15yrs post NF and symptoms

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MimiPesto
New Member


Date Joined Mar 2014
Total Posts : 2
   Posted 3/7/2014 8:30 PM (GMT -6)   
so, here goes. I am 15 yrs post NF. and what a blissful time it has been once I was fully recovered from the surgery. Fast forward to 2 yrs ago and started having reflux again. Saw GI doc and scoped/ CT. anyhow looked like wrap was intact but had slipped or loosened slightly. I did double dose nexium and reglan, sx improved. now it is back worse than ever. unfortunately due to a bad drug interaction I cannot do reglan anymore. Insurance won't approve nexium, never mind double dose. I am in process of trying to get dr to fight for it. I have to wait till 21st to see GI dr. nobody seems to want to listen to me. I've been dealing with this my whole life you'd think they might try. I cannot return to my orig drs because of losing my private insurance. I don't even think the surgeon takes insurance at this point. I am just unsure what to do. I don't want to have it redone unless the orig surgeon could do it. anyone out there have some advice... i will apply for assistance thru astra zenica but having done it with another drug I know they tend to be slow( more than a month). currently living on malox, tumms, anything and everything along with double dose 40 mg prevacid.
the reflux is bad enough I have the steady throat clearing, sore throat, hoarse, and pain behind sternum. I have adopted a benign diet though it isn't helping thus far. I know it will take some time. but you all know how it feels! B

dencha
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Date Joined Feb 2009
Total Posts : 7181
   Posted 3/7/2014 9:02 PM (GMT -6)   
Hi MimiPesto,

Welcome to the Healing Well yeah yeah yeah Wrapped Club! yeah yeah yeah So sorry to hear that you're getting symptoms again. If your wrap has slipped/loosened, it sounds as if a redo is likely to be your best option. Keep in mind that the surgeon who did your original procedure, might not be the best one to do the repair. Often a surgeon who does the original surgery--no matter how skilled--might not be experienced in doing redo surgeries.

It will take some research, but you should be able to find a surgeon who specializes in Nissen repair/redo. Sometimes it needs to be at a larger medical center, as those facilities often see more problems, so they're more experienced in redos.

Insurance is definitely an issue. If you're in a state that has an insurance exchange, it might be an option for you. You'll definitely want to be covered if you need a redo. I wish you the very best of luck in finding coverage.

If you can get help with Astra Zeneca, and find that the Nexium can help you, maybe you can avoid the redo for a while. Have you considered, or tried the generic form of Protonix (Pantoprazole)? Some stores, like Target, have generic drugs for $4. That might be your best bet.

Obviously, the time might come when meds just don't cut it. When that happens, be sure to research your surgeon very carefully. A skilled/highly experienced Nissen redo surgeon will be critical to getting you back to your old post-Nissen self.

I wish you the very best of luck. I know insurance is a big issue, and I truly hope you find help very soon.
Glad you've joined the forum, and I hope you'll stick around!
Hang in there, and feel better soon!

Very best wishes,
Denise

GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 3/7/2014 11:28 PM (GMT -6)   
MimiPesto

I agree completely with Denise. find a surgeon who does a lot of redoes as they are tougher to do well. Try at a teaching hospital also. They may be able to help with financial aid too.

15 years is a pretty good run on a wrap and though no one wants to go through surgery again it does seem this would be a wise choice if it has loosened or slipped.

Let us know how you are doing and what you find out.

take care,
Bill devil
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

MimiPesto
New Member


Date Joined Mar 2014
Total Posts : 2
   Posted 3/8/2014 9:12 AM (GMT -6)   
Dr Salky at mount sinai did the original wrap. I don't think I'd want to go elsewhere, but of course will look into surgeons that do redoes. I'd like to see if I can get it to settle down again and maybe buy myself some more time. might end up in a different place financially, and/or in insurance coverage.
I am covered thru medicaid. but in NY state you have to go thru a managed care type plan that is very limited.

thanks for the warm welcome!! B
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