Protein malnutrition: Consequences

DianaCox

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This is a partial post - I couldn't find the rest - about a guy who posted on another board several years ago about how he lost his legs to protein malnutrition post-"DS", because he was non-compliant.

As a teeny tiny bit of reassurance, the amputee's surgeon was Adrian Heap, or Frankenheap as he was often called. For all we know, he did not have a proper DS in the first place.

This is from a post I made in June 2004 on duodenalswitch.com:

FYI: Dr. Heap spoke at the DS surgeons' meeting at the ASBS conference, which I attended. He described the surgery he is now doing, which he calls the "mini-DS" and it is VERY different from what we know the DS to be. What follows is what I remember of his talk, and I don't swear to its accuracy, but if you go to Heap, you should get the exact details from him of what he plans to do to you, and make up your own mind:

-- He does the stomach reduction, but also puts in a sialastic ring to keep the stomach from expanding later;
-- His version of the intestinal part is not at all a standard DS procedure, i.e., a Y shaped construction with separate biliopancreatic and alimentary channels that converge to a common channel -- instead he simply REMOVES a significant length of small intestine (MANY raised eyebrows in the audience) to induce malabsorption (note -- since the section of small bowel is removed in Heap's procedure, it cannot be revised to a longer length if there is too much weight loss or if there is a catastrophic bowel problem such as ischemia or strangulating hernia);
-- He also removes 6-8 lbs. of omentum, the membranous organ that I believe both connects and separates our internal organs -- claims it isn't necessary and "prevents adhesions" -- (more raised eyebrows).

This is only my personal opinion and impression of the reaction of the other DS surgeons at the meeting, but to say they were surprised and concerned would be an understatement. One of the other surgeons (Crookes?) commented that when he is forced to remove omentum due to cancer surgery, he finds MORE adhesions if he has to go back in. And you might want to ask Heap about his malpractice insurance situation -- he made some comments which related to his difficulty getting medmal insurance for WLS, but somehow doing this surgery made it OK? I didn't understand that part at all, but the other surgeons' eyebrows were hitting their hairlines!

ALWAYS ALWAYS make sure you understand what your surgeon is planning to do -- this is not the first case of a surgeon calling their procedure something that sounds like it a DS, but really isn't. I'm not saying there's anything inherently wrong with what Heap is doing -- I don't have the medical education to have an opinion -- but make sure you are fully informed before you pick a surgeon of what he or she plans to do. And getting a second opinion is always a good idea, especially if there is something non-standard offered.
 
Is Heap still out there? I hope he isn't. And he was in Washington, right? Back in the olden days on OH, I used to cringe whenever his prospective patients posted. I was honestly scared for them. I thought he had a whole bunch of legal problems related to his 'unusual' surgeries.

Lately I have heard some rumbles in the jungle about self pay patients being approached by surgeons to try some 'new' procedure they have come up with. I have some serious doubts about their methods of informed consent. Plus there is a huge desperation factor here. I remember when I was pursuing surgery my motto was thin or dead. If you are considering being a guinea pig, you should get a second or even third opinion. And a huge discount from the surgeon, like free or close to it. Try to get them to cover surgical complications too. If you are wondering why insurance won't cover this stuff, it's experimental. They want to experiment on you! Think long and hard about this!

That said, Dr. Buchwald once told me something better than the DS will come along some day. He said it would be a pill! Hope he is right! Pill or surgery, someone always has to go first and be that high risk number one. They will follow you closely to tweak their invention and do it better down the road. If it is successful, they will make a bejillion dollars off the risk you were willing to take. If it doesn't work, you are left alone to suffer the consequences. It's like playing poker with your life and well-being. You take the risk and if you win, you get thin and they get paid. They get paid a LOT!
 
Diana,
This is a great topic and one people need to understand. These surgeries aren't a text book one size fits all. There is no master surgeon overseeing a set standard of care. Look at the variations in the RNY....rings, Fobi, Sapalla micropouch, etc, Now look at some of the things being called a DS that we see...SADI, bipartitions, huge variations in stomach size and limb lengths, etc. Even ERNY's being called "DS-like"

We stress the vetted surgeon list. It's not only for operative safety, but also for optimal outcome, Balancing weight loss and nutritional consequence is such a fine line.
 
I suffer from protein malnutrition *NOT DUE TO DS*, but rather due to cancer surgery subsequent to my DS.

It is an absolute nightmare. I am sick, I am weak, I am exhausted, I faint, I have a sore, full, swollen belly that is so distended that strangers frequently ask me when the baby is due. It will have long term repercussions and could even end up killing me in the end. It is a fate I would not wish upon my worst enemy.

If there is one piece of advice I would give any new DS patient it is to make sure to get enough protein! There is no reason for you, having had a normal DS surgery conducted by an experienced, vetted DS surgeon, to end up in my shoes with proper dietary planning and the widespread availability of protein powders and shakes.

Here is a link for more information on the impact of protein malnutrition, also known as "kwashiorkor" ===> http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002571/
 

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