Neurological and sleep issues after gall bladder removal

I regret every day I had gallbladder removal. I had constant pain in my upper stomach area. Doctor said my gallbladder had sludge and needed to be removed. Fell for that. It never got better and digestion is a million times worse. Still have pain only more. If I would have gotten another opinion, I probably be fine. What the issue is, is I have a hiatal hernia. Now with the gallbladder gone, acid is backing up so much worse. New Gastro Doctor said the problem will get better, but will resurface and need more meds. Lifestyle as far as eating has to change. Sleeping on a bunch of pillows for elevation created neck issues. I bend over to do anything the acid is up in my throat. I bought a $5,000 bed to sleep elevated. So, GET SECOND opinions. FYI, Medicare allows it. A few hours of investigating other opinions may save you a lifetime of misery. Now I have a lifetime of extra issues now. My later years of my life are tossing and turning, getting up all night drinking water and expensive pills.

"Have you had any success with figuring out how to handle this? Any updates on your health? Have you found any doctors that actually care to take an interest?"

Along with the other issues, my athletic ability also rapidly declined. I was in the best shape of my life heading into this. Three days after my surgery, I walked five miles. Six months later, I was unable to stand without staggering. I couldn't run because my knees felt weak and would buckle while walking. I also lost sensation in my muscles and did not get that calm, satisfied feeling after exercise. I too wondered if this was how old age felt. This has improved with training, but two years postop, I am still not as strong or coordinated as before.

I suspect that the surgical procedure, or changes to digestion and nutritional deficiencies , or all of the above, had some sort of effect on the central nervous system. There is still so much that's unknown about how the brain works, or even the mechanism of how the anesthesia and a few other drugs I received prior to and during surgery work. So figuring out if this was the cause may be fruitless.

My cognitive issues have improved the most, but I continue to lose my train of thought. Finding words on the fly, as well as motivation and focus, are still challenges. I attribute those to persistent insomnia, and I'm hoping that if that improves, the remaining cognitive issues will as well.

After being gaslighted on several occasions, I believe I have found a physician who is as perplexed as I am and is working with me. I've had numerous blood and hormone tests, and almost everything appears to be fine. My brain MRI revealed nothing that could explain these issues. The Indican test was abnormal, which prompted me to suspect that tryptophan metabolism is broken. That might explain insomnia as a functioning tryptophan > serotonin pathway is a precursor for proper sleep.

I should mention that in the time period prior to and after the surgery, I was experiencing chronic stress due to some personal issues with my family. Stress makes everything worse, but I was able to manage it prior to and immediately after the surgery. Only after the cognitive symptoms began in earnest was I unable to handle any stress at all. Also, I can't tolerate caffeine afterward because even half a cup makes me extremely jittery, sweat profusely, and unable to sleep at all. I owned a coffee shop before and had a pretty high caffeine tolerance.

Also, the contrast MRI I did prior to surgery discovered some lesions on my pelvic bone that they wanted to further investigate, so I underwent a full body PET scan and another contrast MRI about a month post op. The lesions were benign. My cognitive symptoms started after these two tests, but I don't necessarily believe they are the cause, although I can't rule them out either.

Were you experiencing chronic stress at the time, and what specific scans did they perform on you?

This article is an interesting read:
https://www.sciencedirect.com/science/article/pii/S2161831322002952
"The gut microbial influence on tryptophan metabolism emerges as an important driving force in modulating tryptophan metabolism. "

"Tryptophan is an essential amino acid being utilized for protein synthesis and, thereby, affecting the growth and health of both animals and humans. In addition to serving as a nutrient, accumulating evidence has revealed that changes in the gut microbiota composition affect the GBA by modulating the tryptophan metabolism (10., 11., 12.). "

"On the one hand, tryptophan serves as a sole precursor for the biosynthesis of the neuroendocrine transmitter serotonin and, subsequently, a pineal hormone called melatonin (21)"

"The tryptophan availability can be altered in a vitamin B6–dependent manner, as evidenced by an impairment of the tryptophan metabolism after a vitamin B6 deficiency (24)."

One thing it says is that tryptophan is cleared from the body via the liver by it producing an enzyme called IDO. People with inflammatory bowel disease often OVER produce IDO causing more tryptophan to be cleared from the body than it should be.

Another interesting this is the B6 issue. Funny enough, I was diagnosed with high B6 after a blood test, yet I am low in all other B vitamins. So I think that's some hint that this is the right tract.

In short, I think that our gut microbiome was affected and it did mess with the tryptophan pathway, which also affects melatonin and serotonin, which is causing most of the symptoms. But that's just a theory and I can't prove it. I thought I'd share the article though.

Wow. It is really like reading exactly what happened to me. I've never spoken with anyone that had these exact same symptoms before.

Yes, same here on the athletic ability. My endurance fell off a cliff. I think I said it in one of my posts above, but I was a runner. Five miles every day without fail for years before. After my surgery, I tried to get back to it. Even two weeks post-op I tried. At first, I chalked up my lack of endurance as just recovering from surgery. However, I never got it back. Like you, my muscles felt weak, almost to the point of giving out. I was also in the best shape of my life going into the surgery.

I also told my family that I felt I had aged 2-3 decades in the space of a month or two. And I've never really recovered since then. I've tried and tried to get back into running. I still force myself to walk daily and I still weight train, but it's nowhere near what I could do before.

Like you, I had a lot of stress in my life, but only AFTER the surgery. I wasn't stressed at all prior to the surgery. The stress after was because I kept trying to push myself to keep up with what I used to do. That caused a lot of stress, along with the fact that I felt a lot worse. Eventually, I had to stop doing that because I just couldn't keep it up. I definitely know I went through a lot of physical and mental stress in the months following the surgery. I also lost about 30 lbs (and I was already normal weight) because I couldn't keep food down. I ended up with gastritis and bile reflux after.

Additionally, I'm a writer. The cognitive effects have had a massive impact on my career. My imagination is totally gone. I've been to a lot of doctors and specialists about the cognitive fallout. I also had an brain MRI. Nothing abnormal. And yet, there is a clear difference in before and after for me.

I've also suspected it has to do with sleep. I'm not sure what exactly is happening and none of my doctors know either. Like you, the constant gaslighting from doctors after left me with no answers. Most of the time I don't bother even telling them these issues any longer because they all say it isn't related to the surgery. Yet, I had none of these things before and all of them directly after and nothing else in my life changed.

I've had a lot of CT's (with and without contrast) since, so I suppose that could be an issue. I'd never had one before. So THAT is also something that changed. Plus the exposure to anesthesia. Though, I'd had some light anesthesia about 15 years ago when I had my wisdom teeth removed. I didn't have issues following that procedure. So perhaps the radiation or the contrast? I'm not sure.

Exactly like you, I can't tolerate caffeine AT ALL now. Prior to the surgery I was a caffeine fiend. I love hot tea, and always drank it clear up until bedtime...fully caffeinated black tea. Yet, never had issues with sleeping or the caffeine. Now, I can't drink even a cup in the morning. I'm jittery, my heart rate goes up, and I can't sleep at all that night. So, that's another similarity.

Scans:

Prior to the surgery: Never had a CT, MRI or anything but an Xray in my life. Like I said...I was healthy.

After my surgery: I've had a bunch of CT's now (with and without contrast)...probably 10-15 total. Doctors trying to figure out the issue. I had a brain MRI without contrast, but that was only this past year and I had ALL those symptoms prior, so it definitely isn't that. I've had anesthesia now 3 times: once for the gallbladder removal and I've had two endoscopes since. I've had some ultrasounds was well.

How I manage now:

I was taking a Bcomplex for awhile and that was helping some of my cognitive symptoms. I did test low in B12, B1, and vitamin D as I said before. Plus, phosphate, which is really rare to have a deficiency in. The Bcomplex seemed to help with the tremors I have and help my brain function a bit better. However, about a year in, my hands started going numb. It took about 3 months to find out that I cannot take B6 because it causes the numbness. Now I take B1 several times a week and B12 every other day. I take vitamin D every day. And, I take prescription phosphate about 3 times/week.

All of those things help, but they are not a cure. They haven't solved my issues, but they have improved my symptoms slightly.

I also have to take a bile binder (cholestyramine) because of the bile refluxing into my stomach. It causes gastritis if I do not take the bile binder. So I take half a packet at night and half a packet in the morning. I know it isn't the bile binder causing my issues because I did stop it for a little over a year. Nothing changed excepted I struggled more with gastritis.

My cognitive symptoms started immediately after surgery. I tried to write the following week and I couldn't. Again, I thought I was just recovering.

Again, personally, I think it is changes in digestion, nutritional absorption and a combination of things they don't understand yet. Just like the gut microbiome. They know that can even affect our serotonin levels and they know an imbalance in gut bacteria can cause depression (which I don't have), so I suspect that the microbiome is the key to our issues. Constant exposure to bile permanently alters the gut microbiome. It also alters our metabolism.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6352247/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8118133/
I think I am going to ask my doctor about an Indican test. I doubt they will do it because they won't run anything that isn't a super common test. I know that my bun levels have been low, which has to do with protein. I eat plenty of protein and I mix my own protein shake most days. So I'm not sure why my body doesn't seem to be absorbing it correctly anymore. I'm assuming THAT is the key to our issues.

See, elevated indican levels can be associated with low stomach acid and also poor production of bile. Well, I literally have to take a bile binder, but even when I wasn't...I don't think my body is producing the bile it needs. From what I've read, the gallbladder concentrates the bile, making it stronger. Without it, the bile isn't as efficient at breaking down nutrients.

Anyway, I've written a book here. Sorry. It's just you are the first person that I've found that shares my symptoms almost exactly.

Hey, I was wondering if your symptoms got any better or completely went away? I am 2 months post op from gallbladder removal at first I experienced full body numbing, euphoria & a delirium like state, that went away now I feel better but still feel like mentally I cannot focus the same and I am constantly fatigued. My attention spam is not great either I still get dizzy out of random & I have a 6 month old baby and an almost 3 year old toddler. This has got to be the hardest thing to deal with by far. I just want to get back to being my old self I'm only 21 years old.

Hi @kellysv, and welcome to Mayo Clinic Connect! It sounds like you have your hands full with beautiful kiddos while trying to heal your body from surgery at the same time. The feelings you are having are scary and make it so, so much more difficult. You can do this!

I thought I’d follow up and tag @terri9, and also invite @garrison to hopefully provide an update on their journeys.

I relate to some of what you describe and have made the most progress once I found a doctor willing to walk through my symptoms with me. It sounds like you have seen a surgeon as well as a OB/GYN recently. Do you have one in particular you trust, or knows the most about you?