XPost: EGD Photos

Hi All (XPost - Main, Revision, TX, & DS):

I am 7 years post RNY and have started having seizures due to hypoglycemia. I had an EGD done Friday and have the images from it to take to the bariatric surgeon in a couple of weeks. However, the doctor that did the EGD doesn't know much about RNY. So, he says that the stoma is wide open dumping food directly into the intestinal tract which is what is causing the hypoglycemia. This makes sense to me. However, I can see the pics of the stoma, but no measurements to actually go by here. 

For any of you that have had these studies.. do you have images that you wouldn't mind sharing?

Thanks,

Jackie

((((Jackie)))) sorry to hear this sweetie.  Have you communicated with Beth (MeltingMama)?  She's having terrible hypoglycemia and seizures also.

Hope they figure out how to help you.  What are you chances of getting a revision?

Hey there!  Good to see ya :)

I really don't see anyway around having a revision of some sort. My doc no longer takes my insurance. So, I have an appt. with the Davis Clinic in Houston next week... so, we will see. I'm pretty sure insurance will cover whatever they need to do because of the seizures. I don't want to hear any of this crap (from doc) about it being due to my poor eating habits. I have been (99.9%) compliant with the pouch rules.

Take care,

Jackie

Jackie, if you don't mind sharing was there anything else besides the seizures that made you think there was something wrong with your pouch?  If you can share with others, in case someone else is dealing with problems, regain, etc. I'm sure others (besides myself) would appreciate your thoughts?

What surgery are you considering for the revision? 

No, I don't mind sharing.... WARNING�LONG�POST�AHEAD

I think the most important thing to know (at least in my humble opinion) is that even though I had my first DOCUMENTED seizure in 4/09 ... no one really determined the cause and I didn't start putting it all together until 2/10. So, as I go back and look at some of the events/episodes now... it is apparent this was related to hypoglycemia, but like I said... who knew?

Ok a little background:
1997 - Molina band - 400lbs (LW +/-255)
2003 - Revision to RNY (SW 315)
2005-2007 - (LW 135) Multiple reconstructive procedures. I hit my low weight around Christmas 2006, but could never get out of 150's after thighplasty and subsequent brachioplasty & mastopexy. I was having continual issues with lymphedema (and still do though not as bad). From my 135 weight I probably actually gained about 10 lbs just from a year's worth of periods of inactivity because of the reconstructive surgeries and complications. However, I stayed in the 150's for a very long time and always just blamed the lymphedema because the weight would fluctuate but still stay in 150's.

In March, 2009 I was in Seattle attending a conference. I had a presentation in the morning that I was very nervous about and I hadn't slept well... plus my lymphedema was worse than usual because of the traveling. I never eat as well as I should on out-of-town trips. I can't remember what I ate for lunch that day, but I do remember that I�shared an alcoholic drink with a co-worker. By "share" I�mean literally... I'm not a big drinker. A few hours later we were out walking around and the next thing I�remember I woke up in a neuro hospital where I stayed for several days. The friend that was with me said I had a grand mal seizure in Walgreens and whacked my head really good on the floor (which is why I was in the hospital so long.) The cause of the seizure was not determined. When I came back home... my doc sent me to a neurologist and everything looked good. No need for anti-seizure meds because they couldn't determine the cause. I do remember at that time my friend telling me that my blood sugar was somewhat low when the ambulance arrived but they gave me an injection. But I didn't have that recollection until recently.

Since about October, 2009 I noticed I was having night sweats and seemed to be eating more and more. My weight had creeped up to the 170's. I attributed the eating to stress and the night sweats to "maybe menopause is coming"!. Since Dec, 2010 I have been driving from College Station to Austin and back at least once a week. On one trip home in February I ate lunch and started the drive. I HAVE ALWAYS WAITED ONE HOUR after eating to drink anything and my body KNOWS when that hour is up! So, I�started feeling like it was time for a drink... I pulled over and got my trusty COKE ZERO... within about 30 minutes I�had to pull over and let someone else drive... my thoughts were foggy, I�was weak & shaky and sweating profusely. By the time we could get to another gas station I was totally soaked.. I�could have wrung out my hair. We stopped and I�got a nut/raisin mix and a cheese stick. I realize now that I�had this combo frequently when traveling and this is probably why... to ward off this low blood sugar mess.�

Anyway, Feb, 2010 is significant for me because that's when I�started researching to find out what was going on. I found info on reactive-hypoglycemia and immediately started following the recommended eating plan (essentially what we should be eating anyway), but I was actually counting and balancing carbs with protein every single time a morsel went into my mouth. In March, I was at a hotel in Dallas... got up in the middle of the night to go to the bathroom and felt just fine. I got 2 steps away from my bed and immediately felt horrible. When I woke up... I was far away from the bed, on the floor and drenched in sweat. I'm pretty convinced it was a seizure as I couldn't have gotten in that position at that distance without some flopping around. Anyway, because I didn't have a warning this time.. I was scared to drive. So, I�bought a glucometer and let the finger *****ing begin. Also, the dinner that was provided the night before consisted of a pasta bar where I�ate mostly italian sauasage, pepperoni, tomatoes, and cheese with less than 1/4 cu of the pasta AND�I followed it with a protein bar just to be on the safe side.

I set an appointment to see an endocrinologist in Austin. I have a nodule on my thyroid which produces similar symptoms when it acts up and then there's the old idea I had about menopause and the research all pointed to insulin issues... so, off to the endo I went. As soon as I�told her the issue; she said you don't have an insulin problem... your food is emptying too quickly from the stomach to the intestines and you need to see a gastroenterologist (she also did a bunch of lab work, etc. Vit. D deficiency and high Cortisol, but otherwise unremarkable). I forgot to mention that she did give me an RX for emergency Glucagon injections for my blood sugar.

I set an appointment with my primary care doc to let him know about the seizure, get my B12 shot and see what he thought about a gastro doc. I get really tired of traveling all over this state for treatment. So, if I�can do it close to home.. I prefer to. He referred me to a gastro doc here. I saw the doc and to his credit he admitted he was not familar with hypoglycemia as a potential complication after RNY. He did some PubMed research with me in the office and said he was going to have to do more as removing 50%-90% of the pancreas seemed a bit extreme (WOW), but in the meantime he wanted me to see a bariatric surgeon as surely they have been noticing this and then follow back up with him. Ok, my bariatric doc is in San Antonio. I�live in College Station. My doc doesn't take my insurance any longer. I am NOT�going to drive that far to pay out-of-pocket when I know this is going to turn in to more than a consult. So, I called the bariatric doc here in town. They talked to the gastro doc and decided to refer me to the Davis Clinic in Houston after an EGD... which is where we are at now. I�have my appt. there next week.

So... hmmmm things I've noticed along the way:

- My weight is now in the 190's and steadily going up. I eat all the time but mostly out of fear of having a low blood sugar episode.
- I got the records from the hospitalization in Seattle... the diagnosis of "hypoglycemia" is noted in several places, but I guess no one ever attributed the seizure to it. It was 60 when I got to the hospital which isn't very "low" for many people.
- Since I have started monitoring my own levels... I can tell when I go below 87. If it gets to 80, I'm sweaty and shaking. I have had times when it ha**** 87 and been to 70 in less than 5 minutes. I have also had times when I have eaten and eaten to try to bring it up just to watch it continue to drop. This is particularly frustrating when I'm trying to drive across our beautiful state. These numbers are not that bad for most people. But for me... if I can have a documented seizure at 60... I'm not surprised that I can tell in the 80's and I'm not taking a chance.
- I have had some episodes that were attributed to passing out and assumed to be related to low blood pressure, but as I look back on them now... I�wonder if they could have been related to this.

As for revisions... I�don't know. I know there are options: StomaphyX, Fobi, AGB, or DS (or remove part of my pancreas... NOT). I'm 42 and have followed the RNY eating/drinking rules better than most post-ops that I personally know (I hope I'm not offending anyone, but my "friends" and support group folks would most likely agree with this). I had my first WLS�and '97 with a revision in '03... is this going to be an every 7 year event? I�hope not. The DS looks like the best long term solution. The pyloric valve is restored which should minimize the possibility of the hypoglycemia returning. However, a RNY to DS�revision carries a very high complication & mortality rate. The StmaphyX and/or ROSE�procedures look appealing, but I've read too many posts from people that received no benefit. Fobi or AGB... probably my safest option... but I'm hoping the good docs in Houston will have some suggestions/guidance for me.� UGH.

- I forgot to mention the significance of the COKE ZERO earlier was due to the caffiene. I didn't realize it but caffiene stimulates the production of adrenalin which stimulates the insulin production and further drives down the blood glucose levels.

-One more caveat.... "eating/drinking rules" ... each surgeon is different... carbonation was OK per my surgeon after 6 months... this may not be the case for everyone :)

Now do you see why I�didn't put all the details in the first post? :)

Take care,

Jackie

Wow you have been through a lot.  You really do need to talk to Melting Mama your experience is so SIMILIAR to what she is going through. 

My surgeon was also OK with Diet Drinks after a certain period, I rarely drink one but occassionally I will drink about 1/2 of one.

Don't consider the StomaphyX or ROSE procedures IMO the results have been very lacking in helping anyone from my research.  Look at all your choices and what insurance will pay, IF I would ever have to have a revision, I HOPE NOT, I'd definitely consider the DS with an EXPERIENCED DS surgeon.  Is Dr. Wilson or Dr. Stewart by any chance an option?  The DS doesn't seem to have the side affect of hypoglycemia like the RNY.

Don't get me wrong I LOVE my RNY, I just see more revisions with it or other surgeries than the DS, long term.

Good luck Jackie, I know the seizures are scary.

Thanks Dana,

I haven't personally talked with MM. I have looked at her website but between dealing with my health crap, working 40 hours a week, teaching an undergraduate course and taking a 9 credit hour doctoral load.... NO TIME :)

I will make the time though. Now that I have it on good authority that its worth it :)

I'm not sure about Dr. Wilson, I'll check on him. Yes to Dr. Stewart. And I have a great friend that used him for her RNY and swears by him. We'll see with the Davis docs have to say.

Thanks for all your support over the years :)

Jackie

I don't really have anything to add to what Dana has already said. But as one of Dr. Garth Davis' patients I just wanted to assure you that you'll be in great hands, with either him or his father, Robert. They both truly care about you and that comes across. I've never felt 'like just another patient' with either of them. Although Dr. Garth did my surgery, Dr. Robert did my husbands hernia surgery so I do have experiences of sorts with both. I've had great experiences with almost all his office staff, too, and the few problems we had were corrected swiftly.

Good luck...I hope everything works out for you. Please keep us posted on your progress. This is something we all need to know more about since it's becoming a more prevelant side affect.

Thanks Dee,

My appointment is with Robert. I have had friends that have used them in the past and all still recommend them .... which is always a good sign!

Take care,

Jackie

I highly recommend the Davis', but if you end up deciding on the DS you will have to switch surgeons, because neither on them do the DS surgery.  I would be real interested to hear what they have to say about the hypoglycemia and RNY.

My brother was hypoglycemic as a kid and the doctor recommended he switch to soy bread.  Do you know how HARD it was to find soy bread in the late 60's ????  Even in Houston!  I think there were like 2 health food stores in the entire city and my Dad had to drive a ways to get it (he stocked up and froze it).  My brother was rail thin and had the shakes a lot and had to eat all the time.

Good luck with your consult - I hope you find some answers.