Input Appreciated Re: Revision Conflict and Worries
Kind of feeling lost and undecided about what to do. I know this is a long post, I tried to make it as short as I could. I had an open RNY in 2001, I'm 5' 10" and went from 315 to 145 in a very short amount of time. I never had counseling or nutritional guidance from my surgeon. It was just him and his staff. I was only told to take a one a day vitamin, and they specifically recommended Flintstones children's chewable. I didn't have regular labs or follow ups other than post operative visits. I moved to a different state about 9 months after surgery and only saw a primary care manger for illnesses, bumps, you know, easy stuff. I never thought to follow up.
Everything had been going fine then in 2004, three years after my RNY, I was diagnosed with cervical cancer. A large tumor was found only four months after the birth of my third child. They felt, since the tumor wasn't present after the birth that hormones played a big role in the growth rate. I went straight to surgery for a radical hysterectomy; then chemo and radiation. I had just had a baby so I had gained weight, I was at 180 lbs. Because I also had two previous back surgeries, including a fusion, and still had trouble with my back even though losing weight helped enormously it didn't completely rid me of my back trouble. So the radical hysterectomy, chemo, and radiation just debilitated me, and I never thought to piece it together to my RNY.
I was with my cancer care team of doctors for seven years, this brings me to 2011. I was being treated in the cancer pain management clinic because the surgery coupled with my already present ailments left me in chronic pain. But when I started gaining weight, and wasn't able to improve my condition, meaning lose weight, the doctors felt I wasn't improving enough so they expelled me from the cancer care pain management center. My weight continued to climb and my condition worsened. I stopped going to any doctors at all, unless to the emergency room. I had restless legs so severe I couldn't hold them still, had a nightmare of a time falling asleep and staying asleep and only managed about an hour of sleep at a time, hair fell out in large amounts, I craved everything from sand, dirt, even brick, absolutely no energy to even stand up, my teeth were in bad shape and did I mention the chronic daily, and I do mean daily, diarrhea. I also noticed I ached everywhere, all my joints and muscles and developed pain in my upper right quadrant as well as these massive cramps/Charlie horse spasms that would hit me right in the gut, I would have to lay on a table for pressure until the spasm stopped.
I was hospitalized in 2011 for a small bowel obstruction, a really horrible illness, they felt was caused from the adhesions from the hysterectomy. Thankfully I didn't require surgery. I had a couple a visits to the E.R. in 2012/2013 for stomach pain, which was diagnosed as only acid reflux. In March of 2014 after I developed severe tachycardia I found a doctor and was so ill that during the exam I passed out. She called my husband and sent me to the E.R, they gave me an I.V. and sent me home. She told me to take iron and after taking iron for two weeks without any changes I found my way to a hematologist who informed me my iron and b levels were completely depleted, caused from malabsorption, and that I'm not able to absorb iron or b vitamins and would require iron infusions and b12 injections.
I had my first iron infusion in March 2014 and weighed 287 lbs. I also began giving myself weekly b12 injections. The hematologist kept a check on my iron/b levels every six weeks but I was still very ill. I decided to seek out a gastric bypass surgeon in August 2014. I made an appointment at Swedish Weight Loss Center in Seattle, WA. Swedish ordered labs and an endoscopy, ultrasound, and x-ray with compound. The results were that I have a gastric fistula which formed after a rupture of an abscess. The gastric fistula connects to my old stomach pouch and drains into it and empties into my intestine. My stoma has enlarged and I have a very short roux limb, so short that it created bile reflux and the bile has stained my stomach pouch green. I also suffer from some serious burning and have to sleep sitting up. I thought it was only acid reflux. The labs showed that I had depleted my calcium and vitamin d levels as well.
I met with a surgeon, dietitian, and psychologist. The dietitian helped with what vitamins to begin taking and how to begin eating more protein w/6 small meals each day. I now take a bariatric chewable multi vitamin 2x a day, 500mg bariatric chewable calcium 2x a day, 5000iu vitamin D 2x a day, B 100 complex 1x a day, 5000iu biotin 1x a day, 10mg melatonin at night, as well as b12 injections weekly. The surgeon talked about what my options were, he mentioned fixing the fistula, removing the old stomach pouch, and possibly making me distal through an open revision. My insurance approved the revision surgery but on a return visit my surgeon told me was very excited about bringing the Apollo Overstitch to the hospital, to be first in the state, and he said I was a candidate. It sounded great so I agreed, I wouldn't have to have open surgery.
But then I got a call from his office that he would no longer be with them and I was moved to a different surgeon. I just met with this other new surgeon last week and was told that open revision surgery is very risky, so I'm guessing he meant the risk to benefit ratio, risk being too great and benefit being too low. From what I've read most revision patients loose 40-60 lbs. But I don't just want to lose weight, I want to feel better. He told me he wants to wait for the Apollo overstitch procedure to close the fistula and reduce the size of my stoma, but that it could be 5 months to a year before the hospital will be equipped to do the procedure and I don't even know if my insurance would approve this new procedure.
I was eager to do the Apollo overstitch procedure but now I don't know, the wait will be so long. I'm thinking about getting a second opinion. No one in the state is doing Apollo overstitch currently. I'm conflicted whether or not I should insist on the revision surgery or just wait to do the Apollo overstitch or if I want see another surgeon for a new opinion. I'm curious if anyone has any thoughts on the Apollo overstitch versus open revision or if anyone has had a similar situation and achieved a good outcome. Thoughts?
I will give my 2 cents. I am so sorry to read your story and situation. Please keep positive and hopeful. I would avoid Apollo procedure as it will not last. You need to go see the best revision surgeon in the nation - Dr. Keshishian. I'm planning my revision with him and while it's not a cake walk - I think it's your best chance to get back to a happier quality of life. Doug :-)
I didn't read your entire post, because it's not broken up into paragraphs and is really hard to read. However, from what I DID manage to read, I agree with Doug---do nothing until you consult with Dr. Keshishian. He's one of the WORLD'S best revision surgeon, and he's willing to take on the most difficult of cases. He can also do a lot to help you with your nutritional issues.
Don't do the Apollo unless there is no other possible option. It's a temporary solution.
Word of caution, be very careful who you let revise you, everyone wants to be local, sometimes the cost of using a local surgeon is much much higher than traveling across the country. A revision in the wrong surgeon's hands, can turn into 3,4,5 revisions, high morbidity or mortality.
If you have a specific question for me, PM me or I will not see it, as I don't check responses on the forums and don't have anything forwarded to my email.
