All I want for Christmas is two giant needles in my back

UPDATED ON 12/29/20:

Just got a call postponing the celiac plexus block from this Saturday to next Wednesday 1/6/21. It was an error on the part of scheduling person. They should have scheduled me for a 3-hour appointment instead of a 1-hour.

The good news is that I'll have a different doctor doing the procedure who is considered one of the best. We're not sure if this doctor is covered by our insurance, but at this point, I don't really care! Let's just get this done!

I have a couple of important decisions to make before next Wednesday:

1. What should I eat during the 4-hour testing window?

   So many foods sound amazing. I crave foods like tacos, Thai sweet basil fried rice, a really good hamburger, steak and sweet potato, oatmeal cookies, Cool Ranch Doritos, gluten free chicken artichoke pizza, even a salad!

   But I have MCAS (mast cell activation syndrome), which is common in people with MALS. (The thought is that reduced blood flow compromises the integrity of the intestines. Food particles invade the bloodstream, causing strong immune reactions.)

   I am highly reactive to a huge list of foods. I definitely don’t do well with things like dairy, gluten, eggs, shellfish, nuts, coconut, tomatoes, chocolate, MSG, artificial colorings, and even a lot of fruits and vegetables.

   So I think I’ll have to settle on some kind of sandwich on gluten free bread, some chips and maybe some kind of gluten-free cookie. Even that sounds amazing to me!

2. Should I request steroids be used in the block mixture along with pain medication?

   In addition to pain medication, steroids are sometimes used to provide longer-lasting relief of 30 hours or even weeks and months.

   I was told on the phone today that my doctor isn’t planning to use steroids, but I could request them on the day of the procedure and see what she says.

   My only hesitation is that I was on a heavy does of oral prednisone several years ago due to a MASSIVE rash reaction I had to menthol in a small amount of Vicks Vaporub used on my chest. I used the prednisone for only 2 days before I had to stop due to terrible insomnia. After 2 nights without sleep, I felt like I was losing my mind.

   So I’m investigating what steroids are typically used and whether other patients have had insomnia reactions. So far, it sounds like Kenalog (triamcinolone acetonide) is used. No other patients have reported bad reactions so far.

I was already scheduled to have the block done on 1/19/21, but was able to get in sooner by calling every day to see if there were any cancellations. Tenacity wins again! (I happened to be the one calling today, but kudos to my wife who did the bulk of the calling on many other days.)

As a reminder, this is a diagnostic procedure where 2 long needles are injected in the middle of the back on either side of the spine at the site of the celiac ganglion nerves. Pain medication numbs the celiac nerves.

After the celiac plexus block, the patient is asked to eat a meal that would normally cause them MALS pain. If they have no pain, then it’s confirmed that MALS surgery to release the ligament and remove the celiac ganglion nerves is likely to be successful.

Doctors vary on what medication they inject. The doctor I’m using at OHSU (Oregon Health and Science University) uses 50% fast-acting medication that numbs the area within 10 minutes, plus 50% slow-acting medication that should numb the area for 4 or more hours. Some doctors use steroids as well, which can give relief for months, but this doctor does not.

Many doctors use some sedation to ease patients. This doctor doesn’t, which I’m very glad about. I over-react to any type of sedation or anesthesia and would likely sleep through the 4-hour window during which I need to eat a meal. Or I might be far too dizzy and nauseated to eat.

The doctor will use a local anesthetic at the injection site before inserting the longer needles. She uses no other general pain medication like fentanyl, dilauded or morphine as that would dull pain beyond just the celiac ganglion nerves and confuse the results.

The Recap

In case you’ve lost track, I still have 2 options open for surgery. My first choice at this point is Dr. Starnes in Seattle. But I’m keeping Dr. Sheikh in Los Angeles as a back up option.

Los Angeles with Dr. Sheikh

• I was scheduled to have surgery in Los Angeles with Dr. Sheikh on 12/10/20. That got cancelled at the last-minute due to the hospitals being over-crowded with COVID patients.

• I’ve been waiting for them to call me back to reschedule the surgery. Because COVID numbers are likely to remain high throughout January due to people gathering at Christmas and New Years, I don’t expect a call any time soon.

• Dr. Sheikh does not require a celiac plexus block in order to proceed with surgery. He considers the CT scan and doppler ultrasound sufficient for diagnosis.

Seattle with Dr. Starnes

• Dr. Starnes does require a celiac plexus block before agreeing to do MALS surgery.

• I don’t have a surgery date scheduled with Dr. Starnes yet. I’m not able to do that until he sees the results of the celiac plexus block.

• The next step with Dr. Starnes is to schedule an appointment with him any time after the celiac plexus block is completed to discuss the results. I’ve called to get that moving and am waiting to hear back.

• I’m told that Dr. Starnes isn’t doing MALS surgeries until February due to COVID. But that could change.