Going for the LINX procedure!!

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Beargirl
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Date Joined May 2011
Total Posts : 44
   Posted 6/3/2011 10:23 AM (GMT -6)   
Hi All,
Further to my post about LINX information, I thought I'd update on my progress.

I saw Dr. Ashton a couple of weeks ago & he went through everything with me. Then I had to get copies of my Manometry & ph studies for him to look at. I got a call last week to say they were happy to go ahead with the procedure if that's what I wanted.

Having had quite a lot of time to think it through, I said yes straight away, & am booked in for the procedure on June 25th!! I'm pretty nervous about it - not so much the surgery, but the recovery & will it work long term. Just have to put my faith in the device & in Prof Faveretti who seems to be one of the best in Europe. My Doc said I should think about being one of the first 100 to have this done rather than one of the first 10 or so, but a) I don't want to put up with this problem if I don't have to; & b) this way I'm getting a really good surgeon.

So here goes!! Will keep you up to date on how things go.

Lovely day here - hope as nice for everyone else & hope you're all as well as you can be.

Jan

PH Fan
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Date Joined Dec 2009
Total Posts : 88
   Posted 6/3/2011 12:08 PM (GMT -6)   
Goodluck Beargirl, please keep us updated.

dencha
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Date Joined Feb 2009
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   Posted 6/3/2011 2:14 PM (GMT -6)   
Hi Jan,

It must feel good just to have made the decision! It's not an easy decision to make, and once it is made, it's a relief!

How long has the LINX been around? Are you saying that you will be one of the very first 10 people to have the device implanted? Where are you having it done?

I wish you the very best of luck! We'll be here to support and encourage both before and after surgery. yeah yeah yeah

Take care,
Denise

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 6/3/2011 3:39 PM (GMT -6)   
I saw on another post you were having a MRI done on your shoulder after the surgery.
The Linx is made up of magnets. You can not get an MRI with this surgery.
I'd talk some more with the surgeon.
Joy

Jeronimo
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Date Joined Apr 2011
Total Posts : 76
   Posted 6/3/2011 4:11 PM (GMT -6)   
You must check the MRI issue first very carefully. I am no specialist, but MRI works with magnets so having magnets and metal inside your body is no joke, the results can be devastating and deadly.

I already replied on the other post with an e-mail I received from LinuxRefluxSurgery.com:

"No, they are not working on a ‘non metal’ device. The device functions because of the magnets so this would not be possible.

It is possible that in the future the device, as it is, obtains an approval for use in MRI’s, but that is not the case today. If MRIs are of concern to you it would be unwise to proceed with a LINX procedure at the moment."

Here is a video so you know what happens when metal goes into an MRI:

www.youtube.com/watch?v=RZmGdHKt_lE

Once again, its highly deadly. Talk with MRI specialists and more doctors.

droper
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Date Joined Mar 2010
Total Posts : 56
   Posted 6/4/2011 12:31 AM (GMT -6)   
Well good luck first of all. Regardless of all this mri talk the device is removable if you so choose. Please give us all the details this is a new procedure and any detail you give about your experience would be great.

Sheila1366
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Date Joined Aug 2005
Total Posts : 384
   Posted 6/4/2011 6:45 AM (GMT -6)   
My daughter has to have MRI's and she has a shunt in her head with a magnet. After the MRI they just check to be sure the setting hasn't changed, which normally it doesn't. She does fine with MRI's.
 
Hope everything goes well.

stkitt
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Date Joined Apr 2007
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   Posted 6/4/2011 7:50 AM (GMT -6)   
A downside with the Linx - it is metal-  you cannot have an MRI. If you have something that requires an MRI you will have to get a different diagnostic test like a sophisticated CT Scan.
 
I wish you the best with your procedure.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
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Beargirl
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Date Joined May 2011
Total Posts : 44
   Posted 6/4/2011 2:25 PM (GMT -6)   
Hi All,

Thanks for all the kind support messages.

I'm not going to be one of the first 10 to be getting LINX, just one of the early ones here in the North of the U.K. Apparently 500 plus have been done in the U.S. & the 4yr studies are coming out soon still showing a satisfaction score of 87/89%.

Apparently Prof Faveretti specialises in Bariatric Surgery - specifically fitting Gastric Bands, & the LINX is fitted in a very similar place.

Dr. Ashton said recent tests on Pigs fitted with the LINX had undergone MRI with no ill-effects & it was considered safe to do them. I have, however sent him an email asking for something in writing to that effect, so we'll see what happens as I've been told I've got to have one on my shoulder & it won't be till after the LINX is put in. I won't have the MRI unless I'm completely happy it's safe.

Hope everyone doing o.k.

Jan

Jeronimo
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 6/4/2011 4:02 PM (GMT -6)   
Great! Let us know if you get some proof from your doc! I might get the LINX if I can save up for it and I probably will need MRIs in the future, so Im kind of in the same situation as you!

miketx
Regular Member


Date Joined Feb 2011
Total Posts : 46
   Posted 6/6/2011 12:46 PM (GMT -6)   
"Apparently 500 plus have been done in the U.S. & the 4yr studies are coming out soon still showing a satisfaction score of 87/89%."

If accurate, that's a remarkable statistic. The device would rival fundo in terms of effectiveness but would not require significant changes to the upper GI tract and could be reversed fairly easily if it were ineffective.

Raj2011
Regular Member


Date Joined Mar 2011
Total Posts : 64
   Posted 6/6/2011 12:51 PM (GMT -6)   
I am curious - if the device is not even approved in US yet, how could they have done 500 + in US ?

Raj

Jeronimo
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Date Joined Apr 2011
Total Posts : 76
   Posted 6/6/2011 2:26 PM (GMT -6)   
I dont know about the US, but they may refer to the trials, they might have done 500 as part of the trials.

In the UK it has been approved and anyone can have it.

miketx
Regular Member


Date Joined Feb 2011
Total Posts : 46
   Posted 6/6/2011 5:19 PM (GMT -6)   
I think the 500 refers to the trials. "Apparently 500 plus have been done in the U.S. & the 4yr studies are coming out soon still showing a satisfaction score of 87/89%." I took that to mean that the 4-year studies covered the 500+ procedures, but I could be wrong.

Beargirl
Regular Member


Date Joined May 2011
Total Posts : 44
   Posted 6/7/2011 2:23 PM (GMT -6)   
Hi All.

Well I heard back from Dr Ashton re MRIs & LINX. Torax (makers of LINX) are apparently saying that it's still in the testing phase but they are 99.9% sure it will be given the O.K. in months to come!!

Fortunately for me, my MRI appointment has come through for 5 days before my LINX date!!!!!!!

With regard to any other info I've given, I'm only going by what I've read in the media here in the U.K. & what Dr. Ashton has told me. Also what I've researched on the net & what I've gleaned from this site. I wasn't even aware that it wasn't licensed in the U.S, just that it was developed there & that's where all the trials were done. I do know that in the future the intention is to make it available on our National Health Service, but it probably won't be for a few years yet due to cost & training people in the procedure. I've now got to the stage where I'm not looking into it any further - decision made & sometimes you can over analyse things!!

Hope all well to-day.

Jan

Jeronimo
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 6/7/2011 5:51 PM (GMT -6)   
Well...thats good news!

But anyways, I hope they finish soon with the tests and publish the results because this way I and others can still consider the LINX device as an option.

I hope the procedure goes well, let us know! :-)

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/8/2011 5:56 AM (GMT -6)   
So, does this device work as well for "LPR" as it does for "GERD"? All the studies I've been reading are focussing on GERD and not LPR.

One of my conerns is - if the LPR is not that severe - but is causing quality of life issues though .. such as weak voice etc., then will this device still be able to hold back "all" backflow of the acid? Or, some acid will still trickle up to the throat?

So, the question is - how good is the linx device to arrest all acid backflow when the transient LES relaxations occur? Can it completely control such flow and therefore will heal the throat and make us completely LPR "symptom free" - or will it only "reduce" the LPR symptoms?

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/8/2011 11:27 AM (GMT -6)   
Beangirl -
- What kinds of symptoms do you have? Are they typical GERD or are they LPR symptoms as well?
- What kind of side effects did you have with the PPIs? I had terrible side effects myself - all related to the nervous system: dizziness, insomnia, light-headedness, leg nerve aches and so on ..

I am thinking of getting Linx as well .. however I am not certain if my somewhat (so far) minor LPR symptoms can be contained with this device or not. Further, that other guy who got it done in Italy (wolfz I believe) complaining about esophageal pain after 2 months or so.

Jeronimo
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 6/8/2011 12:11 PM (GMT -6)   
PPI-LESS, I believe that if you have GERD or LPR, there is one thing for sure: your LES (lower esophageal sphincter) isnt working. In LPR, as I understand it, means that your UES (upper esophageal sphincter) isnt working either. But the main problem is the LES, so thats what you have to fix.
You can also have silent LPR, which means that you dont have heartburns but you still have reflux coming right up to your throat, thats what I have. In this case you need to know for sure that what comes up is acid or bile. Thats why its important to have a manometry test and a phmetry test.

Im no expert, but thats how I understand it!

The LINX has a success of 85-90% but the results are based on short-term studies but yes, it could be a solution to our problem.

aciphexo
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Date Joined Apr 2011
Total Posts : 377
   Posted 6/8/2011 7:55 PM (GMT -6)   
Yes, I've got both the tests - manometry is normal with normal LES resting pressures and I have abnormal ph - about 62 upright reflux episodes - into the throat. So, I definitely have LPR. Now, the thing is - the LES probably just goes through transient relaxations .. so the the hope will be that the magnetic ring can hold these relaxations and arrest them essentially.

But .. I am concerned about the adverse reactions to having a foreign object in our bodies - esp. over the soft tissues of the esophagus - and what with some of these people complaining about pains after a few months.

I wish I could tolerate the PPIs ... since my plan was to heal up and then taper off of them .. but alas .. that never panned out .. so here I am ..

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/8/2011 8:02 PM (GMT -6)   
PPI-less,
Why are you not considerating the Nissen?
When it came time for me to chose I first wanted the least invasive (TIF),
When the surgeon evaluated me I discovered I was not a good cantidate for it. (too big of a HH)
I had heard horror stories about the nissen and was fearful of having the nissen.
He did a loose wrap (270 degrees) and I've never regretted doing the nissen.
Joy

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/9/2011 4:47 AM (GMT -6)   
Joy,
Yes, I am fearful of Nissen as well (as you were before yours). I don't think I can get a TIF since it involves taking the PPIs which I just can not. I am worried about: gas-bloating, dumping-syndrome and other such complications with Nissen.

Plus, at this time I am not sure if they'll even consider me as a candidate. How do I go about finding the best surgeon for Nissen (in the Boston area)?

Beargirl
Regular Member


Date Joined May 2011
Total Posts : 44
   Posted 6/9/2011 9:00 AM (GMT -6)   
Hi Everyone,

With regard to my GERD symptoms, almost constant Heartburn/pain under breastbone. Burping like you wouldn't believe!! Sometimes I sound like an animal roaring, (quite painful in my throat) sometimes it's just a huge burp which somewhat relieves the pain under my breastbone, & sometimes it's just a huge rush of air that comes out. My diaphram generally feels blown up & I get episodes of severe nausea. General feeling of constant tiredness. I do sleep with the bed propped up, but still occasionaly wake up tasting acid. Often in the mornings I get a sort of physical mild shaking as I get up. Once I've managed to burp a couple of times, everything calms down!! Weird eh!!!!
I think I have very mild symptoms of LPR
The main criteria for the LINX seems to be size of Hernia -2cms for me, & Manometry/ph reports. I have no idea what exactly determines yes or no.
PPI reactions. The worst for me was not being able to stay awake!! When I was awake & upright I felt soooooo sick. Had to force food into myself. Also felt totally spaced out. Finally the anxiety- started having panic attacks. That was truely horrible.
Jan

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2011 9:20 AM (GMT -6)   
PPI-less,
I had no gas bloating, no dumping syndrome, no complications whatsoever. I didn't even have the shoulder pains everyone says happens.
You do have some loose stools during the first week because of the liquid diet and surgery stress, but it's not a big deal.

After the surgery I had five little (small enough that a bandaid can cover) size cuts on my belly. They were a little tender to touch. My stomach was bruised inside, but the pain was mostly gone by day three. If it did hurt it was very mild. Your stomach will be swollen for about two weeks but you don't feel bloated.

If you have a weak LES and no major motility issues (the doctor determines this with testing) then you're a candidate.
Goggle the local hospitals for staff information. I'd chose a big hospital or teaching hospital with a bariatric surgeon with many years experience. Then go visit him and interview him.
Joy

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/9/2011 7:36 PM (GMT -6)   
So my LES resting pressures are normal and my motility is normal (manometry test normal) and no hiatal hernias etc. I am 42 years old male.

What I have are transient LES relaxations ... which is how this LPR manifests itself for me .. my pH readings in the throat were abnormal for LPR (50 or so while upright and 10 or so while supine) - ph readings in the esophagus were borderline normal (50 or so).

Not sure if I'll still be considered as a candidate for Nissen or not? Does Nissen only fix weak LES or does it also fix these transient relaxations of the LES as well ...
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