Travelled from US to UK for Endostim surgery

Hello everyone!

This forum has helped me a lot and I feel the need to contribute and help others with their Endostim questions!

I am a female, 29 years old and I live in Chicago. I have had GERD for 6 years. For the first couple of years my main symptoms involved constant burping. Most recently, it's been never-ending heartburn + belching. My heartburn is controlled by PPIs but they're evil and I didn't want to take them so I decided to have the surgery.

I tried to get into the US trials but I was rejected due to my borderline manometry results: nonexistent esophageal peristalsis + 0% correct swallows. I decided to travel to Leicester to have the device implanted. The approximate cost was $15.000 (excluding flights and accommodations).

I had the 2nd generation device implanted on Jan 31st, 2016 so I am at 2 weeks post surgery. A huge hiatal hernia was found that I didn't know about. It was 4 cm. I was told to be on soft food diet for 8 weeks but I already tolerate most foods as long as I chew very well and eat slow. I am on Lansoprazole 30mg once a day and that is mostly managing my heartburn. I will try weaning off it after 3 months.

First impressions after surgery:

- I was in a LOT of pain located in my upper chest and arms from the gas during surgery. I could literally feel air bubbled all over my chest that I could pop. The pain lessened after a couple of days but I still get it from time to time. They key is to drink peppermint tea and walk as much as possible. Staying in bed is not good for it.

- I stopped taking the painkillers really fast because they were making me constipated and bloated and it wasn't good for my belly wounds.

- I have a pain in my sternum area that I think may be caused by the electrodes being attached there.

- I burp a lot and it seems harder to burp than before (but doable). I assume it's because of the hernia repair swelling.

Anyways, hope it helps and let me know if you have any questions! I will be positing my recovery updates.

Chicago Girl

So this 8 week soft diet thing is very weird because I started eating normal foods a week after and it was mostly fine. Now, it's been 3 weeks and I can eat anything I want. Nothing hurts when I swallow. I wonder if it's ok for me to eat normal food given that I was told 8 week.. but I figured, if it doesn't hurt or even feel uncomfortable, why not then?

I really wouldn't worry! I'm surprised myself that I can eat normal foods. But it seems to be more standard that people experience swallowing issues post surgery for couple of weeks so I think it's completely normal what you're going through. I know how it feels when there is an issue and it feels like it will never go away but it does and it will. Good luck to you! <3

Chicago girl. I was wondering how you are today. Of had been a few months since your surgery. Does the device workshop? I have about the same symptoms as you have. Tommorrow i get the phone call if i am suitable. But it is expensive.

Dear Chicago girl. Got the message from the doc yesterday. Motility issue...hardly any good swallows. And 3 cm hitial hernia. But she says this doesn't qualify for surgery. Only thing she can do is to prevent to get too much air in the stomach. Endostim is possible in the Netherlands but she says th is isn't going to help. How come you got it in Leicester and at which doc?

Hope you can help me...thanks

Post Edited (tbier) : 7/4/2017 11:27:59 AM (GMT-6)

Don't no if you are interested, but Hospitals in Maastricht (Netherlands) and Leuven (Belgium) are also starting with Endostim. By the way, Radboud in Nijmegen is also closely related to development and implementation of Endostim.

Unfortunately Endostim is not going to work for me Maastricht told me. I have motility problems with my esophagus. It doesnt seem to work properly, thats why it transports to much air to my stomach. Giving me reflux (acid air). Very annoying and painfull, but they cannot help me. If somebody has tips or solutions, please let me know!