Thinking about RNY to DS

[Settledownnow]

I had lap RNY in 2003 and am thinking about revision surgery to DS. I originally lost 80 pounds and within 4 years regained 45 (current BMI 42). I go back and forth about whether or not it would be worth the risk for more surgery. My greatest fear is that I will go from a situation that is "not so great" to one that is far worse. Not so great means ulcer (now healed), acid reflux, vit/min deficiencies (now fixed) and regular visits with the hemo for iron infusions. I have major regrets about RNY.

I have been back on the diet bandwagon for a few years and am caught in the diet trap of trying to find the "right" diet despite having RNY. I battle the same 10 pounds. I joined weight watchers and faithfully followed the diet and gained. So let's add in "big RNY failure" to the "not so great list".

Is life better after a revision to DS? Any regrets? My fear is that I bought into all of the happy-ever-after RNY post-op stories and what I am reading on all of the boards are also DS happy stories. I know my RNY surgeon boosts about his success with patients, but how many patients does he really follow? He hasn't seen me.

I have taken steps and contacted both Drs. Keshishian and Rabkian. I would be self-pay and cashing out my 401k for the surgery. It is a pretty deal to me and my fear is that it would be a major regret in the long run.

Any revision regrets? Is it worth it?

 

[southernlady]

Welcome @Settledownnow

As I am a virgin DS'er, I can't compare but there are plenty of RNY to DS revisions around. I DO know you have contacted the two best options, hands down.

 

[Larra]

I am so very sorry that the RNY didn't' work out for you, and that you have had so many problems related to it. Probably by now you know that you are not alone. The failure rate for RNY is about 30%, and that's with "success" being defined as losing just 50% of your excess weight. I think you are right that many of the people with less than good results go unreported because many surgeons don't do long term follow-up, and also because some patients are so ashamed about yet another weight loss failure that they slink off into the sunset.
In reality, it is often not the patient that failed, but the operation. Of course there are some people who screw up, but many do follow the post-op recommendations and still never lose enough weight, or regain despite their best efforts.
Having this type of revision is a big decision. You are in contact with two of the best and most experienced revision surgeons. After you meet with at least one of them in person to go over the risks and what benefits you can expect, that should help you with this decision. Please stay with us, there is so much support to be found here, whatever you decide.

 

[brooklyngirl]

There are RNY revision patients here, some have had complications or difficult recoveries because it's a very complicated surgery. I wish you the best of luck in making a decision, they should be able to give you some words of wisdom @Whit @Paula @Charris can't think of who else to tag right now

 

[Charris]

@Settledownnow I am probably considered to be a revision nightmare from the day if surgery on. I had Erny in 2000 and lost 230 pounds. I regained 110. I had a revision with Dr. K OCT 2013. I HAD problems from day one . I had to have to emergency blood transfusions. My blood pressure was wayyyyyy too low like 53/35. My heart rate was way too fast 135 at rest and 170 with any activity. I wasn't allowed out the bed for 5 days after surgery.

A month later my incision busted open Then I had two other surgeries 8 months later and my body couldn't recover. My kidneys started acting funny, basically shut down, I gained 50 pounds in water weight. I became so weak I couldn't walk or anything. Everyone kept telling me I need to go to the hospital I didn't listen. Finally one morning my SIL couldn't wake me up and I was burning up with fever. So they took me to the er.

The docs told my family I was going to die. At that point I was child like I couldn't do anything for myself and my mind had started to go also. I was severely malnourished, once again my BP was so low and my heart rate was 160 at rest. I had oozing ulcers All over my body and I was peeling like a snake. I had 4 blood transfusions. They sent me to rehab but the people here got dr. K involved he called rehab and told them to immediately take me back to the hospital I needed Tpn or I wouldn't make it. So I was getting Tpn 2500 calories plus 120 grams of protein after about 6 weeks I was put in a nursing home.

I WAS in the nursing for 6 weeks to relearn the basics, walk, talk, feed my self, use the bath room the basics in life from scratch. I then came home on Tpn for 2 months and had a home health nurse. Oh yea I forgot while I was in the nursing home I got Mersa. When I was done and was supposed to get off Tpn I got sepsis and ended back up in the hospital for a week. I gained 50 pounds from the Tpn and water weight . I am reloosing it slowly I have 20 pounds left to loose. While in the nursing home I had another blood transfusion and iron infusion.

Having said all that would I do it again? In a heart beat! If I knew in advance all that would have happened to me I would still jump on the surgery table. The difference is that I had a dr. Who knew what to do every step of the way. Dr. K called the shots while i was going through everything when doctors realized they had no clue as to what was going on with me. Doctor K keeps very close tabs on me to make sure I don't kill myself between visits. LOL but very serious. I have to see him every 6 months and have had blood work every 3 months. I think most people go at their 1 year not really sure.

I'm more than willing to answer any questions you have....I believe I'm the worse case senerio and I'm still alive. I will probably never find someone who went through everything I have.


Edited spelling, grammar

 

[Settledownnow]

Charris,
I do not even know what to say. I am overwhelmed by your experience and what you described is a nightmare experience. I am so happy for you that you were able to get the help you needed in order to survive such a terrible ordeal. Do you live in CA or Dr. K. just get involved via phone from the baratricfacts people getting involved? How did you get back to Dr. K? How are you doing now physically and mentally? What you described was a major physical and psychological trauma.

I just do not understand why you would do it all again? Can you explain why?

Key take away for me: I need to keep everyone here involved in case an post-op intervention is needed!!

What do others do if they have post-op complications and surgery was done out of state? I go back and forth about a revision because my weight is a problem for me, I get really tired from carrying my body weight all day and I want to be free from my weight and have my life back. The conflict is that my health and weight are stable, and I would not say that I medically "need" a revision due to be stable. My hemo has suggested the revision for a few years now and initially I said, "no way", but am getting closer to saying "yes" due to the physical exhaustion and wanting to hide my body from the public.

 

[Larra]

@Settledownnow I think you have the right idea, in that this is a serious step to undertake, and that staying involved with the group post-op (if you do have surgery) is vital. In @Charris 's case, people here were very much concerned about her and reached out to Dr. K and others to make sure she got the care she needed, even though she is not near Dr. K (she's in AZ, he's in CA). It made a big difference, and as you can see, she's doing well now. You can also see from her story that part of her problems (though absolutely not all) were due to not going to the hospital soon enough, and part MAY (no way to know for sure) have been due to this being her third bariatric surgery, not second, which may have made her revision even more complicated.

So it's a big deal, but at the same time, being MO day after day after day wears on you and greatly lessens your quality of life. And even though you are presently stable, the weight is still taking its toll on your heart and liver and joints and other organs. It just hasn't presented as official comorbidities yet. But you are using up your reserves just the same.

There is no risk free alternative that anyone can offer you. Only you can determine how much of a problem being MO is for you, and how much risk you are willing to accept. definitely if you do decide to go forward with surgery, make sure you only go to one of the experienced RNY to DS revision surgeons. That will keep your surgical risk to the minimum. And stick with us, this group will be of great help to you.

 

[Settledownnow]

@Larra I really appreciate you putting all of this into perspective for me. My weight is taking a toll on my physically and emotionally, but it is not something that others can really see and it does not show up in a lab result.

Okay -- sending off a release of information to my RNY surgeon to get the ball rolling on a consult or two. I have another big task and that is to find a new PCP. I'm tired of fighting my current doc for bloodwork and other WLS needs.

Thanks everyone for your comments.

 

[Larra]

You will need your operative record from your RNY for your revision surgeon. And remember, a consultation regarding a possible revision doesn't commit you to anything. It's a great opportunity to learn more about your risks and potential benefits. You can then make a well informed decision.

 

[Charris]

Charris,
I do not even know what to say. I am overwhelmed by your experience and what you described is a nightmare experience. I am so happy for you that you were able to get the help you needed in order to survive such a terrible ordeal. Do you live in CA or Dr. K. just get involved via phone from the baratricfacts people getting involved? How did you get back to Dr. K? How are you doing now physically and mentally? What you described was a major physical and psychological trauma.

I just do not understand why you would do it all again? Can you explain why?

Key take away for me: I need to keep everyone here involved in case an post-op intervention is needed!!

What do others do if they have post-op complications and surgery was done out of state? I go back and forth about a revision because my weight is a problem for me, I get really tired from carrying my body weight all day and I want to be free from my weight and have my life back. The conflict is that my health and weight are stable, and I would not say that I medically "need" a revision due to be stable. My hemo has suggested the revision for a few years now and initially I said, "no way", but am getting closer to saying "yes" due to the physical exhaustion and wanting to hide my body from the public.

@Settledownnow Dr. K was my revision doctor. I live in Glendale AZ which is 5 hours away. When I got sick I was basically thinking my situation wasn't as bad as everyone was making it out to be. I didn't want to loose my job not realizing I was literally knocking on deaths door trying to kick it in. When doctor K found out I was in the hospital he got my number and called me but mentally I was so foggy and unclear that he would end up hanging up on me. Then he called the hospital and started taking over my care from CA. They didn't make one move unless he said to. The reason I would do it in a heart beat you ask? DIABETES. My mother came from a family of 12 children. I had 2 uncles die to kidney failure after transplants. My mom was in renal failure when she died, Her twin had lost a kidney, I have 4 uncles and 1 aunt left who all have sever diabetes. One of the uncles lost an eye. My grandmother died very young from complications from diabetes. She had gone blind and lost both legs from it. I had became a brittle diabetic in 1997 and my kidneys shut down. I was in ICU 10 days. NO matter what I did I still had to take 8 insulin shots a day. Then in 2000 I got RNY and it cured the diabetes immediately. Well around year 7 weight started coming back. By 2013 I was 225 and diabetic again. The women in my family do not have long life lines. 62 is it. I figure if I can beat the diabetes I may can get some extra time because I've never been a drinker, smoker, done drugs or been a partier. I believe I have a fighting chance if I can stay away from diabetes.

Yes it is a good idea to keep the people here in the loop. I know they drove dr K crazy about me. LOL If they tell you something you don't like or agree with its probably right. I cant say the people here are warm and fuzzy but they will do their best to keep you alive! They wont sugar coat anything they will give it to you like it is. But hey you will be alive to receive it. Just remember that everything that is good for you doesn't always feel or taste good to you but its worth it in the long run.

I'm doing a lot better now. My memory is recovering and I definitely don't look like walking death anymore. If I had had surgery with anyone other than one of the vetted doctors that do thousands of revisions i'm positive I would have died.

 

[Whit]

In 2002 I had RNY surgery I lost 110 pounds and enjoyed health and happiness for about 5 years. Then slowly the weight crept back on. I exercised, watched what I ate and really tried to stop the gain. Nothing worked.

Fast forward to 2012 I have gained 80 pounds. I was miserable. Osteoarthritis, Marginal Ulcers, dumping, shortness of breath... I could barely walk up a flight of stairs.

I flew down to met Dr. Keshishian who told me the gain was not my fault, that RNY failed me. I had revision surgery 12/10 from RNY to DS. The amazing Dr. Ara Keshishian in CA was my surgeon and I traveled from Nor Cal to So Cal for the procedure.

This surgery is nothing to take lightly. I was in the hospital 3 weeks. While in the hospital I developed a leak and had a second surgery. I went home with 3 drains and a feeding Tube. Recovery was slow, I was NPO for 8 weeks and out of work for 14 total. Dr. K called every couple of days once I was released to check on me. He is the kindest most compassionate person I have ever met.

I have lost 110% of my excess weight. I had issues eating and for the first 6 months I vomited daily. Now 2.5 years I am eating more, well lots of small meals, I rarely vomit, and I feel pretty good.

I would do it again in a heartbeat. I can say with 100% certainty If I had gone to a different surgeon I would not be here today. I traveled to see him on all of my follow-up's. and have even flown down for a support meeting or 2.

I am here to answer any questions you may have.

Best,
Whit

 

[Settledownnow]

These stories are really scaring me. Whit, if you do not mind me asking was there anything that put you at a high risk for revision or was the leak just on the long list of possible complications?

 

[southernlady]

These stories are really scaring me.

Which is why the list of KNOWN RNY to DS surgeons is SO small. And is fluid.

Any of the list is discussed, rediscussed and kept up with for future. The list is NOT a forever one...if someone is added or removed, it is only after discussion. If removed, I add a link to the discussion like I did with Dr. Roslin.

Revision from a RNY to a DSis a HUGE step...you only want the best to handle it.

 

[Larra]

Does anyone know whether or not Dr. Kemmeter (I probably spelled his name wrong) in Michigan is doing RNY to DS revisions? If so, he would be a possibility for people in the Midwest.

 

[DianaCox]

I asked Kimberley to investigate - will get back to you.