Horror Story

[mdbrowneyes 3]

No HIPAA laws were violated here. She was not involved in care of patient. She can speak of her sister's experience even if it bothers others.

That's the right of free speech.

[sleeveme11 15]

Wtf.... well I at least killed a whole day reading this nonsence. It was almost as good as Maury! Didn't your mothers teach u if u have nothing nice to say.... don't say anything at all

Lol :-) :-)

[clk 3,519]

I strongly believe that insurance should encourage and pay for people to work closely with nutritionists, counselors, and some type of physical therapist or exercise coach to provide weight loss solutions rather than ONLY funding surgery as a weight loss option. Our healthcare system is so screwed up - but that's a whole different discussion topic.

Thank you for the update and clarification. I'm very, very sorry to hear about the long road to recovery your sister is and will remain on for some time. I hope it gets easier for her, but I better understand where you were coming from.

I truly believe that both positive and negative feedback about the sleeve is very, very important. There are real risks. Yes, they're rare, but when you or someone you love winds up in the 1%, statistics are not reassuring.

Your final input was what really hits home. I self-paid but still did a huge amount of research before having my surgery. For years I went back and forth between nutritionists and physical trainers and spent a small fortune on pills, diets and weight loss programs. I'm not saying WLS was the only solution. But I will say that there are a huge number of people that wind up on VST already sleeved with ZERO idea what to expect, what to eat, not knowing the warning signs of a leak, etc. And many of these folks are covered by insurance! It's appalling - and it's very scary that on the one hand, some of us have to fight our insurance for simple things like our kids' allergy meds but other folks are getting handed a pass for surgery after less than six weeks of working up. I realize this isn't the norm, just as I realize that your sister's very real horror story isn't the norm.

But having a very active thread out there (all the nonsense and name calling in the middle aside) and almost forcing newbies and researchers to stumble upon it is important. Too many people avoid any type of posts about the complications - or even about simple things like stalls and normal post operative discomfort. The very idea your sister had, that it wouldn't happen to her, is what many with complications have - in some cases I think education would really help adjust the expectations people have.

So, all that to say thanks again for posting and sharing this story. I pray your sister can eventually recover and that you will continue to advocate on her behalf and support her while she's suffering.

~Cheri

[maharet111 544]

I honestly have to laugh at the negativity some people brought to this thread. It amazes me that grown people who come from all walks of life and varying experiences are the first to jump on a post to either refute, bully or just downright be rude and then hide behind "it is a free country and I can share my opinion". I was teased immensely for being fat and I would never post such things to make anyone else feel hurt. I think some of you have forgotten how words can hurt.

I have lurked on these forums for a while and it always seems like it is the same few.

[cerenatee 90]

Im sorry for your sister... but your "scare tatic" should be to warn people to research the Docs they choose... what happened to your sister sounds like Malpratice to me... I hope you got a good attorney.

People that make this choice usualy do TONS of searching for the right Docs, the right Hospitals. It sounds like your sister made a bad choice and is now paying for it... THAT is the message you should be telling people about.

I think the point of the story is that even with the best surgeon and medical staff, crap happens. The truth is there is a chance - a small chance - that we may end up on a feeding tube, we may end up suffering for months, we may end up needing more aggressive surgery, etc, a lot of messed up things may happen. No matter who your surgeon is, that person has had some bad results.

We just have to determine if it's worth the risk. Hearing that I may have a leak and being told what that really means is too different things. I'm glad the OP posted her sister's story.

However, even though I'm absolutely terrified, it's worth the risk for me. I pray to God I'm not her sister but I accept the fact that I may be. Now the decision is made and it's in God's hand.

[cerenatee 90]

Sorry to hear about your sister, but first off you're violating her privacy and HIPAA by releasing her medical history publicly on the net. I had the surgery new years eve. I knew leaks were a possibility as does anyone else who has this surgery. Hell you can die on the table giving birth to a child - do you think every woman should quit going through child birth? It's a known risk you take - sorry it happened to your sister.

This was probably already stated but HIPAA only applies to medical personnel who has access to your medical files, not family and friends or anyone else.

[cerenatee 90]

Shockingly I am back? What the heck does that mean? I don't have anything against you, to be honest with you, you don't even register in my mind. The reason I mentioned you is because when I read this thread I saw you discouraging people from getting the VSG. You're being irresponsible in doing so because of the overwhelming imperical evidence that disproves the fear that you are peddling here. Bottom line, VSG surgery is overwhelmingly safe and changes lives for the better. You had a bad experience. We have all heard about it MANY times. Move on and move over and let the rest of us get on with improving our lives.

Iggy, please, please, please do not move on and get over it. New members join the site every single day. We NEED to hear stories like yours. Too many people are like Frank - they had a good experience and they want everyone else to have what they have. But the truth is not everyone will have that experience and when the complications and disasters occur, it will be people like Frank saying we didn't research enough, we didn't follow the diet, we didn't breathe correctly, whatever.

I need to know the bad stories because I NEED TO KNOW what the look out for. I need to know what to tell my family and friends to look out for. I need to know when to back off and when to push back.

DO NOT LISTEN TO THIS MAN OR ANYONE ELSE THAT TELLS YOU TO STOP TELLING YOUR STORY. They will not be the ones on feeding tubes going thorugh numerous surgeries, scared every day about what your life is going to hold. They won't be there taking care of our families, paying our bills, or seeing to our medical needs. We all need to make INFORMED DECISIONS and the negative stories make the complications real in a way "may have leak or fistula" doesn't.

DON'T STOP TELLING YOUR STORY!!!!

[rollargirl 210]

I'm glad I read the OP ... I wouldn't have had any idea to be worried if I had "flu like symptoms" and know that it might have to do with surgery complications. So thank you for posting your sisters story. Some say there was no reasoning behind it - I learned something.

*Because the OP only had the one post, has no relevance to this being a "dodgy" post ... She wasn't researching the VST she wanted to inform people who were what can happen.

[Txcowgurl 44]

1/29/13 - Update/Edit:

As several have inquired about the timeline and were confused when i said her surgery was in May but she's been on a feeding tube for two years. The surgery was May of 2010. I was specifying the month only as a point of reference for the point at which the issue became critical (July 2010) and how long she was in the hospital that first time (into October 2010). She was also hospitalized for a few months in January 2011 when the stomache leak/infection spread through the diaphragm and into her lungs' date=' and again the following spring and summer of 2011 for the same issues. Sorry for the confusion.

Also - I agree that the bulk of the issues centered around follow up care - which is why I was so specific about where and by whom she was being treated. But I quickly learned that such leaks and subsequent fistulas are NOT uncommon with this type of surgery - I never said they were the majority. Additionally Physicians who are now caring for her have previously cared for individuals who suffered similar, though not quite as critical, issues after having this type of surgery. So that is legitimate.

Good point on the Hipaa item - but I'm not sure that applies to family or friends sharing information they are aware of. I have no professional or legal obligation to her or her care and am not a POA or medical care provider.

Thanks to all who have read and responded - I'm still reading through them all.

****************************************************************

Original post:

I have not had gastric sleeve, but my sister has and this is her horror story. In the month after her May surgery, by Dr. Chua of Aurora Sinai in Milwaukee, my sister (Jane) came down with flu like symptoms. Although she contacted her primary physician, who was aware of the recent surgery, and I believe she had an office visit with Dr. Chua, nobody showed any concern about infection. This is despite the fact that EVERYBODY knows that infection mimics flu like symptoms and it was nowhere near flu season. Nobody ever did any scans post surgery to determine of there was any issue with the healing of the internal surgery area - even though I have since learned that other patients had experienced similar issues to what my sister was about to go through.

It turned out (after three ER visits in three days, despite the fact that I said I was worried about infection from the very first visit) that a staple hadn't held and that food/fluid had been leaking into her abdomen from the stomach causing a MASSIVE infection. By the time Aurora Lakeland in Elkhorn paid any attention to this she was almost dead. She barely made it through and it was literally touch and go for WEEKS!! AND that hospital wouldn't even treat her because they don't do bariatric surgeries - she had to be airlifted to Milwaukee.

What followed were numerous surgeries, months in ICU and then regular hospital (from July 4th weekend into October), an induced coma with her hands strapped to the bed so she wouldn't inadvertantly pull out tubes and wires, being intubated for breathing assistance, additional infections, memory loss of that entire time, and leaving on a feeding tube. She has been on that feeding tube for over two years now.

Oh she's thin alright. woohoo. But she gets her food from a bag hanging on an iv rack and has to grind her meds and flush them through the feeding tube line, as well as a drain that collects Fluid from her abdomen and open wounds that need daily care. She has NO muscles left. She probably couldn't walk a block if she was allowed to.

She came home from that hospital stay with a GIANT open wound the length of her abdomen - I mean it was big enough for me to stick both my hands into - and a wound vac installed in it to constantly vacuum up the Fluid and goop that goes along with healing. That fluid drained into a plastic container that hung from tube(s) coming out of her abdomen - which she had to have with her always. It was all very painful and really gross.

That was just the first hospitalization. By January she was back in the hospital with another massive infection that had burned through her diaphragm and into her lungs. This time she spent her time in pulmonary ICU. You see they told her to start trying to eat - that they thought the holes in her stomach had closed, but they didn't do regular scans to verify this....again! They were wrong. Again.

Only this time her primary physician, Dr. Rosol of Aurora Lake Geneva, had diagnosed her with pneumonia over the phone and had given her a prescription not even strong enough to deal with pneumonia. So when she didn't get better, by the time the Aurora ER took her seriously she was again near death. This time they had to do lung surgery AND abdominal surgery to clear out and treat the raging infection caused by fluid and matter leaking from the stomach into everywhere.

So apparently this type of thing isn't that uncommon with this surgery, nor are the "fistulas" that develop as a result of this complication from this type of surgery. If the tissue around this fistula isn't so damaged that it can heal on its own it could take years. If it's damaged - as hers was from all that infection - there is no sewing it closed and it doesn't heal on its own. Imagine being on a feeding tube for the rest of your life - never tasting food, never enjoying a meal or a drink or a dessert or a holiday with your family again. Never a chocolate bar, or a bowl of Cereal, or a salad, or a glass of juice. NOTHING. All because someone convinced you that gastric sleeve surgery was the answer.

So if you are considering this surgery, don't. It's just not worth the risk. I know, if my sister could go back, she would choose fat over this lack of a life any day of the week. I grew up thin and am now fat and I would NEVER EVER EVER have a surgery to reduce my weight. Although I haven't been able to be disciplined enough to do it I know the only solution is eat less, move more. Two steps. The only solution.[/quote']

***************************************************************************

Sent from my iPhone using VST

Edited September 29, 2013 by *susan*
Rude and against forum rules.

[MzGee 65]

The story does sound fishy and oh so similar to one featured on the Discovery channel or some cable medical show where they follow over weight people who going to have WLS. But in this story the guy who had WLS was ok once released from surgery but no one knew he had a drug problem and was smoking meth and slipped into a coma and was on a feeding tube everyone thought it was the surgery but it was his drug problem. After almost a year a close friend revealed to his parents that he had a drug problem.

[brandiga03 6]

Are you kidding me? Everyone knows there are risks. ITS MAJOR SURGERY!!! The fact is, for the people that choose this surgery, the very very small risk is nothing compared to our quality of life, our health and our expected life span. Her situation is not the normal. Perhaps she had a bad doctor, definitely a bad PCP and probably a crappy hospital. I had to have mannnnny classes on this surgery, watch videos, see a psychologist for 2 months, watch videos, and do quizzes. I understood each and every risk and I knew what to look for. If she was having these problems and knew something was wrong, why wasn't she taken to a different hospital after the first failed ER visit. My surgeon does leak tests during surgery. They use a multiple staple line as well as glue. I followed the diet post op so as not to damage the stomach. Who knows what caused the leak, there are many factors into this. The fact is she is a minority in this group and the morbidly obese people need this surgery to save lives.

[erica6137 50]

She said her opinion' date='[VIOLATION OF FORUM RULES'] and hate on her,calling her an idiot,you are the idiot,if you disagree alright,[VIOLATION OF FORUM RULES].

[SassySenior 111]

Like Cerenatee above, I also read horror stories, albeit reluctantly. I am still pre-op but I have a mountain of information behind me about the procedure. I researched any doctor I was considering as well.

There are good surgeons and there are idiots. Bariatric surgery attracts some M.D.'s with minimal qualifications. But the overwhelming majority are good surgeons and good doctors.

I am a high risk patient, and for this reason, I took a deep look into the surgery and those who perform it. I was 425 lbs. when I started and 65 years old with a previous heart attack.

Even though I'm 381 now, M.D.s still say I'm high risk. I figure my best bet is with the best surgeon I could find. I searched for 2 years and found 2 imminently qualified surgeons.

While it is nice to have a friendly staff, my only real concern is the guy with the scalpel. What's his track record? How many surgeries has he performed? Do daily? You don't want someone who treats surgeries with an assembly line mentality, rushing them through as fast as he can. It does take time and effort, but you can find the best surgeon if you do your homework. My life is worth doing due diligence.

I have an enormous pile of information I've copied from posts people have made, online info, doctor's articles and comments ... you name it. I now know all of the important questions to ask ... and there are quite a few. This, to me, is the least I need to do ... and think others need to do also ... to go through the surgery successfully.

I am disliked by some people because I have a low tolerance for stupidity. When someone, usually who's already sleeved, starts asking questions they should know the answer to, it bothers me. If they don't know the answers to the simplest things about bariatric surgery, I doubt they did any kind of due diligence or know nada about their surgeon.

It's hard for me to keep my opinions to myself, especially when I read about someone who weighs 200 lbs. and is having this surgery. Boy, that's a big call about a smallish problem.

I need to lose over 200 lbs. I considered all the different types of surgeries and their implications, and decided the sleeve was the safest for me with the best potential outcome.

Sista's Sistah had a horrific experience, and my heart goes out to both sisters and their family. I only hope that medical science will pull a miracle out of this disaster and give her back her life.

If you want to be scared off this surgery, there are a number of groups you can join. We're obviously a pro-surgery site full of intelligent people who have done their homework, intend to follow the guidelines and live a life without many of the goodies we used to eat. I am not a saint ... actually far from it ... but I figure this surgery will reduce my hunger quite a bit, and that alone will result in my losing weight.

I’m worried about my surgery … who wouldn’t be … but I know that I can no longer continue the way I am now. Wish me luck, and I’ll do the same for you.

[kw2walker 211]

1/29/13 - Update/Edit:

As several have inquired about the timeline and were confused when i said her surgery was in May but she's been on a feeding tube for two years. The surgery was May of 2010. I was specifying the month only as a point of reference for the point at which the issue became critical (July 2010) and how long she was in the hospital that first time (into October 2010). She was also hospitalized for a few months in January 2011 when the stomache leak/infection spread through the diaphragm and into her lungs' date=' and again the following spring and summer of 2011 for the same issues. Sorry for the confusion.

Also - I agree that the bulk of the issues centered around follow up care - which is why I was so specific about where and by whom she was being treated. But I quickly learned that such leaks and subsequent fistulas are NOT uncommon with this type of surgery - I never said they were the majority. Additionally Physicians who are now caring for her have previously cared for individuals who suffered similar, though not quite as critical, issues after having this type of surgery. So that is legitimate.

Good point on the Hipaa item - but I'm not sure that applies to family or friends sharing information they are aware of. I have no professional or legal obligation to her or her care and am not a POA or medical care provider.

Thanks to all who have read and responded - I'm still reading through them all.

****************************************************************

Original post:

I have not had gastric sleeve, but my sister has and this is her horror story. In the month after her May surgery, by Dr. Chua of Aurora Sinai in Milwaukee, my sister (Jane) came down with flu like symptoms. Although she contacted her primary physician, who was aware of the recent surgery, and I believe she had an office visit with Dr. Chua, nobody showed any concern about infection. This is despite the fact that EVERYBODY knows that infection mimics flu like symptoms and it was nowhere near flu season. Nobody ever did any scans post surgery to determine of there was any issue with the healing of the internal surgery area - even though I have since learned that other patients had experienced similar issues to what my sister was about to go through.

It turned out (after three ER visits in three days, despite the fact that I said I was worried about infection from the very first visit) that a staple hadn't held and that food/fluid had been leaking into her abdomen from the stomach causing a MASSIVE infection. By the time Aurora Lakeland in Elkhorn paid any attention to this she was almost dead. She barely made it through and it was literally touch and go for WEEKS!! AND that hospital wouldn't even treat her because they don't do bariatric surgeries - she had to be airlifted to Milwaukee.

What followed were numerous surgeries, months in ICU and then regular hospital (from July 4th weekend into October), an induced coma with her hands strapped to the bed so she wouldn't inadvertantly pull out tubes and wires, being intubated for breathing assistance, additional infections, memory loss of that entire time, and leaving on a feeding tube. She has been on that feeding tube for over two years now.

Oh she's thin alright. woohoo. But she gets her food from a bag hanging on an iv rack and has to grind her meds and flush them through the feeding tube line, as well as a drain that collects Fluid from her abdomen and open wounds that need daily care. She has NO muscles left. She probably couldn't walk a block if she was allowed to.

She came home from that hospital stay with a GIANT open wound the length of her abdomen - I mean it was big enough for me to stick both my hands into - and a wound vac installed in it to constantly vacuum up the Fluid and goop that goes along with healing. That fluid drained into a plastic container that hung from tube(s) coming out of her abdomen - which she had to have with her always. It was all very painful and really gross.

That was just the first hospitalization. By January she was back in the hospital with another massive infection that had burned through her diaphragm and into her lungs. This time she spent her time in pulmonary ICU. You see they told her to start trying to eat - that they thought the holes in her stomach had closed, but they didn't do regular scans to verify this....again! They were wrong. Again.

Only this time her primary physician, Dr. Rosol of Aurora Lake Geneva, had diagnosed her with pneumonia over the phone and had given her a prescription not even strong enough to deal with pneumonia. So when she didn't get better, by the time the Aurora ER took her seriously she was again near death. This time they had to do lung surgery AND abdominal surgery to clear out and treat the raging infection caused by fluid and matter leaking from the stomach into everywhere.

So apparently this type of thing isn't that uncommon with this surgery, nor are the "fistulas" that develop as a result of this complication from this type of surgery. If the tissue around this fistula isn't so damaged that it can heal on its own it could take years. If it's damaged - as hers was from all that infection - there is no sewing it closed and it doesn't heal on its own. Imagine being on a feeding tube for the rest of your life - never tasting food, never enjoying a meal or a drink or a dessert or a holiday with your family again. Never a chocolate bar, or a bowl of Cereal, or a salad, or a glass of juice. NOTHING. All because someone convinced you that gastric sleeve surgery was the answer.

So if you are considering this surgery, don't. It's just not worth the risk. I know, if my sister could go back, she would choose fat over this lack of a life any day of the week. I grew up thin and am now fat and I would NEVER EVER EVER have a surgery to reduce my weight. Although I haven't been able to be disciplined enough to do it I know the only solution is eat less, move more. Two steps. The only solution.[/quote']

I hope your sister is recovering well.

Your information was insightful. When I did my research on the procedure my doctor and his staff stressed the possibilities of leaks repeatedly. Our bodies are all different and sadly your sister had a very bad experience and with very ill trained and caring it sounds medical staff.

Again I hope and pray she is recovering well. I had my sleeve done July 22, 2013 and followed the letter of the law my doctor set out for me. That said, it does not mean I could not have had the same results as your sister because I know I could.

Thank you for sharing your information.

Karen

[kw2walker 211]

While you may strongly disagree with the OP' date=' there is no need to resort to name calling. The name caller is the one put in an unfavorable light, and it is against the forum policies.[/quote']

I agree! Kendra was out of line.