Some Information Wanted to Share With You

Hello Everyone, This will be long - and I apologize for it however, I just know that there are others of you who are suffering out there..... PLEASE NOTE, I am not here to discuss debate the pros/cons of WLS. I had it. I'm an adult. I'm just here to help share new things I've learned with others that may be in the same boat. Recap: 1999 - VGB (original weight - 295; lowest weight post - 180) 2003 - Revision to RXY (original weight - 275, lowest weight post - 175 ( Surgeon: Dr. Rosemarie Jones (for both) Had to have revision because there were problems with my ring and basically a hole in my staple line. VGB Complications - Drainage tube issues (infection) which I needed to be re-hospitalized for; vomiting RXY Complications - Some vomiting (but not as much as I would expect), some dumping (again, not as much as I would expect). Now, the REAL complications..... In the fourth quarter of 2004, I started becoming anemic. I did not know this. I ate ice and over time, ice became my main food group (for real!). I then used to eat pretzel sticks to combat the nausea caused by the large intake of ice. Blood tests were ran on me and for the most part, everything "looked normal". My ice/pretzel stick consumption continued for another year - becoming much worse. In addition, I was sleeping less and less and eventually, I was terminated from my position. My concentration, my mood swings, everything was not me. I finally convinced my nurse practitioner (Jana Swanson - The Care Group in Carmel), to send me to a hematologist. It took me FOREVER to get an appointment. I did eventually get to see Dr. Ann Hedderman. Dr. Hedderman knew some about WLS. When I told her my symptoms she said, "I don't care what the tests say, you have anemia." This was a HUGE validation thing for me. She scheduled me for an iron infusion. I went to St. Vincent's Hospital (86th street), 6th floor oncology unit - spent the day getting infused with lovely iron. About two weeks later, I started to notice an improvement in things. I wasn't as fatiqued. I stopped eating ice/craving pretzels and I started to eat "normally". Around the same time, I started to get some other symptoms. Here's the list: 1) Constant numbness/tingling in feet and sometimes hands 2) Constant hunger 3) Feeling too weak to exercise 4) Short-term memory shot 5) Not sleeping well 6) Blurry vision 7) Heart palpatations 8) Thirsty 9) Achey bones and muscles 10) Headaches - the kind where if I didn't lie down, I would feel like I was going to pass out. Dr. Hedderman sent me to a neurologist - Dr. Mohan. Dr. Mohan did a very detailed assessment of what was going on with me. I got a MRI, EEG, EMG, CT Scan - the works. All tests came back "fine". I had my very first seizure 2 1/2 weeks ago. I was at Kroger on 116th and Cumberland Road around 5:30 p.m. I stopped by to pick up some things (including prescriptions). I was lucky enough to be standing next to a nurse when this all happened. They said I had a Grand Mal Seizure brought on by low blood sugar. I passed out - and honestly, I don't remember a thing. When I came to in the ambulance, I didn't remember anything - it was a struggle to remember my name, where I was, etc... for the first hour. I think they said my sugar (in the ambulance) was measured at 60. Many medical types say that this couldn't be the reason for my seizure - it wasn't nearly low enough! When I went back to see Dr. Mohan, he was convinced that the seizure was all about low blood sugar. By the way - this man is the epitomy of everything you would ever want in a professional. He asked his staff to get me in to see an endocronologist asap. They tried but was told by the scheduling individual for this particular endo practice that "I wasn't sick enough" to be seen earlier than the typical, 2 month new patient waiting period. This sent Dr. Mohan into a tizzy. I had been in the ER twice in three weeks, I put on 34 pounds in 4 months - how much sicker did I need to be? While I was sitting in the exam room with him - he went through his lists of endocronologists one by one - and called them HIMSELF. SERIOUSLY!!! He wanted me to be seen that day. He did finally get through to Dr. Habib who came in on his off time to take care of me. I spent about an hour with him. He came back with the following information. He believed that I had something called Nesidioblastosis. I'm going to post the article in a separate email. Basically - they believe that I'm not "hypoglycemic" like others are. There is probably a tumorous area that has decided to just randomnly generate insulin and it's probably responsible for many of these issues that I'm having. Because Indy has such a centralized focus on WLS, I guess that some dr's (It appears that they have a "special" study going on for this here at St. Vincent's under somebody named Maurice E. Arregui, MD.), based upon this Mayo Clinic report, started looking into what was going on with the people in this community. I'm telling you all of this because were it not for Dr. Habib's connections, he would have never known about this and subsequently, I might still have been labeled a "crazy person" (at least I felt this way). I was admitted to 86th street that day of my appointment with Dr Habib - 8pm at night. I'm going through a 72 hour fast to see if what they suspect is true. So far, more than half way through, my blood sugars have remained normal - 80-88 range. I get to drink diet sprite and they have i.v. fluids running through me to keep me hydrated. Every six hours, they have been taking a ton of blood from me. At the end of the 72 hour fast, a couple of tests will take place. First, they will give me a specific amount of food (carbs/proteins/fats/etc...) to eat. They will watch all my levels to see what happens. Second,(and this procedure is a little more fuzzier - but more details to follow) they will insert dye into my pancreas to locate what they think is the tumor causing the issue. Supposedly prognosis is excellent. SO - my fast will end at midnight on Saturday night. Food will happen Sunday morning. Pancreatic testing will occur on Monday (we think). STAY TUNED! And please keep your fingers crossed.

WOW, thank you for sharing, How often do they think that something like this happens to WLS patients? Is it something that we should worry about? I hope that you get feeling so much better. it is NO fun at all to be sick and not know why at all.

Hi Faith, Right now, there's just not a lot of information/research to indicate if this is rare or typical for patients. My endocronologist has seen about 7 cases in the past 6 months (here in Indianapolis). They also seem to span years in post-wls. Some are under a year while me - 3 + years - one of the oldest. I think my main point in posting this is that everyone understand that there is a HUGE difference between "dumping" and this situation. If you have had many of my same symptoms, you really need to bring it to the attention of your physicians asap. Because it's so new, they may need to do some digging - that's why I included the names of all of my dr's involved.

Your problems sound a great deal like those of a good friend of mine who is 6 years post gbs. I am going to email you privately and see if I can hook the two of you up. Is that ok with you?

Wow ... I find it strange that I'm seeing a lot on this lately. I, too, recently had a strange experience. I was in Dallas 2 weeks ago for work. Wednesday night we rented out a club for our group, and about 11pm, the paramedics were called because they found me on the floor in the bathroom. I *know* I wasn't intoxicated (I did have a few, and most likely too much sugar in what I did have, and definitely not enough food throughout the entire day), but I believe that's what the paramedics thought, and after they took my blood pressure they left (no blood glucose check). I was nauseated and trying to throw up all night (actually all the next day as well, but throwing up for me is next to impossible these days). I then slept (restlessly) for about the next 24 hours. When I talked to a friend of mine later, he said "you were dumping, weren't you?" I hadn't even thought of that. I did a little more research and saw the relation to hypoglycemia/late dumping, and I felt that hit the nail on the head. I saw my doc a week after that (was scheduled for gallbladder surgery 2 days later), and he had me cancel my surgery (I guess passing out a week before surgery isn't a very good thing) ... and although I printed out all the hypoglycemia/late dumping info for him, he still wants me to see my cardiologist, a neurologist and a new GI doc (see my profile for info on my previous GI guy). Personally, I think he's a little over the top here. BUT ... one thing that does interest me is this gallbladder issue. I AM MORE CONFUSED THAN EVER. One doc says take it out (although it has just a "mildly" decreased gallbladder ejection fraction of 30%, but because I'm "symptomatic"), and another doc is telling me not to rush into it because we're not sure that's the cause of my pain (this has been going on since August). MORE TO THE POINT: I do find the mention of the pancreas in this post interesting as well. Although gallbladder symptoms differ from person to person, I've noticed that the pain across my back (just under the shoulder blades) is more on my LEFT side, although it does radiate across the entire back. Gallbladder pain tends to radiate more on the RIGHT side of the back, BUT, I have read the upper left quadrant back pain COULD be a symptom of pancreatic probs. I am SO close to taking a hiatus from doctors ... I do NOT do well at not being well. Anyway, thanks for the post ... definitely good info to hold on to ... and PLEASE keep us posted to any other findings!!

Karyn, I would HIGHLY suggest that you see an endocronologist. Gallbladder/Pancreas - they're all a part of an endo's speciality (I think!). Also - do you notice that you actually have symptoms 1-4 hours AFTER you eat? That was the big clue for my endocronologist. I would wake up in the morning fine, but as soon as I started eating - no matter what it was - this cycle of symptoms would go on and on all day. It was exhausting!

Hi Kristina ... OMG ... symptoms? since August I've pretty much been living on soft foods (mainly soups and coffee). I get pains when I eat solid foods, to answer your question, yes ... for several hours after feel nauseated and bloated. I've had a CT scan, endoscopy, and small bowel xray series. All came back fine. I think there may be a few things going on here as well ... partly psychological (too long to go into here, but some of it is in my profie), which I think is why some doctors either don't take me seriously, or just don't want to "deal" with me (as is the case with my surgeon and gastroenterologist) ... so I'm beating myself up because I'm convincing myself that this must just "all be in my head". Like I said ... don't know if I care to deal with any more docs at the moment. But thanks SO much for the info. Its really nice to know you're not a "lone soul" out there.

OMG... This sounds exactly like me. The ice/pretzel thing as well as most of the other symptoms......I am going to print out your post and take it to my Dr. I was beginning to think I was crazy, the ice/pretzel thing especially. I got to where that was about all I ever ate......... I did go to the dr, and she is not experienced with WLS....but she did tell me I was anemic and put me on some vitamins....... also a B12 shot.......but it doesn't seem to be helping yet, also have been trying to eat more protein, but boy it is hard....... Sharlene