Can't understand the lack of revision info for too much weight loss

  I am in terrible shape and have had to deal with this for 6 yrs and surgeon telling me it was in my head and I wasn't even in hte normal BMI range!!!!!!!!  At this point I ER or to my primary at least twice a week for 2 bags of fluids , finally a surgeon other than mine ( as I refused to see him again after last scope) is willing to look at me I am 5'6 and weigh (now this depends on if I have any water on board) 103-110.  My appt is not until the 28th  and my frineds and family are frightened I might not even make it that long , here's my question due to the proximity to and reputation of the Mayo clinic should I just go out of Ins contract , or wait  and hope for the best from this guy??  I have now lost all my teeth to the constant nausea , trips for dehydration , passing out and low blood pressure high heart rate episodes.  Snd my rapid decling I am finally getting phentermin or something sounds like that they ot in your bag at hosp to keep nausea at bys.  I am truly concerned and my family and friends want to "stay with me esp overnights" in a teamwork effort to keep me safe .  Has ANYONE gone through this , both times Iwas scoped the pouch was exyremely small esp considering how far out I was from suregery , and part of where it was connected is flopped over thus my toma swells that's it and I can't even get any liquids or water down HELP if you know anything about it

Wow, if it were me I would find the best revision surgeon and get it taken care of. It just blows my mind how some of these docs do the surgery, and have no follow up for complications!

Please don't waste any more time and get to an experienced doc!

Please keep posting to update!

Yes ther is a reason I think the primary has had me to 2 gastro guys , with same results NOT good.  They could not open the scope inside the narrowing was so tight , and one tried repeatedly just so he could get a look see , but basically said this has been going on too long and there is NO possible way of dilating this far out (I figure there must be scarring? or adhesions.  I thought at the time "WELL HERE'S YER SIGN"  But then the follow up was to drop the ball  and hope the elephant in the room will go away.  I just can't believe it has gotten so bad , am pretty sure my heart has been affected by primaries notes .  Also the nutrionist from the hospital (another hoop) gave me the chart about my percentages and I get big fat 0's in every box.   So much for "lifetime after care "  I suppose for those in my situation that's an easy promise to make .........and then retire .  thanks again ladies

So it looks like your in Arizona...If I were you I would have my records sent immediately to Dr. Husted...Also, Dr. Rabkin in San Francisco or Dr. Keshishian in Delano, CA all these Dr.s are experts at RNY Revision and right now it doesn't look like you need any other procedure other than a take down of what you got so you can just heal...I know that they can stretch the pouch or dialate the stoma...Frankly I don't know why your current physician hasn't already tried these methods, their may be a reason.

Baddgurrl....Don't wait call one of the aforementioned offices and demand to talk to one of the Dr.s....see if you can get into see them right away. You betcha!, go out of contract and go now! Your Dr. is obviously not taking a proactive approach on this and every patient is different. Most people adjust to surgery just fine...you may be on of those 1%'ers who don't...And he's lumping you in with the other 99% who do just fine....he may not be seeing the obvious.

Good Luck....Get Help!

JRolfson

You are lucky to live in an area with all kinds of experts to refer to!  ....  I understand that when you are weak and weary and can barely get out of bed, let alone make an assertive and proactive PLAN that any advice any of us gives may seem overwhelming.

I woke up after Thanksgiving after the scale dipped below the 100 pound range and determined that I wanted to LIVE!!!!  I knew I needed immediate help so I first contacted my friend:  Michelle Curan (aka as vitalady.com) and she sent me exactly the vites and supplements that I needed with my issues.  After a few weeks of diligently focusing on getting in the nutrition regardless.....I felt energy and started making appts with specialists.  I saw 4 Bariatric surgeons for my issues and a couple of non-Bariatric medical specialists.  My goal was to fix the problems without surgery "if possible" and then go for surgery if nothing else worked.  I'm on a plan that's slowly working for me now....it's not to say that I won't eventually either give up on this high maintenance plan or that I'll need a surgery someday.....

You realize you are in an emergency situation?  You are blessed to have support to love and care for you during this time but perhaps someone needs to do an intervention and just throw you in the car and take you to a few docs?  PM me your phone number and address and I'll be there!!!!  Seriously....don't be waiting to see if your body can wait around while the perfect surgeon shows up on your doorstep.  You know you're body is giving out and that it's just a matter of time........None of us can tell you whether to put yourself into financial RED by going to Mayo without insurance.....I would leave that as a last resort personally.  I'd exhaust all on my insurance first.....even if it means going out of state.

When you get some strength back and the brain fog starts to clear then you can see your way to the future and how weight and food will play out in your life.  Our twisted thinking sometimes has a hard time sorting out the wonder and amazement of being such a low weight and getting a lot of attention for our "successful size" when in reality we may be dying!

Prayers your way!  My list began with Dr. Simpson, then Juarez, then Schlesinger, then Dr. Lee, etc.  Keep us posted and feel free to call me if you need any help!

Joyce in AZ
Revision to eRNY 12/26/07
at Goal
480.814.7466

Great Advice Joyce!!....

It's always easy to say to someone do this or do that....But starting in her home state is definately the way to go!  My advice to call and out of state Dr. probably isn't the greatest as their might be lots of hoops to go through...In your situation all the Dr.'s Joyce has listed are excellent right there where you live.

You've been there Joyce....so have I....my first surgery I went down to 91 lbs. and it was very, very scary! not until a dr. told me he was taking down my surgery did I really get the help I needed.

Good Luck make some calls today!

Janie

thank you all for your supportive info, One doct6or mentioned on the Az list is the one who basically told me it was my fault and I was fine , went into primary care and got another two bags today so I am feeling a lot better .  I also am having a hard time getting my med records from original office so requested them today ( my own copies) I have an appointment with Dr. Berger in Flagstaff on the 28th.  Just am scared that I won't make it that long all I can do is keep trying and rest assured I have no death wish .  So they pulled another metabolic bloodwork up , and PC said depending on the results they could get back to me today or tommorrow.  My primary is horrified and I believe is starting to lobby for me .  I only want to live , and become stronger am just wondering now how long I can last it out , fluids at least are keeping me going.  And the brain fog....seriously bothers me .  But I am hopeful there is help out there as I have been told by so many "well intentioned" people that I never should have done the surgery and "I told you so's dont help much.  But I am trying to eat , and pushing fluids .  And thank you all for recognizing that it is not in my head , in fact I hate to think how much I would eat if possible .  I am very grateful for the medications I have been taken off of since surgery , and am not sorry ... but wish I didn't get shuffled around for so long.. Again thank you all I am going to do some research as much as I can .  But am surrounded by family and friends who care for me and I HAVE to believe that I won't be unanswered anymore!! thanks so much Carol

I'm so sorry.

You might want to look for the profile of Dancing Judge.  She had a MGB and lost way too much weight... and was basically on the verge of death.  She finally found a surgeon who took down her bypass and converted her into a VSG.  It allowed her to gain weight.... but not too much.

Are you on pancreatic enzymes (Creon)?? 

Whatever you decide please find the most experienced revision surgeon you can.  And just because they're at the Mayo Clinic, doesn't mean that they're experienced revision surgeons (of course they could be. ;))  If it  were me, I'd choose a doc used to doing complicated RNY to DS revisions as they'd be used to taking down an RNY. 

Any chance you could go to NYC this summer for Dr. Gagner? One of the best in the World.  Or maybe KY for Dr. Husted?

I certainly can go anywhere , I am not rich but have fanily and my own resources to go out of network , it is so difficult for me to find anyone who wants to go in , no I get no pancreatic enzymes .  IF you can find someone to go in after MY suregeon who is something like  a pioneer in the field ...thus his retiring within 2 years if my surgery .  HAd my ususal two bags of ringers in my pc office yesterday and they pulled a metabolic panel and therefore am hopeful they will find what is going on that way and get moving I honestly don"t know if I will make it to my "consult" with the surgeon in my providers network. I imagine I would have to be treated with intraveneuos feeding ( TPU??) before even attempting to have surgery .  Thanks so much for your caring response and I am going to keep all the Dr.'s names and have my cousin sheck into it as he is a GP.    What is really sad is my own children are avoiding me and ( they are the proper age to do so I suppose) I know this is a fear based pulling away but still the same gives me great anxiety.  If the worst should happen I don't want them to regret or blame themselves.  Thank you so much I appreciate the time you gave to helping with ideas .  All good things to you , Carol

Dear Baddgurrl:

I truly know what your going through as I went through something very similar after my first surgery. I was in bed almost a year and thought I was truly dying...I didn't eat anything for 6months and barely drank anything...After the EGD they told my the pouch was made way to small...Not even a morsel of food could fit...To drink water was almost impossible also the stoma opening was made very small. I found a very caring PCP who told me flat out if you don't start eating and drinking were taking this surgery down...Mind you he wasn't even a surgeon nor did he know anything about bypass...He placed me on Liquid Iron Transfusions, an extreme vitamin regimand through IV, and drinks like boost...He placed me on 16 small meals a day...

Little by little I began to get stronger...but it took forever...

Baddgurrl...If your not wanting to talk with someone local, then I would definately call Dr. Husted's office or Dr. Keshishian they are both so good in revising people from RNY to DS...It would require taking down your pouch and Dr. Husted has his own techniques for doing this even in the most unusual and difficult cases or cir****tances...Dr. Keshishian was somewhat of a pioneer in this as he did one of the first studies out of 40 patients he had success with all...Dr. Husted's Number is 606-425-4697 and Dr. Keshishian's # is 800-816-6647...You can actually email Dr. Husted on his website which is listed here and he will answer you usually right away...I've talked to him several times by email...Good Luck

Janie