A new week and some random updates…

How I’m Feeling

In short, I’m doing a little better than average.

I still deal with pain and fatigue, but I’ve had a stretch of a few days where I was able to work the entire day without having to be in bed.

It was a good run, but I’ve been back in bed the last couple of days. I do get 4-6 hours of work done each day. It usually takes a lot of willpower to push through.

One of the tough parts about MALS is trying to keep up with work. If I’m not in bed asleep or resting, I’m in front of the computer. That means working nights and weekends to make up for lost time, which makes it hard to ever get a true day off.

Still, I’m really grateful to be getting caught up on work. If I have surgery soon, it’s important that I work ahead on things as I’ll need at least a month for recovery.

I generally do get to spend some time every night playing a quick board game with my daughter or playing some video games to help me relax.

MALS Interviews

It’s been a joy to interview 3 other MALS patients over the last few days to help share their stories. Each interview was 2-3 hours long done over Zoom and also recorded over the phone (because sometimes Zoom calls drop if there’s a bad internet connection).

I’ll be editing and sharing these interviews on the MALS Journey YouTube channel and podcast. It may be early 2021 before I can get to that if I have surgery soon.

Like me, the women I interviewed have suffered about 10-15 years before getting an accurate diagnosis and treatment. Two of them have made very good recoveries. One of them is much better, but has some other health issues to address still.

It’s so encouraging just to be affirmed by their stories. We’ve all gone many years with doctors denying the pain we’re in and doing so little to help. Finally, some validation!

Stuff I’m Learning

• About 15% of people have MALS anatomy. Not all of them have symptoms — or don’t have symptoms bad enough to realize that MALS is the root cause.

• MALS affects women far more than men at a ratio of about 4:1.

• Seems like MALS symptoms typically show up either in adolescence or in a person’s late-30s or 40s. (Mine started when I was about 38.)

• It seems like MALS diagnosis and treatment is growing significantly over the last 3-5 years. From what I can tell, the first diagnoses and surgeries happened in the late 1940s. But in more recent years, Dr. Richard Hsu in Danbury, CT seems to have been the pioneer vascular surgeon to lead the way in treatment. Anecdotally, I’m told that he was pretty much the only surgeon a few years ago. Now, I’ve been about to find easily a dozen or more surgeons, though only a handful of them use techniques similar to Dr. Hsu’s (open abdominal surgery that includes celiac nerve resection.)

• For those who are medical nerds, here’s an image that shows how the nerves overlay with the arteries. In MALS patients, that upper horizontal layer of muscle (the diaphragm) is positioned lower so that it compresses the celiac ganglion nerves and the arteries right below it. Surgery typically removes damaged nerves and releases pressure on the arteries. In unsuccessful surgeries, my understanding is that pressure on the nerves and arteries can return due to scar tissue that forms.

Nutritional Drink

A major part of MALS is nerve damage. So solid foods or rough foods cause a ton of pain and fatigue.

I’ve switched to a fully liquid diet of a specialized nutritional drink and that has made a huge difference in my energy level.

I do try to eat a gluten-free waffle or two before bed so that my digestive system “remembers” how to digest solid food. I eat it before bed so that if there’s any pain, I can sleep through it at night. But the waffles seem to be causing nasal congestion and joint pain due to inflammation — a result of food sensitivities. So I haven’t slept as well. It’s always a trade-off.

I’m still in the process of trying to get insurance to cover the drink as it costs about $1000 a month otherwise.

Surgeon Selection

Moving forward with surgery is slow going.

Los Angeles Surgeon

I had a consult with the LA surgeon last week on 10/19/20. We have a tentative surgery date set for early December — but that doesn’t mean I’ve made my final decision yet. I emailed him a long list of questions.

I have another consult with him next week on 11/2/20 to go over my questions.

Connecticut Surgeon

I have my first consult with the Connecticut surgeon next week on 11/3/20. We’ll talk about my CT scans and his recommendations for surgery.

He pretty much always requires a celiac plexus block procedure to be done before being approved for surgery. All of the doctors in my area who do that procedure can’t get it done for 3-5 months, so there would be quite a delay.

After the celiac plexus block, the surgeon’s office told me it would be about 6 more months until I would get surgery. The surgeon’s schedule is really backed up.

Nashville Surgeon

I contacted a surgeon in Nashville. The soonest he could even do a consult with me is August 2021. That’s a no go.

Utah Surgeon

I contacted surgeon in Utah and heard back from them today. They can do a consult in early November, but first need a referral from my primary care doctor. I will also need to mail them a CD of my CT scan, which I hope to get in the mail today.

This surgeon doesn’t seem to be covered by my insurance, but I want to explore my options as he seems to have a good track record with MALS surgeries.

All Alone in Recovery?

I found out from the LA surgeon that my wife won’t be able to enter the hospital due to COVID-19 restrictions. It’s not clear if she’ll be able to visit me at all in the 4-7 days of recovery.

Honestly, this adds a bit of anxiety for me. I don’t recover from sedation or anesthesia very well. For a morning procedure, I’ll still be barely conscious or able to function until 24 hours later. Even then, I’m extremely dizzy and nauseated. Throwing up after abdominal surgery just doesn’t sound like fun.

When I had an appendectomy a few years ago, my wife was a great comfort and advocate for me in the hospital. Sometimes, you just need someone to get the dang blanket off of your feet, or get your phone, help you with a drink of water, or insist with the medical staff that you need your IV put back in. It could be rough to manage that without help.

So I’m anticipating several days of being pretty alone after surgery. I’m really glad to live in an era with cell phones and iPads so I can email, text, video call, etc.!

Genomind Testing

Lastly, I had some additional genetic testing done that may turn out to be useful.

I don’t do well with a lot of medications, especially certain pain meds, anesthesia, sedation, or antidepressants. My body just can’t seem to process them.

Genomind is a test that helps explain how my specific genes affect my personal reactions to medications. It can match you to medications that your body might handle better.

My primary care doctor is hopeful that if I present my Genomind test results to my anesthesiologist and pain-management doctor, I might have a better recovery.