Met with the LINX surgeon (Updated 1/3/2013)

A week ago (11/19) I drove 3 hours to Mt. Vernon, Ohio to Knox Community Hospital. I met with Dr. Paul Taiganides. Sorry this update is a week late. I've been getting really depressed about always feeling so sick and basically have been a hermit.

So, I drove up there with all my past test results, information, list of what gives me reflux, foods I can eat, list of symptoms related to GERD, medicines, any medical issues at all, etc. Just very prepared. I wasn't feeling so well after the first 2 hours of driving, turns out I had a fever and was getting sick :/

I got there very early and then had to wait past my appointment. When he finally came in I knew why I had to wait - this guy actually LISTENS and cares! He spent about 30 minutes with me! He answered every single question I had with logical and real answers, unlike my past GI doctors. Dr. Taiganides was just as frustrated with my current GI doctors after I told him everything I've gone though and what medicines I'm taking. He couldn't believe they aren't taking me more seriously. I'm only 30 and extremely underweight, eating a perfect "safe" diet, on 60 mg PrevAcid daily and still have breakthrough systems :(

He educated me a bit more on GERD, what it does, what causes it and what can happen from it. He was the first doctor I've seen that was happy from the moment I met him and listened to me. He didn't make me feel annoying or crazy. I loved the fact he agreed that lifelong PPI's is just NOT an option. He told me about how unhealthy they are, etc. This I already knew from research but you have to understand, all my GI doctors just tell me to stay on PPI's for the rest of my life. Keep in mind I want kids, but according to my GI doctors that isn't in the cards since I need to be on PPI's forever. So hearing someone LISTEN to me and give me hope that I can move on from this and start a family is amazing.

He did 12 of the trial LINX surgeries. Overall he has done 46 LINX surgeries, with no complications or after care problems, at all. He thinks I'm a better candidate for LINX than Nissen, just because LINX is much less invasive. I did get to play with the LINX device and it's genius! Also, just fun to play with LOL. It's a lot smaller than I had thought it would be, it opens easily - but not too easily.

I asked him about my insurance and told him my worries with getting it covered. He said his last 2 patients had United Healthcare and they were covered just fine! YAY!

He was very upset that I hadn't had a pH test done yet or the manometry test. He read the notes from the previous endoscopies and said they are extremely vague. He wants to do them all himself and get better biopsies and test accurately for Barrett's. So now I go back up there December 13 to get blood work, manometry, endoscopy and while he's in there the pH capsule. He also couldn't believe they wanted me to stay on the PPI's for the pH test. He basically said to get an accurate reading of your pH you need to be off the PPI's for at least a week.

December 13 is going TO SUCK for me :( But since it's 3 hours away I gotta try to knock it all out in one shot. My husband and I are going to drive up there after work on the 12th, stay in a hotel and then get to the hospital at 7:30am. I'm very nervous about the manometry test - so please don't post how awful it was for you, it will not help my nerves! I go back on January 2, 2013 to get my test results and see where to go from there. From everything I've told him and the previous notes of the other doctors it seems surgery will be in my future. It's just a matter if it is LINX or Nissen.

I'm sure I left things out and I'm all over the place, so sorry about that! If you have questions, ask, maybe it will ring a bell. I stop the PrevAcid on Dec 6, so I know I'll be having even more awful symptoms :( But in the end this will be worth it. They said during the 48 hour pH acid test I need to keep a food diary, what I ate, when I started, when I finished, etc. They said I need to eat 1 meal per day that normally triggers the relfux. I plan on eating buffalo wings and fried pickles, those are my 2 favorite foods and I haven't had them in over 6 months (they are probably what trigger this "wave" of GERD again) Oh and pizza, OMG I want pizza so badly! Maybe all that is over doing it? I guess we'll see how I feel closer to that time frame.

I honestly can say I left there with hope. He listened to me, he actually cared, he didn't just push pills in my face. I've been getting so incredibly depressed because of always feeling sick, people commenting on if I just ate food (because I'm apparently a "picky eater", which isn't the case, I just don't eat reflux causing foods) then I'd gain weight and why am I so skinny (I was also asked if I am bulimic or anorexic... awesome huh?). I guess Thanksgiving didn't help since everyone kept saying things. I feel my husband is just annoyed with me and this situation. I literally just want to start crying randomly. I'm so sick of being sick. But on the bright side I am getting this resolved (as much as possible) - there is hope, I just have to be patient... which is hard.

Okay, end of rant. This is a novel anyways. Thanks for listening everyone :)

Post Edited (NoDoubtLove) : 1/3/2013 9:58:17 AM (GMT-7)

I asked about LINX and pregnancy and the surgeon said there have been no issues with it. He said the same with Nissen and pregnancy.

I'm not trying to compare manometry with something else I've never had, that does me no good! You just said how it causes pain. Sorry, not trying to be mean, just seemed like you went ahead and said how it was painful even after I said not that post about it. :/ I'm scared to have it done. I'm more scared of that then the surgery because I'll be out during the surgery! Maybe I'm being a baby but I can't help it. After having a HIDA scan and the insane amounts of pain I don't want more!

I hadn't thought of asking to speak with his past LINX patients, that would be a good idea! Thanks :)

I think I was just flat out shocked that he paid attention to my issues and showed real concern. He wasn't just blowing through the appointment and onto the next person. It's sad that most doctors do that :(

I honestly believe some people think I have an eating disorder and not actual "heartburn" because the heartburn they get, is just take Tums and you are fine. When I've mentioned I'll be getting surgery they look at me shocked! Like they didn't think "heartburn" is such a big deal :/

I have had scopes but they put me under for those, that's always been the procedure where I go - THANK GOD! LOL

I just have anxiety really really badly. I don't know why, it just comes on and I start to have a panic attack. :(

Hi NoDoubtLove,

Thanks for sharing your story!  I'm so glad to hear that you've found a doctor who really listens to you.  That's so important.  Good luck with your testing on December 13th!  I've had 3 manometries, and believe me, they're very "doable".  It's not the end of the world, and you'll do fine. 

Bill, one of our moderators, recommends keeping your mouth wide open to keep from swallowing in between.  It's worth a try!  Also, slow breathing and counting your breaths, like, "One, two, three, in...one, two, three out...very slowly.  It helps to distract you.  I've always had a great nurse to coach me through the procedure, and I'm sure you will too.

Okay...I'm offering this link to a YouTube video of a woman getting a manometry test.  She's a very calm woman and the video is a very positive one.  You only know if you can handle watching it.  I'm always one who does better with the known than the unknown.  It's your call.

http://www.youtube.com/watch?v=P9BrhCCuD5g

Again, glad you've found a good doc who is responsive to your needs.

Good luck with your search for answers and decision as to what you're going to do.  Be sure to research both the LINX and Nissen fully before making your decision.  There are many journals and studies online that discuss each of these procedures in detail.  Generally the "Conclusion" section is pretty easy to understand.

Best wishes,

Denise

Thank you both for these great tips. I'm going to try to memorize them and just relax. I tend to tense up and make it worse than it really is. I just need to keep remembering how these tests are going to FINALLY get me going forward with "fixing" this. I really want to be back to as close as "normal" as I can. This has taken over my life for the past 6 years and been horrible in the last 6 months.

Once again, thank you guys!

I do feel lucky I finally found someone who listens! I just hope he continues to listen. He did say something about my gallbladder and it could be an issue. Although, I had tests and mine is at 29% it should be at 30%, so I think that's good enough, right? I don't really want my gallbladder out too :( I can handle dairy just fine.

I was going to ask on the 13th. I prefer to ask him personally instead of calling and talking to an assistant. :)

o wow, you were able to stop your ppi and you don't have heartburn?
were you you still having heartburn on the ppi?
maybe you have bile reflux

I had heartburn while on the ppi's and eating "safe/bland" meals... more than what I'm having off of them.. how is that even possible?! Before the ppi's my esophagus was eroded - so it was horrific pain.

belljar1995 said...
but try to remember that when you are an anxious person, the anticipation is always worse.

This is always the case too... so I keep trying to tell myself that!

I got a call last night that my Grandfather isn't doing well. He's my favorite person on Earth, he's my Dad's Dad and my Dad passed when I was 5, so I cling to my Grandfather basically. He lives 600 miles away (in New York) so I go 2 times a year to visit. I haven't been since March because of this GERD junk :( But I'm going Saturday because I HAVE to see him, I don't want anything to happen to him. So I've been crying nonstop. I hope this isn't going to effect the manometry test, as in, the going down my nose and it being swollen in there :( I'm just having a bad day, nerves are shot. I'll let you all know how it goes.

Up in New York my Aunt is very into natural healing and will be furious to know I'm seeking LINX. She yelled at me for fillings in my teeth... my brother is a Chiropractor and very into natural too... so he won't be happy. How do you deal with people who have VERY STRONG opinions like this? I get upset and tell them they don't know what I'm going through - this isn't just a little bit of pain, it gets to point of thinking I'm dying (this is when my esophagus erodes). I don't know how to deal with their opinions ... and I know they are just trying to help but it's EXHAUSTING! I've done research nonstop and tried many "cures" but those only last a few days.

I wonder when I find out results? At the scheduling of these tests they said Jan 2.... but that's a long time away.

Sorry to ramble, my mind is all over the place. Thank you everyone for the input too <3

i was nauseated after the endoscopy and bravo, it might have been the anesthesia
the capsule felt after 8 days, but i feel my esophagus more sore after the bravo
if you don't have heartburn off ppis why do you want surgery?
just see how you feel without the ppi, on diet and maybe take a zantac once in while

Obviously the lower the number the higher the heartburn... It was going to 4 and I was getting heartburn from the chicken wings. I haven't had those in like 8 months! OMG I missed them... but not the heartburn :(

Thank you for asking :) i haven't gotten the test results yet, i am assuming end if the week.

The capsule is still in there, I can feel it a little bit. It was uncomfortable at first but the pain eased down the next day. The pH number did get to 2.3 and I was having awful heartburn during that time. Some if the times I would be feeling decent and look down and it would be at 3 something and sometimes as high as 8.5. It was very interesting. I want to know the results so bad!

The heartburn has been kinda nuts lately because I'm with my grandfather in the hospital while he recovers from surgery. I'm trying to eat healthy hospital food and I even brought stuff with me.stress is making the heartburn worse. I look at him and he's such an inspiration! He will be 92 Thursday and he is healthier than me! He's truly amazing. No medicines and just had his skull drilled into (he had blood in his brain) and he wants to go back to working in the house!

As soon as I hear my results I'm going to post in here. I really do appreciate this forum!

Any updates, NDL ?

NDL,

I have a foot condition that really is best shown using MRI. But, I've decided to have the LINX because I need to fix reflux, period. Foot may impact my quality of life, but GERD seems to change who I am, with mood swings and unclear, incoherent thought patterns. It is an extraordinarily mentally taxing disease.

As for the MRI, I am hoping to hear good news about 1.5 Tesla machines. http://www.accessdata.fda.gov/cdrh_docs/pdf10/P100049b.pdf page 7 and 8 mention trials with MRIs.

In reality, I am hoping that LINX will be a good stop-gap for the next 10 years - I don't see it as a truly life long device (esp given it has been tested only for 10 year swallows). I hope some of the stem cell research becomes a reality by then.

GH