Surgery Is Coming - Again!
If you’ve been following, you already know that I was originally set to have surgery with Dr. Sheikh at Hoag Hospital in Los Angeles on 12/8/20. But the surgery was cancelled 2 days prior due to COVID cases surging.
Since then, I’ve been working on surgery options.
I have a tentative rescheduled surgery with Dr. Sheikh in Los Angeles for late February. But I’ve also been pursuing the option of surgery with Dr. Starnes in Seattle — which has been my preferred option since he’s much closer to where I live and comes very highly recommended.
And now, finally…
Surgery Is Coming!
I had a video call appointment yesterday with Dr. Starnes of the University of Washington School of Medicine in Seattle. It was really just a formality for him to approve me for surgery.
Dr. Starnes said what I already knew, that I am 3 for 3 on confirmation of MALS:
My CT scan on 9/30/20 showed MALS compression.
My doppler ultrasound on 10/21/20 showed MALS compression.
My celiac plexus block last Wednesday 1/6/21 proved that nerves were being affected.
This means that surgery to release the median arcuate ligament compression and to remove damaged nerves should provide me pain relief and better quality of life. The amount of relief isn’t 100% guaranteed, of course.
And as of today, I have a surgery date at Harborview Hospital on Thursday, February 4th!
This means that I will be cancelling my surgery option with Dr. Sheikh in Los Angeles.
A Few Surgery Details
Dr. Starnes generally does these types of surgeries on Thursdays in the afternoon.
The surgery should take about 1 to 1.5 hours.
The incision will be about 4 inches long cut vertically between the navel and breastbone. It will be closed with stitches only, no staples.
Dr. Starnes uses an approach that seems similar to that of Dr. Richard Hsu in Danbury, CT. They both remove a significant amount of the ligament around the aorta and also remove damaged nerves affected by the compression.
I will be given an epidural before the surgery that will stay in place for a day or two after the surgery to prevent pain.
I will likely be in the hospital for 4 to 5 days.
We’re not sure about visitation restrictions at the hospital due to COVID. They said that the rules change on a weekly basis. Without the pandemic, my wife could stay with me 24/7 at the hospital the entire time. But with the pandemic, they have sometimes not allowed any visitors at all. Lately, rules are starting to ease up, so my wife should be allowed to visit me during the day while I’m at the hospital. No other visitors are allowed.
Due to COVID, I will most likely recover in my own private hospital room.
I will need to be in Seattle several days before the surgery for various tests and appointments. I’ve already done a recent EKG and blood work in Los Angeles, so I shouldn’t have to re-do that. I’ll also meet with the anesthesiologist, which I’m glad about so that I can discuss my sensitivity to sedation / anesthesia.
I will need to go back to Seattle about a month after the surgery for a check-up.
As I Recover from Surgery…
As much as I appreciate the kindness, please don’t send any flowers. Several people in my family, including me, have allergies to pollen.
As much as I wish I could, I don’t expect to be able to share updates while I’m in the hospital. It takes me a couple days to recover from anesthesia. Plus, I’ll be dealing with a good amount of post-surgery pain for quite awhile. Please be patient about waiting for news.
Your support through blog comments, social media comments, texts and emails are very welcome during my recovery! Please understand if I am unable to respond.
In the Meantime…
My pain is pretty much 24/7, so each day is a challenge.
Physically, it’s hard to find a position that provides relief. I generally feel better if I can be up and moving around. By constantly changing positions, it alleviates compression on various arteries affecting my gut, liver, gallbladder, liver and pancreas. Otherwise, those areas can get starved of blood, or blood can pool where it shouldn’t.
For me to work, I need to sit at a computer rather than move around, so I can’t sit for very long.
Mentally and emotionally, I’m constantly worn down by the pain and fatigue. Thankfully, the pain isn’t acute. Probably no higher than a 5 or 6 on a scale of 1 to 10. But the fact that it is so persistent makes functioning difficult.
To get by, I try not to eat until lunch time. Even then, I eat only small amounts of soft foods. Maybe a slice of homemade gluten-free bread (because any type of guar gum, xantham gum, etc. causes intestinal pain). Then I get the bulk of my calories by drinking Kate Farms nutritional meal-replacement drinks (meant for tube feeding) at night about 1 hour before bed. That way, I can sleep through any pain.
Even with this approach, I spend probably 2-4 hours in bed each day. Sometimes more.
Celiac Plexus Block Update
Many people have been kind enough to ask how I’ve been doing after my celiac plexus block last Wednesday. To keep all of that information in one place, I’ve updated that blog post here.
The quick update there is that the block lasted about 24 hours.
Thank you, everyone!