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Now 3 1/2 months after surgery, continued problems - update 5/19

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GERD & Acid Reflux
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Posted 4/19/2018 2:26 PM (GMT 0)
I had the surgery in 2013 done incorrectly and a vagus nerve cut off inadvertently. I had to have it redone 5 months later and almost died. I now have gastroparesis and dumping syndrome so my blood sugar drops rapidly at times after eating. Worse yet, the second surgery failed too. I was able to eat all foods again (in much smaller amounts because of gastroparesis) after the second surgery, but slowly over time all the foods that caused burning prior to surgery once again were triggering the pain. It got worse and more and more foods that I enjoyed prior to surgery are now triggers including toast bread and warm water!! My diet is so limited in terms of variety and quantity that its affects my quality of life. I found a new GI doctor who told me some of the triggers like toast and warm milk and water are not really triggers for reflux and it was likely NOT reflux. He suggested I have esophageal hypersensitivity. He started me on low-dose Elavil which is supposed to desensitize the nerves and has been successful for many. It takes weeks or months for the levels to be effective. I started 5 weeks ago and have not yet noticed any improvement but I'm continuing the pills and remain hopeful. I can increase the dose in a few weeks if there is no response. If you are having symptoms after surgery, this may be something to consider. I wish you the best. I totally understand how depressing and frustrating this disorder is.
Posted 4/20/2018 1:15 AM (GMT 0)
Went to surgeon for follow up yesterday. Doing a barium swallow in 2 weeks to make sure things are ok or to see if the wrap is too tight. If its too tight food getting stuck there could be causing the symptoms, but that seems odd as I have no trouble swallowing (unless I take to big of a bite or go a little too fast once in a while). Perhaps I am just one of those who needs to remain on meds even after the surgery. I am currently taking no acid meds at all and would rather keep it that way, but if it will finally get me past this then so be it.
Posted 4/20/2018 1:04 PM (GMT 0)
Emmons:

When you had your manomotry prior to surgery, did it show that your swallowing was compromised? If after your barium swallow they find that the wrap is too tight, they can always do a dilation to give you relief. As far as the PPIs, you may only have to take them for a few months. If your doctor suggests you going back on them, you should take his advice.

Good Luck, Sharon
Posted 4/20/2018 8:31 PM (GMT 0)
Hello Emmons, DonnaMarie, and others:
I haven't posted for awhile. Just read posts from Emmons and Donna Marie and sorry that you still have issues to deal with. I wish you the very best. I'll post an update on myself now:
6 months ago I had surgery to repair a large paraesoophageal hernia, a 270 wrap and lengthening of the esophagus. They did the repair by laproscope but then had to convert to open abdominal surgery so I have a 6 inch vertical incision from that. I am 70 years old; had the surgery at Cleveland clinic. The reason I had the surgery was because I had shortness of breath, hoarseness and mucous in throat. I had very little heartburn. Because my heart and lungs checked out okay, surgeon thought the pressure of the hernia was causing shortness of breath.
Well, 6 months have passed and I still have times of shortness of breath, hoarseness, and mucous in throat. Since the surgery I have had a tight feeling just below the sternum where the diaphragm was stitched although that is not as tight as it was in the beginning. Since surgery, I now get a tight, constricting feeling all around my rib cage. This is made worse if I bend too much, etc. I am able to eat okay and swallow okay but I have most of the same symptoms for which I had the surgery.
I had a hard time the first four months bouncing back from open abdominal surgery --lots of sorenss and painful ab muscles. That has finally gotten better.
I am thankful that I came through a major surgery okay; -- but am discouraged. It just feels like I have fought my way back from a major surgery only to be right back where I started with the same symptoms. It's been a hard 6 months and it is sad to not see any progress from all I went through.
So, although our symptoms are different, I know how you feel to still have issues to deal with. The ray of hope I hang on to, - and hope you can too -- is that maybe time is still on our side. I am hoping that all the trauma to my diaphragm is still healing and still causing these remaining symptoms. I keep hoping that maybe at one year, I will be able to say that these things are improved. I have since been told by a friend, who is a general surgeon, --that this type of surgery is very helpful for people who have bad heartburn and trouble swallowing, but it is less helpful for breathing issues. Wish I had been told this in Cleveland; I may have not decided to have the surgery. But, that is hindsight. I have to be thankful to have gotten through the surgery, to be almost back to my former self even though I am still stuck with the problems I had the surgery for. I am hoping and praying that more time will make a difference and I will hope the safe for each of you and for others who still have problems. This surgery does seem to be a difficult one with varied recoveries so perhaps we will still reap some benefits. Take care; God bless and Best wishes, -- ByHisGrace : )
Posted 4/20/2018 11:30 PM (GMT 0)
Hi. Today, I tried to do a post that could be read by everyone on this forum, with a special notation to Emmons and DonnaMarie in the greeting. I am not very efficient in using the forum and it doesn't look like my post went as planned. It shows up as a reply to the most recent post to Emmons. Anyway, I hope others can see it in case there is something we would have in common or something helpful to others. If any of you knows how to move my post to a better location, feel free to do so. In the meantime, I send good wishes to all on this forum and thoughts to DonnaMarie and Emmons.
Thanks, ByHisGrace
Posted 4/22/2018 3:59 AM (GMT 0)
Donna Marie,
I hadn't posted for awhile; I just did a post titled six months post surgery. As usual, I rambled!!
But, I hadn't seen any updates from you for awhile and was concerned.
I'm sorry you have had some difficult times and am hoping that things are better.
As you will see from my recent post, although I am finally recovering from the surgery itself, I still have pretty much the same issues I started out with. Still hanging on to hope, but it's hard some days.
I have thought of you and am sending prayers and good wishes for you. Take care.
ByHisGrace : )
Posted 5/6/2018 12:38 PM (GMT 0)
Just an update...

Now 3 months after surgery, I went in for barium swallow test/upper GI. Wrap still intact as well as hernia repair. No reflux shown during test. Some narrowing, but nothing that appears to be a problem (I have no problem swallowing at this point unless I take too big a bite and don't chew enough or go too fast). All these things are good to hear, but I continue to have problems. Yesterday, at my child's birthday party, I got brave and had a slice of pizza. No troubles eating it, but 2 hours later good old heartburn was back in full force. Even had to take a Zantac to try to get some relief. Still feeling it this morning. I am being sent back to my gastroenterologist by the surgeon so we will see what happens. Did not want to be back on meds as they didn't do much for me before the surgery anyway, but I wonder if that is what I will have to do. It is beginning to feel as if I put myself through this surgery and all that came with it for no reason. I had great hopes that this would turn things around for me. Now I am still having problems and have had to put so much of my life on hold for the recovery aspect of the surgery.

Post Edited (Emmons) : 5/6/2018 6:41:05 AM (GMT-6)

Posted 5/14/2018 5:18 AM (GMT 0)
Hello all,
Sorry I haven't posted in a while. I was in the hospital with diverticulitis. Not fun and what makes me mad is that I had gone to the surgeon on March 22nd and told him that I was in a lot of pain on my lower left side, swollen there and he just told me I needed to wait another month and it would be better. That the swelling would go down and that it takes time for my insides to heal. Well the pain was the starting of the diverticulitis and not the surgery. But it was 3 weeks before I started to run a fever and by that time, I had an infections. When in the hospital, they did a CT, also found out that the hernia is still there, funny, the surgeon told me he repaired it, guess not.
So, everything I was eating was running right thru me, now not so much, can go 4-5 days and not go to the bathroom, that isn't fun either. Went to the gastro doctor, have to have another colonoscopy next month, another fun thing.
I also have pain when bending over, not right away but after a few minutes. No heartburn and I am off all my medication for reflux so I guess that is a good thing. I think that I might have over eaten a few times because my tummy hurts at times. Not like a tummy ache, just hurts funny like. And boy does my tummy or something, not sure what make the loudest noises after I eat. Sometimes I can pass the gas other times, the noise in my abdomem goes on for hours and I do mean hours.
So that is all of my news for now. Sorry if I worried you, BytHisGrace, my cousin also had surgery and she was staying with me for 2 weeks.
Emmons, sorry you are having problems. I had pizza with 4 toppings on it and had no problems at all with it. I drink a ton of water all the time but I always did. And when I went for the barium swallow test, it showed it still have reflux so I guess we can't win. So my surgery was suppose to take care of the reflux and the hernia repair and it did neither. And I know what you mean putting your life on hold. The only thing I got out of it is not having to spend money on medication that I guess wasn't working in the first place.
Posted 5/19/2018 8:16 PM (GMT 0)
So now 2 weeks later and back to Zantac before bed. Symptoms now getting worse during the day time as well. I go back to the gastro on Friday so I'll have to see what he says,but I think I need to get back on the ppis (unfortunately)...don't really want to have to wait until the end of the week, but I'd rather not play doctor on myself. This has been a very discouraging time for me. I'm guessing this means the surgery wasn't done right for me/can be considered a failure if I am getting worse at 3 1/2 months out.
Posted 5/20/2018 1:55 PM (GMT 0)
Hii..
Are there people who hv hd reflux symptoms many weeks after their fundoplication and then felt better?? I'm from India and had my fundo 7 weeks back..I still HV reflux symptoms like heartburn and burning nose..I thought my fundo hs failed and posted my concerns..SharonZ and Alcie comforted me saying to b patient as I'm in my early recovery..and many people who have hd problems like me cannot be seen posting saying that they are better..they hv just stopped posting..any such experience is appreciated..

Rooby
Posted 5/21/2018 7:25 PM (GMT 0)
I have an odd question for all of you, do any of you have a tightness in your chest since the surgery? I have and it seems to be getting worse. It is right between my breast and anything I do it gets tighter. And my B/P goes up also with little thing that I do and then I need a nap. I did have a heart attack almost 3 years ago but I was at the cardio doctor 3 weeks ago and they said everything is fine. At the same time this is going on, my neck hurts. My chest hurts right straight thru to the middle of my back so I don't know if it is my heart or the wrap. I haven't called the surgeon because I am rather disappointment with him because I still have reflux and according to the CT scan when I was in the hospital, the hernia is still there that he said he fixed. All I know is that I am taking 2-3 hour naps every day and sometimes I don't even know that I fell asleep until I wake up. Thinking this surgery was a big waste of time.
Posted 5/21/2018 8:04 PM (GMT 0)
Reply tO Donna Marie. I had my Nissen fundoplication and hernia repair, last August, nine months and I still have problems, much like yours, I have chest pain and middle back pain also been having headaches at the base of head. I also went to heart dr. And that all checked out fine. I had an endoscopy in Apr. Dr says the Fundoplication and hernia are okay, and I should not be having any acid, have not had another manometry to check for acid, but I think I may need to. It is so frustrating, and like you I wonder if. The surgery was worth it. I have read other post that say It may take a year to get over it. I know this doesn't give any answers, but to know that there are others with the same issues.
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