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BEST SURGERY AND HOW DID IT HELP YOU???

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Posted 3/4/2017 7:23 PM (GMT 0)
what surgery works???? i think, not sure yet that it's my sphincter valve!! i don't plan on suffering thru this constant feeling sick and don't want to keep taking ppi's!! i'd rather have surgery!! what has been your experience with surgery and various types??????
Posted 3/5/2017 5:58 PM (GMT 0)
I am in the same boat! I had a consult for nissen fundoplication, but I'm thinking that something better has to be coming. Looking at Gastroesophageal Valvuloplasty and hoping someone in my area might perform it. I think it is an older surgery, but performed better now? Not sure...I know someone here just had it. Only doctor I see who does it in Florida and I see mixed reviews about him.
Posted 3/5/2017 6:48 PM (GMT 0)
i will see my doctor in another 10 days. i have been reading info online...but so much on there is conflicting info that it boggles my mind!!! i read about that doctor in Florida but i live in CA...so no chance there either. please post if you find something! thank you
Posted 3/7/2017 9:08 PM (GMT 0)
I know!!! I have the go ahead for surgery, but have not scheduled. I've been suffering for 17 years. My family is apprehensive and scaring me. I have heartburn 24x7. Meds stopped working and I refuse to take them. Diet helps, but not the solution 100%. I will post if I find something out and you too please!!! I'm in NC so would have to travel too although not as far as you. My GI doctor had not heard of the doctor in Florida. I gave him the guy's name and info to check it out. Hope your doctor can give you some more insight.
Posted 3/7/2017 11:00 PM (GMT 0)
hi law, the more recent posts about the nissen surgery are very positive. lots of people in your boat have severed for many years before they had surgery and most posts say they wish they had surgery much sooner and thank god they did. they came off ppi's which i think will cause many more problems in the future. i didn't know i had gerd. i thought i had anxiety because it felt like someone was pressing on my chest and shortness of breathe. then one day i woke up and WOW...the burning from below my ribs to the top of my chest was unbearable!! so, i actually have only been sick and on ppi's for the last 2 1/2 months! and guess what...i'm not waiting years to have the surgery! i'm going in as soon as possible!! after 17 years...go for it!! you might say the same thing as most post surgery patients!! keep posting...thanks!
Posted 3/8/2017 1:15 PM (GMT 0)
I had the full NF surgery three years ago. My only suggestion is to go through all the proper testing to see if you are truly a candidate for surgery and don't rush into surgery for something that you are only recently suffering from, and don't underestimate the role that anxiety plays in your symptoms. I had multiple endoscopies, diagnosed with H. Pyloric bacteria, barium swallow, manometry, Bravo pH monitoring. I suffered with GERD most of my adult life (I was 53 when I had the NF). Surgery should always be your last resort, it's not an easy recovery, but mine was totally successful. I no longer have the ability to vomit, or belch, but that was I tradeoff I was willing to make. I started feeling better at about 6-months, and felt like my "new" self around 1 year post surgery. I also missed 2 months of work, but everyone is different. Having the surgery does not give you the ability to eat everything and anything you want, and overindulge in alcohol and non-prescriptive drugs, you need to make lifestyle changes. I still have foods that I don't tolerate well, and I try and stay away from them, and still experience waives of nausea that I take Zofran for, but I no longer take any medications.
Posted 3/8/2017 4:19 PM (GMT 0)
Thank you bythesea and SharonZ. Alot of what I have read is encouraging, but there are some recent ones I have seen out there where it did not go so well. I think there are so many variables from the skill of the surgeon to each individual's healing. I am off PPI's since August 2016 after they completely stopped working. Whenever my GI would asked me to double up on a dose short term, it would do nothing. I always had major flares on PPI's. My EGD's show irritation while on PPI's, but as my doctor would always say, "not that bad". So I have constant irritation and heartburn, but no Barretts thank the Lord. My hernia is very small. My pH monitoring test back in 2006 showed almost constant reflux instances but bile only. The surgeon I saw said he thinks that is why meds don't help me. My GI doc said it is more likely that I have both acid and bile. He did give me carafate because of that report and I do take that from time to time especially during a major flare. Since I also suffer from gastritis (seen on EGD's), I have to watch my diet and I know surgery isn't going to fix that. So, I'm left really with continuing to live with the esophagus irritated and the pain of that (the right side particularly is ulcerated) or stay tough until another and perhaps more natural method comes around and pray I don't end up with cancer in the meantime. I can also go ahead with the surgery with hopes to at least help the esophagus and that pain. I can't go into it anymore thinking I will be able to eat more foods or drink coffee. Sharon, have you been able to have coffee (decaf as well) since your surgery? As far as being a candidate, what is the criteria? My GI doc said all 8 of his patients he sent out for surgery were elective. Their meds work but they didn't want to take them anymore. They are all doing well. And another very interesting thing he said was that those people who respond well to medications have a more successful outcome than those who don't respond. That was a red flag for me because I don't respond 100% to meds. The surgeon thinks I am a candidate based on the tests and what I suffer with day to day and my GI doctor has finally said to give the surgery a try. To make my husband feel better, I am going to a second surgeon for an opinion to see if he thinks it will benefit me or would consider me a candidate. You are 100% right SharonZ, there are trade offs. Are you glad you had the surgery done? Is your esophagus completely healed now? Is it difficult to deal with the no burp/no vomiting? If you can't burp, is that painful? The waves of nausea a result of the surgery? Did they say why that happens?
Posted 3/8/2017 5:07 PM (GMT 0)
Law:

I did find relief with Protonix, but I also had a large hernia. Funny thing, after surgery I can't stand the smell of coffee, although I was never more than a 1 cup a day drinker. I do drink tea, however. I'm not sure about bile reflux, as that was never an issue for me. What other tests have you had other than EGDs and the 2006 pH monitoring? Have you had that repeated? I've also had gastritis in the past (prior to surgery), but I was able to overcome it. Gastritis can be caused by overuse of NSAIDs and stress. Even if you develop Barretts, with medication only a very small percentage advance to cancer. As far as your GI doctor saying that all patients are doing well that he referred to surgery - I'd take that with a grain of salt. I'm glad that my surgeon was very upfront about what my recovery would be like and what I would experience going forward. I hear so many times from people saying that they had no idea how difficult recovery would be and how their physical condition was during that time. I'm glad that you are getting a second opinion. Honestly, I wouldn't be satisfied with my GI doctor saying to "give it a try." I developed asthma and had bronchitis 5 times in one year, I was constantly needing breathing treatments. I went to a pulmonary specialist and he did some testing, and he was the one that discovered that my GERD was causing the lung issues. He sent me to surgeon who specialized in the Nissen done via robotics. I no longer use inhalers, and don't take any medication on a daily basis (other than the nausea medicine, occasionally). There is no set criteria for the surgery, other than the outcome of further testing. I won't lie, it's a major surgery and I wouldn't have it done unless there was a good chance of a positive outcome. It is risky, and you really need to have a good surgeon who does these surgeries on a regular basis, not just someone who can perform the surgery for you. I'm completely recovered, no burping is difficult - but I don't do carbonated beverages at all, and take anti-gas medication. The nausea is directly related to the surgery, not sure why, but a lot of people suffer with it and I keep a prescription of Zofran with me at all times and that helps. My big concern is flu season, I'm very good about getting a flu shot and staying away from people who are sick.

One other thing, I'm sure that you had extensive gallbladder testing done - correct?

Good luck, and feel free to ask any other questions. We aren't medical professionals on this forum, but we can tell you what our experiences have been.
Posted 3/8/2017 6:03 PM (GMT 0)
Hi law, i'd rather be in recovery for 6 months than taking ppi's for years and suffering daily, and/or eventually get cancer! after 17 years...think positive and move ahead!
Posted 3/8/2017 8:45 PM (GMT 0)
bythesea - thank for your positive energy! I am going for the second opinion and we'll see. He may require more testing for me than the first surgeon I saw. Are you going to go for more testing? Will they do surgery on you having had symptoms for a short time?

SharonZ - I have had many EGD's with the last one being 2014, the pH and manometry 06, and stomach emptying 2016. Stomach emptying I had many years ago in 05 and both times it showed normal. I have a feeling the second surgeon may recommend a Bravo test and an updated EGD which is OK by me. They are going to find the same thing IMO. The first surgeon I saw is very experienced and has done hundreds if not more of these surgeries. He claims 95% success and on pain scale of 1-10, patients are reporting a 3. He said no further testing needed for me to go ahead with it. The GI doctor who said to give it try probably said that because I have been suffering for all these years and doesn't know what else to recommend for me. He also said this is not considered major surgery like it used to be. I know anyone who has had this would disagree! They are messing with your stomach after all! I think my only option sadly is surgery because medication doesn't help so what else is there? I've had no gall bladder checks because there has been no pain or other symptoms. The amount of bile the doctor sees is normal and no signs of gall bladder disease. I'm going to see what the second surgeon says and probably go from there. I'm secretly hoping for another promising, less invasive surgical option. Thank you for sharing about your experiences. It is so helpful.
Posted 3/8/2017 9:27 PM (GMT 0)
yes...going to see my doctor in a week. i've had symptoms for a couple of years...but it was silent GERD. I felt pressure in my chest, thought it was anxiety...and always tired. But...i was in a very stressful situation for five years...then pop! the pain went into full GERD pain. i have had a sonogram, the camera test down the throad. i'm asking for the barium test, blood test, read that i should to check my gallbladder, and hernia. i have to find the source of this pain, but after all ive read...it sounds like the Sphincter valve popped open!
anyway...whatever it is...if surgery will help correct it, and get me OFF ppi's...then for sure i'm going to do the surgery as soon as possible!! im not afraid...im looking for a better quality of life...and im willing to take that chance and move forward. keep me posted...and i'll do the same!
Posted 3/9/2017 1:27 PM (GMT 0)
Law:

Personally, I would steer clear of a surgeon who wouldn't insist on doing further testing, including a new manometry test to determine your current swallowing function, EGD and barium swallow. The manometry would determine what type of wrap you would need, or could totally rule you out for surgery. Your testing is outdated (pH monitoring is over 10 years old), and at the very least should be repeated. Being through the surgery, I can't honestly tell you that I only experienced a 3 on the pain level. Keep in mind that even with a successful surgery, some people still experience reflux and need to continue on medication. For me, this was a major surgery and I wouldn't refer to it as anything less. I experienced a lot of success with strict diet, exercise, and even losing a few pounds helps, but I didn't suffer with bile reflux. You're making the right decision by seeking a second opinion, and believe me you will feel better about making an educated decision.

Sharon
Posted 3/9/2017 4:31 PM (GMT 0)
hi law, oh yes...i am going to take a battery of tests. i would not not have surgery unless i knew exactly what was causing all the burning. i've been on a very strict diet for the last month...and have pureed most of my food during the day! i puree all my veggies and ground turkey add chicken broth and milk and makes the most delicious soups. also make protein shakes out of fruit. most of the burning sensations have subsided and i actually feel pretty good during the day. my fear is mostly taking these ppi's for any length of time! i read that they are very damaging to your health! i've read NOTHING good about these medications. but yes, everything will be tested before i make any decisions, but, if i need surgery to have a better life...for sure i'm going for it! just read a book by Jaime Koufman & Jordan Stern both MD's, called Dropping Acid The Reflux Diet Cookbook & Cure. it was very informative. ok...keep you posted. thanks, irene
Posted 3/10/2017 12:40 AM (GMT 0)
hi law, just found this info online!!

Outcomes

The outcomes of laparoscopic hernia repair versus open hernia repair support laparoscopic hernia repair as the method of choice. Outcomes from having laparoscopic hernia repair are:[13]
A lower morbidity rate
Low mortality rate
Quarter inch to half an inch incisions that result in three small scars
A laparoscopic hiatial hernia repair results in a hospital stay of approximately 36 to 48 hours after the procedure has been performed
Benefits

Laparoscopic hernia repair has several benefits compared to performing open hernia repairs.
Benefits are:
Three small scars at the point of incision compared to one large scar
Reduced post-operative pain
Shorter recovery time
Shorter hospital stay
Posted 3/16/2017 4:06 AM (GMT 0)
hi law, met with my dr today and was very disappointed. he seems to think it's fine to stay on ppi's and the benefits outweigh the negative. i've only been on them for 2 1/2 mo. but i am going to reduce them from 40 mgs to 20 mgs. and hopefully in time...get on over the counter...but, who knows???? my doctor did not want to give me any other tests!! i had a sonogram and the camera in the throat test he seemed to think that was enough!? he said the only time he would suggest surgery is because medication is not working...and he was firm. i asked for other tests and he was not going to refer me. anyway...i'll cut down and see what happens. does feel like a death sentence of my life though! ugh...

what about you? what's up?
Posted 3/16/2017 10:47 PM (GMT 0)
SharonZ - Thank you. I am going tomorrow for a second opinion from a surgeon. I agree that an updated test may be in order, however, I do not think what I need will change. So it may be a waste of money for them to restest since meds don't help and I have a long history. Without some kind of procedure, I will be forced to live with heartburn for the rest of my life.

bythesea - Irene...thank you for the information on the hernia surgery! I don't think they repair hernias unless they are large. Mine is small. But if I get the Nissen, they will automatically fix the hernia. So for me, PPI's used to work most of the time. I went 10+ years on them. But every now and then, I would have the worst flare and it would take weeks to calm it down. My EGD's always show irritation despite being on high doses of PPI medications. Then, just last year, I was having severe burning while on them and decided to go off because it didn't make sense to stay on. It was hell going off. Things like Zantac are all short lived and Tums do nothing but give me more heartburn. So I told my GI doctor that was I going to fight by removing gluten from my diet and watching everything that went into my mouth. I do that pretty much to a T and STILL have heartburn. The PPI's caused all kinds of problems for me particularly with iron. And I just had a bone density test that shows I'm borderline osteoporosis. So..medication for me is not an option. I'm either going to have to live with it (including the heartburn pain) and pray I don't get cancer, OR find some kind of procedure that will help me at least stop the acids from burning and damaging my esophagus. So, tomorrow I'm seeing the second surgeon. But here is another interesting thing. I live near a university doing clinical trials on Endostim. They have contacted me to attend an informational meeting on this and so if I am a candidate, this may be another route I pursue. about you though, I hear you and I feel for you because the medication stinks. If you can get down to the smallest dose possible and modify your diet to make it work, it is a good solution. But for me, low doses do nothing and neither does diet change. You can always do research for surgeons who perform the surgery and get consults. This surgery is becoming somewhat elective IMO, but my surgeon did say they do not just let anyone have it and that I am a candidate based on history. I wish you all the best. This is NOT fun, but I know a lot of people can manage it with diet and low doses of meds. I wish I could manage it with diet but I tried and can't get rid of it.

Post Edited (law) : 3/16/2017 6:10:04 PM (GMT-6)

Posted 3/16/2017 11:32 PM (GMT 0)
hi law, funny you mentioned that severe burning sensation that is how mine started or was aware that something was reeeaaallly wrong!! the burning was so severe for seven weeks that i thought i was dying and couldn't get in to see a gastro doctor. i filled out all my paperwork in the event of my death!! of course, after 3 or 4 weeks of the ppi's that horrendous burning stopped along with a very stict diet, but so did my living situation that caused me all the stress!! i totally get it...that what you have forward to is CANCER!! my doctor told me that everyone has a little gas!!! i was left speechless, and will look for another doctor. that clinical trial sounds very good...of course attend the lecture and see what you can learn!!! it sounds that you live in hell and have been for many years...i hope that you find a surgeon that will help you!!! please keep me posted. thanks... irene
Posted 3/16/2017 11:42 PM (GMT 0)
hi law, i also went on antidepressants. i am on zoloft 50mg's. i feel like these have helped me a lot...they are for stress and anxiety...and i had that pressure in my gut! this brand has been around for years...know several people who have used them when needed and everyone had nothing to say but how great they are and no side effects. anyway...just an afterthought.
Posted 3/17/2017 12:19 AM (GMT 0)
Hi bythesea! Thanks for telling me more about your situation. You do understand that burning for sure! I'm so sorry you had to deal with that. I think your doctor should definitely do a repeat EGD. When did you have yours done? Recently right? Very interesting about Zoloft. My GI doctor wanted me on a very small dose of amitrpytyline (spell?) a long time ago but I refused it because I don't really care for that class of medication. But not too long ago, I was put on Lexapro for a different problem and stayed on that for about 1.5 years. I felt it did help the GERD somewhat. I went off because it wasn't helping my other issues (I built a tolerance and did not want to increase it) and so decided to get off. I had a really hard time getting off it though. I experienced dizziness even though I tapered. I really do think those kind of meds can help acid reflux and many other thing, but for me, I'm not sure it would work long term. I hope your next doctor is more helpful to you!!! Lori
Posted 3/17/2017 12:23 AM (GMT 0)
bythesea - I meant to say your doctor sounds a bit heartless, but I think most GI doctors do this because surgery really is a last resort. My doctor only just finally gave me the referral after all these years of suffering. And I was a little miffed when he said the 8 of his patients who had the surgery were all ELECTIVE! I was like what????
Posted 3/17/2017 12:33 AM (GMT 0)
i understand what you are saying ... because i am new in the game! i'm doing everything i can to learn more about this problem and will find a gastro doctor that cares. an example...that your doctor told you after all these years of suffering, surgery is elective???? that is craaaazzzy! i'm not jumping into surgery...but it sounds good to me. i can live with this now...but i don't want to do anything anymore...and not motivated at all...always tired. i feel like i've already lost my life as i knew it. if i am just living knowing this will get continually worse and maybe lead to cancer...i feel for me...there is no point in living. anyway...antidepressants helping me with this doom and gloom attitude also. thanks!
Posted 3/17/2017 2:40 AM (GMT 0)
I believe they will find better, less invasive ways to help tighten the sphincter. We are in better shape than so many people. My doctor told me despite my chronic problem, there are so many worse off and he is right. I hope you cheer up. It brings me down but I tell myself it could be so much worse at this point anyway. I meant to tell you that a tablespoon of low fat ice cream sometimes calms things down for me after a meal.
Posted 3/17/2017 4:11 PM (GMT 0)
I had my second consult with a different doctor who said the same thing as the first which is I am a candidate and that this surgery would likely help me. He went into specifics like the first doctor about how it is done. The first doctor said his patients can't burp or vomit, where this guy said all his patients can burp but not vomit. He mentioned that some might have difficulty swallowing (he commented that his goal of course is for this not to happen) and if so, he says any meats or dry things would need to be moistened before going down. He suspects my hernia is larger than reported. I want to do this yet I am scared!
Posted 3/17/2017 6:58 PM (GMT 0)
hi law, maybe you should read reviews of people who have had it done! seems that there were a lot of happy endings! you wouldn't be human if you weren't scared...but, maybe the good outweighs that bad here. sounds like you have been suffering a long time...is it worth it? a little discomfort mite be better...and others have said they wish they would have done it long ago!!! please keep posting. irene
Posted 3/17/2017 7:17 PM (GMT 0)
Hi Irene, I have been reading and see more problems than positive? I know a lot of positives aren't even on the boards because they are off living life happily! I think I'm going to go ahead with it. I would like to see very recent accounts honestly - those who have just had surery within the last few months. I think here are a few on the boards, but more would be great. thanks..If I have surgery it will not be until June after our vacation....Lori
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