Gerdhater Linx Journal

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gerd_hater
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Date Joined Oct 2012
Total Posts : 321
   Posted 2/5/2013 6:53 PM (GMT -6)   

Day 4 and Day 5
Feb 3 and 4 2013


Sorry had been away from the computer. I have taken a few weeks off work and am taking it easy.

Reflux - So far, I don't think I have been having anything other than minor reflux from time to time. I am however pushing the Linx by eating decent sized portions. I am on 40 mg Nexium once a day and will taper in a couple of days to 20 mg. Prior to surgery I had been taking 40 mg x 2 daily.

Swallowing - is becoming more noticeable which means when I swallow I know before and after it passes the barrier. It is not very uncomfortable and is something you get used to. It is by no means worrisome especially since we all know that it is expected to get worse, peak at 6 weeks (as told by Dr. Lipham) and get back to normal. I still eat at a good pace and I am not even following the chew swallow pause mantra religiously instead trying to keep eating as close to normal as possible.

Breathing is still the same - no major improvement. However, I am happy to report that I don't seem to be waking up with the same amount of nose block after sleeping. I have been sleeping almost straight after dinner.

Sleep - I still wake up earlyish, but I feel a bit more refreshed than before. When I wake up, I don't feel like I am gasping like I used to - but it is still some kind of shortness of breath. It is hard to explain but it used to be this plus gasping prior to surgery.

Cough - I did not have major cough although I feel like I cough occasionally these days - which I *think* is a good sign because previously my coughing reflex might have been suppressed and it is being restored [Too much speculation perhaps but I like hypotheses!]

Hiccups - Hiccups still cause the most discomfort - each hiccup can last for 2 secs at max - but it is a sharp pain. They happen most often after eating. I would say about 10 per day roughly.

Sorethroat - I have had chronic mild sore throat and that hasn't improved in the last 1 week.

Others - Wounds are not yet itching. No major discomfort moving around. There is may be a little bit of bloat - I've noticed that my diaphragm area seems to be larger and rounder.

Overall, unremarkable really. I do have a reasonably high tolerance for pain and so far it has not been particularly painful.

GH

tick
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/5/2013 8:08 PM (GMT -6)   
Hi Everyone!
I am new to the conversation. I am considering the Linx procedure and want to read the progress of people who have had it. I have been told I am canidate for the procedure ,I have been on protonix for 7 years and want to get off it.I tried lowing my dosage from 40mg to 20mg and had a bad rebound effect which cause to much acid in my stomach which caused irritation to my Vagus nerve. This was horrible it woke me in the middle of the night with terrible heart palpitations ,my blood pressure hit the roof and none of the doctors could figure out what was wrong . I was scared and frustrated not knowing what was causing it so I went on line and found out that there were other people who experiencing it and that is how I found out! Any way tried of dealing with the drugs I started my journey to find another solution and I saw on TV news the announcement for the procedure at Mass general Hospital in Boston Ma.I have had the esophigias motility test anf they told me I am a candidate so I am here to see how people who have had the surgery are doing?

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/5/2013 8:23 PM (GMT -6)   
I got the operative note today and it mentions using the endoFLIP device for measuring LES characteristics (although it doesn't tell me what those characteristics were)

http://www.crospon.com/UpperGIImaging.htm

Interesting info about the graph of distensibility (laxness) of LES against pressure. Mine was getting wide open with very little pressure I presume.

I will report if I can get them to give me more details of the measurements.

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/5/2013 9:00 PM (GMT -6)   

Day 6
Feb 5 2013


Today was my first real "warning" moment. I just finished dinner where I had food get stuck. I was eating bread with egg curry. I felt food backing up a little bit and I first stopped eating and quickly had a few sips of water. There was significant pain for 10 secs before it all settled down and things returned to normal. I started eating a little bit slower and did not notice any further issues.

Also, so far, I've had no particular swalling problems with rice (others including justpassingthrough (JPT) had problems with it in the first few weeks) and shoulder pain has gone completely.

I am starting to notice a pattern of reflux associated with hiccups. It has probably always been thus in my case, but the strength of the hiccup seems to force open the Linx and brings a little bit of reflux (I can feel based on temperature) which quickly goes down.

When I say hiccup, it is not the usual hiccup associated with a sound. I feel a strong upward push at the LES level which "dissipates" by the time it reaches the throat.

GH

Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294
   Posted 2/6/2013 7:53 AM (GMT -6)   
Hi GH,
 
Thanks for your comprehensive posts, especially the link on the EndoFlip. :)
 
Did Dr. Lipham recommend anyone in the NYC area to follow-up with, or just by telephone?
 
It would seem to me that you have a bunch of things going on and only time will tell. I am glad that the shoulder pain has gone but the hiccups are a mystery to me - did you have them pre-op?
 
As for the swallowing, anything dry will probably get stuck - I have this problem for many years and have not had any surgery yet. Even a potato chip can be a real pain for me but when taken with a bit of onion dip (which adds the moisture for swallowing,) I am just fine.
 
Would soft and moist food be better for you at this point, until you get past the peak of Dysphagia?
 
Best,
 
Gastricman

Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294
   Posted 2/6/2013 8:06 AM (GMT -6)   
Hi tick,

Welcome to the HealingWell forum!

I too am considering the LINX procedure. I know of Dr. Rattner at MGH in Boston, but have not been able to get any feedback on him just yet. I too was on Protonix 40 Mg BID (total 80 Mg/day) for 7+ years before it caused me problems, such as losing it's effectiveness and making me predisposed to nasty gastric infections. I am now on Dexilant 60/mg a day (maximum dose) which is decent but not perfect - it is the last stage PPI before surgery. You might wish to ask your MD about it.

Personally, I am waiting for someone in the NYC area (where I live) so if there are any problems I can have someone local (if the person is good, of course.) The persona of the surgeons who perform the LINX, as with other MD's, is an important point, since you want them to easily communicate with you.

You can also visit the personal LINX Journal of NoDoubtLove:
 
 
Please also check out the general thread of the LINX club:

http://www.healingwell.com/community/default.aspx?f=45&m=2622256

I'm sure that you will find quite a bit of additional, quality information there.

Hope this helps.

Kind regards,

Gastricman :-)
 
P.S. If your were prescribed the PPI, I suggest to not go off of it. Speak with your MD about the situation, otherwise you might develop an esophageal stricture, which is not pleasant.
 
Maybe you need another PPI for right now (i.e. Dexilant.) as a bridge to surgery.

Post Edited (Gastricman) : 2/6/2013 6:15:29 AM (GMT-7)


NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 2/6/2013 3:39 PM (GMT -6)   
gerd_hater said...

Day 6
Feb 5 2013


Today was my first real "warning" moment. I just finished dinner where I had food get stuck. I was eating bread with egg curry. I felt food backing up a little bit and I first stopped eating and quickly had a few sips of water. There was significant pain for 10 secs before it all settled down and things returned to normal. I started eating a little bit slower and did not notice any further issues.

Also, so far, I've had no particular swalling problems with rice (others including justpassingthrough (JPT) had problems with it in the first few weeks) and shoulder pain has gone completely.

I am starting to notice a pattern of reflux associated with hiccups. It has probably always been thus in my case, but the strength of the hiccup seems to force open the Linx and brings a little bit of reflux (I can feel based on temperature) which quickly goes down.

When I say hiccup, it is not the usual hiccup associated with a sound. I feel a strong upward push at the LES level which "dissipates" by the time it reaches the throat.

GH


The stuck issue can be awkward feeling and painful but like you said, it goes away quickly. Although - in that moment it feels like forever when it's try to pass the LINX!

I know the "hiccup" you are talking about. I've had a few random ones of those (mainly when I eat super spicy or carbonated drinks). When I get it, I can feel the pressure of the LINX for a second but then it goes away. I don't have the reflux come up though, not that I noticed.

But overall you are seeing the benefits and feeling better right?

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/6/2013 8:59 PM (GMT -6)   
Doctor's office got back to me on Endoflip.

This is the picture /docs.google.com/file/d/0Bx00OacqzWQKZ0ZaWllyeW5SSGs/edit?usp=sharing

From what I understood based on www.youtube.com/watch?v=a-L2wCH3P4o :

Think of the picture as the "shape" of the esophagus around the LES region (a 2d projection of a radially symmetric structure for those technically inclined). The color coded values represent the diameter of the esophagus in mm. Balloon pressure at the bottom indicates the amount of pressure being produced from the stomach (I think). I don't know the significance of volume being 30 ml and if it is independent of the pressure reading.

BEFORE surgery, at 14:48, a pressure of 14.2 mmHg was sufficient to produce a distension of 11 mm at the narrowest part of the LES, which is considered "wide open" (I think) and correlates well with my endoscopy showing a big opening at the LES.

AFTER surgery, at 15:12, a pressure of 22 mmHg produced only a distension of 7 mm at the narrowest part of the LES, which Dr. Lipham told me is where you want it to be.

So, this picture is what Linx achieves.

Endoflip seems a very nice tool for use in surgeries, especially Nissen to measure how tight the wrap is intraoperatively.

GH

Post Edited (gerd_hater) : 2/6/2013 7:03:26 PM (GMT-7)


gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/6/2013 9:13 PM (GMT -6)   

Day 7
Feb 6 2013


Today morning was the hardest yet with pancakes proving difficult to get through (they were not as soft as they were supposed to be).

Chewing thoroughly takes it close to normal and I learnt to Chew Swallow Pause :) Still not majorly difficult.
I am beginning to eat a lot more than usual as well and serious weight gain is just around the corner.

No other interesting changes to report from yesterday. I've forgotten about the incisions except when they remind themselves when I bend or when in the shower.

GH

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/6/2013 9:48 PM (GMT -6)   
NoDoubtLove

You are right about the stuck situation. It can be horrible in the worst case ! I *think* hiccups are happening less often and I *think* the reflux has become much better ! I am still on PPIs, so I can't say for sure but just from my observations, it seems to be happening only occasionally. And yeah, I've been overloading the Linx with big meals in the name of testing and exercising it, and I am happy with what it is able to handle so far :)

The main criterion for me is breathing and I know it is not necessarily fixable - the body *may* heal itself or it may not even if Linx is working perfectly. So, I am not declaring success yet. Linx however *might* be doing its job perfectly. I want to wait until complete PPI cessation before I know for sure.

GH

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 2/7/2013 8:22 AM (GMT -6)   
gerd_hater said...

I am beginning to eat a lot more than usual as well and serious weight gain is just around the corner.


This is what I'm waiting for too LOL I checked today and I haven't gained any weight... I think my scale is broken because I've been eating like a mad woman!!

It's so nice to have people to talk to that are going through the same thing!

Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294
   Posted 2/7/2013 8:23 AM (GMT -6)   
Hi GH,
 
The EndoFlip, in my opinion, is a perfect complement to the Linx surgery as it determines the new pressure of the LES after the Linx device is installed. So the million dollar question is - who offers it besides USC Keck as an adjunct. 
 
I would like to think that the EndoFlip  would be a standard porcedure, but cannot ascertain the number of Linx surgeons worldwide (focus on the USA) who are using this tool.
 
Have any studies been done to see if the Linx with EndoFlip has an advantage over those surgeries without?
 
Best,
 
Gastricman

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/7/2013 8:31 AM (GMT -6)   
Gastricman: I probably don't have time to dig into EndoFlip - I might've if I had known it before Linx but not so much now :-P
But, if you do end up researching (I usually just Google until I am satisfied), do let us know !

NoDoubtLove: You are right, but don't worry - you can exercise any of those extra pounds away in a few weeks :) Just the freedom for heartburn gives you new energy, doesn't it ?

GH

Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294
   Posted 2/7/2013 8:45 AM (GMT -6)   
GH,

One thing that makes me curious is the approximate age range of Linx patients.
Is there a better outcome at at certain age range?

Gastricman

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 2/7/2013 8:54 AM (GMT -6)   
gerd_hater said...

NoDoubtLove: You are right, but don't worry - you can exercise any of those extra pounds away in a few weeks :) Just the freedom for heartburn gives you new energy, doesn't it ?

GH


Actually yes, now that I'm not sore anymore I do have lots more energy! I need to get over this sinus cold and I'll be golden. I want to start working out more or being more active. The heartburn controlled my life since July so I am feeling I need to get out and move!! I just wish spring/summer could come faster - this cold weather is making it hard to want to go outside!

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/7/2013 10:44 PM (GMT -6)   

Day 8
Feb 7 2013


No major changes since yesterday. Eating and drinking slowly to avoid backing up.
Hiccups are not as painful anymore. I have already gained a few pounds I am sure.

Nexium down to 20 mg in the morning. Plan to keep it there for 2 weeks before I stop it.

GH

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/7/2013 10:46 PM (GMT -6)   
NoDoubtLove said...

This is what I'm waiting for too LOL I checked today and I haven't gained any weight... I think my scale is broken because I've been eating like a mad woman!!

It's so nice to have people to talk to that are going through the same thing!


What's the secret for the no weight-gain ? tongue

Seriously, you must be enjoying not being called "picky" again :)

One question, can you belch fine ? Have you tried any carbonated drinks so far ?

GH

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 2/8/2013 8:40 AM (GMT -6)   
gerd_hater said...
NoDoubtLove said...

This is what I'm waiting for too LOL I checked today and I haven't gained any weight... I think my scale is broken because I've been eating like a mad woman!!

It's so nice to have people to talk to that are going through the same thing!


What's the secret for the no weight-gain ? tongue

Seriously, you must be enjoying not being called "picky" again :)

One question, can you belch fine ? Have you tried any carbonated drinks so far ?

GH

Well, maybe I lied LOL today I was up 3 pounds... probably that Smashburger meal. I had a cheese burger with fried onion straws, fried banana peppers, ranch, mayo and then a side of fried pickles LOL It was delicious though!!

I feel so much better not being "picky" I always felt like such a jerk ordering food!!

The belching is slowly coming around. I have had sparkling water which has carbonation but it just makes me feel bloated so I haven't tried it again. I don't drink soda and I'm waiting on beer because of the bloat feeling.

HONEYBADGER
New Member


Date Joined Apr 2012
Total Posts : 15
   Posted 2/9/2013 4:14 AM (GMT -6)   
Have you received your explanation of benefits from your insurance company yet?  I talked to another patient who thought their insurance was going to cover the procedure only to receive a notice a few weeks after the procedure denying a substantial amount of the bill.  I have an appointment with Dr. Lipham in a few weeks for a consult.  Was wondering how much of the bill I can expect to pay out of pocket if I end up having the procedure.

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/10/2013 3:37 PM (GMT -6)   

Day 11
Feb 10 2013


Swallowing noticeably harder. Rice is especially tough and does pain on the way down.
NO change in breathing.
Nexium down to 20 mg once in the morning. To continue for two weeks.

GH

RGR
Regular Member


Date Joined Jan 2013
Total Posts : 34
   Posted 2/10/2013 5:09 PM (GMT -6)   
Hi Tick,

If you are on Facebook, please join the group called LINX Surgery. The link is: https://www.facebook.com/groups/201278776669716/

I am the admin. A few members in this forum are in the Facebook group. I am also interested in having the LINX. The surgeon/hospital is working with my insurance, however I probably would not be able to have the surgery until Spring, since I am in college and doing an internship.

RGR

RGR
Regular Member


Date Joined Jan 2013
Total Posts : 34
   Posted 2/10/2013 5:10 PM (GMT -6)   
I forgot to add this before I hit submit, but anyone is welcome to join the LINX Surgery group on Facebook.

The more the merrier. :)

RGR

https://www.facebook.com/groups/201278776669716/

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 2/11/2013 8:55 AM (GMT -6)   
HONEYBADGER said...
Have you received your explanation of benefits from your insurance company yet? I talked to another patient who thought their insurance was going to cover the procedure only to receive a notice a few weeks after the procedure denying a substantial amount of the bill. I have an appointment with Dr. Lipham in a few weeks for a consult. Was wondering how much of the bill I can expect to pay out of pocket if I end up having the procedure.


I just checked www.myuhc.com (United Healthcare) and the full bill was $24,940.91 for everything (besides testing). I owe $2,046.91 - so it appears they covered it :) I'm so relieved. I'm going to post the break down in my journal: www.healingwell.com/community/default.aspx?f=45&m=2616398

Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294
   Posted 2/11/2013 10:28 AM (GMT -6)   
Hi GH,
 
Read your Day 11 post.
 
What might be going on here? I'm a bit concerned, to say the least.
Are you going to contact Dr. Lipham?
 
Gastricman

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 2/11/2013 10:35 AM (GMT -6)   
Gastricman,

Nothing to worry. In fact, I am relieved. Long term success of Linx is well correlated with early dysphagia from my research.

The body wraps the Linx in scar tissue. And it becomes critically important to keep forcing food through it because you want the tissue around the Linx to be not so tight eventually.

I can eat as long as I chew well and take small bites. But, habits are hard to change...

GH
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