Hi! Please help.
Has anyone on here had a nissen fundo reversal? I have read about people WANTING them, but have yet to read about successes/failures of a take down.
My son had a very traumatic entrance into this world and spent his first month of life in the NICU. The Doctors said that once we got him a feeding tube, we could go home. They also did a PH probe (I don't know what the score was), and everyone on staff recommended a nissen fundoplication. Well, two days after surgery and the pain meds began to wear off, my boy started arching, screaming and crying. The hospital sent us on our way THAT DAY, and my little guy has been in hell ever since.
This was two years ago, and I keep promising my guy I will find someone to make him better. The hospitals act like I am a crazy woman, and just keep offering new medications for us to try. The medications actually make him worse! Reflux medications, especially PPI's tore him apart. Pain meds, nerve calmers, muscle relaxors, and medication to slow his heart rate, all work on a sporadic basis(when he is having a really bad day), but if used on a regimented basis, it's bad news!
Also, anyone who has had a nissen, is it uncomfortable for you to sit? Becket is happiest lying flat on his back, and being in the upright position is no good for him. This makes learning quite a challenge, and traveling is excruciating for him.
And not to get too personal, but does it hurt for you to poo? Do you ever get the cold sweats, especially when using the bathroom?
So, did any of you have had a reversal? Did it help?
Thank You for any and all feedback!
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I am sorry to hear your son's problem and I feel for you and him. I am happy to hear you are trying to do everything you can to ensure his health and happiness. I am a fundoplication patient myself, had a toupet fundo last year. For me, it's not what i wanted and has not worked well. I don't know exactly what your son is feeling, but it very well could be directly related to the fundo. For me, I have stomach aches every day, especially after eating. I have bloating/cramping sometimes so severe I must walk stooped over. Maybe he is feeling similar things. Also for me, laying down is best. It does not hurt when i poo, but i have to goe to the bathroom 3 or 4 times as much as before. Also have lots of gas and gas pains.
May I ask what was the medical situation where he needed a fundo and is it something they suggest for his whole life? Everyone's different so i can't assume his situation is the same as mine, but as for me, I'm trying to get mine undone. It's definitely not the best thing for me.
Let me give my opinion/advice if i may. I've been having health problems for 6 years. After having had/seen dozens of doctors and tests and a few surgeries I can definitely say doctors can be wrong. Doctors will not always suggest to do what is in your best interest, but rather what is in THEIR best interest. And after performing a surgery (like this fundo surgery) they will almost never recommend undoing/reversing/takedown of the surgery because it either implies they made a bad decision/suggestion to do it in the first place or they didn't do a good job during the surgery. They will NEVER admit either of those two things. And, they will give you pushback every time you suggest takedown of the surgery. they will use scare tactics on you, saying takedown is worse than keeping the surgery because there will be excessive acid reflux etc. I wonder did they tell you all the options you had, or did they only suggest fundoplication?
After my fundo, my doctor kept saying "don't worry, it gets better as time goes on." i didn't trust him, but didn't have any choice but to wait and see. Turns out he was wrong. Then when i approached him and said i wanted it taken down, he said it is irreversable. But I knew that wasn't true. i kept pressing the issue and he admited it CAN be reversed/takedown. But then he tried his scare tactics again, and said if he took it down, and I had terrible reflux, he wouldn't help me anymore. But you know, there are other doctors. Have you seen other doctors? I can't sit here and recommend a reversal for your son, but I can say the option should definitely be on the table. Can you be sure the operation was performed correctly the first time? There are many nerves in that area too, which could have been damaged. Get several other opinions. Wish you the best.
Thank you for your replies. We are headed down to Cincinnati, hopefully sooner than later. I've heard wonderful things about their G.I.department, and they have done a couple of successful takedowns there. If the Nissen isn't the problem I'm sure they'll find it. If they find nothing at all, our surgeon has agreed to take it down himself. The one and only certainty I have, Is that my son was fine before surgery and after, he was not.
Update..... I think the Nissen slipped!!! Becket has a lot of foamy saliva lately, but his comfort level has dramatically improved!!!! He also is having a rough time laying on his back, whereas this used to be his favorite position. We'll take it!!!!