PiRatFamily

I think it would be a good idea as well however, what you may not have read and I don't think I've made it clear is that he's actually been through 4 abdominal surgeries (3 of them full open and not laproscopic) and 5 endoscopic proceedures since November of 2010. After every one he's actually gotten worse and not better. He has an incisional hernia the size of a large grapefruit protruding from the middle of his stomach that they say they cannot fix as his weight has still not stabilized (he was a little over 400 lbs before the 1st surgery) and if they repair it before his weight stabilizes, if he lost even 20 more pounds it would just sag and re-open itself. He can't really exercize so his weight loss is extremely slow (3-4 lbs a month). He's terrified to do any more surgeries because of the fact that after each one, he's gotten worse and cannot bear to think about what worse might entail. He's sort of an emotional basket case now. Has night terrors and wakes up screaming. I don't think he really trusts anyone anymore because one of two things has happened every time he's seen a new surgeon 1: They talk a big game, ensure him that they are gonna be able to fix him up then they do their work up, the EGD's (which he has to do under general anesthesia because of his sleep apnea) and then after they see what they're REALLY dealing with, they just don't return calls or follow up or just outright tell him he was worse off than they thought he was and can't help him. And some simply look at his record and say "pass" immediately (One Dr. actually said this verbatim: "I don't know what they did to you but I've never seen anything like this) or 2: They do a surgery and he ends up hurting worse than he was prior to surgery. Maybe some time in the future but as I said, he's literally terrified at the notion of undergoing yet another surgery because he's so afraid of it getting worse. Once bitten, twice shy. He was a nurse before all this happened so he's actually hyper-aware of all the things that can go wrong in surgery and this only adds to his anxiety about undergoing yet another one. At this point we're just trying to keep comfortable as possible and also are trying to get more settled in our situation and finances. To add gasoline to the fire, during this whole ordeal he's been going through a nasty custody battle with his ex-wife over his little girl. It's a lot to deal with but as I said, I'm on here mainly to make sure that people out there who are considering this surgery are aware of the potential "dark side" of this proceedure that no one told us about before he made the decision to do this. It most DEFINITELY can be life changing to be sure but that can also be a negative....VERY negative life change and we certainly weren't ever made privy to that potential "down side" and would not want others to undertake this without having FULL disclosure...The good, the bad and in his case.....The ugly.

Army of me: Reversal isn't an option as there's no viable tissue left. It's all just one giant ball of scar tissue. Eventually they'll end up having to do a radical gastrectomy and take out everything above the small intestine and he'll end up with a J-tube. Unfortunately, this will not do much for the pain because of all the scar tissue that's built up and the damage to the liver from all the acid leakage. One doctor told him his liver (or about 1/3rd of it) looked like that of an alcoholic....All necrotic and nasty and green but that he knew it couldn't be alcoholism because it was only on the 1/3rd portion. He's putting that off as long as he can bear to because he is so upset about the notion of being thirsty and not being able to even take a drink of water. He tells anyone who asks him about the surgery to either lose the weight on your own or just enjoy being who you are now because he can guarantee that regardless of how miserable they might be overweight? It's NOTHING compared to what he goes through on a daily basis. Oldoneyoungagain: I sincerely hope it comes fast. We're constantly one paycheck away from being homeless and while SSDI is no lottery win by far it would at least make sure we're never on the street between what he'll get for that and what I make. The last thing: IDK how many of you have been through or know someone who's been through the provess to get SSDI but based on our experience? I don't understand how so many people are on it. You're treated from the get go like you're some sort of burgler who's trying to break into the USA's safe and they're doing everything they can to keep you out of it. Tony made between high 5 figures and low 6 figures when he was able to work. Would someone PLEASE tell me what sense it makes for him to try and "make out like a bandit" on less than 1/4th of what he was making while he worked? It just makes no rational sense but I'm telling you.....You're treated like you're trying to get away with something from the get go. Tony was a workaholic and loved his job. He would give anything to be able to go back to it. Again....Much thanks for all the well wishes. It's cathartic to have a place like this where you can just vent and no one judges and is so supportavie....

Well....We finally ended up at a hearing done by an administrative law judge for social security disability. He's only gotten worse. Hardly eats. Hurts all the time, is constantly depressed and I've caught him crying on several occasions. Anyhow, he went into the hearing for SSDI. They called the court to order, swore everyone in and then phoned some doctor in Ohio that was to testify for the SS people. The judge asked the doctor if he had read the medical records and if he had an opinion. He said about 3 sentences in "medical-eze" and then stated that "There's no doubt in my mind and no question that this person is 100% disabled and unable to work." The judge said he'd heard enough and thanked the doctor and hung up and then told us that he'd have our written decision in the mail within 2-4 weeks. Tony never was asked a thing nor was his attorney. I'm guessing this means that he's approved for SSDI? They even didn't haggle about the date of onset. I guess this is great from a financial standpoint but as for Tony? He always just says over and over that it's like living in a nightmare you can't wake up from. Thanks for all the support and well wishes here. I wish I had something positive to say about Tony's health but I guess you celebrate what you can.....

Research as much as possible (including complications your surgeon may not share with you) and hopefully that will help.

There's not money to do anything, much less travel to AZ. This ruined our lives. I am the sole-provider financially and that's praying I make enough to pay the rent, put food on the table and gas in the car. It seems like the only person on our side is the case worker (and ppl that listen on here).

We haven't tried to contact the Mayo clinic. We live one day at a time. His case manager is trying to set up something at UCLA.

We chose not to share the Dr.'s name or the hospital. I will say it was in Orange County, CA.

It's actually only 1 year in CA. We had no idea how bad it was going to be after only 1 year...

Thanks guys... another county, another specialist... guess we will see what he has to say.

Thanks for the support guys. Just don't know what we are going to do...

Reversion wasn't an option for us. I'm sure he would have done it. Everything was too scrambled inside to reverse anything. The problem is his problem went too long without properly being treated. The best advice I can give is to seek treatment as soon as you think something is wrong.

We're fighting complications too. My question is how long can my fiance continue when the pain progressively gets worse?! It feels hopeless when there's no solution. It has affected our family and day-to-day life. The worst part is seeing him suffer and knowing there is nothing I can do.

My fiance's PCP is an internal medicine doctor. He also has a pain management doctor. Every month he goes to pick up his prescriptions, the pharmacists treat him like a drug addict. It makes him feel horrible.

Sorry you were denied. We are in the same boat. We are awaiting the trial date. Don't give up!

Your complications are vastly different from my fiance's. However, we can totally relate. This surgery destroyed our lives. I have family that has been successful with RNY, but not completely without their own complications. It's nice to know we aren't alone. I want our old life back.