Should I have the TIF procedure?

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mabari
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 9/13/2013 12:16 PM (GMT -6)   
This will probably be a long post. Here goes. I was born in Northern Ireland and for the first 19 years of my life, I ate mainly fried foods, particularly in the am. In my early 20s I began experiencing digestive problems, reflux, some heartburn etc. In the mid 80s I was living in Gloucester, England and was suffering from severe pains in the upper right side of my body. This went on for a long time with many doctors telling me to take Alka Seltzer. tums etc. Eventually, I got this old Irish doctor who hadn't been trained in the 'new techniques'. He told me I had gallstones and had me do a test. Within a few months, I went to have my gallbladder removed. The surgeon was American and I am certain I was his first major surgery. He left me with a scar from my breast bone down to my belly button. My gall bladder was removed and I was given the 3 major stones in a bottle. If you form an 'O' with your thumb and forefinger, that was the size of the gallstones. Mucho cholestorol! After this I developed Irritable Bowel Syndrome, called Spastic Colon in England. I moved to California at this point. Also, I began taking 'heavier' medications for my reflux problems. I was on 40 mg Famatodine (Pepcid) twice daily. I had been taking this for over 20 years until about 6 months ago when it stopped being effective.. My main problem with the reflux at this point is not heartburn or regurgitation of food, it is hoarseness and coughing and painful chest. Obviously acid is aspirating into my lungs.
My doctor put me on PPIs (Protonix) but it has really not helped much at all.

So here I am, 63 years of age, not overweight, eating a good diet, don't drink, don't smoke, but being driven crazy by the cough etc. I am also worried about taking PPIs, lots of negative side effects and horror stories on the internet!! I have Kaiser Permanente, and they don't do the TIF procedure. I am in the process of trying to get them to give me an out of network referral. It seems like the only place that does this procedure in Northern California, is Mills Peninsula in Milbrae. The doctor is Dr. Albert Wetter and he has a very nice assistant called Bridget who was helpful to me. She found out the ballpark figure for getting this done privately was, wait for it, $50,000 dollars, and that was just the hospital costs. I almost fainted. So I won't be getting this done privately at Mills Peninsula, for sure.

Does anyone know of anywhere else in Northern California this procedure is done? Has anyone around here (East Bay, 680 corridor) had this procedure done locally? I would really appreciate any and all answers to these questions.

Finally, I have read most of the threads on this site about TIF, and it seemed to me that the user Bruce was most knowledgeable about it. But he seemed to be in a bad way. I sincerely hope that if you read this Bruce, you have had some relief from your suffering. The main thing that struck me from what Bruce said, was that if your problem is that of airway, aspirated acid into lungs etc. TIF would not work for you. Obviously, this is a very important point and one that I need to have confirmed from someone knowledgeable, as it affects very much, my decision to go with this procedure.

There now, I've gotten most of the main points off my chest, and I eagerly await responses.

May God bless all of you, my fellow sufferers from this awful disease, and give us all some form of relief from it.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/13/2013 1:13 PM (GMT -6)   
Hi mabari,
Welcome to the Healing Well GERD forum!  I was wondering why you're limiting your options to the LINX only.  Since it isn't covered by many insurance companies, and the Nissen fundoplication (or other similar partial wraps) are considered the gold standard for reflux, it seems that it would be another very good option to consider. As a bonus (and a big one, it seems) insurance covers the procedure.  It is important, though to get a highly experienced Nissen surgeon to do the procedure, as it is a bit of an art form.  You won't want an inexperienced Nissen surgeon, even if that surgeon is amazingly great and wonderful at other procedures.
 
While I know that there are lots of scary posts about the procedure, I had one four and a half years ago, and have been very happy with the results.  I had asthma that had become uncontrollable due to reflux, and my health was greatly impaired as a result. Even with high doses of PPIs I suffered greatly, and my lungs were in "life threatening condition", for probably 5-6 years.  During that time I was even hospitalized because of it.
 
After my lungs healed for two and a half months post-Nissen, I'm happy to say that they improved 100%.  My asthma doc say even a very small amount of reflux can wreak havoc on the lungs.  Aspiration of large quantities can actually do damage if left untreated.
 
Here's my early recovery journal link, so you can see what my recovery was like.  If you scroll down, I share some thoughts about the Nissen surgery as well.
 
Here's a link to JTP's LINX recovery journal, FYI:
 
Best of luck with making your decision. I vote for the Nissen!  Glad you've joined the forum!
Take care,
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

lajenner
Regular Member


Date Joined Jul 2013
Total Posts : 349
   Posted 9/13/2013 3:45 PM (GMT -6)   
I just read through your journal Denise. Thanks for posting that link. It was quite informative.
I hope someone in Ireland can help mabari finding a suitable surgeon.

I originally felt that TIF was going to help me, but that was ruled out quickly. My hiatal hernia was quite large and I aspirated stomach acid.

Don't be afraid of the Nissen, mabari. I'm only 3 days post-op, but I'm glad it's done.

mabari
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 9/13/2013 4:02 PM (GMT -6)   
Dear Denise,
Thanks so much for your prompt reply, and for your links which were highly illuminating. I must confess to some confusion however. You mention the LINX process, in fact your second post is a log of someone who had this procedure and their recovery from it. It seems that you yourself had the Nissen procedure. Please correct me if I am wrong -
Isn't the Nissen procedure the basic wrap of the (full or partial) of the upper part of the stomach around the lower end of the esophagus?
And isn't the LINX procedure the placement of a band (which expands and contracts) around the lower end of the esophagus?
What I have been considering is the esophyx - TIF procedure which creates a new valve for the stomach by way of endoscopic surgery which requires no incisions, and uses fasteners to pin the top of the stomach.

However, as I mentioned in my previous post, I have heard that this technique may not help with aspirated acid. You clearly show that the Nissen you had (was it full or partial) helped greatly with your lung issues. I have read that the Nissen creates problems with burping and if you need to vomit and is basically irreversible if it fails to help.
I haven't heard much about the LINX and it seems attractive in that if it doesn't work, it should be relatively easy to remove. But will it stop the acid getting to the lungs?
Also, as you mentioned the Nissen is covered by Kaiser while TIF definitely isn't and I don't know about LINX.
Anyway, once again, thanks for replying, and if anyone has any clarification on what Denise and others have posted, please let me know.

mabari
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 9/13/2013 4:05 PM (GMT -6)   
Thanks Lajenner for replying. Just to let you know, I now live in Northern California, so I don't need to go to Ireland for this procedure. At least, I hope not.

Ian Victor
Regular Member


Date Joined May 2013
Total Posts : 214
   Posted 9/13/2013 5:24 PM (GMT -6)   
Mabari-- I initially pursued the TIF procedure, however, the presence of a hiatal hernia disqualified me as a candidate for the surgery. I consistently aspirated acid into my lungs-- 4 ER visits in less than a year. I needed the surgery. I also had a hiatal hernia, so the Nissen was the best option for me. My mother and her family are from all over the UK. You guys have the best sweets and chocolates in the world. I sometimes special order them. Good luck with you treatment.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/13/2013 7:39 PM (GMT -6)   
Hi mabari,
Yes, you are correct.   I had a Nissen in February 2009, and it did an amazing job of protecting and healing my lungs.  I provided the LINX recovery thread for you to see what that recovery looks like.  In my opinion it doesn't vary very much from the Nissen recovery.
 
Yes, the Nissen (and partial wrap) use the top of the stomach to create a flap that creates a barrier to keep acid in the stomach where it belongs.  The LINX procedure puts a magnetic ring around the esophagus.  It is not risk free, though, and it hasn't been around long enough to really determine its long term success or failure.  While some are opting for the LINX, the Nissen continues to be the "gold standard" for reflux reduction. It has been in use for 60+ years, and the laproscopic version for 20 years.
 
When I spoke with my surgeon, pre-op, he said that I wouldn't be able to burp or vomit after the surgery.  As it turns out, I can do both.  Vomiting is often possible post op, but it should be avoided, as it can harm the repair.  I always carry anti-nausea meds with me.  I've had three vomiting episodes since my surgery, and each time I took anti-nausea meds immediately after vomiting once, to avoid repeated stress on the wrap.
 
I could burp the first day post op.  When I say "I could burp", I should revise the statement to, "My stomach could burp itself".  In the beginning it was just little burps, but at this stage, I can do normal-sounding burps, and they are always welcome.  If your wrap isn't too tight, burping will be possible. 
 
The Nissen surgery can be taken down by a skilled surgeon, but generally it isn't advised, because you'll be right back into the same condition...refluxing and having your lungs damaged.  Instead, a redo of the surgery is generally recommended. 
 
If you get the proper testing that will guide your experienced Nissen surgeon in deciding whether or not you're a good candidate for surgery, and if so what type of surgery, you should do fine. The vast, vast majority of post-Nissen people are thrilled with the results and would ever go back to the way they were prior to the surgery.
 
When you read the scary posts online, keep in mind that they may be written by people who did not choose the right surgeon, and perhaps didn't have had proper testing to determine underlying conditions that would have uncovered the fact that for them, the surgery was contraindicated.  I've come to believe, though, that the majority of those scary and negative posts are by people who are in early recovery, and weren't prepared for it.  They're experiencing normal post-op recovery symptoms, but think that's how they'll be living forever, which couldn't be further from the truth.  The recovery isn't easy, but it's "doable".  Actually, I was prepared for much worse.  And the results make every moment of the recovery worth it.
 
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

Post Edited (dencha) : 9/13/2013 7:42:47 PM (GMT-6)


mabari
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 9/14/2013 8:23 AM (GMT -6)   
I guess the TIF and LINX procedures are pretty new as it doesn't look like there are many members of this forum who have had them. I am still looking for answers to whether TIF will handle airway problems like I have, and also if LINX will. I know now that Nissen will take care of this and that is definitely a plus, but I still want to pursue the other alternatives until I am sure.
Many thanks to all of you who have bothered to reply, I really appreciate your taking the time to do so. God bless.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/14/2013 8:52 AM (GMT -6)   
Hi mabari,
Here's a website comparing the procedures available, with pros and cons.  Check it out:
 
Again, best wishes in your search for the best procedure in your situation.
Take care,
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

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/14/2013 11:14 AM (GMT -6)   
Hello mabari,
 
Welcome to HealingWell.  You have received great info so far but I sense you are looking for more so I pulled up some other LINX to members who kept their post-LINX-procedure journals here in the forum.
 
sinfrontera:
 
 
Next is the link to the LINX Club which is up to Part 8 of 8 now and the very first post in part 8 lists the links to all the other Parts 1-7.
 
 
gerd_hater
 
 
When you have finished browsing through all this info you will find that it is truly a individual choice and journey for those who choose LINX over Nissen.
 
Whichever you choose, I wish you the very best.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

mabari
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 9/14/2013 3:20 PM (GMT -6)   
Dear Kitt,
Thanks so much for your post. Truly fascinating and quite honestly after the research that I have been doing, and everything I have seen and read, my inclination at this moment is towards the LINX procedure. However, the costs are prohibitive at this time although it definitely fits my profile with problems with airway and aspirated acid better than the other procedures.
I am in the process of trying to get Kaiser to go for it and help me. If they do, I will book in tomorrow. If not, I may well have to be patient.
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