I put on a brave face, but I’m pretty anxious about the whole ordeal. In addition to getting my head glued on straight, which could take some time, I’m doing what I do best and planning (type A for the win!). I’m freezing bone broth, planning out meal options for recovery time and compiling recipes, so that Jeffrey and my mom can make me awesome smoothies, juice, and gelatin. I’m increasing my probiotics, collagen, vit. C, L-glutamine, etc. to prep my body for any bacterial exposure and to regenerate and heal my cells/tissue the best way possible.
That’s the info. We’ll be needing lots of love from our community, that’s for sure.