Very rare but serious topic to RNY folk

This is a very insidious disease. I am working with neurologists, my bariatric surgeon and others. It is a rare disease with no cure. It steals your mind, and personality but unlike Alzheimer's you are very aware you have it and what it happening.

There are many types of encephalathy, the kind I have is Hyperammonemic Syndrome After Roux-En-Y Gastric Bypass Surgery/ Instead of boring you simply "Google it" and watch HE "Wrestling with the Monster. I am not asking for anything but to let you know I appreciate and love all my friends and family. There is no cure as of yet. Period.

If any of you KNOW a Medical Doctor who specializes in Gastroenterology, bariatric surgery or Neurology I am always willing to share medical abstracts with them from hospitals such as Baylor. etc. As well as share my labs, and participate in any trials.

Please forgive if I don't write a lot on here or respond right away unless you are a Surgeon, GI Doc or neurologist. It can often take an hour or more to simply write a post like this and then have someone go over it. Sometimes I just seize up and forget what I am doing.

I no longer drive, and often have Alzheimer's or dementia like symptoms along with various seizures. This started around 2013. I want to let people know more about this including medical personnel because so many more people are having Bariatric surgery especially due to shows like "My 600 lb life" etc. Really, really, THINK before making that step.

I wish ALL of you love and harmony, I have learned from ALL of you, family and friends. If for some reason I am unable to post anymore, my family will make a final post. Remember, this really only (as far as I know) affects RNY and DS patients; and is often finalized on the autopsy table. Here is what the Syndrome is caused.

"Hyperammonemic Syndrome After Roux-En-Y Gastric Bypass" by Andrew Z. Fenves (et al) www.obesityjournal.org out of Baylor University/College. and Baylor University Medical Center Proceedings "Late Presentation of Fatal hyperammonemic encephalopathy After Roux-en-Y gastric Bypass. Amulya Nagarur et.al.

Many, many bariatric surgeons are not aware of this because the symptoms are vague at first and then present in very certain ways. I had my RNY Jun of 2010 so I am NOT trying to scare anyone, but to alert you. I still do NOT regret in any way my surgery there are only 100 cases VERIFIED via vivisection autopsy, however there are more bypass surgeries being preformed. 99% of RNY patients will never get this, but I wanted to address this to the community.

With Warmth and support to all, no matter WHERE you are in your stage of fighting obesity.

thanks for the post and info. Can I ask a question? Have you liver numbers been out of whack since your surgery? Aren't you about 7 years out?

the reason I ask is that I've been to gastro specialists in Atlanta who thought I had that sphincter of oddi later to rule it out. Seeing a liver specialist next month, I will ask him about this,,,,

YES!!!! AST/SGOT and ammonia levels were always high after RNY surgery. Had liver biopsies done (3 total) they thought Sphincter of Oddi Disorder too and I had the stents done. Levels came down to normal for a few weeks then back up. I do NOT drink any alcohol nor eat anything not bariatric approved. NO fast food. Ammonia started to spike less than a year after Sphincter of oddi stents placed then came the seizures. I had NEVER had grand mal seizures before. I am currently on Rifaxin (Xifaxin) for the high liver/ammonia levels and Keppra for the seizures. Talk to your liver doctor about at least the medicine Xifaxin. Do NOT drink ANY alcohol at all, period, never! It will poison you and could literally put you in coma or death. My liver biopsies and all is "Normal" no fatty liver, no cirrhosis no hepatitis of any kind nothing.

Do not take NSAIDS and be very, very sparing (no more than 500 mg) of Tylenol (Paracetamol) a day because the liver is just not filtering as it should. The medications Lactulose or Xifaxin will try and do the "filtering".

Print out the articles links I gave you and take them to your doctor. Sending you love and best of wishes.

Warmly,

Jackie

Hello,

So sorry that you are suffering with a rare post operative disease. I have autoimmune disorders Sjogrens/Lupus and see a neurologist, rheumatologist and a gastroenterologist. As you already know, getting all of these specialists on the same page is the problem for treatment and care. When you mentioned encephalitis, the first thing I thought of was advanced Lymes disease. My sister has seizures and brain swelling, brain fog etc.. She has not had a RNY though.

I am so sorry you are going through this. Thank you for taking the time to share your story with us.

Wow. This is quite scary. I'm sorry. It's definitely something I'll bring to the attention of my surgeon next time I see him

Question: Do you think there's something revealed in blood testing that would have helped you in seeing this sooner?

A simple yes or no will suffice.

Plasma ammonia testing.