Misc. Updates #2

A new week and some random updates…

How I’m Feeling

As usual, I’m pretty exhausted every day. Been having pretty bad headaches every morning that make it tough to get up going.

Still have the usual fibromyalgia muscle and joint pain. I try to walk 20-30 minutes a day and do stretches every night. Anything more than that and the celiac nerves get pretty irritated.

The pain and nausea haven’t been as bad — mostly because I try not to eat much during the day, other than nibbling on a gluten-free waffle or small servings of very watery mashed potatoes. That helps me get enough work done through the morning so that I can rest in the afternoon if I need to.

Then I pile on the calories in the evening by drinking my liquid nutritional supplement. (Each bottle is 500 calories and I drink 2-4 per day.) If I drink the nutritional drink during the day, it tends to drag me down, but I need the nutritional balance it provides.

Nutritional Drink

Speaking of the nutritional drink… It’s been quite the go-around still trying to get this covered by insurance.

The medical supply company called saying that we have coverage, but that it will still cost us about $1000 a month. The pricing was a little confusing, so they will send it in writing.

Our insurance covers 80% of the cost. But the drink company charges my insurance $32 a bottle rather than the $9 a bottle it costs me if I pay for it directly. So the 20% I have to pay of $32 is still $6.40 per bottle. And by the time I pay shipping (and this stuff is heavy, so shipping is a lot), I’m pretty close to paying $9 a bottle again.

So I don’t know if it’s worth it to mess with the insurance or not — because I’d have to purchase a month’s supply, and I might not need that much if I have surgery soon.

We’ve already spent more than $500 out of pocket on the drink so far. Now we’re wrestling with the insurance company to get that counted toward our insurance plan before we place a big order for more of the drink.

Surgeon Selection

Lots of conversations going on this week with potential surgeons.

Los Angeles Surgeon

• Talked to Dr. Sheikh a second time to ask more detailed questions. Didn’t get much more out of him.

• I have a tentative surgery date with him in early December, but that will likely get moved later. We would have to travel 5 days before the surgery to get tested for COVID, and we don’t want to travel over Thanksgiving due to the pandemic.)

• I’m uneasy about using this surgeon as he hasn’t been very forthcoming about the details of how he does his surgery compared to others. Both times I’ve talked to him, he comes across friendly, but impatient. Not sure if he is just dodging my questions. I’m going to reach out one more time in writing. I’ll share the details that I’ve learned about 2 other surgeons’ techniques and ask him to comment on how his approach is similar / different.

• Not sure that I will choose this surgeon, so we may end up cancelling. For now, we’re holding the date and moving forward though.

Connecticut Surgeon

• Talked to Dr. Hsu and am moving forward with his process in parallel with other surgeons until I make a final decision.

• Next step he requires is a celiac plexus block (CPB), which I’ll need to get done locally. Dr. Hsu’s office will have to contact the CPB doctors, then I’ll have to try to get something on the calendar with the CPB doctors. They’ve already told me that it will likely be 3-5 months before I can get that done.

• After the CPB, it will likely be another 6 months until I can get surgery.

• Because of this long timeline, I’m not likely to go with Dr. Hsu.

Utah Surgeon

• Talked to Dr. Richards office. He doesn’t do telehealth, so I’ll have to fly to Salt Lake City for an appointment on 12/21/20.

• He requires a celiac plexus block (CPB) and prefers that it be done by his associate in Salt Lake City. They are seeing if I can get that done on the same trip as my in-person consult.

• His team has been by far the most friendly, kind, patient, and detailed in answering my questions.

• He has a very good success rate. There’s lots of reasons to choose him, although he’s not covered by insurance.

Here’s a comparison chart of the three main surgeons:

	Dr. Hsu (CT)	Dr. Sheikh (CA)	Dr. Richards (UT)
Insurance	Not covered	Covered	Not Covered
Distance	Danbury, CT 5 hour flight	Los Angeles, CA 1.5 hour flight 2 day drive	Salt Lake City, UT 1.5 hour flight 2 day drive
# Surgeries	500, about 4 per week.	Has not answered definitively, but about 6 surgeries per year. (He mostly does pancreatic / liver cancer.)	180
Success Rate	92%	Has not answered definitively. Says he's never had a failed MALS surgery.	Greater than 90%
Surgery Type	Open abdominal	Open abdominal	Robotic
Ligament	Removes the ligament entirely. Says he is the only surgeon doing this.	Removes ligament tissue around the artery. Vague on how much.	Removes 4cm of ligament 270 degrees around the artery. (Removing 360 degrees could cause a hernia.)
Nerves	Removes celiac ganglia. Strips the artery of its investing nerve sheath all the way from the aorta to the first order branches of the celiac artery. Does not cauterize the nerves. Says he is the only surgeon who removes nerves, but this doesn't seem to be true currently.	Removes the celiac ganglia. Unclear about details.	Removes the celiac ganglia. Removes any inflamed nerve fibers. Does not cauterize the nerves.
Celiac Plexus Block	Requires CPB. Getting it done in Oregon will take 3-5 months.	Doesn't require CPB. Does required doppler ultrasound (which is done now).	Requires CPB and prefers that it be done by his partner in Utah. Might be able to do CPB along with a required in-person consult.
Surgery Date	Probably August-October 2021. (3-5 month wait for CPB, plus 6 month wait for surgery.	Tentative date already scheduled for early December 2020	Probably January 2021
Recovery	5-7 days in the hospital. 1-2 weeks in CT before flying home.	5-7 days in the hospital. 1-2 weeks in CA before driving home.	1-3 days in the hospital. Can drive home any time after that.