RNY reversals? How about Revisions? Who was your surgeon?

I had RNY in 2002.  For the last 5 years, I've had a laundry list of complications.

I'm looking for a surgeon experienced in RNY reversals (or even revisions).

I live in Arizona, but can travel to pretty much anywhere in the US.  I do prefer to stay as close to home as possible.

Please, anyone?  Who was your surgeon for RNY reversal or revision?  Would you recommend him/her?  Complications?

Any info would be so appreciated.

Thanks!
Christine

What sort of revision are you looking to do? I had an RNY to DS revision done in August, by Dr. David Greenbaum in Willingboro, NJ. In my . I did have some complication which required an additional visit back to the operating room 48 hours after my initial surgery. In the following weeks that followed,  I got a leak (revisions are more apt to have them, but not everyone does), a stomach organ infection which caused a fistula and drainage of pus out of my incision, incisional drainage (sero sanquenous fluid) whereby my incision had to be opened up in two places, and a subclavian blood clot caused from the PICC line, none of this was due to the surgeons lack of experience. Complications happen to 1 in 20 and I was one in twenty. I blame no one. **** happens.

I was in and out of the hospital from August to September for a grand total of 25 days. When I got home in September I was assigned two home health care nurses. One to handle the IV antibiotics, blood draws and picc line dressing and one to handle the wound pump dressing. I was NPO for 55 days. I had been on enteral feedings for 74 days. As of today I am free of feeding tubes, picc lines and wound pumps. I'm continuing to heal and soon will be completely healed. (my leak continues to drain out of a small hole in my skin, but it's leaking a smallish amount.  It's been a rocky road for me for sure. On the upside, despite being on enteral (j-tube in my intestines) feedings I have lost nearly fifty pounds.

As for Dr. Greenbaum I would recommend him highly. He's been right there and handling all of the things that have come up. He has been thorough and aggressive in all my treatment and in some cases even conservative. He's one of the only surgeons in NJ who does RNY to DS revisions. He has done revisions for people all across the country.  For folks who live far away he will do phone consults and the staff will give you the support you need while you go through the insurance hoops and hurdles.

If NJ is too far for you, Dr. John Husted in KY does revisions as well. I however do not have much information on him other than he is a vetted DS surgeon.

All the best in your quest.

Maddie

Maddie,

Thank you for taking the time to write such an informative response!

I want to say that I'm very happy that your ordeal is nearing its end.  I'm sorry that you had to go through what you did.

I'm actually looking for a full reversal of the RNY, not a revision.  But, there are more people who've had revisions, so more info on surgeons that way.  And, from what I understand, a revision to DS from RNY and a total RNY reversal are reasonably similar surgeries, in terms of complications and difficulty.

I have heard of Dr. Husted.  I also found out about another doctor in San Francisco at a Center of Excellence (I can't think of his name off the top of my head, but I have it written down...).

Because of some things I read about the surgeon I have been consulting with on my surgery, I am having second thoughts on using him.  There are only 2 or 3 people who have negative things to say about him, but they are so forceful in what they say and how they say it.  I'm having a hard time trusting the folks who give him a good review!  I'm just in a tizzy over this right now.

Anway, thanks again.  Good luck to you, and I wish you a wonderful end to your story!

Christine

Can you say what your complications have been? I'd be more able to direct you to a fixit guy.

Some of my complications after RNY:

chronic anemia, despite taking iron.  I've done rx iron, ferrochel chelated iron, carbonyl iron, chewable iron, also iron infusions (which were the only way I actually became "non-anemic")

Nesidioblastosis (wild swings in blood sugar, despite not eating high carb foods)

stomach ulcer

various vitamin & nutritional deficiencies (I take high quality vitamins, not the stuff you find in the grocery store or Walgreen's)

Unexplained abdominal pain that has sent me to the ER numerous times.

Osteopenia

Chronic fatigue, dizziness, reduced vision, nausea, and a host of other issues that may or may not be related to the RNY.  However, I had NONE of these things prior to the RNY, and they started happening about 2 years post-op.  I'm just so tired, weak, and sick all the time now that I finally admitted to myself that my RNY is causing me to be sicker than I ever was before it.  I've had lots of doctors tell me the same thing, but none knows or will recommend a surgeon to reverse the RNY.  My surgeon is no longer doing bariatric surgery, and has moved 2000 miles from here.

If you can help by recommending a surgeon, and not by recommending a vitamin/mineral therapy (I do take the highest quality & absorbable supplements), I'd be so appreciative!

Thanks,
Christine

anemia. sad, sad. B12 and folate are top end of range? If they sink, we hemolyze. Hemolyzing is usually NOT nutritional, unless the B12/folic are dead in the water OR you are taking some meds, like sulfa or estrogen. There's a longer list, not in my head now. In my case, sulfa dropped my folate to nearly nothing, blocks intake. I fixed the folate, but it took mega doses. Rx folic is 1mg, I was taking 100mg. And yes, I mean mg, not mcg.

B12 needs to hang at the top, so pushing 2000.

I think everyone who's 2 yrs out has some RHG, but to actually get the nesidoblastosis dx is scary. Did they find insulinoma(s) or is a default dx? not that it makes any difference, but I'm just curious since I listened to a very good presentation on this at ASMBS conf this summer. First time I've heard it acknowledged that these BS crashes are not strictly a "behavior problem".

marginal ulcer? Are you taking NSAIDS? Any other meds with a tummy burning side effect? might be the last side mentioned in the fine print. I also had these, but when I had to be revised for SLD (remember, I'm a 1994), my stomach was removed and poof, end of any acid or marginal ulcer issues.

You say you're taking the high quality stuff. Brand name would help, but I'm more interested in the actual form. Is the A dry retinol? Is the D dry D3? Stuff like that.

Where are you and how far can you go for potential revision? What are the stats of your surgery? Again, accumulating data so I can point you in the right direction. How much bypassed, whatever limbs your op report gives you.

And finally, I'm assuming you've had c-diff, Crohn's, celiac all ruled out to be sure you're not absorbing because the intestine is actually damaged in some way.

Nesidioblastosis is default dx.

Ulcers:  I use Tylenol for pain, but have rarely taken NSAIDS.  The main drug suspected to have contributed to the ulcer is Zoloft.  I was taken off the Zoloft cold turkey 3 months ago, and given Ativan for my panic disorder.  Really sucks!!!

Brand name of vitamins:  Nutri-Supreme Research.  My b12 and folate vary from mid to low range normal. 

Vit A is Betatene, a natural beta-carotene with mixed carotenoids....25000 IU per day  500%rda

D3 is cholecalciferol (sp?).....1200 IU per day  300%rda

E d-alpha tocopheryl succinate.....400 IU per day    1300%rda

B1.....50mg per day 3200%rda

B3....160mg per day  800%rda

B6....50mg per day   2500%rda

B12...1800 mcg per day   30,000%rda

Folate/folic acid...2000mcg per day   500%rda

Biotin....600mcg per day   200%rda

Also has magnesium, Iodine, zinc, selenium, copper, manganese, chromium, molybdenum, potassium, etc.

Iron is Maxi Health Maxi Ferrochel.....200mg per day of amino acid chelated iron....1100%rda

Calcium is Bluebonnet brand bisglyconate amino acid chelated form of calcium....150%rda

So, you see, my vitamins are the "good stuff".  The problem is me, not the vitamins.  I think I'm going to stay with the surgeon I consulted with.  I was worried about using him due to reading some very negative posts.  But, it turns out that the negative posts are all from 2, possibly 3 people.  He has hundreds of positive comments.  Tell me, have you heard of Dr. Schlesinger in Arizona?  What do you think?

OK, I'm pasting your post here writing in among it:

Nesidioblastosis is default dx.
********* rare to get a genuine dx on it, but I spose a default is better than "you're naughty"

Ulcers: I use Tylenol for pain, but have rarely taken NSAIDS. The main drug suspected to have contributed to the ulcer is Zoloft. I was taken off the Zoloft cold turkey 3 months ago, and given Ativan for my panic disorder. Really sucks!!!
******** I didn't file Zoloft under trouble makers! I know so many taking it!

Brand name of vitamins: Nutri-Supreme Research. My b12 and folate vary from mid to low range normal.
********** first thing: brand name doesn't guarantee what's inside.

Vit A is Betatene, a natural beta-carotene with mixed carotenoids....25000 IU per day 500%rda
********* we do not absorb beta carotene. AT ALL. To save your eyes, it has to be dry form (not oil) retinol acetate or palmitate. And at this point, probably 50k a day. It comes in 10k or 25k

D3 is cholecalciferol (sp?).....1200 IU per day 300%rda
************ D3, if dry, should be around 50-100k. And yes, I said that. Something like 100k a day for 30 days, then 50k a day til you test in the safety zone, around 100, and the pTH and calcium come down to their correct levels. Then probably go to 50k every other day. It's a single pill.

E d-alpha tocopheryl succinate.....400 IU per day 1300%rda
********* if it's dry, not oil. this is the right one

B1.....50mg per day 3200%rda

B3....160mg per day 800%rda

B6....50mg per day 2500%rda

B12...1800 mcg per day 30,000%rda
*********** needs to be sublingual, which comes as high as 10,000 in both cyanacobalamin (good) and methycobalamin (better). More affordable are shots. Probably daily til you get up to healthy levels, then backing off to weekly. I prefer the way I feel with weekly and my doc (thank goodness!) has read the most recent studies on maintaining B12 levels over 800, so has no problem writing rx for me (us, dh, too)

Folate/folic acid...2000mcg per day 500%rda
********* if it's not bringing you up, it's not enough. It comes in 5000 (5mg) or as high as 100,000 (100mg). Nope, they are not typos

Biotin....600mcg per day 200%rda

Also has magnesium, Iodine, zinc, selenium, copper, manganese, chromium, molybdenum, potassium, etc.

Iron is Maxi Health Maxi Ferrochel.....200mg per day of amino acid chelated iron....1100%rda
********* with vit C built in? or are you adding the vit C? Taking alone or with fruit, but not with dairy, caffeine, egg, whole grain, any other vites, minerals or meds? Alone together for at least one hour

Calcium is Bluebonnet brand bisglyconate amino acid chelated form of calcium....150%rda
******** so, total mg per day? We are bottomless calcium pits, so no such thing as too much for us.

So, you see, my vitamins are the "good stuff".
********* they're just not built for malabsorption. So, before you blame you, or get mad at your body, try the forms that absorb in the doses we need. Some of these look like they're ok doses, but some are woefully under what we take in order to ABSORB reasonable amounts. It's what's IN the vites, not the brand, not the "vehicle". And it does not have to be expensive to be right. nor does it have to say it's for WLS. I was 8 yrs out before the first of those products ever hit the market!

The problem is me, not the vitamins. I think I'm going to stay with the surgeon I consulted with. I was worried about using him due to reading some very negative posts. But, it turns out that the negative posts are all from 2, possibly 3 people. He has hundreds of positive comments. Tell me, have you heard of Dr. Schlesinger in Arizona? What do you think?
********* I Know him. He often refers ppl to me and I refer ppl to him. Usually if you're having this much trouble, he might send you to me if he's actually one on one with you and not staff.

We try to come to Phx every summer. I was there for 10 days this year, only 3 days last year. Plan nearly 2 weeks summer 2010.

I'm glad you took the time to give the info you did.  Seems you've got quite a flourishing business supplying bariatric patients with vitamins and minerals they need.

But, you see, the problem IS me.  NOT the vitamins.  It is NOT normal to have to take such high doses of such specialized vitamins.  HEALTHY human beings can get the nutrition they need from food, and possibly a bit of supplementation.  Bariatric patients need much, much more.

The thing is, when most of us had this surgery 7+ years ago, our nutritionists/surgeons/doctors told us we'd need to take vitamins for life.  They DID NOT say we'd have to spend over a hundred dollars per month on extra special vitamins, or that we'd have to take 10-15 pills per day FOREVER.  We did NOT get the truth.  We were told, "take your iron, take a multi-vitamin and some calcium & you'll be fine".  The truth is, we need costly, highly specialized viatmins & supplements.  And even with them, it's very likely that we're still not absorbing everything we need.

Have you heard of DHA in baby formula?  It's been a few years since they started adding it to baby formula.  Before that, no one knew it was important.  Most didn't even know what it was.  So, how many micronutrients that aren't even known to nutritionists are we bypass patients NOT absorbing.  Even by your own account, we don't absorb the most basic nutrients from food, or even most of the supplements currently available (except the ones that will cost you insane amounts of money per month).

And, are you a doctor?  If you're not, then don't tell people that a dx from their doctor is not valid in your eyes.  It's quite condescending.  I'm glad you attended a conference on nesidioblastosis, but that really does not make you qualified to judge a dx given by a doctor.  The conference was what, maybe 8 hours?  So, I guess you'd need that conference plus about 8 years of med school and internship to voice what sounds like or may be taken as an "expert" opinion?

I'm glad you've got a thriving business.  I really am.  However, I believe that to correct what is wrong with ME, I need to absorb nutrients like a normal person through my intestines.  Like I said, who knows what micronutrients will be discovered, and then discovered that we don't absorb.  I'm sure you're helping many people feel better with your supplements, and that's a great thing.  However, in my opinion, the only way to have long-term health is to restore the body to the way it was made (or as close to it as possible).

Will I gain my weight back.  Perhaps.  The statistics say so.  But, I will tell you that for the last 5 years I have felt sicker than I ever did, even at my highest weight.  So, I will chance it.  I believe the odds that I will be healthier after restoring my intestines to a "normal" state are in my favor.  Do you know what causes Alzheimers?  No?  Neither does anyone else.  Do you know what causes cancer?  No?  Neither does anyone else.  Do doctors know that proper nutrition is a key defense to preventing disease?  Yes, they do.  Do bypass patients ever obtain "proper nutrition"?  My opinion is that NO, they do not.  We do NOT absorb nutrients as we should.  It is much more that taking a simple multi-vitamin....or even dozens of specialized supplements.

Did vitamins & supplements work for you?  It appears so.  I'm sure lots of people feel better when they take your myriad supplements.  But does that mean they are getting all the nutrients as before their bypass procedure?  NO.  Again, it is MUCH more than taking the few supplements our surgeons/nutritionists told us back then.  You can't deny that.

It boils down to this:  I am not healthy.  I do not believe it is normal or healthy to have to take iron injections, b12 injections, and/or huge amounts of supplements for the rest of my life.  I have taken literally thousands of vitamin and mineral pills over the last 7 years.   I am going to do what I need to do to be healthy.  And that is to have my anatomy restored to as close to as normal as possible.  Yes, the excess weight is not healthy either, I know that.  At least I have the chance to control that.  Living with bypassed intestines, I have NO CONTROL over how or what my body absorbs.

For the last 5 years, I have told everyone who asks about my RNY & whether I'd recommend it to them, NOT to do it.  I tell them that if they feel they want or need bariatric surgery, that they should do the LapBand.  Malabsorptive surgeries just don't make sense to me any more. 

Now, about the Zoloft.  It's only been very recently that they have associated Zoloft with ulcers or other internal bleeds.  It's not just Zoloft, it's all SSRI's.  Oh, and they also know that SSRI's are not well absorbed by bypass patients.  What other meds are we not getting the proper dose of because of our bypassed intestines?  There's not a vitamin out there that can fix that problem.

I did meet with Dr. Schlesinger.  Twice, in fact.  So, no, I didn't just talk with his "staff".  The only reason I'm asking for advice for a surgeon is that I've read some negative comments on these boards about him, and I got a bad case of the nerves.  Turns out they're all from 2, maybe 3 people.  I didn't come to this forum to be told that I just need the right vitamins.  I don't believe the "right" vitamins are a thing that even exists.  The medical opinion on them changes too frequently.

Thank you for your info.  I'm sure you're helping lots of people feel better than they did before they began taking your supplements.  But feeling better is not the same as being truly healthy.  I don't mean to sound cross, but I'm tired of living this way.  I'm tired of worrying what the honest to goodness long-term effects of malabsorption are going to be.  I'm tired of taking 10 or more vitamin & mineral pills every day (lots more than just a "multi-vitamin & some calcium").  I'm tired of not being healthy.  I'm tired of being tired.  I'm tired of the wild blood sugar swings.  I'm tired of the heart palpitations.  I'm tired of the abdominal pain.  I'm tired of hearing, "You'll feel better if you take (supplement x)", and then NOT feeling better.

Dr. Schlesinger's office has submitted my paperwork to my insurance for approval for the RNY reversal.  I also now feel confident I've made the right choice not only in the reversal, but with the surgeon I've selected.  Again, thanks for your time & info.

 Hello ragarone,

First I want to thank you for posting your experiences on this board.  I have had my revision surgery to ERNY with Dr. S a year ago Oct 3rd.  So far he has done right by me as far as my own situation is concerned.  (I say it this way as I do not have the authority to speak for others).

While I do not have the issues that you are experiencing I do share some of your concerns.  Not necessarily because of the type wls I have chosen but because of many of the things you have stated.  Do we really know what these malabsorptive procedures do to us long term?  This is actually a big concern of mine and one, unfortunately, I did not consider prior to my revision simply because it just wasn't a worry of mine at the time.  Right, wrong or indifferent that is just the way it was.   But now it weighs on my mind quite a bit.  I do take the elevated amount of vitamins daily but yet I feel tired and fatigued much of the time.  

I am with you on preserving my life.  If for one moment I believe my health is in dire states I will not hesitate to go for a complete reversal.  Even given the fact that there is no guarantee that your system can or will ever work the way it did pre wls and the probability is that this surgery will always have its effect on our system.  I would still choose to take the chance to make it better.  

Are you looking to have your pouch taken down as well?  I know this is the part of the reversal that carries the highest risk with leaks and such.  Good luck to you.  Please keep posting well after you have had your reversal.  I know I am not the only one out there that a reversal has crossed their mind at one time or another regardless if they would actually choose to go down that path.

Thanks again for posting.
MEW