Tragic - please be aware

[Katrina]

This is exactly what happened to my own daughter. She has since recovered some vision, but cannot walk. At 20 years old she became permanently brain damaged because she had WLS. She's not the only one. It's happening more and more. My daughter lived, but she's not living. It is an absolute tragedy that could be avoided if doctors would do their damn jobs and inform themselves about this horrible condition.

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*my daughter is Meg, so this is not her story. This is from the Wernick's group.


Please feel free to share.
My daughter Laura's story.

Disclaimers: I am not a doctor. I received permission from Laura to share her story.

This is written in the hope to keep others from experiencing what Laura and others have unnecessarily. And possibly what she may experience in her future. This is to serve to bring awareness and warning to a rare condition.

In May of this year Laura had weight-loss surgery. She had the gastric sleeve procedure performed. She developed an infection, which is being treated, but I believe the infection is secondary and did not cause her rare condition. Shortly after the surgery she became nauseous and remained nauseous for months. I think about two weeks after the surgery she started vomiting daily. She would go to her primary care physician and also to her bariatric surgeon and no one could give her answers as to why she was nauseous and throwing up daily or offer any suggestions. She was hospitalized in late July by her bariatric surgeon as he could tell that her body was in distress during a visit. Two weeks prior to that she could not hold down any food or liquid, she threw up everything she tried to consume, which wasn't much to begin with. She was in the first hospital for two days. One Dr. inferred that it was in her head that she wasn't feeling any better. They could not determine what was the cause of the inability to hold down food, there were issues that they could not identify as to what the cause was, such as spiking blood pressure level. She was then transferred to a second hospital because the first hospital did not have the equipment nor the personnel on staff to do the procedure they felt was necessary to identify what the issue was. She was transferred to that hospital and laid there for days worsening while trying different tests and no one could identify what was going on while her condition deteriorated. She entered that hospital with her mental capacities intact, she could move on her own but slowly, as she was weak from no nutrition for the two weeks prior to being in the hospital. The doctors were dumbfounded. Of course it got quite frustrating as we saw her get to the point where she could not see clearly, her vision was blurry, she began speaking like she was talking in her sleep, she stopped swallowing, couldn't walk, never closed her eyes, literally couldn't sleep for days and then got to the point were she couldn't speak or communicate in any way. The first sign to me something was wrong was the vision issue, the medical staff equated it to the pain and nausea medication. Then I mentioned the dream state type confused speaking to the staff. They asked her a couple of questions and she answered them correctly, and went on their way. They didn't know what to do and what was going on. They did have her on an IV but we later found out it was the wrong thing to do in her condition since the iv contained sugar, remember that.

Someone had reached out to Laura's father with a phone number of a doctor who said he knew what was going on that it was serious and needed to be addressed immediately . We contacted them and they said that Laura needed to be immediately transferred to the hospital they were located in so that she could immediately start receiving treatment to avoid irreversible damage.

Turns out that Laura was experiencing a vitamin B1, thiamin deficiency and that resulted in a condition called Wernicke Encephalopathy, a rare condition that affects the brain. If not caught in time can cause irreversible brain damage or even death. At this point in Laura recovery we do not know what damage may never be recovered from or what abilities she may regain after a period of time.

Laura was persistent in her efforts to find out why she was vomiting every day. Searched out answers in online groups trying to identify the cause and went to multiple doctors. Even though this condition is rare it is generally found in individuals who are alcoholics, as alcohol (sugar) depletes B1. But women who throw up a lot during pregnancy, those who have anorexia, those who have had weight loss surgery also are affected due to malnutrition due to not being able to consume nutrition or their bodies are not able to absorb the nutrients that it needs. Vitamin B1, thiamine is vital to our brain function. But most of the general population does not know this nor do most doctors. If they did know they would known to administer vitamin B1 right away to avoid the damage that being B1 deficient causes.

As I said in the beginning of this, my hope is that this may prevent someone else from going through what Laura is currently going through and what others have gone through unnecessarily. If you are constantly throwing up, it is not normal. Please have your doctor administer B1 thiamine. Even if they're going to test for your B1 levels it takes days for the test results to come back. Taking vitamin B1 will not cause you problems as its water soluble. But not having it administered in a timely manner could be detrimental to your long term health and your life.

Laura is in her 4th week of hospitalization. She has a long way to go to recover. Sad part all this was avoidable had she known early enough to treat the B1 deficiency, if her doctors had only known. We're hoping for the best but yet preparing for some hard days to come. Keep Laura and her family lifted up and send out those positive energies for change out. Thank you to all those who helped this way.

Let's get the word out there. Let's not let others suffer needlessly. If you run across anybody that you care about that can't eat, can't absorb food properly or vomits a lot let them know about Wernicke Encephalopathy. If it goes too far it turns into Wernicke-Korsakoff syndrome which is even more serious as Korsakoff psychosis is permanent damage to areas of the brain involved with memory.

Feel free to share this over social media. Let's together prevent others from experiencing this horrible condition that some may never recover from.

Please search YouTube and Google for more information on Wernicke Encephalopathy to know more.

Search Google for an excellent article in pdf.
"Wernicke’s Encephalopathy:
Under Our Radar More Than it Should Be?"

[AnnieStillG]

Thank you for the information....

[Loveangel104]

As someone going in soon for surgery, I thank you for the information.

[Christie13]

It is still shocking to me that as long as the sleeve has been around that this is not more commonly known information. I mean, my sister was sleeved almost 7 years ago and it wasn't a new surgery then. So sad that this isn't being passed around the surgical and medical community in general.

[Katrina]

It is disgusting, Christie. It should be automatically assumed when a wls patient presents at the ER with vomiting. B1 should be administered immediately. It won't hurt if that isn't the problem, but can save a life if it is. We are over 2.5 years out from my daughter's diagnosis, and I still cannot accept what happened to her. I cannot believe that she is permanently disabled because they failed to recognize her vitamin deficiency despite me echoing it relentlessly that she had no nutrition for over a month. I know they looked at this overweight girl and thought yeah sure she hasn't kept anything down. I am so so angry and sad that my baby could have been saved from this life if they wouldn't have been so negligent. They said she was faking!

I had to rush her to the hospital last month for what was looking like the same thing. I knew what exactly to demand this time, and the doctor immediately gave her thiamine iv and potassium. He asked who the doctor was that called Meg a faker initially. When I told him, he said that is his personal doctor. My ex-husband (Meg's dad), husband, and I all chimed in with varying messages of well, he's a piece of shit, and you should find a new doctor. I hope he told his shitty doctor exactly what we said. Meg is doing ok since she was released, but it is heartbreaking to see the shell that remains where my once lively child used to be.

Sorry if this is incoherent rambling. I'm shaking from crying si hard just remembering all we've been through and continue to go through.

[Katrina]

I often wonder about our friends here that were avid posters up until their surgery then disappear soon after... are they also victims of this tragedy, unable to tell their story? I know my daughter isn't capable of telling hers, but I am here to tell it for her. How many have fallen to this with their stories left untold? We're here seeing all the people saying it was the best thing they've ever done for themselves, and how much better their lives are for it. The people who don't have that story aren't here to be able to warn others.

I'm not saying it isn't a great, life-changing surgery, just know that all doctors aren't aware of what to do to help when/if you get in trouble. I just want people to know what to ask for if persistent vomiting presents. THIAMINE! Don't let any doctor blow you off. It is SO important.

[Dutchie]

Thank you Katrinrna, for sharing this story
I am so sorry for your daughter.
You are right, this should be commonly known by surgeons and PCP's.
This is so terribly sad...
And so unnecessary.

[Stacey03]

So sad and good for people to be aware of. You do a good job caring for her Katrina

[sraebaer]

You are an amazing mom and I'm so sorry this has happened to your daughter. Are there any statistics out there as to how many people this has happened to, or is it just something being ignored? Lets hope all surgeons are aware of this possible complication.

[jessiejess]

I guess I'm very fortunate that my surgeon prescribed weekly B12 shots when I went in for my first follow up. He said he was giving them to me because there could be "B12 absorption issues". I gave them to myself for over a year and was just recently started on them again. I didn't even know this problem existed. Thanks for the information.

[Happyme2]

My doctor prescribed B1 - NOT B12 before surgery. I am stilled taking it until my 3 month checkup.

I also take B12 chewables daily.

[SAMom]

I am so sorry this happened to your daughter. I’ll continue to pray for her strength and improvement. God be with you both.