Misc. Updates #5
How I’m Feeling
Tough going. I’m feeling pretty miserable as I write this update, but I wanted to get this blog post out, so I’m pushing through.
I’m still “crashing” every day, even on the minimal diet.
Eating jello and taking fish oil seem to help soothe my gut a little. But I still have gut pain nearly 24/7.
I’m not sleeping as well lately and I’m not sure why. Just very fitful at night.
I keep having issues with my body temperature fluctuating. I get very chilled at times. And, no, this is not COVID. It’s something that I’ve had issues with for years, off and on. I think it could be an autonomic reaction to the irritated nerves. More likely, it’s thyroid-related.
I’ve been forgetting to take my vitamin D lately, so my joint and muscle pain is flaring up more. Because my gut is so compromised, it’s easy for me to get malnourished, even if I’m eating a balanced diet via my nutrition drink. When my vitamin D levels drop, my body hurts like I’m 80 years old. Even though I have a reminder on my phone to take my evening supplements, somehow, I still forget to take them!
Nutritional Drink
I started with the Kate Farms Peptide 1.5 drink a month or so ago. Last week, I started trying the Nestle Compleat Peptide 1.5. Last night, I recorded a short review video comparing the two. Not sure when I’ll have energy enough to edit that and post it, but I’ll get to it eventually.
The short highlight is that I prefer to mix both of them together. The Nestle doesn’t taste very good, but it’s MUCH cheaper. So if I mix them, I get a decent flavor at a decent price.
Surgeon Selection
Life is chock full of irony.
After so many weeks working so hard to get surgery… I got the call today that I’ve been waiting for!
I have the green-light for surgery with Dr. Sheikh in Los Angeles on December 10th. Everything is set for me to arrive several days before to take care of pre-surgery testing (COVID test, EKG, chest x-ray and blood work). My insurance has approved everything.
In just 2 weeks from now, I could finally be free of the pain, fatigue and misery I’ve been enduring for so many years. In just 1 month from now, I could be back home for Christmas and actually enjoy real food with my family without getting sick.
But… now I’m not so sure I want to go through with it.
As I explained the on the last couple of posts, I found a surgeon in Seattle named Dr. Starnes earlier this month. He’s my first preference for surgery because he’s done more MALS surgeries, has a phenomenal reputation with his past patients, and he’s very thorough in getting out all of the damaged nerves, even if they extend well beyond the celiac ganglion.
So now I have to make a choice: Go ahead with December surgery with Dr. Sheikh in Los Angeles, or wait and see about a March/April surgery with Dr. Starnes in Seattle?
At a glance, it seems obvious that I should just go ahead with surgery as soon as possible. But there’s more to it.
3 concerns about Dr. Sheikh in Los Angeles:
He does only about 6 of these surgeries per year. That’s not a lot.
I don’t how much to trust his success rate. I know of only 1 other patient, and he’s not far enough down the road of recovery to know if the surgery will be successful long-term.
I talked with Dr. Sheikh on the phone twice. I wasn’t able to get as much detail out of him as I would like. He assured me that everything would be fine. I am concerned that he will remove nerves only in the immediate area of the celiac ganglion, and not address nerves that may be damaged further away, like around my gallbladder and liver, where I’ve had pain.
3 concerns about Dr. Starnes in Seattle:
This week, 3 weeks will have passed and I still haven’t been able to get a consultation with Dr. Starnes. Until I talk to him, I really don’t know if and when I’ll be able to get surgery, exactly what his approach is, what his success rate is, etc.
I’m hearing from other patients that Dr. Starnes has postponed their December surgeries until March. So I’m not likely to get surgery with him until spring.
Dr. Starnes might require a celiac plexus block before I can get surgery. That’s the procedure where needles are injected through the back to the celiac ganglion nerves. Pain medication numbs the nerves for several hours. If you’re able to eat without pain, it’s confirmation that MALS surgery to remove those damaged nerves will work.
My concerns with a celiac plexus block are:
All of the doctors I’ve been able to find to do the procedure aren’t able to do it for another 3-5 months.
Even if I have a celiac plexus block, it will likely be pointless. The numbing of the celiac nerves typically lasts about 4 hours. I’d have to eat right away to find out if the block worked. But I don’t handle sedation or anesthesia well. It usually takes me a good 8-10 hours just to wake up after a procedure. And I have extreme dizziness, nausea and vomiting for about 24 hours. There’s just no way I’ll be awake or able to eat to know if the block worked. (I’ve heard from other MALS patients that this has happened to them.)
So I have a very hard decision to make. It’s sort of a “bird in the hand is worth two in the bush” scenario.
I’m going to think things over and make a decision on Monday.
For those who like pros and cons charts, here ya go:
| Dr. Sheikh (CA) | Dr. Starnes (WA) | |
|---|---|---|
| Insurance | Covered | Covered |
| Distance | Los Angeles, CA 1.5 hour flight 2 day drive Away from home about 3 weeks |
Seattle, WA 3 hour drive Away from home about 1 week |
| # Surgeries | Has not answered definitively, but about 6 surgeries per year. (He mostly does pancreatic / liver cancer.) |
Unknown until consult. |
| Success Rate | Has not answered definitively. Says he's never had a failed MALS surgery. | Unknown until consult. |
| Surgery Type | Open abdominal | Open abdominal |
| Ligament | Removes ligament tissue around the artery. Says he doesn't remove all the way around as that could cause a hernia. Removes "enough so that it is not a problem." | According to other patients, he removes the ligament entirely all the way back to the spine. |
| Nerves | Removes the celiac ganglia. Says he addresses any damaged nerves in the immediate area, but seems to be conservative in how far he investigates damaged / inflamed nerves. May not address nerves affecting the gallbladder and liver. | According to other patients, he is very thorough investigating and removing damaged / inflamed nerves, even beyond the celiac ganglian. |
| Celiac Plexus Block | Doesn't require CPB. Does required doppler ultrasound (which is done now). | According to other patients, doesn't always require a CPB. Not sure yet about my case. A CPB isn't likely to be succussful for me, so if it is required, going through it would cause unnecessary pain and delays. |
| Surgery Date | December 10, 2020 | Probably March/April 2021, but not confirmed yet. |
| Hospital Stay | Would be at a cancer hospital, not a general hospital. Probably less danger of COVID. A beautiful, nice, newer facility. Would be in my own room for recovery. | At a general hospital that is an older building and not as nice. Some photos online show disrepair. |
| Recovery | 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. Probably drive back for 1 week follow up. |
| My Confidence Level | 90%. I’ve heard from only 1 other patient who has used Dr. Sheikh. That patient has surgery this summer, so not enough time has passed to know if the surgery is successful long term. | 100%. I’ve heard great things about Dr. Starnes from other patients. |
| My Concerns | I am afraid that Dr. Sheikh won’t be as thorough in getting all of the damaged nerves. He said he gets enough of the nerves so that it won’t be a problem. But when asked if he explores further to remove damaged nerves, such as under the liver, he says, “No”. I have had recurring pain in my gallbladder / liver area, and have thoroughly ruled out any typical gallbladder / liver issues. I need to make sure those nerves and pain are addressed. I don’t want to have the surgery re-done by another surgeon. | I don’t want to endure another 4-6 months of pain and misery. I don’t want to have a celiac plexus block, because I believe it will be pointless. I have always had extreme reactions to sedation with extreme dizziness and nausea for 24 hours. There’s no way I’ll be able to eat after having the celiac plexus block. I never wake up from sedation until 8-10 hours after the procedure, even though other people wake up very quickly. |