18 month post surgery update–healed tissue and Barrett’s regressed!

I had a scheduled follow up EGD (upper endoscopy) on 2/15/17–had to have it for surveillance of Barrett’s esophagus. The Barrett’s had been found in April 2015, by biopsy–distressing, as that showed that in addition to all the other challenges I had due to errant placement of the original LINX. the device hadn’t prevented progression of my GERD. (I was Barrett’s negative before the 4/12 original surgery.) In April 2016, following the revision surgery, The biopsy for Barrett’s was negative, so…we were hoping for two in a row!

Wish I had a way to post the 2/15/17 EGD photos–they are a testament to God’s healing and recreative power, channeled through the hearts and hands of my USC revision surgery team. A sea of healthy looking esophageal tissue, with NO inflammation; LINX nestled exactly where it should be, and opening and closing beautifully. My team joked that everything looked so normal that maybe they had scoped the wrong patient! And the biopsy results as hoped for–no Barrett’s! My Barrett’s can now be characterized as “regressed”-which is great news!

I will always need some follow up-including manometry later this year (to confirm sustained improvement of motility) and EGD’s at future points–but I can see light at the end of the 5 year tunnel, praise God!

 

15 month post op update

Now at about 15 months post redo surgery. Scar tissue from the originals surgery has been been slow to “stretch” and sometimes food and acid have gotten “caught” there-very uncomfortable. But with one dilation (April 2016) esophageal strength has returned over time and is pushing food and liquid through the LINX (and now the loosening scar tissue from original surgery) quite well. Next follow up will be December 2016 or early 2017, depending on how I am doing. My situation is quite unusual and MUCh has been learned since my original surgery.

Eight month Post Redo Follow up

I’m grateful to many for what is being learned about LINX! As a redo patient I’m followed very carefully. I had a follow up barium swallow and manometry at USC on 4/19/16. My esophageal strength has improved a lot since my redo surgery–good strong peristalsis. While I’m moving in the right direction, swallowing isn’t as effective as we want it to be (based on my symptoms and measurements) and so Drs. Lipham, DeMeester, and I  decided to go ahead with dilation to break up some of the scar tissues. I’m also taking low dose steroids for a week to help the new scar tissue come in less stiff.

More on LINX Redo

Thanks to all who have said prayers, asked questions, and sent good wishes! Many who have written are struggling with your LINX. I feel for you–having ongoing or late term issues is hard and discouraging, worse so when you don’t understand what is happening.  All of us want to be among the 90 % successes! I enjoyed being a poster child much more than I did a problem child.

Initially, I had LINX surgery in 2012, size 14 device. My problems 7 months later– and intermittently until my recovery from LINX revision–included food getting stuck, pain in my “LINX area”, chest pain, and difficulty swallowing solids and liquids. All of that got some better with dietary changes, topical antacids (Gaviscon), and a course of PPI’s. One dilation helped the swallowing symptoms, but after the dilation the source of the other problems became clearer. It took a lot of evaluation, repeat evaluation, and conferencing between doctors (conversations in which I was an active participant) to finally figure out WHY I was having problems. The key question  that needed to be answered was–was my esophageal pump failing (motility problem) or was it unable to work efficiently because of a mechanical blockage? In my case, the answer to that was mechanical blockage. My original LINX was in the wrong position. It was sized for my esophagus but  extensive testing  (and surgery confirmed) that it had scarred in around upper stomach. My new LINX is also a size 14. Beyond careful takedown of all the scar tissue from my first surgery, my revision surgery included Dr. Lipham pulling my esophagus down into my abdomen and doing intraoperative EGD’s to coordinate internal and external views for precise LINX placement.

At 3 1/2 months after revision surgery, I still have some swallowing problems and “pooling” if I eat too fast or too much. I’m just about tapered off PPI’s. I’m still still making forward progress and am most grateful for the recovery path I’m on now..

 

Update as 3rd anniversary approaches-dilation

Since I wrote my initial article, I had a LINX dilation in October 2014. I was one of the earliest post market LINX patients, and my device size was smaller than the sizes used regularly today. In September 2014, I was still having some food and liquid delay going down–it wasn’t painful and wasn’t interfering with my life–but it was taking a long time for me to eat a meal.  Barium swallow showed some persistent delay. My expert team and I thought dilation might improve things by breaking up some of the scar tissue that had formed around the beads. And it has–eating time is better and my husband, friends, and colleagues appreciate the difference!

GERD seminar Atlanta/Decatur 8/21

 

Is Heartburn Burning You Up? Do you wonder if you will be taking antacids and pills the rest of your life to treat heartburn? Hear from DeKalb Medical’s Heartburn Solutions Center professionals as they discuss how you can keep chronic heartburn from disrupting your life. Professionals include Pam Briggs, RN, Nurse Navigator, Dr. Mark Stern (Decatur Gastroenterology) and Dr. Scott Steinberg (experienced GI surgeon whose practice includes LINX). Seminar is free.
DATE Thursday, August 21, 2014
TIME 6-7p.m.
LOCATION DeKalb Medical Theatre, North Decatur Campus
INFO 404.501.WELL (9355)

 

 

 

GERD seminar June 5

Is Heartburn Burning You Up? Do you wonder if you will be taking antacids and pills the rest of your life to treat heartburn? Hear from DeKalb Medical’s Heartburn Solutions Center professionals as they discuss how you can keep chronic heartburn from disrupting your life.
DATE Thursday, June 5, 2014
TIME 6-7p.m.
LOCATION DeKalb Medical Theatre, North Decatur Campus
INFO 404.501.WELL (9355)