Hi everyone, I'm trying to find out as much information as possible on having fundoplication surgery reversed.
I had this surgery not so long ago. Without going into too much detail a series of events and mistakes made by myself and others led me to believe that having this surgery would be a good idea. My reflux wasn't that bad at all really and the medication was working well.I had a small sliding Hiatal Hernia so I still had occasional reflux on the medication but it was more like a gas with no acids or liquids really and all of my other symptoms had gone despite not taking my diet and lifestyle changes that seriously.
Now I'm sure this surgery helps a lot of people with severe reflux that cannot be controlled well with medication and lifestyle changes but I have to say that in my case all of the complications or side effects associated with the procedure are 50 times worse and harder to live with that what the surgeon described to me himself after reviewing my 24 hr PH study as mild reflux.
I'm very keen to have this operation reversed and would love to here from anyone anywhere who has managed to have a full reversal. I would love to know if the bloating and abdominal pain has gone or improved. if you can burp freely whenever you need to ( something I totally underestimated the importance of in my case ), if your bowels have improved and if your reflux returned any worse than before having the operation.
Also I live in Australia, so if anyone down under has had this operation reversed or is looking into it please help me out with any information you may have.
I feel this operation is being marketed by some practitioners as a convenient thing to have done to avoid taking medication each day. Something I have learnt the hard way and wish someone had said to me is this operation is a big deal and the recovery time can be very long. Take your diet and lifestyle changes very seriously and only consider surgery if your reflux is bad and when you have tried every other option available with no success.
I live in South Australia now (have been here for 8 months) and had my Nissen Fund. surgery done 4 weeks ago by Prof. Peter Devitt, in Burnside, Adelaide.
Long story short: During 2006 I was diagnosed with having GERD, erosive gastritis and had 5cm Barret's Esophagus and I started taking PPI's and even though I was on 60-80mg Nexium my Barret's progressed to 10cm, so I had the Nissen Fund. to prevent further damage. But I had extensive tests done and consulted 2 Surgeons in the last 4 months and they adviced me to get the op.
I had some typical GERD symptoms - chest pains, burps, back pain - and I had a lot of ENT issues - also during the last 2 years I had 24hr Impedance study/PH study/Manomatric study done and tests indicated I needed the surgery.
My point is: I would not advice you to have the Nissen reversed as you do have a Hiatal Hernia and they fix that when they do the wrap. Even if your initial symptoms were not severe and tests said GERD was not severe - if they undo the wrap, your Hiatal Hernia could become bigger and then you need the surgery in anyway to fix the Hernia. ALSO: Longstanding GERD can cause Barret's in some people and that is a pre-cancerous growth and turns into cancer in 5% of patients - but it is permanent damage and you need lifelong surveillance once you have it. The type of cancer you get from this is adenocarcinoma and mostly bad news.
Now that I've had the operation, I also have bowel issues, bloating and would actually diagnose it is IBS (Irritable bowel syndrome) due to the fact that we can no longer burp we have more gas in our bowels/intestines and prone to developing IBS - unfortunately. I am still early in my recovery (4 weeks) and hopefully it will improve. But IBS is much better than risking cancer or ulcers, strictures in esophagus - that is also complication of GERD and Hiatal Hernia makes GERD so much worse.
Having a reversal seems like a difficult procedure. From what I read and researched before agreeing to having a NF operation, how tight the wrap is done is critical. I wonder if the wrap can be relieved.
When did you have the procedure? I was told that I shouldn't eat solid food for six weeks after the operation, and to expect some very uncomfortable bowels for about that period of time. I also was told that burping would be difficult, and to expect problems with loose bowels and frankly, passing gas. After two months, gas and loose bowel problems stopped and I started mixing into my diet solid foods, and the results have been wonderful. Tonight we had dinner at an Italian restaurant, something I couldn't have done before the surgery.
Smiley and I both had strong motivation to have the procedure, we had a pre-cancerous situations. I had a barium test, an endoscopy, a test to determine my acid level and also a test to determine how well I could swallow, plus a test to determine the damage I had to my vocal chords.
I've had prostate, heart bypass, and bowel blockage surgery as well as a NF surgery, and will tell you the recovery from NF surgery was the most difficult for me, but eventually the most rewarding.
Again, when did you have the surgery? Also, were you given a dietary plan?
Thanks for your input. I take it you were putting up with the effects of severe GERD for around 6 years before deciding to go ahead with the operation. I can certainly understand from your account why you have had it done and sincerely wish you a speedy GERD free recovery.
If my understanding is correct and it might not be, you can actually just have the Hiatal Hernia repaired without having to do a fundoplication as part of the repair process for the hernia, like if the hernia was your only problem. A high percentage of people having fundoplication surgery do have Hiatal Hernias so they fix them at the same time as they do contribute to GERD symptoms by not allowing the LES to function as well as it should or could.
I did read elsewhere on the internet about a person that had mild GERD, had the operation, suffered from complications and did have it reversed. He had a Hiatal Hernia as well and the surgeon that performed the reversal reinforced the Hernia area with extra stitching.
From what I have read there is a chance that the Hiatal hernia may come back anyway but I plan on doing everything in my power to prevent that. I can actually remember when I got the Hernia, at the time I was doing heavy labor work within the building trade, 2 of us lifting timbers and roof trusses that should have been craned into position. Anyway one day I felt a tear and a pop in my chest area with some pain in my neck. Never got it checked out at the time but I'm sure that's when it happened. My hernia was small the doctor said by the way.
I just think that this surgery(Fundoplication) wasn't necessary at this point in time for myself and I'm really finding the complications very disturbing, more disturbing than my GERD was.
I have read the same about the reversal being hard but have also read that when they do a second fundoplication surgery to correct a failed first fundoplication one of the first steps involves undoing the wrap and retuning things to the way they were before starting again from scratch. Again don't know how true this is as I have only seen it online.
To answer your questions I am only 7 weeks out from my operation. I did get a meal guide and have followed it carefully. My partner has been present at all of my appointments before and after the surgery jut in case I missed something. We both feel that we haven't been told enough info on this whole process. In relation to my bowels we were told that I might become more regular as a result of having the operation but that was it, nothing about IBS like bowels.
I was told at a followup appointment that my wrap is too tight, I feel a tightness and pulling sensation in my throat. I also feel the pulling when I pick something up with a bit of weight as well - uncomfortable feeling.
4 weeks after surgery I started feeling very lightheaded, nauseous and week/ sick, almost crashed my car on the way to the supermarket because I was so out of it. My partner and myself noticed that my completion was very pale as well. When I felt really nauseous she could tell as I became really pale. This would last most of the day, I would start to feel more normal around 3 - 4 in the afternoon. I have had my bloods tested by my local GP but they seem fine, he was checking for internal bleeding. My blood pressure was down a tiny bit. The nausea has improved somewhat, still feel it in the mornings but tends to get better earlier in the day.
Without getting too gross my bowel habits are ranging from some fairly normal movements, a lot of diarrhea and some full on IBS with bad abdominal pain while sitting on the toilet dry reaching and feeling as if I'm going to pass out any second.
I know that I have gone into this operation without knowing nearly enough information to feel comfortable about the situation I find myself in now. I suppose I want to learn all I can about having this reversed as if things don't improve I still may have another option.
It does sound to me that you weren't given enough information prior to your surgery, and it sounds like indeed the wrap might be too tight.
Keep in mind, I'm just a patient, not a doctor, but believe if surgery was performed to make the wrap a bit looser, it would be far less invasive than to try to put things back as they were. Also, your surgery was only seven weeks ago, and I think you are just at the point where you should be feeling better. As I mentioned in my earlier post, the NF surgery was for me a more difficult recovery than open heart surgery. I really paid when I ate solid foods for at least two months.
Foods that worked for me included Instant Breakfast, mashed potatoes, soft noodles. Here's a meal that really worked for me at your stage of recovery: Drain the liquid from chicken noodle soup, add some ground-up crackers, sprinkle in a bit of Romano cheese, microwave about a minute or so. You get protein and carbs, plus a bit of dairy that can aid digestion. Just don't rush into solid food!
The wrap will loosen up on it's own, at least mine did a little. I can and do burb now, I couldn't do so right after the procedure. If I can offer anything, I'd say I wasn't far from where you were at your stage of recovery, and now can eat about anything I want without fear of GERD, just not as much.
I really think you are at the stage that you will start feeling better. Just don't rush it, and please, don't rush into another surgery. I'm betting you will start recovering soon.
Definitely wont rush into another surgery again in my lifetime - lesson leant.
I have an appointment with the surgeon in 3 weeks to talk all this through with him. I have been in contact with the clinic on the phone, talked about the pulling, tightness and lump sensation in my throat. After the surgery on my first followup appointment I still had a lot of GERD symptoms, the surgeon wasn't that concerned, but he did say that my original symptoms were rather unique or not the norm and suggested that maybe something other that GERD was causing them. My local GP ended up putting me on Nexium for a week after that appointment and the acid taste and stinking saliva or smelly gas in my mouth has pretty much gone. Still feel as if something is going on with my lungs or breathing from time to time and my
throat is still driving me nuts. The clinic said the other day maybe my throat complaints are from something else ? Think I'm going to go back to my local GP and make sure that I don't have something else going on in my throat - thyroid problem or something ?
You said that you can burp, are they big burps ? I can do tiny tiny little burps a few seconds after having a sip of drink, I think it's just coming from above the wrap and not actually relieving any of the pressure in my stomach. Last week though I started getting pressure and pain around the wrap site, it built up over say 10 - 15 seconds then a really big burp came up from my stomach, then nothing for 10 seconds and it happened another 2 times. I was not in control of it at all.
Just curios did your surgeon or doctors ask you if you had any existing digestive or bowel problems ( IBS ) while being assessed for the surgery. I have recently found out that if you already have digestive / bowel problems that this surgery should be avoided as it can make things worse. As mentioned previously I was only told that this operation may make me more regular, I was not asked about pre existing bowel and digestive problems and didn't know it was a consideration. I do have pre existing digestive and bowel problems, it runs in the family, my sister is the same and my father was as well. Would have been nice to know this or be asked the questions before having the operation.
Forgive me for being pessimistic about this operation but I feel as if this whole process has been done backwards, shouldn't they be completely sure of what's causing your symptoms before you have surgery?
Shouldn't a person be made fully aware of any and all pre existing medical issues that may effect the outcome of the surgery.
If you see a Surgeon regarding getting your Nissen re-done, I would suggest that you look into getting a Partial Fundoplication. Studies shows that this Fundo is better option w.r.t. IBS symptoms afterwards.
If you are in SA I can recommend very good GI and Surgeon to you.
I'm in Victoria. I have a followup appointment with my surgeon in 2 weeks. I don't really know how willing he will be to help me out but I guess I will now where I stand in another 2 weeks time. If things don't go well I may just get your surgeon and GI's details for some advice via email or something. I now have a referral to a GI and an ENF doc. My local GP had some bloods done and is looking into thyroid problems and they came back borderline on the low side, I have to have that done again in another 6 weeks to double check that the results haven't been thrown off by the surgery. He said that can happen sometimes ?
My GP seems to think that maybe my throat complaints are just in my head brought on by anxiety I swear that's not the case. Sometimes a bubble of air will get caught exactly were I feel the problem is. It won't come up and I end up talking funny for a while until it frees itself.
How is your healing coming along, hope your making progress. Are you on soft foods now ?
All the best with your consult in 2 weeks! Maybe you should ask the Surgeon to arrange an Endoscopy and possibly Manomatric study to see the function of your LES and esophagus motility?
I am now about 6 weeks post-op and I am eating small pieces of steak, chicken and anything I want. I just eat very slowly, chew very well and eat small portions. I can even tolerate coffee and chocolates again! I have lost about 7kg's in the past month and now I am borderline-underweight, so I am trying to get myself into good shape. But so far I am happy that I had the operation.
After the Nissen Fundo it is almost impossible to "burp", but a few minutes after a meal I can feel an air-like/bubble sensation coming up my throat and I am just glad that it didn't come out the other end :)
I have an upcoming Endoscopy on the 17th of April and on the 18th I am going to see an ENT. My throat and voice was my biggest problem and that has not improved and I am afraid that I might have nodules on my larynx/throat due to longstanding GERD issues. I started working at our local TAFE as a Microsoft Instructor and I need my voice to hold after a full day at work!
Looking forward to hear from you again! best wishes,
Thanks for the suggestions, I will bring it up with him. My burping is very slightly better, occasionally while eating or drinking I can do a small burp if I'm not really bloated. It's strange though the more full of gas my stomach gets the less capable I am of burping to get rid of it ? Sorry to here your still having throat and voice issues despite the surgery.
After my operation I had 2 days with no GERD issues then my voice became croaky again and some of my other symptoms came back as well - acid taste in mouth & really smelly saliva / gas in mouth and nose from time to time. I had a followup with the surgeon about 7 days after the operation and brought it up with him and he was adamant that I could not have any acid in my mouth and if I had any symptoms that they must have nothing to do with GERD.
The second followup went the same, feel like I'm getting the brush off big time so that's why I'm not confident he will offer me any help this next visit. My GP put me on nexium for 2 weeks but took me off them after 1 week as I was having so much trouble with bowels and nausea beforehand, but it definitely helped with the acid in my mouth.
I've been surfing the net looking for more info on all of this, found some useful info and sites. I'm thinking of looking into diet more, there are some interesting books and sites out there. If you want me to post some links I will - if that's not against the forum rules ?
I still really want this wrap taken down because of the bloating, gas,not being able to burp, IBS and general discomfort, but I don't think my surgeon will even listen to me going off my last visits.
Hope your ENT doc gives your the all clear, are you still getting acid in your mouth like I am ? If you don't get acid in your mouth and your GERD was bad before the operation I have read that it may take a good while for everything to heal properly so maybe it just needs more time ?
For the 6 days that I was in Hospital, I was on a liquid and ice/water diet and then I also felt that my throat was feeling better! I also need to go and have a look at my overall diet :)
It is always advisable to do dietary and lifestyle changes first and even medication, before surgery. Let's see if the burping and gas/IBS-issues improves with time - "Flycaster" said that recovery from NF can take up to 2 years!
I have done some research on the anatomy of the throat and I think I am on to something: the "lump" that I feel in my throat is the Epiglottis and I am sure it gets swollen during the day that is why my throat becomes uncomfortable and I get voice issues. Maybe it is something in my diet that is causing this! then I would not need nodule-surgery or something! just need to find out why it swells up.
Hearing your story and how much it sounds like my story just makes me tear up. I too, was told that I had a Hiatal Hernia and was duped into having the Nissan Fundoplication surgery, only to now have increased problems from the surgery! The surgeon wrapped my esophagus too tightly also, and now I have to watch what I eat even more carefully, for instance, if I eat hard breads - it will "stick" in my throat and cause me to have nausea and feel the need to vomit to get rid of it. I also get constant "burping" as a way that I guess my body is trying to move the food on down into my stomach. I am plagued with constipation, and also while I am on the toilet, my body will get nauseous and cause me to start dry-heaving (vomiting). I have already had 3 procedures of "dilation" to stretch my esophagus out because it was wrapped too tightly, but it needs to be done about once each year, so I have decided just to watch what I eat and not have it done anymore! Just have to suffer with the condition as it is, because I do not want to have anymore procedures!
I read your post and really have sympathy for you. I have friend who needed another Nissen Fundo after her 1st Surgeon also wrapped it to tightly (stenosis) and she is now 4 months post-op and doing great!
90% of the Nissen ops are a success, 1st time around. Unfortunately there are still Surgeons out there that do the wrap to tight and those patients will need a re-done.
So so sorry you have been one of the unlucky ones in regard to this operation . How long ago did you have the surgery done ? Was your reflux very bad to begin with ? I feel there needs to be some legislation put in place to make sure that the correct testing and procedures are followed before this surgery is considered. There are a lot of stories online and unfortunately for everyone some surgeons don't seem do all of the testing before operating.
I haven't visited or posted on this or other reflux websites for a while now. I found a new surgeon that basically confirmed to me that the problems I have been having are indeed due to my surgery and in fact can be quite common problems with this surgery if your unlucky - unlike the surgeon that did my operation who insisted that all of the problems I was having were nothing to do with this surgery and must be because of somthing new !
My symptoms have changes somewhat, my bowels have settled down, my main problems are the nausea, bloating and feeling faint throughout the day. My new surgeon booked me in for a gastric emptying study right away - it showed I have slow gastric emptying and motility problems. I was put on medication to speed up my gastric emptying, it helped greatly with the bloating and nausea but it can have some bad side effects - in my case after some time making me very very sleepy and giving me depression. I have been off the medication for a few weeks now and mentally I feel good but the nausea / sickness is back along with some bloating.
I feel pretty sick every morning, sometimes it improves after a couple of hours and other times it lasts half to most of the day before improving. I still get spells of it throughout the rest of the day but its not constant. I go to see my new surgeon again soon to see what else we can try.
My nausea and bloating is being caused by the slow gastric emptying that is probibly caused by vagal nerve damage or over stimulation. My stomach doesn't move the food through my system quick enough anymore, it sits in my stomach and ferments causing the bloating and nausea. I have been told that things might improve somewhat given more time. Apparently the vagal nerve runs through the wrap area and bloating and scar tissue can over stimulate the nerve causing you to feel faint etc ?
Some things I have found out the hard way, if your not getting any answers from you current surgeon take all of your test results and find someone that is interested in helping, this is hard I know as a lot of surgeons don't want to get involved in another surgeons mistakes.
Have you had a gastric emptying study done maybe your nausea has something to do with slow emptying also ? I feel for you, when things go wrong with this operation it can be very hard to to find out what is going on and the correct path forward.
Keep pushing for the answers, I know in my case I was just so pleased to be told by someone exactly what was going on, after being fed so many lies from the surgeon that did my surgery.
From the surgeon side I feel compelled to make a few comments. There is not one form of fundoplication but several different ways of doing the procedure. The goal is to restore the normal anatomy of the esophagogastric junction. More specifically, it is the angle of His that is restored. The Nissen fundoplication is the most popular fundoplication procedure done today and represents a 360 degree wrap. The specifics of how this is done was worked out 30 years ago by Dr DeMeester who performed huge numbers of these procedures and applied several small variations in how tight to make the wrap, how long to make the wrap, etc. The way the procedure is done today is the best compromise between these factors. I say compromise because roughly 5% of patients have an undesirable result. These are evenly divided between those where it works too well or not well enough. If it works too well, the valve is too competent and patients are unable to burp and expel swallowed air. The problem is that if you change the variables on the operation you can reduce either the too good or the not good enough group but you will increase the other hence the best compromise. It is not that the surgeon "made it too tight" as was stated in an earlier post. When this is the case, a revision is typically done to take down the 360 degree wrap and convert the Nissen fundoplication to what is called a Toupet procedure which is a 270 degree wrap. This is also used in patients with altered esophageal motility.
My other comment is to the original post. If the reflux was well controlled medically there wouldn't be an indication for surgery. Why did they recommend surgery in the first place?
I am fully recovered from the Nissen Fundo and all the bloatedness and IBS symptoms that I had earlier have resolved and I feel great :)
I just still have the Chricopharengeal muscle problem (damage from severe longstanding GERD) and still waiting for treatment for that (on waiting list for Botillium injection into the muscle) and it is not a longterm solution and ultimately I'll have to get a Myotomy in about 12 months or so... not looking forward to that as I've had a neck-fusion last year (C5,6,7) and they have to enter the same site to do the Myotomy!!!
Sorry to hear that you still have problems. As I've said earlier: I really think you should seek the opinion of a new Surgeon and consider the "Topet/Partial Fundoplication" as the Doctor/Expert here has suggested.
Thinking of you and looking out for your updated posts :)
DO NOT HAVE THIS SURGERY UNLESS IT IS LIFE OR DEATH; BUT IT CAN BE TAKEN DOWN:
My name's Jason and I had this operation 9 years ago. What you are talking about is not called a reversal, it's called a "take-down". It can be done.
You can be permanently disabled from your first fundoplication like me. Performing a laproscopic or open fundoplication inherently puts your Vagus Nerve at risk of being severed, meaning even in the hands of a surgeon with thousands of operations it COULD happen.
If it does, you will either have a stomach that is paralyzed or diarehha, gas-bloat, nausea, incontinence for life. Vagus Nerve tissue that is severed CAN"T be reconstructed; like a spional cord injury. So, whatever's gone is gone, probably for good. (Think of Christopher Reeves in his wheel-chair.)
The drugs that treat this are getting better by the year. There are also new proceedures being developed to treat this which are getting better; including a transoral incisionless fundoplication. If you are considering having this operation you NEED to talk to your doctor and your surgeon about what will happen if they inadvertantly sever your Vagus Nerve. If they say that won't happen, FIRE THEM because in a malpractice case the expert witnesses will likely say otherwise.
The ONLY people who should have this operation are people who are nearing a life-or-death point. Living the way I did for the past decade is no way to live. My life was devastated by this operation. I'm on disability.
Worse, my fundoplication is breaking down after 10 years. Eventually we may have to surgically alter it; which for me would be a "take down" as I won't do another. That puts me at huge risk because one side of my Vagus Nerve still works. If we sever it I then will live being fed intravenously with a i.v. bag behind me... forever.
Also, an earlier post is correct. There are surgeons I've read from who write that a fundoplication should be "taken-down" prior to revision because it is the best way to avoid paving over unknown structural problems from the first fundoplication.
I am aware of a few patients in Europe who had their fundoplications taken down and did well. You will struggle to find surgeons in America who will do it because they're likely afraid they'll get sued.
So, unless you already have a Barrett's patch my advice as a survivor of this operation is DON'T do it. If you think the pain of heartburn is insufferable you have NO IDEA what evil could lie in wait when one of these fundoplications goes wrong; which it frequently does. If you don't have the operation, you thus won't need a take-down.
Dying from esophogeal cancer caused by long-term GERD is awful; but waking up in your own excrement, pelvic floor dysfunction, diarreah, bacterial c. diff infection, permanent gas-bloat, problems swallowing for me are worse. I write this because I want nobody else to suffer my fate.
I have read your post and I understand where you are coming from, but I had a very successful Nissen Fundo done earlier this year and now I don't need to worry about my Barret's so much. I'll go for surveillance endoscopies 1-2 years apart, but my symptoms have improved and I don't have to take 80mg Nexium a day since I've had the operation.
I had a lot of tests done and seen a lot of Specialists before I agreed to the operation and that definitely makes a big difference in the outcome.
As fundoplicationshurt reminds us, no surgery is without risk. Cutting the Vagus nerve was one of my biggest worries and I certainly asked the surgeon prior to engaging him to do my Nissen Fundo work if he had any history about cutting the Vagus Nerve. He had done over 100 procedures with no Vagus Nerve issues, and like Smiley, it was a hugely successful procedure. That said, when I had another emergency surgery to repair a bowel blockage, that possibility was presented to me prior to the surgery. When I had a pacemaker inserted I was alerted that the leads from the pacer into the heart sometimes creates goofy symptoms. Prior to my heart bypass surgery, the Vagus Nerve issue came up as a possible complication.
I feel it is a risk/reward situation when we agree to invasive surgeries. In my case, the presence of a Barrett's Esophagus diagnosed trumped the less that 100 to 1 chance of cutting the Vagus nerve. Studies show over 90% of patients who have the NF procedure consider the procedure successful, but certainly, any time we agree to either holistic or invasive procedures, we make a choice and have to accept the consequences.
I agree with fundoplicationshurt completely, there is a risk... but developing an active cancer because of Barrett's pre-cancer tipped the balance for me to having the NF, and in my case it was a good choice.
I have suffered so much emotional stress from my first surgery and the doc trying to tell me I was ok. I dealt with it for almost a year before I made a 7 hour trip to Cleveland Clinic to see a Dr. Thomas Rice who in his words said my surgery was ONE WEIRD MESS!! He took it all down and put it back and said it was so messed up most surgeons would have just taken it out. I was stuck on a feeding tube for 10 weeks , have been through 3 major stretch procedures and can finally get some foods down like oatmeal ,etc. However I lost 50 lbs and 35 inches, and still even when I get food down , it goes straight through. Nothing wrong with my colon so they think the first Doctor damaged my nerves during his messed up surgery and I may be stuck with that for life . I live off Ensure now to stay as well as I can but go back on Feb 4th for another evaluation from Dr. Rice to see if he can make it better or I live like I am as long as I can or stuck with a feeding tube for life. It stinks and the first doctor make it sound like a piece of cake. I can only say I wish I had went to Cleveland first, Dr. Rice told me this surgery should NEVER be done laposcopic!! It is way to major so how are these DR.s getting away with this??
I have suffered so much emotional stress from my first surgery July 2011 and the doc trying to tell me I was ok. I went back to him two weeks after the surgery and tried to tell him something was wrong. I dealt with it for almost a year before I made a 7 hour trip to Cleveland Clinic and had it taken down and put back in July 2012. The surgeon there in his own words said my surgery was ONE WEIRD MESS!! He said it was so messed up most surgeons would have just taken it out. I was stuck on a feeding tube for 10 weeks , have been through 3 major stretch procedures and can finally get some foods down like oatmeal ,etc. However I lost 50 lbs and 35 inches, and still even when I get food down , it goes straight through and I have no control of my bowels. Nothing wrong with my colon so they think the first Doctor damaged my nerves during his messed up surgery and I may be stuck with that for life . I live off Ensure now to stay as well as I can but go back on Feb 4th for another evaluation from my Cleveland doctor to see if he can make it better or I live like I am as long as I can or stuck with a feeding tube for life. It stinks and the first doctor make it sound like a piece of cake. I can only say I wish I had went to Cleveland first, I was told me this surgery should NEVER be done laposcopic!! It is way to major so how are these DR.s getting away with this??
Hello, my story is very similar yours. I had frequent heartburn (4yrs) and was diagnosed with Gerd. I took PPI's that worked well (when I took them) but it became worse and I had my Gastro Doc perform an Endoscope that revealed an 4-5 cm Hiatal hernia. He also performed an upper GI that confirmed that it was an "Sliding Hiatal hernia". He then performed an Esophageal manometry that revealed good esophageal pressures but the Sliding Hiatal hernia was causing a small sliding stomach like sack that was stuck in my chest cavity (when I laid down) that left my LES open that cause acid erosion. Once we had all the info we decided to have the Hiatai hernia repaired (without the mesh) and I was told that a 360 degree fundoplication was needed to stop further possible Hiatal hernias and that it would fix all my Gerd symptoms. I had the surgery In Jan 2013 and had the common side effects (no burping, no vomitting, IBS, gas and flatuation). At six weeks post op I started have extreme pain in the area of the fundoplication. It felt like I was being stabbed with a knife. I was doubled over and nothing would relieve my pain. I went to the emergency room and the performed a drink swallow test that revealed nothing. Then my Doc ordered a CT scan and I also requested an ultra sound of my liver and gallbladder area because the pain also radiated to my right side. The results where my gallbladder was extremely diseased (gallstones, sludge, lesions and ready to pop). He then performed emergency surgery to pull the gallbladder. I had eight more attacks (in a two week period) after surgery and discover my body was rejecting the fundoplication. I went to my surgeon and requested the removal (release) of the fundoplication and he performed the release surgery in march 2013. I AM 100% BETTER!!! It was the best thing that I ever did!!! I am feeling great and I believe that the fundoplication surgery was not needed but the Hiatal hernia repair & gallbladder was my problem all along. The fundoplication surgery is an out-dated procedure and should not be performed. Our natural body anatomy is the way God intended it to be and in my case my body rejected it. Trading one symptom (heartburn/Gerd) for six symptoms was worse!!! Please do your research first and ask question!!! Do not just take the word of your Doctor!!! Doctors PRACTICE medicine!!! The operative word here is PRACTICE!!! God Bless!!! Good Luck!!! Get it reversed ASAP!!!
Can I ask where in Victoria did you get yor NF done. I am booked for my operation next friday 10.05.13 and i am in Victoria and I have got to say I did feel reasonably comfortable about the choice to have the op but reading these posts and info on the net I am now feeling very anxious.
I really hope it gets better for you.
I have been on meds for 4 years and often wake up choking from the reflux and acid in my throat - meds have had no impact. I also have a h/hernia that will be fixed during operation but given the trust I have placed in my doctor, maybe I need to discuss a partial fundo (I was not aware of such a thing) which worries me given the talking about lack of information provided by doctors.
Maybe I am just getting worried because its so close but maybe I need more info, I just cant keep choking on my own body acid either. Wht to do???
First I would like to apologise for not for not keeping up to date with the posts on this site. The truth is I have been trying to put all of this behind me and carry on with my life, however going through it all like many others here have I feel obligated to let others know my opinion on this surgery and what I was and wasn't told by the surgeon before and after my operation.
First I would say, if your reflux is not severer, if it responds well to medication and diet changes don't even consider having the surgery, even if your doctor or surgeon recommends you do - why not have the surgery, here are some points my surgeon felt I didn't need to know when making my decision -
The surgery may not be permanent - It may only be effective for a number of years and here is a very important point that you may not be told - In order to do this surgery they destroy all of you bodies natural reflux barriers so when the lifespan of the operation is over your reflux may be worse than it was before having the surgery as your natural reflux barriers may no longer work. I think this is a very important point to consider especially if a person does not have severe reflux prior to surgery.
Next point - it is a major operation, I was told 2 - 3 week recovery prior to surgery by my surgeon, one month after surgery feeling very sick he started saying 6 weeks recovery - but he suspected that my recovery would take way longer. After months of feeling very sick and having all sorts of complications I lost faith in my surgeon and went to get a second opinion from another surgeon - this is when I started to learn of all the lies and crap I had been told before and after my operation by the surgeon that did my operation, here are some of them -
First up - my test results indicated I definitely did not need this surgery because my PH study score could not have been any lower.
Second - I was informed by the surgeon I was seeking a second opinion from that they tell there patients the recovery time is around 6 months and you can still be recovering at 12 months post surgery - I was told 2 - 3 weeks by my surgeon ?
Third - I had all sorts of complications after the surgery that my surgeon insisted were in no way connected with the operation an were new problems.
The complications were - bad nausea, vertigo / fainting feelings, extreme bloating & abdominal pain for hours, IBS type bowels, pulling tightness in my throat, the new surgeon informed me that they were indeed all caused by the surgery and ordered some tests to see what was going on. I had a gastric emptying study done and they found that I now have gastro paralysis and problems with food and liquid passing down my oesophagus.
It has been almost 16 months, I have more complications that impact on my quality of life now that mild reflux ever did although I have recovered to the point where I'm trying to get on with my life regardless because I can't turn back time and not have the surgery. The other point that the new surgeon made about having the wrap undone was It might lead to having severe reflux in the future as all of my natural reflux barriers were destroyed to make the wrap, I wanted my wrap undone but the new surgeon informed me that the problems I have now would not be fixed by undoing the wrap and doing more surgery might make things worse not better.
I hope BeFit1 was informed completely about the reversal maybe leading to bad reflux in the future - hope this never happens and you continue to do well. Like yourself my surgery was never needed and the test results proved this only the surgeon must have felt I didn't need to know any of this and wanted to do the surgery regardless, I know this may sound hard to believe but it is the truth and I must now live with the outcome.
I'm in the process of making complaints, so can't discuss all of this in a lot of detail online. My advice would be postpone the surgery and take all of your test results and get a seconds opinion to make sure you are being told all of the facts and if you even need this operation because once you have it you will never be able to go back to the way you were before the surgery, they move the position of your stomach inside your body for ever.
dandd4444 contact me privately through this site if you want.
Thank you for posting all of your trials and tribulations with your surgery. I am considering recommendation by my doctor to have the nissen fundoplication as well but am very wary. After reading your experience and everyone's comments I am even more wary. After some research on doing the hiatal closure WITHOUT doing a fundoplication, I did find some articles written by doctors at the University of Heidelburg on doing hiatal closures WITHOUT the fundoplication and having good success. Here is the link to a very recent abstract of one of the articles on PubMed http://www.ncbi.nlm.nih.gov/pubmed/23670038 Even before researching this I had my doubts about rushing into the fundoplication -- it just seems like such a clunky kluge way to fix a very delicate mechanical problem. I do have a large 6cm hiatal hernia and paraesophageal mixed hernia at that, but I think what needs to be determined before surgery is how functional the esophagus actually is despite the hernia as it is different for each patient. Even someone with a large paraesophageal hernia like me can have some functionality left to the esophagus. Getting the hiatal closure performed with a biologic mesh support of the closure seems to make sense but some articles I've read indicate that another test of the competence of the esophagus should be performed after the hiatal closure but before the fundoplication to see if the fundoplication is really necessary. Finding a doctor who will only do the hiatal closure without the fundoplication in the US is difficult, however. I may have to go to Europe I guess! Another area of research I'm interested in is why they can't reengineer the phrenoesophageal ligament -- it is the ligament that surrounds the esophagus and anchors it to the diaphragm from both above and below in an elastic fashion -- a true support system that is mostly destroyed in those of us with hiatal hernias. Restoring that ligament using sophisticated tissue engineering would seem the way to go -- if they can restore valves in hearts why can't they restore this most important part of the anatomy also. Anyway, please continue to post Gastroboy -- I really hope you get some satisfaction and compensation for all of your difficulties as it does sound like your surgeon's skill was deficient.
Who is your surgeon that released your nf? I believe I have some of the same rejection feelings. one week after my surgery I was doubled over in severe pain in my left side. And I still have pain in that side . Its as if something has been torn there. I also still have acid reflux, my surgery did not repair this for me. I would love to have mine reversed. I had my surgery Feb 2013. I still have lots of bloating and gas and pain in the stomach.
Diet after a NF is very important. For example, if you are drinking carbonated beverages or ate solid food within three months of the surgery, odds on are that you will defeat the surgery. My surgery was very successful, but I followed dietary directions. My sister also had the surgery, but simply could not resist overeating and unbelievably drank cokes. I also suspect she did some purging which will quickly undo the surgery.
BeFit1, I am going to the Mayo clinic on Monday, I had the surgery 2 years ago have not been the same since. Where did you have your's done at? I really appreciate your help. Life has been pretty MISERABLE.
Thanks for your info. I had my nissen fundoplication 6 months ago and hv developed problems i never had before. From the look of things i was never examined properly before the procedure was done. I have resently developed severe numbness in my arms at night and my everyday problem is heaveness from my throat to the head. I cant manage to carry my handbag andmy neck is stiff. Cant stand any heat to my face or head and working is not possible any more. The the doctor that saw ne at six weeks after the op said i need to hv the wrap undone as my problem was in the throat and the op would just make it worse. Im scared to go back as im not sure wat the risks are but im cobdition is getting worse. I had tgis gerd problem for 5 yeats before doing the op and all meds failed.
I also am researching to have the surgery reversed. I had the surgery done 4 weeks ago and I also am having severe gas spasms. I feel awful! I have so much bloating and gas in my stomach and back. I really thought I would feel better but I dont
I feel for you, try and keep a positive outlook - I know it's very very hard. Your recovery is going to take anywhere from 6 to 12 months or even longer as in my case. I'm 2 years 5 months post op now & I can honestly say it took me around1 1/2 years before I felt I could try and put this massive mistake of an operation behind me and focus on moving forward with my life.
In regard to having the wrap undone, I wouldn't recommend it as they destroy all of your natural reflux barriers and replace them with the wrap, so if that wrap is undone your going to be potentially exposed to really bad reflux that could start months and months after having it undone ? In my case undoing it seemed like a big risk of doing more damage with an unknown outcome.
Bottom line is I regret having this op with ALL of my heart but what is done is done and I now have to live with the outcome.
For anyone considering this surgery - get second and third opinions and don't even consider it unless you have very severe reflux that can not be controlled by any other means & have all the testing done to prove you need this operation don't just take some shark surgeons word for it looking to increase his bottom line !
If you're not getting any answers from the surgeon that did this to you start doing your research and get second opinions from other surgeon's as to what if anything may be going on. If the bloating & pain don't improve over the following months you need to get some explanations.
Did you follow the diet prescribed by the doctor/hospital dietician following the surgery?
Did you mix in solid food the first month after the procedure?
Did you drink carbonated drinks of any kind?
Did you check out the surgeon prior to the procedure and choose one who has a lot of experience with the procedure?
Over 90% of patients who have the procedure had a good outcome. I certainly did. Tonight I had Buccatini with San Marzano tomato sauce with garlic, onions and red peppers. I haven't had a pill to control acid in 6 years, and when I had the procedure, my teeth were turning black from acid reflux and my vocal chords are toast from it.
A member of my family had the procedure, but decided to follow her own diet with terrible results, she wrecked the surgery by stuffing herself.
Mate I'm very glad that the operation worked out great for you but to answer your questions in one sentence - No sorry I didn't do anything wrong - followed all the advice I was given to the letter & I'm not overweight as well.
The surgeon was very experienced too, but very very deceptive as well. Look basically I'm not willing to tell you or anyone else all the details here online for obvious reasons, but to put things in perspective I recall a recent case here in the media of a surgeon that removed the wrong kidney from a patient, they are not Gods and some do make big mistakes - and in my case then back away from them leaving the patient in the dark and without any answers or
a way forward. Surely you're not supporting that sort of treatment ?
Don't take my situation as a personal attack on your successful operation. Surgery's can go wrong & all my posts on MedHelp were to find out information & advice as my surgeon wasn't interested in that.
I leaned more in the first 45min visit with my second surgeon than all the visits put together with the guy that did my operation and yes I asked him
plenty of questions prior to my operation, just so you know.
I now post on here to help others who are having problems post surgery & have shared all the information I learned during my recovery. As mentioned I'm really glad you had a great outcome but as you say above 90%, don't the other 10% deserve a voice and some advice? Put yourself on the other side of that equation for a while and please show some empathy for others.
I'm not confrontational, I'm sorry if I came across as such. I'm well aware that surgical procedures can go haywire, I had heart bypass surgery two years ago and the procedure failed six months ago, leaving me not just uncomfortable but with Congestive Heart Failure. Bypass surgery helps a huge per cent of the population who need it, in my case my body simply rejected the transplants of the veins for arteries.
That said, I don't want to blanket the process with negative comments, I was the exception, not the rule. I've followed this board since 1997 and hope to make sure my negative results don't influence other people from seeking help. I trust you will find some peace and comfort.
Hi I had hiatal repair Nissan fundoplication end of Feb 2014. I couldn't drink water for 2 mo. I have not been able to eat food and the recent barium swallow showed that two tiny sips of the white drink barely moved down but came to a stop and didn't enter stomach. I am now scheduled this Thur for endo with stretching. I have been so concerned that the fundo would be damaged, but I am having vomiting, so know I have to do something !!! At least the vomiting isn't as painful. It seems it starts mid chest, throat, and stacks up around belt line. What can I tell dr doing procedure to make him aware of my own special needs, and will it work, what are risks. Etc
I'm so glad to have read your post. You are the first person to say that you have had yours reversed. That was my only question, can you have it reversed. I didn't know if it was possible. You have given me my answer.
I had mine done in 2008 before Nexium. If I had taken this particular drug in the first place, I wouldn't have even considered surgery.
The Nexium cures the heartburn but I still reflux at night, ALOT, and then it goes into my lungs. Nothing was accomplished by having the useless surgery. Plus my chest feels tight, confined and uncomfortable.
I'm going to check into having my wrap, although it looks like stitches in the xray, removed. And probably do a lot of vegan eating.
Thank you so much. Hope you are still doing very well!
A lot of controversy about this type of operation but what it comes down to is about our individual problems. We all have different functioning stomachs so it may not suit all. I have had 2 fundos and one reversal,all not without their problems. I would say the last one I had in March this year ( the partial wrap) was the most painful due to scare tissue. This was done by laproscopy and I will not be able to have any more surgery. My post op test show a very slight improvement but I still have reflux and vomitting. It was 50/50 as to whether the reflux would be improved and was told this by the surgeon.
I'm 34, from Melbourne, VIC..had the Toupet wrap done 3 days ago and reading all of the above is scary considering there's likely no going back.
I had a 2cm hiatal hernia and reflux/heartburn as a result...I'd wake up feeling like my throat had acid in it all night unless I slept sitting up or with the bed raised with phonebooks. It was either take Nexium/Pariet/Somac for life (which seemed to dried me out..eyes, mouth, skin, constipation) or get the surgery.
The greatest worry was the possibility of developing Barrett's, and I had mucus in my throat all the time (still do) as confirmed by ENT scope.
I had the motility study and 24 hour PH monitor and they concluded that the hernia repair/Toupet wrap was the best course of action. I asked repeatedly if they could just repair the hernia and not wrap my stomach and was told that the wrap was required or reflux symptoms would likely resume. I can't burp at all now, it happens internally, not too pleased about that. It's easy to forget the point of the operation was to stop the reflux with these new problems I'm experiencing in recovery.. People say reflux is normal, everybody gets it...who's to know if it's at the point where it's causing irreversable damage or not.
You will know, if you develop Baretts, or like me, burn your vocal chords and watch your teeth turn black when acid dissolves your enamel, leaving you not only the surgery expense, but coating your teeth. I got all three, and quickly, like a New York Minute. You probably made the right decision. Just stick to the diet, and like the nurses told me, "We LOVE farts, we know the procedure worked!" Just fart and know the procedure worked. You will experience some problems in the southern hemisphere for awhile.
I haven't taken an antacid pill since the surgery, what a blessing!
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