Surgeon Consultation #1
I’ve been in the process of trying to find a MALS surgeon for about 2 weeks now. It’s been slow-going as it takes time to get my CT scans mailed to the doctor and for them to review it, then get a consultation scheduled.
Just had a consultation with a surgeon in Los Angeles today. There’s a lot of positives about choosing him to do the surgery:
NO CELIAC PLEXUS BLOCK!
He won’t require me to do a celiac plexus block before having surgery. That will save me a LOT of working trying to find a doctor to do a celiac plexus block. And it will cut out weeks/months of delay.
POSSIBLE SURGERY THIS YEAR? RELIEF SOONER THAN I EXPECTED!
As soon as I decide to schedule, he says they could work me in within 2-3 weeks. Mostly likely though, I would choose to have surgery in early December.
COVERED BY INSURANCE!
Most MALS surgeons I’ve researched aren’t covered by my insurance. This surgeon is!
WARM SUNNY WEATHER!
This surgeon is located in Los Angeles. I would be in the hospital for several days of recovery, then would need to stay in the LA area for another week or two for follow up appointments. My wife (and maybe the kids?) could enjoy some sunny weather while we’re down there.
FAIRLY AGGRESSIVE APPROACH
There are conservative and aggressive approaches to doing a MALS surgery. This surgeon has a more aggressive approach to cutting back the median arcurate ligament and removing the celiac ganglion nerves. That’s what I want! I really, really, really don’t want to have this surgery done again. He says he does about 6 of these surgeries a year (he mostly does surgeries on the pancreas, liver, aortic artery, etc.) and he’s never had a patient need a follow-up surgery that he’s aware of.
I can’t say for sure that I’ll choose the LA surgeon. There’s many steps to go through yet.
NEXT STEPS
The LA surgeon wants me to do an ultrasound Doppler study. My understanding is that this can measure the actual blood flow / pressure in the compressed arteries. That will give him clarity about just how bad the issue is. Plus, it serves as a reference point for how much pressure is relieved after the surgery. I’m in process of getting that test scheduled here locally.
I’m still evaluating at least one other surgeon who seems to be the top in the nation. I’ve come across so many patients who rave about him. Sounds like he is the one who re-does a lot of unsuccessful surgeries. I’m waiting to have a consultation with him. I’d really like to choose him, but the downsides with him are that:
He’s out-of-network for my insurance, and the total cost of the surgery would be $40,000 to $50,000 (though my insurance would cover some of that after my deductible and out-of-pocket are maxed out.)
I would have to fly all the way to Connecticut.
He requires a celiac plexus block before he’ll do a surgery, which will probably take me 2-3 months to get done.
He is already booked out 4-6 months for surgeries, so it would be a long time before I get relief.
In the meantime…
I’m still dealing with pain, nausea and fatigue every day.
I’ve discovered that if I sit up straight and a little bit forward, it seems to help the blood flow and I can work at the computer for longer periods of time. (Which is how I’ve managed to get this website going.) It’s bad posture for neck and shoulders, though, so my fibromyalgia pain is intense.
I’m on pretty much a liquid diet of a special nutritional supplement used by people with feeding tubes. It’s crazy expensive, so I’m jumping through all of the hoops with the doctor, the insurance company, the manufacturer and a medical supply company to get coverage. It’s a slog to get them all to communicate with one another!
Eating solid food is certain to put me in bed for 1-3 hours. But I do sometimes eat a gluten-free waffle (bland and soft!) just so I remember what it’s like to chew food!