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My EndoStim journey

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Posted 6/27/2017 4:49 AM (GMT 0)
Hi 321, thanks for getting back to me. I have only just opened this post, I don't look at Healing Well so much now as it doesn't seem to be used for posts on Endostim much now.

Really glad the Endostim has given you relief from Gerd, that really encourages me, but sorry you're having other health problems. Did you have any difficulty swallowing hard stuff like meat and bread before. I'm wondering if it could be due to the hernia fix.

I'm waiting for gastroscopy/colonoscopy at my local hospital. Have been waiting for 5 months now, they just take for ever, so frustrating!

It's also reassuring to hear that Endostim were helpful regarding the MRI as I have read on some peoples posts that they are not interested and just refer people to their gastro doc.

Anyway good luck with the MRI I hope everything goes well with you.
Posted 6/28/2017 12:44 AM (GMT 0)
thanks Suzannecaroline. I hope you don't have to wait much longer now.

Beforehand, before the EndoStim/hernia fix, there were times when the action of swallowing didn't happen, not always with food but also when trying to drink as well. So it wasn't that food got stuck after swallowing, it was not being able to swallow, which freaked me out.

Also, even now, over 5 months on, I still cannot comfortably swallow lots of foods including roast meats, rice, thick breads including pita bread, and pumpkin seeds/nuts, and I have a slight fear of eating other foods like raisins or wheat based cereals that don't disintegrate just in case. I did notice strangely enough today that eating soft peas were a struggle. But I'm hoping its because my implant is currently turned off. I did ask the surgeon why this is happening 5 months on, and he says its because of the hernia surgery, but in time it will improve. I hope so coz there are a lot of foods I miss and want to gobble up!

Last week my EndoStim was switched off and the next day at the other hospital I had the MRI. The staff were very kind and patient with me panicking, but eventually we got through it. That was all after my family doctor referred me the hospital & consultants had a few discussions before they finally said yes to the MRI. It was lucky the hospital had the right type of MRI machine tho' I was prepared to go anywhere it was available if not!

I'm not due to be seen to be turned back on by the EndoStim surgeon for a few days yet but during the time I've been turned off, I have definitely noticed my voice keeps going hoarse and weird again, like it did before I had surgery/hernia fix. So perhaps the EndoStim has been helping my voice then too, which is good. I was also told it wouldn't take another 3 months for the EndoStim to be working fully again which is good to hear. I am getting a bit of an indigestion feeling but don't feel the need to take antacids etc.

But oh, can someone purrleeze give us a pin or summit, because I still have that wretched on/off shoulder gas pain. I did try the TENS machine out on my shoulder while the implant is turned off, and the TENS did slightly relieve that gas pain - bliss at last!! OH how I have missed using the TENS machine, but once I'm turned back on I won't be using it, not at all, as it brought on a horrible feeling a couple of months back, so even though the EndoStim booklet says ok to use as long as its not the stomach area etc, I won't be. And I'll continue to refuse any magnetic wands/security x ray machines, as I wouldn't want to experience any horrible feeling.
Posted 7/1/2017 11:03 AM (GMT 0)
Hi 321, sorry to hear you still have the horrid gas pain. It's not mentioned by a lot of people on the FB Endostim for Reflux site but those who have mentioned it say it does go with time - but the time seems to vary from person to person. You could go on the FB site and ask as a lot of people who have had Endostim are putting replies to questions. I've booked to have tests in Leicester, if they show me as a candidate I then have to make the decision, which terrifies me I have to admit. The thought of even more pain as well as the Gerd is hard to cope with.
Thanks for replying it does help for those of us considering the device. I hope whatever the reason for your MRI you are closer to a solution. It's good to know you are definitely getting relief from the device.
Posted 9/17/2017 2:44 PM (GMT 0)
it's been about 8 months now, since the hiatal hernia fix and EndoStim implant and time for an update.

I no longer have that awful gas pain in my shoulders, I think it ceased after 6 months. Am very happy about this!

There are still a lot of foods that are difficult to swallow since having the EndoStim, these include Kellogg's All Bran, Nestle Shredded Wheat, Shreddies, etc. And hard breads, crusty breads, scrambled/omelette eggs, and chips (fries), rice, pasta, noodles, also ribs, roast meats including the breast of chickens.

I try to avoid them, as they still get stuck and that's a horrible feeling.

Actually eating, and the prospect of eating, a lot of meals makes me feel ill just looking at it, and these include terribly oily based salads, mayonnaise sandwiches, tomatoes mixed in salads, pesto & mozarella, A shame as I used to love roast veg/mozarella ciabattas, but they're a no go area for me now, because they make me feel nauseaus. It is a problem when not at home because others just don't understand my "fussiness" now, when it comes to foods.

But the most important thing is, no regrets at all about having EndoStim, it has taken away 99.9% of all reflux/indigestion/heartburn, and I have not had to have any of the reflux meds at all.

The EndoStim still seems to set off alarms as I am entering chemists and other places which have an alarm system by the entance, it is really embarrassing!

For me I feel I chose the right device and if I can't tolerate rice I really don't care! What's important is that EndoStim and the hernia fix have been truly amazing.

Post Edited (321lift0ff) : 9/17/2017 8:49:11 AM (GMT-6)

Posted 9/22/2017 4:16 PM (GMT 0)
Hi 321liftoff, you mentioned that endostim has taken away 99.9% of your reflux indigestion and heartburn. What about your respiratory issues / LPR? has that dramatically improved?

Thanks!!
Posted 9/24/2017 11:30 PM (GMT 0)
hi ibo,

I had & still have asthma & continue to suffer with tight chest/hard to breathe/need inhalers, triggers as always are extreme temperature changes, not enough air, chemicals/fumes, dust, and all kinds of smoke. I know now that the reflux was just one of a number of triggers.

They still suspect I might have vocal cord dysfunction but as I won't allow tubes to be shoved down my throat when I'm awake without sedation/anaesthetic, I've been discharged. I was then told I'd be referred to another speech therapy clinic re the VCD, but have not heard a dickybird since. Great...

Tablets I take for another separate condition give me a form of indigestion/nausea, it's one of their common side effects, the doctors accept I can't take them regularly as prescribed. And I can't tolerate ppi's, so when I next see the Gastro doctor, I'll see what they suggest (or not).

hope this helps!
Posted 9/25/2017 10:20 AM (GMT 0)
Hi everybody,

Fisrt, I'm a beginner english speaker, I hope you ll forgive me for grammatical mistakes I ll do!

Question to 321liftOff: do you know what surgery technic was used to you to reduce your hernia, please?
Another question: did some reader knows if an Esostim patient have seen his respiratory problems (caused by acid reflux, of course) cured or gets better after the surgery? Could you deposit links here please?

Thank you, better health to everybody!

Post Edited (Davidoff51) : 9/25/2017 4:36:19 AM (GMT-6)

Posted 9/27/2017 8:11 AM (GMT 0)
hi Davidoff51,

I had 4 keyhole, laparoscopic-style surgery points including into the belly button, and a cut was made where the EndoStim goes. After 8 months the cut mark has faded a lot, & wearing jeans/trousers with a button on top of the zip is sometimes uncomfortable as the button can sometimes dig into the belly button area, so I usually wear elasticated waist style jeans now.

I strongly suggest you post your second question about respiratory problems getting better in a new thread so more people will see it.

good luck!
Posted 9/27/2017 8:44 AM (GMT 0)
Thank you for response 321liftOf!

I should have been more specific: differents pages and articles I have read, about cure of hiatal hernia (and trying to correct GORD, when there's) all talks about Nissen as only technic, so I 'm curious about that surgeons have done to you to make things right. Thank you!

Ok, I will create a thread about respiratory specific point, you're right.

Nice day to every one!
Posted 9/30/2017 7:25 PM (GMT 0)
Herb 321liftoff.

Thanks for the thebinfo! Definitely helps. May I ask what your manometry test showed? I.e. The pressure of your les?

Thanks!
Posted 10/1/2017 12:26 AM (GMT 0)
hiyah iho,

I didn't have manometry/24 ph test/tubes down throat (my greatest fear), I had instead the bravo transmitter which was put in under general anaesthetic, was told it would be for 48 hours but 96 hours were recorded on the device. They said the functioning of my LES was very weak, with severe GORD (gerd)/proven pathological acid reflux, and that the EndoStim could correct all of this, which it has done (alongside the hiatal hernia fix).

I hope this helps too, please feel free to ask any other questions, I'm very glad to help where/if I can.
Posted 10/1/2017 10:43 AM (GMT 0)
Hello!

321liftOff, do you know surgery technic did surgeons used to fix your hernia or you don't, please? If you don't, can I have your surgeon name, or a mail, something for me to try having informations ^^?

Thank you a lot, have a nice day and every body here.

Post Edited (Davidoff51) : 10/1/2017 4:57:06 AM (GMT-6)

Posted 10/1/2017 4:15 PM (GMT 0)
Thanks 321liftoff. It really helps for those of us seeking to do the endostim!

Did you happen to have any volume reflux like regurgitation? That is ny biggest symptom at the moment. I have to eat very small meals, or else I get lots of throats movement sad.

Did you have that and did it improve? Cheers!!
Posted 10/1/2017 6:04 PM (GMT 0)
Davidoff51 - sorry but I can only refer you to my previous answer to your question regarding what type of surgery it involved, but if you need anything further the Leicester team can be contacted and their details are on the main EndoStim website. hope that helps.

iho - regurgitation didn't happen but instead I found the action of swallowing difficult, and my chest made a lot of strange noises, whether I ate a little or a lot or just had water with paracetomols for a headache. And a lot of acid reflux feeling of burning and discomfort. The action of swallowing and noises & burning I had before EndoStim has improved. But for me personally, since having the EndoStim there are still a number of foods that feel kinda stuck after swallowing - the surgeon said its related to healing from the hernia surgery - compared to others here, this issue with crusty breads, hard tough bits of meat, chips (fries), rice pasta noodles etc, and nuts/seeds & wheat cereals, seems to be taking a lot longer to heal than expected, so I avoid these types of foods where possible because I don't like the feeling they bring on. But I can live with that because the EndoStim and hernia fix sorted out the more serious original health problems and if it takes months to come to heal so be it. I hope that helps.
Posted 10/1/2017 6:18 PM (GMT 0)
Hello!

Lol 321liftOff, I didn't realize that it was to you that I already asked this, sorry, I'm follow dozen of subjects and sites, sometimes I'm lost ^^! Euh you talking about Leicester team, in UK? Thank you again, good evening!

Post Edited (Davidoff51) : 10/1/2017 12:36:06 PM (GMT-6)

Posted 12/2/2017 1:56 AM (GMT 0)
HI 321, hope you are still posting on this site, it's been a while. Could I ask you where you had the 96hr Bravo, was it in Leicester? I have now had my tests, 24hr PH showed poor motility but not acid reflux. The barium meal showed mild reflux and poor motility. These tests were arranged through Chris Sutton's secretary Beverley. On the basis of the results Chris said he thought Endostim a bit draconian for me and suggested Stretta, but I've read very little good results from this procedure and would worry if might affect Endostim ability to work if I went on to have that. Because my PH test didn't show abnormal acid reflux Chris said my next move would be to have the Bravo. I'm planning to ask my local consultant (I live in Jersey CI) if he would refer me to a UK hospital to have it on our public health system. It would cost over £1000 privately. I need to keep all my pennies for the op if I eventually have it.

My main symptom is not so much heartburn as chronic coughing after I eat and throat clearing, I also feel as though my whole stomach is moving, feelings of pressure and back pain. Do these symptoms sound familiar to you.

You haven't posted for a while so I'm hoping you get to read this and I hope you're feeling even better than before and have recovered from the horrible gas pain and soreness. All the best.
Posted 12/12/2017 12:15 AM (GMT 0)
hi there,

wow, its about 11 whopping months now since having the EndoStim/hernia fix. I remember getting upset thinking my bod would have a big scar on it, but you can hardly see it now.
Still struggling with certain foods, still don't care; still very, very glad I had EndoStim fitted. Its now been turned up as other tablets I have to take for another condition bring on reflux like side effects. I might therefore have another Bravo done at some point next year, or might be given amytriptilline again, or both at some point soon, to counteract this. I don't believe I have proper acid reflux now, as a lot of the symptoms thankfully don't happen, but am relieved I'll continue to be monitored.

Suzannecaroline thanks that yuk shoulder gas pain is no more - hooray!! I had the Bravo carried out in south London, UK, but now a number of hospitals all over the UK now offer Bravo & not only in private clinics now. This is good news, that it is now more widely available for all everywhere - if you type in "Bravo ph test NHS hospitals" a few will come up on the first few pages, for example.

I had experienced a dry cough before EndoStim. Now I don't. But before and after the EndoStim I suffer with losing my voice (& not being able to singalong to the radio), and a hoarse voice. I am *still* waiting after months on end to be seen by yet another speech therapist at an ENT clinic, they're still not sure if it's vocal cord dysfunction/reflux or asthma related.

Certain people in my life think its highly amusing that I won't eat this, won't eat that, but I'd like to see how they'd manage - I think I'm doing pretty well. Have also cut right down on the chocolate front, and am strict about a small amount of decaff coffee only. I won't eat before lying down, and cannot wear jeans that do up with a button right where the belly button is as it still feels sore (where I had hernia surgery), so most of my bottoms are buttonless or have zips at the side or back, so they don't dig in.

This is the first Christmas where I wish to avoid so many rich, seasonal foods and drink. Hopefully for the first post Christmas period ever I'll still be able to fit into the same clothes sizes as I am now beforehand!

Be well, all.
Posted 1/4/2018 3:15 AM (GMT 0)
I am selected to be a possible candidate. I am 51, 5'7", 148. fairly athletic but not any Olympic or super trained. I go to gym about 3x a week or 4 at most for about 1-2hrs. I take my time to do it. Planetfitness: I bench at 105 or so, abs workout twisting kind, do my obliques, simple weights, cycle, treking exercises using arms and foot on a machine. I learned that if a person does intensive it can break the cable and having to do a resurgery again to put the cable and device in. What kind of work outs and exercise can I do. I was told to refrain from any kind of abs workout. I thought if I stopped doing it I am going to get terribly fat. Suggestions?
Posted 1/21/2018 3:51 PM (GMT 0)
Wow, so it's now a whole year since having EndoStim implanted & the having had the hernia fix done. A year on, I still experience problems with swallowing certain types of food comfortably (hard roast meats, rice & pasta that isn't soft, thick pita breads and thick crusty breads, and certain wheat/bran based cereals which I am still avoiding) but I have no regrets about having the procedures done.

ENT still keep an eye on me because I still have a hoarse voice and so another ultrasound on my throat is on the cards, not too bothered, if it is vocal cord/hypersensitive airways etc then my singing will have to stay atrocious forever more!

Phillipk, well done on being selected. I was informed in Nov 2016 that the trial was coming to the UK and that I'd be a candidate, but as I couldn't find out anything further went ahead with the procedures myself in Leicester. A few days ago I saw the trial (the "sham" trial) is up and running in USA, Belgium, the Netherlands and London UK. I somehow feel, that had I waited to be selected, that perhaps they wouldn't have selected me, and even if they had, who's to say which group I would have been put in (treatment group, control group, so called sham group where it isn't turned on). I hope you can find out you will be in the treatment group, if it is the same study/trial as the one advertised that I have seen that is apparently still recruiting right now.

Phillipk, while I am unable to do the workouts you describe but good luck to you for doing so, all I can say in response to you is, we are all different. For me, a whole year on, I still cannot for too long wear jeans/trousers that have a button on the belly button that digs in where I had the hernia fix, nor can I wear very tight elasticated waistbands on trousers that dig in where the EndoStim device is. I'm just sticking with what is comfortable, but if I were you, it doesn't hurt to contact a surgeon who carries out EndoStim surgery and get the information you want. After a year, I am still having to get others to contact the EndoStim team about queries for example with ultrasounds as some say its ok others no others depends where. The information both you and I have been seeking isn't widely out there, its not that well known, so the more we can find out the better for us and others to be more informed. Keep on at them, and get the information!

In the meantime I try my best to not eat too many rich, fried or terribly fatty meals and have cut right down on my bread intake, because this is another way of keeping the weight stable without getting fat. Having said that, post-Xmas goodies hasn't helped!! Sometimes then, loads of fresh orange juice and crackers instead of a fried egg and bacon sandwich! And thank god for dark chocolate rice cakes, helps just a bit to stop the fat coming back as a replacement for a lovely chocolate cheesecake!
Posted 1/21/2018 10:10 PM (GMT 0)
How will I know if during the first 6 months it will be activated or not? Did it really relieved your acid reflux a lot or you still have to take PPIs?
Posted 1/22/2018 12:45 AM (GMT 0)
you need to check this, hopefully you are in the treatment group and all will be well. Please check it out.

Yes the EndoStim truly relieved my reflux so much and quite quickly after surgery, I did not have to take any more ppi's or famotidine's. Now its an occasional antacid usually if other meds bring on reflux type of side effects. I hope this helps.
Posted 7/21/2018 12:53 PM (GMT 0)
It's been 18 months since the hiatal hernia fix & having the EndoStim implanted - so it's time for an update!

Because of reflux-ish side effects of other medications for other conditions, my EndoStim is now set at 7.5 (three quarters) on, to counteract those side effects. All is working fine, so I won't have another EndoStim check up for a year now.

However...!!

While I have no regrets about having EndoStim and am very happy for what it does, it is indeed a little miracle, there are still things going on that aren't right. -Even now, 18 months on, I cannot eat chips (fries), rice or pasta unless they're really soft/overcooked, and I don't know what it is about pita breads of all breads but they are really difficult to eat as they get stuck after swallowing every time.

But oh, the worst was today - I nearly choked having eaten one and a half raw carrots that got stuck after swallowing. As soon as I finished eating it, I had awful hiccups every few seconds, and then feeling that the swallowed raw carrots were really stuck or about to come back up (which it didn't thank god), it was as awful as eating solids too soon shortly after the EndoStim surgery, 18 months ago. Kept taking deep breaths, and very small sips of water which was tricky with the frequency of the hiccups. It all lasted about 10 minutes and it was horrible.

I'm really shocked by the raw carrots, & I remain in avoidance mode about other foods, steering clear of bran & wheat based breakfast cereals, I'm afraid to eat them in case it happens again with them. I haven't tried for 18 months, instead I'll only eat the kids ones that go soft and mushy when wet.

Also what seems to be permanent for me are that my taste buds have definitely changed. I can no longer have a slice of lemon in a cold drink because it makes the drink taste disgusting to me now. I can have a lemon juice dressing on a salad no problem but not in a drink. A while ago, went back to a cafe where the lamb and lentils are delicious but this time I didn't enjoy it at all, it just didn't taste as it used to, nor did the marinated olives. The same can apply to cheddar cheese too, tastes different, not enjoyable. It's all wierd!! But fine, if that's the way it is, then that's the way it is!!!

Also, I kept a food diary and it became very clear to me that after eating anything more than a small snack I get a pain at the bottom of my left rib/on top of the area where the implant is. It's as if my gut or stomach which are next to the oesophagus and attached to the implant, somehow contracts, perhaps this is the EndoStim controlling the LES in full blast. Unfortunately general other doctors I've seen don't seem to understand what I'm talking about and insist the pain is something completely different, but that's another story.

Thankfully in this hot weather, ice cream goes down a treat!

take care all
Posted 2/3/2019 8:12 PM (GMT 0)
Hi puppetman just wondering how is it going so far ? Still doing great ? Thanks in advance
Posted 9/14/2019 1:39 PM (GMT 0)
Hi all on here I'm jan39 & have been reading with interest those of u who have had the endostim. I live very close to Leicester & I have been suffering with gerd for a couple of years. I have been under several hospitals but this year I went private to a Leicester hospital, & saw Chris Sutton. I've had the momenetry test, barium meal & endoscopy & after wrong diagnosis from our wonderful nhs I found out I reflux poor motility no swallowing problem, just food slow to go down so I drink to help it & have been given the option of all the fundiplication ops or endostim. After researching for several weeks I thought why wud I want to give my self dysplasia through a fundiplication op when I can swallow ok. So I think my option is endostim. I notice on here 321liftoff uve had it & several others thinking of having it. I hav been suffering with anxiety through this dam ordeal but I'm facing the prospect of hoping to feel better if I have the endostim op. These ppis are no good only slightly helping mask the symptoms & not the problem. The only people benefiting from these ppis are the pharmaceutical companies that make them. So has anyone else had the endostim & does it really work. I'm looking for a end to this nightmare that's overtook my life. 321liftoff can u give me the advice that this does work, & that I'm not throwing away a lot of money on a dream that something works. I'm open to all advice on here & wish u all well in your journey to find better health.
Posted 2/27/2020 11:08 PM (GMT 0)
Hi there,

its been 3 years that I've had Endostim.

Jan39:
While as said I cannot wear clothes where buttons dig in or where elastic etc digs in to each of the little scars of the hernia surgery and the Endostim insertion point or around the lower left rib area, and still avoid certain foods/drinks, I have no regrets about having Endostim, and have not had any ppi's or famotidine etc in all this time.

What helped me decide before committing to Endostim was to speak with different consultants who offered Linx, Stretta, wrap and Endostim. I then knew which doctor and which treatment to go with, excuse the pun, Jan39, but I had a gut feeling!

I wish you good luck and keep well everyone
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