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Struggling with Nissen six weeks later

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Posted 9/19/2013 1:14 AM (GMT 0)
I Googled some questions I had, and this support group came up. I'm new here and am just looking for some solace.

I had my Nissen on 8/8/13 and it's really been hell. I was estimated to miss a week of work, but it turned into four. I've since gone to 1/2 days and now full. Sadly, I'm still not feeling great. I don't have any strength. I'm afraid to open doors for Pete's sake.

Let's start with surgery. My time got shifted around, so I ended up going later. The DaVinci was used when I thought it wouldn't be. In a way, I feel like a guinea pig. During the surgery, my diaphragm tore and a mesh had to be put in. I imagine this caused a delay in healing.

I felt the literature I had post-op wasn't the best. I've been told there's nothing I can do (other than retching) to hurt my wrap.

One night, I couldn't keep food down. I felt it coming back up. That stopped. Two nights, I had some really bad what I call indigestion. Nausea comes and goes. I have had stomach and chest discomfort.

Now comes the real concern. The heartburn. I had an Upper GI today, and it was discovered there is still reflux. That's all I know. Wasn't this supposed to stop? I'm not on a PPI because my surgeon told me to discontinue it just prior to surgery. I swallowed a pill during the GI and the radiologist saw that it was stuck. This leads him to believe the wrap is too tight. If it's too tight, can there be reflux? How worried should I be? The surgeon did see some of the images and did say more surgery would not be necessary. Can anyone help me feel better? :(
Posted 9/19/2013 2:07 AM (GMT 0)
I'm sorry I'm all over the place.
Posted 9/19/2013 3:46 AM (GMT 0)
If they made it too tight then yes you can have reflux from the food getting stuck. Did you have a manometry, bairum swallow, or endoscopy?

I would discuss this with a different surgeon if this continues.
Posted 9/19/2013 10:34 AM (GMT 0)
couch, thanks for responding. Barium swallow yesterday. I had three endoscopies prior over the span of a couple of years.

I'm not really having anything very solid yet. Runny mashed potatoes were giving me heartburn last night. The mashed potatoes were in a cup you microwave I had to add milk to. The prior night, I had some from KFC, which didn't seem to give me any problems if I remember correctly.
Posted 9/21/2013 12:25 AM (GMT 0)
smooth-


What tests did you have prior to surgery? Food sitting at the wrap site will definitely feel like reflux. Since the tablet took so long to go through, either it is too tight or still swollen badly. Either way you aren't going to feel well with it this way.

I had an incorrectly done nissen my 1st time, so I know the frustrations when things don't go right. I also have a concern that you had mesh put in. Was it synthetic or biologic mesh?

Take care,
Bill



Ps. Feel free to email me. I am not on the boards as much as usual this week due to surprise family visit.
Posted 9/21/2013 12:50 AM (GMT 0)
opn,

I had three endoscopies. Each endoscopy was better than the prior I'm told. Due to having recurring reflux symptoms for several years, he still felt surgery was best for me (I think). The third endosopy showed Barrett's esophagus. I believe my esophagus was too inflamed during the first two to reveal it.

I talked to my surgeon today, and she's happy with where the wrap is. I was under the impression I would need my esophagus dialated, but she doesn't want to do that. She told me reflux was only seen when laying on one side. I'm not entirely sure what to take from that.

Good question about the mesh. I'm not sure what kind it is. I learned that when I guess I was being closed up, the hole was still too large. She was able to get it back together, but she said it wasn't going to stay that way, so it was decided she would go with the mesh. I've had some discomfort in the diaphragm region, but I'd like to think it's not hurt any. I'd like to think it doesn't mean that's what I feel though.

I can't believe you have had three. I couldn't stand doing this again.

Enjoy your family visit.
Posted 9/21/2013 7:10 PM (GMT 0)
Smooth-

You didn't have any other testing besides EGDs before having surgery?! Am I reading this correctly?

You should have had at least a manometry, and PH study also. The manometry is needed to see if there are any motility issues prior to deciding what wrap to use.

about eating, with the extra surgery you had on the diaphragm you will most likely have more swelling for a longer period than a normal nissen. Normally it peaks about 2 to 3 weeks. yours may stayed at peak swelling longer and may still be swollen a lot.
Anything from 1/4 to 1/2 cup about 6 to 8 times a day is the best way to eat during this recovery. Stay away from soft bread and solid meats for a few more weeks. Eat things that can be chewed to a liquid and chew, chew , chew small bites. Ground meats can be introduced in small amounts also toast will chew to a liquid.

Not getting very detailed post op instructions is all to common. Most surgeons haven't been a patient for this surgery and have no idea what it's really like. For any painful areas heat and ice can help.

I am wondering how experienced your surgeon is with the nissen. We like to see surgeons have several hundred successful nissens under their belts. Many of the good surgeons have thousands. It does take a lot of these surgeries for the surgeon to get really good at it. I learned this the hard way with my 1st one. I just asked a surgeon who did my gallbladder if he could do it, he said sure can and I went for it. Mine was done incorrectly and I couldn't eat anything without coating it with salad dressing or something of the sort. I finally found a great surgeon who specializes in redoes and got it redone correctly.
The reason for my 2nd redo was my esophagus tore during a routine EGD to check my barretts and to repair and save my esophagus they had to put a stent in and that tore my wrap completely apart. My recovery from the redoes was much better than my 1st and I account that for knowing what to expect along with having very experienced surgeons.

Take care,

Bill
Posted 9/21/2013 7:36 PM (GMT 0)
All I have had are three endoscopies. Each looked better than the last. I began with a medium hiatal hernia, stage 4 esophigitis, and GERD. By the second, I believe the esophigitis had disappeared. By the third, even though he claimed it was the best, it revealed Barrett's. I reported still having the GERD symptoms to him, and the gastroenterologist that did the scopes recommended surgery. I blame myself for not always doing everything I was supposed to such as weight loss, avoiding certain foods, etc.

I had no manometry or pH study. I don't know what those are. :( I have no recollection of having any other tests.

This is all pretty frightening. I was told to stay away from the Internet, but I thought it might make me feel better. If I tell a doctor where some of my questions come from, he'll just say the people here aren't doctors. *sigh*

I think I drive my doctors and their nurses nuts, and they're probably tired of me. I wonder at what point I should get a second opinion and how to even find a good doctor. My general practicioner referred me to the gastroenterologist whom an acquaintance of mine (an RN) likes very much. Then the gastroenterologist referred me to this surgeon. The same RN said my surgeon is one of the few she would trust to 'open her up.' The gastro sends many of his patients to several different surgeons I believe he said.

I had some stuff, but not very much. After a bit, I started looking online.

What is the redo like? Is it nearly as bad as the initial? Based on my Upper GI, my surgeon is happy with how everything looks, so she sees no need for any surgical procedure at this time. If memory serves, when I asked her how many she's done, I believe she said 'many,' but I can't swear to it. I see her October 1st. She estimates I won't feel like me for another six weeks or so, which will put me at three months. I'm still just baffled from where a week of recovery came from and why I'm healing so slowly. Forgive me if I'm repetitive, but she feels the surgical area is recovering on track, but it's the rest of me that's struggling. Since I'm not to eat and am still swollen, I don't get how I'm on track.

Your esophagus tore? My goodness. I do remember having some confusion on what tore at first. Was it my esophagus or my diaphragm? It was the diaphragm. Tearing that isn't as bad as the esophagus I'm told.

I just fear I'll live in fear forever now. I'm just struggling with my patience.
Posted 9/21/2013 8:45 PM (GMT 0)
Not having a manometry or pH study completely astounds me. Both my gastroenterologist and thoracic surgeon insisted that I have both , and a barium swallow, before even considering a surgical option. In my research prior to having surgery, it was obvious that these two tests, as well as an EGD were critical to the diagnosis and decision making progress for both doctors. The manometry is key to knowing how well you swallow and the pressure in your esophagus as peristalsis occurs. To not have had these, in my opinion anyway, makes me leery of your surgeon.
Posted 9/21/2013 9:17 PM (GMT 0)
Tony, I made the mistake in not doing the research. Being told recovery would be a week made me think it wasn't as major as it was. I had never even heard any of these. I talked to a nurse friend (whom has no expertise in this) and she feels maybe something was seen in my other testing that would make surgery the best option. What if I'm ruined because of these lack of tests?
Posted 9/21/2013 10:25 PM (GMT 0)
I just experienced some tickling in my throat followed by a cough that induced I guess what I would call retching 2-3 times. I took a Zofran. I had been talking on the phone to a friend and then my uncle prior. Maybe I talked too much. I kind of 'feel' my chest now w/ a less than moderate burning situation. I guess I'm swollen again.

Post Edited (1039smooth) : 9/21/2013 4:34:45 PM (GMT-6)

Posted 9/21/2013 11:26 PM (GMT 0)
You're not drinking enough water! Keep. Hydrated.
Posted 9/21/2013 11:28 PM (GMT 0)
You think I'm okay, Tony? lol. The throwing up didn't feel far off at all. :P

...I'm trying to be good natured about this. hehe

I like to think I've been drinking enough today. I'm drinking some green tea now. My throat feels dry and strange, though. It's interesting.
Posted 9/21/2013 11:47 PM (GMT 0)
Your throat was dry from talking, it caused you to cough, which caused the retching. Being bad natured about it would be bad! :)
Posted 9/21/2013 11:52 PM (GMT 0)
I thought my nurse friend and uncle might make me feel better. At times, it took my mind off things a second. I'm not sure if I retched or not (I know that's the really bad symptom to have), but yeah, like I said, it was close, but I was close at times before my Upper GI, too. No problems... apparently. :D
Posted 9/22/2013 1:10 AM (GMT 0)
Smooth-


What you have been through is something that angers me to no end! I believe TonyG also shares this feeling.
I am SO sorry you are going through this. As for talking with us here, I was told by 3 surgeons, my 2 GIs and several nurses that I should write a blog or book about my experiences through my nissens and torn esophagus. When I told them I was a member of this forum they were VERY happy to hear there was a site like this to get the real information out there about GERD and the surgery.
I don't want you to write it here for privacy, but would you please send me an email and let me know where you are located? My email is the envelop under my user name and on my profile. I would like to help you as much as I can. I have some contacts with very great surgeons. You should get a second or third opinion NOW.

This surgery is a major surgery and though done as a lap with 4 or 5 small incisions the inside work is extensive.

As Tony said, get yourself hydrated. even if that means taking tiny sips all day. If you get dehydrated at all it will make you feel worse.

Take care,
Bill
Posted 9/22/2013 1:17 AM (GMT 0)
Bill,

I think I sent an e-mail earlier. Let me check and try again.
Posted 9/22/2013 11:33 PM (GMT 0)
Smooth-- I wonder y ur reflux is still bad ...did u have a full wrap like a Nissen? I know as for the time frame thing for pain and discomfort I'm being told that its suppose to b off and on real bad for 6wks then another 6wks of ups and downs 😁totally annoying I know...one thing u really gotta mind the docs orders on lifting and diet cuz it all can get back to terrible like b4 surgery if u don't obey them. I know fm my experience the no solids really suck ! 😫I feel like I am starving ...so I get moody and easily agitated just cuz I am hungry ...I feel like u alot I had my surgery on 9/11 and even tho I'm early in on recovery I know alot since I was suppose to have this Nissen a yr ago but it got behind due to insurance crap. I think alot of it isn't like the surgery went wrong but mayb u r doing too much and the swelling is still bad .i am also confused y u haven't had a oh study and a manometry those test had to b done before my surgery would even b allowed to take place ...I've noticed that ppl fm other states also have different docs w different rules ...staying away fm inet is lane docs just don't like it when we come up w good ideas or have more to say then just "yes sure cut me open" 😥...I drive ppl crazy too ...so no worries unless someone has had this Procedure they have zero room to talk .. The diaphragm tearing is by far better than the esophagus because if the esophagus tour then whatever you drink Eat or swallow u would end up w food/fluid throughout your body and could cause infection but w the disphragm they just have to go in and have it repaired like stitched back up...I had that really bad and my hernia was the size of a baseball and it was pressing on my lung and my lung was pressing on my heart (which is super bad since I have CHF) I think u r fine and I agree w tony completely ..I'm sure is all just healing so keep up w meds and let us all know how u r doing:) keep ur head up and know u will get better
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