Hyperammonemic Syndrome After Roux -En-Y Gastric Bypass. 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. I have NOT found any info on DS forms of this surgery, because I have not looked; however that does not mean it might not exist. Within your own DS Community just be alert.
Thank you kindly for your input. Wishing you the best.
What are the symptoms people should be looking for?
I'm not so sure DS people are immune to this disorder. THIS article says it is can be triggered by malnutrition, which can happen to any of us. With so many more people having had RNY compared to DS it just may not have reached anyone's radar with the DS. I think it is something we all need to be wary of and am glad the OP posted here, too.
Laura in Texas
51 years old; 5'7" tall; HW: 339 (BMI=53); CW: 140 (BMI=22)
RNY: 09-17-08 Dr. Garth Davis
brachioplasty: 12-18-09 Dr. Wainwright; lbl/bl: 06-28-11 Dr. LoMonaco
"If what you're doing doesn't work, change what you're doing - don't complain that it doesn't work."
You're right. Severe deficiencies could be an issue for DS too and maybe there just isn't a big enough sample to include in studies like this. I was really thinking in terms of healthy DS'rs that are not having deficiency issues. Certainly the genetic mutation they talk about could show up anywhere.