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considering tif surgery for my 16 year old son...please share experiences

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GERD & Acid Reflux
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Posted 8/8/2015 2:02 AM (GMT 0)
My 16 year old son has suffered with LPR and gerd for 2 years. He went undiagnosed for the last 18 months because his symptoms were atypical..constant sinus infections,swollen feeling at base of tongue and throat, 25 cavities in the last year because his enamel is compromised.He also had heartburn symptoms that did not resolve with 80 mg of prilosec. He sleeps on a wedge and follows the antireflux diet.After other drs (2 other gastros, 2 ENTs, rheumatologist)I finally found a gastro doc at Cohens childrens hospital who diagnosed him with GERD and non acid LPR. He needs surgery, but I am apprehensive to get him the traditional fundoplication due to the side effects and the fact that it is not reversible.He is only 16 and he has no quality of life...he can't exercise, has increased anxiety from feeling terrible for the last two years, has constant discomfort from the throat and tongue.He regurgitates into his mouth any time he changes position.He is miserable and my heart is breaking for him.I have an appointment with Dr. Gregory Haber at Lennox Hill in NYC to see about the Esophyx tif procedure instead of the traditional fundo.He has agreed to see him although he is just turning 17.I would love to hear ANYBODY'S opinion on the tif...I can't find any recent info on the procedure other than they just concluded a clinical trial out of Lennox Hill.Please post any experiences so I can help my son.Thank you.
Posted 8/8/2015 1:32 PM (GMT 0)
Welcome Nellie5.

No doctors here, but from personal experience with no quality of life, I would say you first have to know what's causing the symptoms. If there's a large hernia they can't do the TIF.

The only thing that matters is what surgery is right for him. It may take a second or even third opinion to figure that out. A good gastroenterologist can explain it best and also recommend the best surgeon for the type of surgery in your area.

Do not rule out traditional Nissen if that's the best for him. Forget the side effects you read about online. Most of them disappear after a few months and that surgery is tried and true for the largest number of people. 5 years after having it I'm very happy I did it. My surgeon doesn't often do the other things, although he was one of the original researchers, because the results from the Nissen are so much better, and in my case of a large hernia, the only possible thing to get.
Posted 8/8/2015 1:42 PM (GMT 0)
Nellie5-

I agree with Alcie. best to check with a few surgeons ans see what is the best approach.

The Nissen can be undone also, but that requires another surgery of course.

take care,
Bill
Posted 8/8/2015 2:02 PM (GMT 0)
Hi, I strongly recommend you take the above advice and check out several surgeons. I presumed "a surgeon is a surgeon" and got absolutely mauled - 18 months later and I'm still suffering from damage from the surgery.

Also, one thing I have learned from speaking to specialists since is the medical profession sticks together. *Some* surgeons will take on other people's accidents, but most run an mile and recommend you speak to the original practitioner... which isn't much use when they're not very good.
Posted 8/8/2015 2:02 PM (GMT 0)
Thank you for your reply. I actually have had him undergo many many tests. He has a small 2cm HH,and a low functioning LES. We are waiting for the results about gastroparesis, but he is very sensitive to meds and his pediatrician does not think that he will tolerate the medication for increasing stomach emptying if he has gastroparesis.He also has about 10 other symptoms of LPR that I did not list in my first post because I didn't want the post too lengthy.The gastro we finally have now is Dr. Sahn , and he is excellent. He has left no stone unturned in ruling out anything that could prevent surgery.He has recommended a pediatric surgeon that does traditional fundo. Awaiting results from last test because I am told having gastroparesis will definately cause issues with excess gas and bloating after fundo. I believe tif still allows belching and vomiting when ill.I haven't made any decision yet, but I posted hoping to hear about recent tif patients. I can't find any recent info on the net and that makes me wary. Thank you for your posts,I truely appreciate your input.I am petrified of making the wrong choice for him. Thanks.
Posted 8/8/2015 2:09 PM (GMT 0)
Hey Nellie5, all the very best, hope it all goes well.

Parenthood eh? None stop worry... :)
Posted 8/9/2015 3:56 AM (GMT 0)
Thanks for the support. I'm also researching MUSE procedure (seems to have longer lasting outcome than Esophyx tif) and Stretta. It's difficult to find objective info since most of it comes from the people with vested financial interest, as opposed to honest opinions. Thanks again.
Posted 8/9/2015 9:02 AM (GMT 0)
So sorry to hear of your sons distress this is really a horrible complaint. My son has just turned 30 and has suffered on and off for many years. PPi meds helped for short periods but caused much sickness. Things came to a head 12 months ago and he could stand it no longer. Vomiting bile/acid and mucous which came through his nose, constant sickness, unable to keep fluids foods down, weight loss of 2 stone, damage to enamel on teeth etc etc Doctors even thought it was rhinitis at one point ! Any way urgent endoscopy uncovered gastritis and oesophagitis (ulcers on his oesophagus )Medication upped to maximum followed by a barium swallow x-ray which actually showed him refluxing. Back to consultant who put him forward for PH testing and a manometry. Fast forward and test proved that his Lower oesophagus sphincter muscle was weak and causing the issues.
As meds not helping he was forwarded for a Nissen Fundoplication 360 wrap.
He went in on Friday of this week and had this procedure. I will update his post op recovery for those interested on main page.
We live in the UK but if I can help in any way you only have to ask. I would the to think your son had to put up with this as long as mine.
Good wishes
Posted 8/9/2015 9:39 AM (GMT 0)
Hi Nellie5

I developed delayed gastric emptying (gastroparesis) from taking a PPI (omeprazole 20mg). I was taking this medication because I was having trouble eating spicy foods and things with caffeine and citric acid. The PPI was the only medication I was taking when this happened.

When I developed delayed gastric emptying from this medication, my GERD problems became significantly worse. I could not eat anything including a cracker or slice of apple without serious LPR/Reflux issues. I ended up loosing a lot of weight because I could not eat.

I went through three months of acid rebound to wean off this medication. Acid rebound is a withdrawal symptoms from this medication. Once off all PPIs, H2-blockers, and antacids, My delayed gastric emptying slowly reversed. This is without taking any supplements. My LPR is now almost completely gone.

I would recommend seeing a qualified naturopathic doctor before considering surgery or being put on any medications for LPR. Your naturopathic doctors understand that Low stomach acid can actually cause GERD/LPR. Something the GI doctors have never been able to grasp.

Post Edited (CAGU) : 8/9/2015 4:28:35 AM (GMT-6)

Posted 8/9/2015 1:03 PM (GMT 0)
CAGU,
I will certainly see if I can find a naturopathic doctor in my area...I am looking for as many options as possible. Thank you.
Posted 8/9/2015 1:16 PM (GMT 0)
Your Welcome. Please make sure they are a QUALIFIED naturopathic doctor. Check to see in your area what the qualifications are. Your primary care physician may be able to recommend one.
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