Time to Celebrate!

I finally had my celiac plexus block (CPB) done today by Dr. Kimberly Mauer today at Oregon Health and Science University (OHSU) in Portland, Oregon. And it was a great success!

I noticed pain relief pretty quickly after the block was done. I was able to splurge and eat a salad with all sorts of goodies on it like meat, bacon, pickles, onion, etc. I can’t tolerate fiber or chunky foods with MALS, so I craved a salad even more than junk food. Although I did have some chips and a cookie, too. =)

Tonight’s dinner is gluten-free pizza with chicken, artichokes, peppers, onions, spinach, etc. Can’t wait!

This is the first time that I’ve been able to eat this kind of food without pain in a LOOOOOONG time!

Thank You, Dr. Mauer

Dr. Mauer came highly recommended and I wholeheartedly agree that she’s remarkable. By far one of the best doctors I’ve ever interacted with. She was warm, personable and unrushed as she took time to explain the procedure and answer all of my questions. I was sure to compliment her afterward.

Three Things I’m Very Grateful For

1. Dr. Mauer agreed to use no sedation because it always makes me very nauseated, and I don’t wake up for many, many hours afterward. Had she insisted on sedation, I probably would have missed the 4-hour window in which I needed to eat food in order to confirm that the CPB was successful in blocking my MALS pain.

2. Dr. Mauer agreed to use fentanyl. The first doctor I was supposed to have at OHSU said she wouldn’t use fentanyl. I can’t imagine having a celiac plexus block without it or some other general pain medication.

3. Dr. Mauer agreed to use triamcinolone (steroid). She said she doesn’t normally use steroids, but was happy to do that since my surgeon requested it. And my surgeon doesn’t always request it. He did so this time because I specifically asked him to. So let’s hear it for advocating for yourself!

How Long Will I Be Pain Free?

It’s impossible to say. Maybe just a few hours. Maybe a few days. Maybe a couple weeks.

With just pain meds used in the CPB, most patients experience pain relief for at least 4 hours. With steroids, the relief can last for days or even weeks. Realistically, I’m hoping for a couple of days.

Next Steps

I still have 2 options open for surgery.

1. Dr. Starnes in Seattle, WA

   • Dr. Starnes is my first choice for surgery now. He requires the CPB done before agreeing to do MALS surgery. So now that today’s CBP is done, he will review the CPB results and hopefully approve surgery. Then I’ll travel to Seattle for a day of pre-surgery testing, which is most likely to happen on a Monday, 1/11/21 or 1/25/21. Not sure when the actual surgery would be, but probably early- or mid-February.

2. Dr. Sheikh in Los Angeles, CA

   • Coincidentally, Dr. Sheikh’s office called me today to get another surgery date scheduled. (My surgery with him on 12/8/20 was cancelled at the last minute due to COVID numbers spiking in Los Angeles.) I explained that Seattle is my first choice option right now, but we went ahead and scheduled a tentative Los Angeles surgery for 2/25/21, just to keep that option on the table.

About The CPB Procedure

I haven’t been able to find detailed descriptions of what a CPB procedure was like from other MALS patients, so here’s some details for those who are wondering.

• The overall process of getting a CPB took me 3 months to get done from the time I requested it until today. The process for getting approval, review, appointments, etc. is very slow.

• On the day of the CPB, I wasn’t allowed any solid foods for 8 hours before the procedure. No liquids or foods for 2 hours before the procedure. My CPB was at 1:00 PM, so I woke up at 4:30 AM to drink my nutritional supplement drink so that I would at least have something to keep my body going.

• My entire time at the hospital took only about 2 hours, about half the time I expected.

• I was given an IV before the procedure so they could pump me with fluids to keep my blood pressure up. The CPB numbs nerves that control some autonomic functions. This can prevent arteries from being able to contract, so blood can pool in the abdomen, resulting in less blood coming back to the heart, which results in low blood pressure. The IV was also used to give me fentanyl and x-ray contrast during the procedure.

• I was allowed to keep my regular clothes on. No need for a hospital gown. It was good that I wore a short-sleeved shirt so they had easy access to my arms for the IV and blood pressure cuff.

• They walked me across the hall to the procedure room where I laid face down with my head in a donut-shaped head rest like they have on a massage table. They gave me oxygen at my nose, refitted my COVID mask, put on a blood pressure cuff on my left arm and a pulse reader on my right index finger.

• The nurse lifted my shirt and used antiseptic on my back. Then the doctor marked a couple of general spots on either side of my spine just lower than the middle of my back.

• Throughout the rest of the procedure, an x-ray technician regularly took fluoroscopy images as directed by the doctor. This is done to help the doctor guide the needles to the right location, missing any arteries, bones, etc.

• For a CPB, two injections are made, one on the left of the spine and one on the right. Each one is angled past the spine toward the center of the body where the celiac ganglion nerves sit.

• The doctor started with the left side and used a needle to inject a topical anesthetic where the CPB needle would be inserted. This is only a minor prick, similar to getting blood drawn.

• Then the doctor gradually inserted the CPB needle by very small amounts, checking progress very often by x-rays from various angles. I could actually feel this part a little. It was mildly painful at times, but nothing all that bad. Then she injected the mixture of pain meds and steroids. I believe the mixture was roughly 50% lidocaine, which takes affect in about 10 minutes but wears off shortly, and 50% bupivacaine, which lasts for several hours. She also used triamcinolone as a steroid, though I’m not sure on how much.

• The right side of the CPB ended up more painful than the left side. I think the fentanyl had started to wear off a bit. Plus, the needle hit a nerve that sent a jolt down to my lower gut and then down my right leg. It wasn’t incredibly painful, but it was enough for me to wince and let them know to stop. Dr. Mauer was wonderful about chatting with me and asking me how I was doing all throughout the procedure. She said that if I ever needed more fentanyl to just let them know. So once they added more and waited a moment for it to kick in, the right side of the CPB was pain-free.

• I think each side of the CPB probably took between 5-10 minutes to complete. I was in the procedure room for only 30-45 minutes.

• Afterward, I sat upright on a hospital bed in a private recovery room for another 30 minutes or so. The nurse checked on my blood pressure and any dizziness regularly, but I was fine. I was a little loopy from the fentanyl, but clear-headed enough to text updates to my wife. Even though I was pain-free, I didn’t feel ready to try eating because I was shivering a bit. (I get cold very easily, usually due to thyroid issues, but also because I’m so skinny these days.)

• I expected to be in the recovery room for a few hours, thinking they would want me to eat while I was still there. But they let me go home pretty quickly. I felt good enough to walk. No need for a wheelchair. I ate my salad in the van before we drove home, then pigged out some more at home. I don’t know when I’ve eaten so much food!

• My back is a little sore at the injection sites, but nothing too painful.

• I am to fill out a pain journal every hour today, ranking my pain level. Then I keep that up once per day until the journal blanks are all filled out.

Post-Block Update

Updated 1/11/21

• The celiac plexus block lasted only about 24 hours for me. I was hoping for longer since they used steroids.

• On day/evening after the block, I was able to eat salad, chips, gluten-free pizza, tacos, burrito and a cookie.

• I’m back on a very limited diet. I eat very little food during the day and then drink Kate Farms nutritional supplement at night before bed.

• My back is still a little sore 5 days later at the injection site. Nothing too painful. But it is a little itchy and raised like a mosquito bite.