Need to hear from someone who's had a RNY to DS revision

I had an RNY on 2/25/08.  I lost 40 pounds in the first three moonths, and then came to a screeching halt.  It's a VERY long story, but I've been to more doctors and had more needles in my arm than I care to count.

The last time I saw my surgeon on September 4, after several months in a stall, he told me to add more exercise - which I did.  I began doing 45 minutes of step aerobics 5x a week.  At 236 pounds, that's a lot.  And I did so eating an average of 1100 calories a day (he gave me no instructions to increase my food when he told me to increase exercise).

From 9/4 to Thanksgiving, I lost NO inches, NO pounds.   It's been an impossible battle.  I have exercised so hard that my creatine kinase tests have showed muscle damage.  I have done everything -- more water, more healthy fats, less fat, more protein, less protein, more healthy carbs, almost no carbs, more exercise.

If I had to make analogy, I'd have to say this is like slavery.  When you're a slave, you can make all the mental goals you want, but unless you're the one in charge, you can hang it up.  When you're a slave, you're not the one in control -- the master is.  When your control is taken away from you, at some point you lose your drive, your motivation, because . . . what do you have to work for if there's no reward?

In my case, my master is my body.  I'm a slave to my body, and nothing I do is affecting change.  I get up EVERY morning with a vision of how I want to look.  I throw myself on the treadmill, journal my food, bought a body fat monitor, use a tape measure, a scale.  And after months and months of this, to be doing nothing but working so hard to stay obese, is devastating.

Having been overweight since I was a small child, this is like the death of a dream.  My whole life I've not had the discipline to lose the weight.  Now that I HAVE the discipline, my body has betrayed me.

I went to see the endo this week who administrates the bariatric program in my region (Southern California, Kaiser).  The appointment was good in the sense that I feel like I’ve been given more options, but not the greatest in the spirit of the visit itself.

This particular endo really has an attitude -- he’s pretty ****y.  Seeing him is not for the faint of heart.  He’s always been that way, and I’m not the only one who gets those vibes from him.  He would read off information from my file in the computer, and if I said that something he’d just read wasn’t correct, (he was trying to figure out how much weight I’d lost before surgery and what he read was 30 pounds off, so I told him the correct number) he would shrug like, “So what" and turn the computer and say, “I’m just reading what’s in the computer."

ANYWAY, he told me all my tests were normal, even if they were on the low end, and that no doctor is going to treat me as long as my tests are within normal limits.  He said several things:

• “The good news is that you have no major issues.  But the bad news is you’re not losing any weight."  I gave him the last YEAR’s worth of my weigh-ins that I’ve documented since April of last year.
  
  Outside of someone following me around 24/7, they’re going to have to take my word for it that I’m telling the truth.  Why would I go through all of this if I wasn’t -- especially considering some of the stuff I’ve taken from doctors.  Honestly, knowing I’m telling the truth is the only thing that keeps me going forward in the face of medical criticism, because what I’ve been through is not for the faint of heart.
  
  Doctors are so used to overweight patients coming to them with excuses saying, "I can't lose weight," that when someone like me, whose given it 250% and really ISN'T losing weight, it's the worst feeling in the world.  You can't get help when there are pre-conceived ideas about why things are the way they are.  At that point, you're not listened to anymore, and doctors think they're giving you tough love by just saying, "You're not working hard enough."  At that point, you're isolated from any help at all.
  

• He thinks I have mild depression brought on by this issue.  It’s not surprising to me that he thinks that, since I’ve gotten upset in the doctor’s office over this issue the last three times I’ve seen a doctor.  I’m a little disgusted by this -- I’ve come to realize that all my HMO plan doctors are pre-programmed to ask you if you’re depressed if you get upset in their office.
  
  The minute I’ve shown any emotion, they have all asked, “Are you depressed?  Do you need a prescription?"  I refused a prescription.  He told me that if I’m anxious over my weight issue, that the anxiety could lead to no weight loss and the medicine could actually help.  I’m not sure how much of that I believe.   What they don't understand is that you can only deny your emotions for so long.  For months on end I kept stuffing my desperate feelings back down my throat, telling myself that the weight would come off if I just kept trying.  At some point, you can't deny your disappointment and pain anymore.
  
  

• He DID say, that it’s his opinion that since all my tests are fine that the issue is a surgical one.  He explained that when the intestine is bypassed, if you’re reconnected too high, you have less weight loss, and if you’re lower, you have more.  He said he doesn’t fault my surgeon, because there’s no “marking" on patients to tell a surgeon exactly how much intestine to bypass.
  
  

• My options:
  1.  I have to have a barium swallow test done in the next few days to check the status of what’s going on intestinally.
  2.  I have the option of going on Optifast, a 800-calorie medically-supervised liquid diet.  It’s not covered by my insurance,  and is VERY expensive.  This isn't an option.
  3.  He gave me a 1200 calorie diet to follow for 4 weeks.  At the end of that time, if I’ve not lost weight, he’s going to give mperate a referral to a revision surgeon.
  

I don’t want to have another surgery.  We’ll see what happens with the 1200 calories.  I’m not really expecting that it’ll work, but I really hope it does -- my husband's not excited at the prospect of another surgery, and neither am I.

He's been so encouraging and telling me that I look okay, even if I don’t think I do.  But I guess what’s so discouraging is that I have to work so hard to even stay where I am -- which is still 60 pounds above my goal!  I’m working to stay overweight, which is just senseless!

On a lighter note, I think the doctor I saw this week got the message that I'm telling him the truth.  He was reading through all the tests I had done recently and said, “I’m looking at all the tests you had done, and whoever had these done is an excellent endocrinologist!  He even had an ACTH test done, and we don’t normally do those."

That’s when I looked him in the eye and said, “My endo didn’t order those tests.  I ordered those tests."  He looked at me and said, “How?!"  I said, “I’ve done a LOT of reading over the past year, and since no one else was concerned about what was going on with me, I wanted to know what was going on with me -- so I just emailed my doctor to request tests, and he ordered them."  You could tell on his face that he had just paid me a HUGE compliment that he hadn't intended to pay.  One point for Sheryl (finally).

Lord knows I’m not trying to be obnoxious, but I want doctors to know that I’m not just going to sit back and not be involved in or understand my own care if no one else is going to follow up with me.  If I didn't care, I wouldn't have driven the 45 minutes to see him.

So the bottom line -- I'd like to hear from ANYONE & EVERYONE who's had a revision from a RNY to a DS.  I'd like to know all the details -- how the surgery went, was it hard to get a revision (as in the approval process), how was it determined you need a revision, was it covered by your plan, and most of all -- was it successful?

You may want to post this on the DS page... I have had a RNY to DS just 9 days ago so really not sure how much I can offer but if you want to PM me I be happy to answer any questions..

Chris

Hi, Chris -- well I think for the most part I'd be more interested in knowing the same questions I asked above, minus whether or not it was successful since you don't really know that yet.  I'll post this on the DS board too.

 OMG!!!  OMG!!!  You feel exactly the same was as I do about DOCTORS!!!   All they want to do is shove a prescription in your hand and make you go away!!   It's not YOUR anxiety!  It's that you had the WRONG surgery for YOU!!   Aren't you sick of these doctors that only do the RNY or lapband and they herd people into their programs like cattle and give everyone the same cookie cutter surgery and then BLAME THE PATIENT if it doesn't work???  I only recently found out that it's because the DS requires additional education and the DS surgery itself takes longer to perform than the RNY, so they can't do as many surgeries in the same time period (less $$).    Sooooo, unless and until the PATIENTS start asking for the DS and accepting nothing less, the doctors will have no incentive to start offering it in their practices.   As long as patients "settle" for the RNY (because it's easier to get), a good proportion of them will need revisions and go back to the same doctor for an RNY revision (again, not to the DS, and that doctor makes even more money, as the patient takes the "fall").

It sounds like you have a severe metabolic problem and need more malabsorption.   Go ask these questions on the DS board.  They are all very informed over there and wonderful about offering help and support.   That's the surgery you probably should have had in the first place.   The unfortunate thing is that now that you have the RNY pouch, the conversion to DS is more complex than a virgin surgery and only a handful of doctors in the US actually do it.   You need to find one.

The very best of luck to you!  You have worked hard (I believe you!) and you deserve success!!   

Since you sound like you like research, take a look at these two articles from a bariatric journal on revisions to RNY.     They go into the pros and cons of each type, including the DS surgery.

www.obesityhelp.com/forums/revision/3886215/Everyone-should-read-this-Revision-Procedures-for-Failed/

and

www.obesityhelp.com/forums/revision/3886208/Great-article-on -RNY-revisions-from-Bariatric-Journal/

Oh, and one more thing - check out www.dsfacts.com and www.duodenalswitch.com.   The duodenalswitch.com website has a list of doctors who all do the DS and maybe you can find one near you and call the office to see if the doctor can handle an RNY to DS conversion.   

Hi, Sheryl...

I'm not an RNY to DS revision... I'm scheduled for a VBG to DS revision (which is similarly complicated in terms of required surgical skills). I can't speak to the experience part of your question, but I can offer you a list of surgeons that offer the DS, and which ones of those do and don't do revisions.

http://www.obesityhelp.com/forums/ds/3808137/List-of-DS-Surg eons-Performing-Not-Performing-Revisions/

bear in mind that a revision is a high-risk surgery, so many surgeons won't consider doing them. Because of the relatively high rate of complications, revision surgery messes negatively with a surgeon's statistics, and surgeons love to keep their stats squeaky clean.

Finding a surgeon that's right for you takes time and diligence, so you might want to start looking at that part of the equation. I sent emails to about 10 surgeons on the list you'll find on the above link. You can find many of their email addresses here:

http://www.dsfacts.com/duodenal-switch-surgeons.html

or by doing a google search for the desired surgeon's official website.

I suggest that you keep the email really short and to the point, or it wont get read. Include ONLY the facts that are relevant. Your age, height, weight, date and type of your original surgery, your insurance carrier, a couple of simple, enumerated questions. And I agree this post (or an abbreviated version of it) should be on the DS board. You'll find a handful of RNY to DS revsions that are regular posters, there.

Best of luck to you!

Kathy

 

Thanks so much for all your information!

Actually, I have Kaiser Permanente insurance.  And as I've talked to the head endocrinologist that heads up the Metabolic Obesity Clinic (he's the one who approves everyone's gastric bypass surgeries through Kaiser here in Southern California -- if you have Kaiser and have this surgery, at one time or another you're going to have to see him), he told me that Kaiser has several "revision surgeons."  They are surgeons who specialize specifically in revision RNY surgeries.

He knows all the ins and outs of how WLS approvals work through Kaiser since he's the one who approves or disapproves them all, and he already told me that Kaiser will NOT send me back to the doctor who originally did my surgery.  This means that I don't have a choice -- unless I pay out pocket, which I can't -- in choosing which surgeon I'm going to have.  It's reassuring, however, that Kaiser has REVISION SURGEONS -- surgeons who specialize in revising RNY surgeries.  That gives me a great measure of assurance.

Believe me, I'm totally aware it's a high-risk procedure, and I can't tell you how much i hate that I'm even having to consider it!  More than anyone else, I wish there was another way out of this.  Barring outright starvation (I've already been at 1000 calories with no results) or liposuction, I'm powerless.  I hate being in this position.  I just wish the first time through had done what it was supposed to.  But as it is right now, I can't lose another ounce unless I have a second surgery.

The reason a second surgery is necessary is not for comestic reasons, but because my BMI is still dangerously high!  I am at extremely high risk for diabetes -- it runs in my family, and I've been a gestational diabetic twice (which raises the chance of getting Type 2 by 60%).  Even if I were to stay at this weight, I'm doomed to more health problems as I get older (which is why I had the surgery in the first place!) unless I can get my weight down.  And I can't get my weight down because the effects of surgery has trapped me where I am.  The power to change my weight is no longer my own, no matter what I do.

So . . . I'm either doomed to a life of illness if I don't have the surgery and stay where I am, or I'm risking more complications by having another surgery.  What a choice to have to make.

Sheryl-

I'm sorry you're not a position to make the choice for yourself. I have a feeling that Kaiser will want to revise your RNY to an ERNY, so be prepared for that.

I notice your original surgeon is in California, and if that's where YOU'RE located, you'll be in an excellent position to demand a DS. Please do NOT settle for an ERNY, even if this guy tells you it's your only option. It's NOT.

The state of California has some sort of medical review board (god, I wish I knew the specifics for you, but if you PM Diana Cox, she'll give you the details) that can force your insurance company into giving you the DS. There are a few hoops to leap through, but from what I've read about both the ERNY and the DS, it's so *very* worth your while to do the jumping.

Please post on the DS board, asking them for advice on getting the state of California's medical review board to approve you for the DS. You'll get lots of good and effective advice.

If I were in your position, I'd fight for the DS. It sounds as if your metabolism is particularly stubborn, and you really DO need the "bazooka" of weight loss surgeries.

Best of luck to you, Sheryl.

xoxo

Kathy

THANK YOU again!  Your information is priceless.  Dr. Alskaf didnt say what surgery Kaiser would do, but I think you're right -- I think they're going to try making me have the ERNY, which I've heard hasn't been that successful.  Even my first surgeon told me that an ERNY or the band added to the RNY only produce a weight loss of about 20 pounds.  I'm not going through a surgery again for another measly 20 pounds!

I'm definitely going to post and see what I can find out about the medical review board.  Yes, I'm in California.  I'm going to email Diana and post on the DS board see what I can find out.  I had no idea my metabolism was so stubborn!!!!  I never had problems losing weight (outside my own cravings/discipline) before this, so I had no indication that I'd have this problem following surgery.

Got another journey to take, but by the grace of God, I'm going to get there . . . eventually.

You're very welcome, Sheryl.

Your metabolism adjusts with every diet you put yourself on. You lower the calories and up your activity level, and your body gets thrown into starvation mode. You become metabolically efficient, doing a lot (all that exercise) with very little (eating relatively few calories). Your body has adjusted...  preparing for a long winter without much food by storing as much as it possibly can - desperate to keep you alive for the long haul.

You probably weren't always this way ... and none of us start OUT this way. Your RNY probably sealed the deal for your metbolism, like my VBG did. It's no longer a matter of figuring a decent "calories in / calories out" diet, because our bodies have developed an entirely different metabolical "math."

In essence, a lifetime of dieting *trains* our bodies to work against us. It was a very effective survival tool when we lived in caves, and had to rely on seasonal food availability.

Not so useful, today.

You'll be a great DSer Sheryl.