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

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Posted 12/31/2012 2:02 PM (GMT 0)
I'm going to have to look at that when I get time.

My question is, lots of people have metal in their bodies... what do they do when they need an MRI? What is the alternative?

I've been more worried lately about the MRI thing because of my Grandfather. If they wouldn't have done the MRI on him, they wouldn't have known what was wrong and he would have died... so it's scary to know something that is so useful will be out forever... BUT then again living like this is not an option. I am scared of Nissen and think LINX is more logic.

I guess I'll ask him all this Wednesday!
Posted 12/31/2012 3:53 PM (GMT 0)
The alternatives to MRI depends on the type of problem. If it is soft tissue or nerves, I think MRI is by far the best. Otherwise, CT scan does a decent job.

There are two avenues for why MRI may NOT be a concern with Linx EVENTUALLY.
(1) Torax have not ruled out 1.5T machines yet although 3T machines are certainly ruled out. I don't know if they are working on it still, though.

(2) NMR without using magnets may become possible phys.org/news/2011-05-nuclear-magnetic-resonance-magnets.html My guess is some limited number of machines may be available in 10 years.

Hopefully we can exert some pressure on Torax to at least tell us if there is any effort towards testing 1.5T machines for compatibility.

Would it be possible to call them up and ask about it ? I wont be back in the US for a couple of weeks, otherwise I would have called.

GH
Posted 1/3/2013 4:57 PM (GMT 0)
Okay, back from the doctor with my results! First thing, he said the magnets will not rip out of your chest during an MRI but the MRI will weaken the magnetic fields in the magnets and they will not continue to work as properly.

So long story short, NO CANCER AND NO BARRETT'S! Whew! I was honestly very scared about the outcome since my esophagus has eroded quite a few times since 2005.

He said my lower esophageal sphincter does not function at all and I have severe acid reflux.

The pH Bravo study is what I found to be amazing information. Just to see how many times this flairs up at night and just how bad it is. I guess 0-8 is "normal", 9-14 is "bad", and anything above that is terrible. Mine is 17-19 :/

I am a strong candidate for surgery. I am scheduled on January 15th for LINX. They are doing the pre-approval with United Healthcare and will let me know in a week if that has gone through. He said the last 2 he did were United Healthcare and there were no issues. He did say he submits it as "first option LINX second option Nissen" So if they only approve Nissen he goes back and asks why they approved a more invasive surgery and they will approve LINX then. We'll see how all this plays out. I asked for his best case scenario patients and worse case. He said he hasn't any worse case (maybe that's why he's the best? LOL) but I am more than welcome to speak with any of his past patients. He said the worse part will be the air bubbles (from the surgery) and then the swallowing. He said I'll feel it in there when swallowing for up to 3 months, some people even longer but never more than a year.

I'm honestly so relieved now that I have answers. I can see physical proof of just how bad it is. I know I'm not insane! I really do hope that LINX will be my saving grace... I can't continue with this quality of life. Living every single day with awful heartburn and reflux. The depression and constant worry about what can I eat that won't hurt me. The dreading sleeping and trying to take sleep meds to help get through the night.... there is a light at the end of the tunnel!!!!
Posted 1/3/2013 10:59 PM (GMT 0)
NDL, thanks for the update ! Glad that you like the surgeon and you are feeling comfortable.
I would definitely talk to a few past patients, just to get my nerves calmed even further.

The MRI information is also pretty reassuring. I don't know if the magnets can become STRONGER due to MRI. It could probably lead to squeezing the esophagus but chances should be low because the ring is already tight.

Also, would you be willing to share more details from the pH test, including the breakdowns, just so we can compare on how bad things are wrt others who've had the Linx.

When you say your pH score is 17-19, is it the DeMeester score or is it the percentage of esophageal acid exposure ? 17-19 DeMeester score is just borderline and not terrible at all.

GH
Posted 1/3/2013 11:57 PM (GMT 0)
No doubt love. Good luck. We will be thinking of you. 🌅
Question: has United Health Care given approval? We are working thru an appeal with them for the Linx device. Please tell me how the insurance business goes with them. Thanks.
Posted 1/4/2013 12:08 AM (GMT 0)
GERD hater. Some info:
Post Linx manometry results 46. Normal 10 to 45. I've been told the doctors like it to be approximately 20. Could this mean it is too tight. Dilation might (?) help. Who knows ! Everyone is different and it becomes the decision of your surgeon.
Posted 1/4/2013 1:30 AM (GMT 0)
Hi Pat Fill,

Is this manometry reading one particular case? Npt sure about your Linx status: are you scheduled for one soon?

GH
Posted 1/4/2013 3:31 PM (GMT 0)
Pat Fill - I won't know if United Healthcare will cover it for a few more days. I'm hoping I get a yes and SOON!! I'll post in this thread as soon as I find out :)

GH - I'm not sure how comparing my numbers to someone else after LINX would be helpful? Wouldn't comparing my own numbers before and after be more logical?

Says DeMeester Score - Day 1 - 19.9, Day 2 - 12.3, Total - 17.7

Day 2 I ate "safely".. I knew I was driving 10 hours the next day and didn't want to be in pain lol

Day 1
Fraction Time pH < 4 - 4.5
Number of Refluxes - 60
Number of Long Refluxes > 5 - 3
Duration of longest reflux - 15
Duration - 22:20

Day 2
Fraction Time pH < 4 - 3.9
Number of Refluxes - 45
Number of Long Refluxes > 5 - 2
Duration of longest reflux - 6
Duration - 21:45

TOTAL
Fraction Time pH < 4 - 4.2
Number of Refluxes - 105
Number of Long Refluxes > 5 - 5
Duration of longest reflux - 15
Duration - 1d, 20:05
Posted 1/4/2013 4:12 PM (GMT 0)
Hello NoDoubtLove - just wondering how you're doing and if you got your results? I hope you're doing ok.
Posted 1/4/2013 5:20 PM (GMT 0)
incontrol23 - Thanks! Check the 2nd page :)
Posted 1/5/2013 10:40 PM (GMT 0)
Hi NoDoubtLove!

I just happened to come across your post, and I started to read it. I see that the surgeon you met with is Dr. Tanigantes (something like that :) ). Anyway, that is the exact same surgeon that is trying to get me to have the LINX surgery done!!! He actually called me (not the nurse, the front desk people, but him) shortly after I sent in all my past GI records, in August. He sounds so nice and so very caring! He really wants to help me. He also told me the dangers of being on PPI's for so long, and he can't believe the high dose I'm on. I'm on 80 MG of Aciphex/day along with 20 MG of Famoditine before bed. I never met such a caring doctor/surgeon.

I have not met with him yet. The last I heard is that he is/was going to do a peer to peer review with my insurance company, because initially they said it was "experimental," so they don't want to cover it. I have Humana. Another issue is, is that either the surgeon is out of network and the hospital is in network, or the other way around.

I never asked him how many LINX surgery's he's done, but I'm glad you that mentioned it. I'm also glad you mentioned the best and worst case scenarios.

I've been trying to have this surgery since August. Prior to that, since June, I was looking into having the NF. However, due to my swallowing results from the swallowing test (whatever it's called; can't remember), I have 4/10 swallows that are bad. Apparently, the NF could cause it to where I may not be able to swallow at all, and would have to be on a liquid diet for the rest of my life. I'm only 29 years old. I don't want that to be the case!

So what is the next step for you and this surgery?

It's awesome to find someone whose on the way to having this surgery, but let alone meet someone who is having the surgeon that I may have.

Keep us updated! :)

RGR
Posted 1/6/2013 1:12 AM (GMT 0)
RGR - Such a small world! Sounds like you are going through the whole circus too :/

When I first went and saw him, I was honestly shocked at how caring he is. He answered every question I had and didn't make me feel like I was bothering him. He's very passionate and knowledgable about GERD. I know PPI's aren't something you are supposed to take for years, let alone a life time!

Are you planning on going to meet with him? Do you live close to Mount Vernon? I hate that it's 3 hours from me, but after reading other stories on here, people have flown to other countries for LINX. I realize I'm lucky to have the best just 3 hours north :)

I know he had mentioned some sort of meeting with insurance companies (don't know if it was just United Healthcare) in Feb about LINX. He said his last 2 LINX patients had United Healthcare, so he seemed to think everything would be fine (cross your fingers!). I hope you can get your situation fixed. I know others have paid out of pocket for LINX, so even if your insurance only covers part of it - that could be great! Hopefully they'd even cover that much LOL I feel like insurance is such a scam :(

On the swallowing test I had 1 failure, I don't really remember what all that means? And being on a liquid diet is not an option for a functional every day life!

Right now I'm waiting for him to get back with me to see if United Healthcare will cover LINX. It is in pre-approval state right now. After they approve it, I'll get LINX on January 15th. If they do not approve it then Nissen. I may wait until that Feb meeting he has to see if there is anymore headway with UH and LINX. I don't want Nissen. LINX is more logical to me.
Posted 1/6/2013 9:00 PM (GMT 0)
NoDoubtLove,

It's awesome that he sounds like he is just as nice and caring as he seemed on the phone with me. Always a good thing!

I don't have plans on meeting with him. I live at least 12 hours away from Mount Vernon. This is the third closest hospital that would do the LINX on me. One was in my state, but they didn't want to. So this would be a travel... well I hope at least to get to make that travel and have the surgery.

January 15th is coming very soon! I hope they approve it for you, so you don't have to have the very invasive NF surgery. I have my fingers crossed for you! I'm in a NF group on Facebook, and I read a lot of stories with only a few good ones. Even though it's more severe of a surgery (the NF), I wish that was an option for me. In case my insurance doesn't want to cover the LINX. But I really hope they do. I don't have a job nor any money. I'll be starting up my last semester in college this week. So yeah.

I'm hoping to hear back from Dr. T soon!
Posted 1/7/2013 8:02 PM (GMT 0)
I called the hospital to see how things are going. She said my insurance has a 3rd company they use and she hopes to have answers tomorrow. She was going through the past United Healthcare patients and it sounds like they've all gone through, but some have gotten denied at first.

Let's hope mine goes through right away!!

RGR - Good luck with it. I'll let you know everything I think of him and the procedure as it goes :) So far he's great!
Posted 1/7/2013 10:07 PM (GMT 0)
I have my fingers crossed for you!

Thanks for keeping me updated! :)
Posted 1/8/2013 12:48 AM (GMT 0)
NoDoubtLove:

After I having all the tests, I'm really considering surgery, most likely the Linx if it's approved for me. I have United healthcare too, so I hope so! I've tried every PPI there is and still have major reflux :( Were you on many PPIs? I think I've built up a tolerance to them. I go to see a specialist at UCLA this Friday to talk to him about everything and get some tests ordered. I've had enough of this crap! It's been going on for 5 years (13 years altogether, PPIs once got rid of all heartburn). Maybe my condition worsened, who knows.

I'm hoping they approve it for you! You said that some of the approvals were denied at first? Do you mean that it went through a second time? I really hope that the Linx is an option for me. I'm scared of the Nissen :(

Please keep me updated once you find out! January 15th, that is the surgery day? Do you know how much the Linx costs?

I'm thinking of you :)
- Crystal
Posted 1/8/2013 1:39 AM (GMT 0)
Hi Crystal,
Are you getting the LINX at UCLA? I live in So. Cal and I might want to consult with a dr. I now have bile reflux after having my gb removed 4 yrs ago. I also have a hiatal hernia and horrible reflux into my throat. I have gastritis also. I may not be a candidate but I would love to see if there is a chance. I can't live like this anymore. :-(
Liz
Posted 1/8/2013 1:39 AM (GMT 0)
Hi NDL,
I will be thinking of you and hoping your procedure goes great!
I will look forward to your updates.
Liz
Posted 1/8/2013 9:28 AM (GMT 0)
Guys, was the swallowing test you mentioned part of the barium swallow? When will they fail you? When something actually stuck?
Posted 1/8/2013 3:24 PM (GMT 0)
shrtcke81 - I have been on Aciphex, Nexium, PrevAcid, Dexliant, Prilosec, Zegerid and Amitriptyline. The PrevAcid and Nexium seemed to work the best. I had a horrible reaction to Dexliant - but I have heard it's great for others. Since the tests (bravo, mobility, endoscopy) I stopped the PrevAcid (was on 60mg a day) and have been eating Tums, Pepto and Zantac 150 like crazy. I should go back on the PrevAcid I guess, but I'm scared I will start it again, stop after surgery and get rebound reflux. On the other hand I'm scared I'm eroding my esophagus currently. The surgery can't come fast enough! One week from today (as long as insurance comes back and says yes!)

The one that got denied at first did get resubmitted and then approved. She said both that one and the approved patient were in August. Same month, same insurance but one was approved instantly while the other denied then approved. She said she has no idea the rhyme or reason :/ They do seem confident that mine will get approved. I am really scared of Nissen too! That part apparently did get approved for me. The surgeon runs it through as LINX as the first option and Nissen as a fall back. Then when they approve Nissen he asks them why they approved that one but not LINX, that Nissen is more invasive than LINX. Then they approve LINX.

I asked her the overall price and she said all she can see right there is the surgeon's fee is $2,500 for his part, that doesn't include the device, anesthesia, hospital, etc.

Liz V. Thank you very much! I'm going to try to force myself to keep a daily journal/update of everything :)

33333 - The swallowing test I'm talking about is the manometry (en.wikipedia.org/wiki/Esophageal_motility_study). I know you have to have certain results from this test to quality for LINX. My lower esophageal muscle doesn't function at all. He said the rest of the test shows I'd be able to swallow food correctly and it would work well with the LINX. I had a barium swallow done back in 2005, but not recently or as a prerequisite for LINX.

As far as I know, for LINX you have to have these 3 tests done to see if you qualify:
1. Endoscopy
2. 48 hour pH Bravo Capsule Study
3. Manometry (Escophgeal Motility Study)
Posted 1/9/2013 1:32 AM (GMT 0)
NDL,

Oh I had the manometry. It said I had mild impairment of esophagus mobility, 50% ineffectual peristalsis. My GI didn't say whether this is a "failing score". The surgeon who I spoke to was a apprehensive to offer me a fundo because of the potential swallowing problem post op.

Sounds like I failed! ha
Posted 1/9/2013 2:25 AM (GMT 0)

33333 said...
NDL,

Oh I had the manometry. It said I had mild impairment of esophagus mobility, 50% ineffectual peristalsis. My GI didn't say whether this is a "failing score". The surgeon who I spoke to was a apprehensive to offer me a fundo because of the potential swallowing problem post op.

Sounds like I failed! ha

Oh apparently :( I'm not sure what is good or bad? I know I did 10 swallows and 1 failed. I don't really know how to read the manometry test?! Someone else on here might? The dr told me what it all meant but there was so much information that I forgot a lot ... just remembered key points!

I hope it's something you can still get. No one should ever have to live with this!

I'm getting SO excited that I'm getting surgery soon. I hope so much that LINX goes through. It's 1 week from today. It blows my mind to think I am on a REAL road to recovery! I was fighting doctors for so long!
Posted 1/9/2013 3:14 AM (GMT 0)
I really hope you get approved! You sound like my twin!! I've been going through this for years - way too long on PPIs, afraid of what my bone density looks like at 31! I want to stop them, but am so afraid of the rebound! If I miss a dose at the right time of day, I start to get rebound. Even when I rotate the PPIs :( Currently on Aciphex since Prevacid stopped working. Have had really bad rebound for a couple days until it was working a bit, but I still have constant burning in my throat! How about you? I've never had chest pain, only burning in my upper abdomen and upper esophagus. I can totally relate, no one should live like this! I hate it when people are like, it's just heartburn - are you serious! Yea i'd like to see them live with a burning throat every single day. Do you have indigestion too? It always feels like food it sitting in my esophagus and takes a while to go down and burns when I swallow. It feels like I can burp it right back up, but I never do. Same for you?

I hope that I don't fail the manometry test! What does a fail even mean? I wonder what my motility is like. And the Bravo better show I have reflux. I wonder if the doc will have me do it off or on PPIs.

Well so far things look good with UHC! You better get approved! I'm routing for you:) If it isn't approved, will you get the Nissen? Only one week from today?? Wow, that is coming fast, and you will feel so much better!
Posted 1/9/2013 3:42 AM (GMT 0)
shrtcak81,

"Yea i'd like to see them live with a burning throat every single day."

How evil! But I had similar thoughts! Give them a 3 month burning throat trial so they will have a true idea of what we are going through.

I know I am bad! ha
Posted 1/9/2013 4:45 AM (GMT 0)
Oh and I also have a sour taste constantly in my mouth and have difficulty swallowing. I just ate some bread and it was hurting really bad going down. I think I was having a spasm, sharp pain! :( Stupid GERD!
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