Gerdhater Linx Journal 2

Continuing www.healingwell.com/community/default.aspx?f=45&m=2630043 following forum guidelines on thread length.

Sorry haven't checked out this thread for some time now.

Day 52 update:

Reflux: Minor reflux especially when stretching on an overloaded stomach.
Breathing: Still no change (and hence tereible). Hoping that alkaline water shows up soon so I can start doing vapor breathing.
Swallowing: Is occasionally hard. Still possible to get into a stuck situation and cold water is best limited. I've been ordering warm water anytime I eat out.
Medication: Still on 40 mg Nexium.
Burping: This pattern is similar to what it used to be before, but I thought I should mention it anyhow. As far as I remember, I couldn't burp lying down. And most burping happens upon standing up from a sitting position. Burping in sitting position does happen but not that frequently. So, when gas forms and is ready to be burped out, it is indicated by some tightness. If you stand up, it is comfortable to burp it out. However, you may not notice the build up of gas. After the Linx, what I notice is that there is a massive burp, almost unwarned as soon as I get up from sitting position.

Insurance: I finally looked at the claims today that insurance sent me. My insurance is Blue Cross Blue Shield PPO, provided by Anthem. Here is the breakdown:

Claim, Billed, Paid, My responsibility
Anesthesia, 1530, 800, 147$
Surgery_overall 58K, 17K, 900$ [Includes drugs, recovery room, surgeon cost etc. Implant and Surgery were subitems with each billed at 19K. Implant claim paid by the insurance was 8K]

So, overall my responsibility is close to 1100$, which is fine.

Others: I am noticing that my throat function is impaired as well. I sometimes need to take two to three voluntary swallows just to get the food bolus completely down the throat into the esophagus. I guess there is significant damage. Given that my breathing is especially hard at night and is slightly better during the day, I am inclined to think that something is wrong in the upper airways. So, I am going to see an ENT for it.

Anyone has any good ENT suggestions around NYC? I have an appointment with DR. Michael Pittman at the NY Eye and Ear infirmary.

GH

Hi Sinfrontera (Could you explain the handle? its interesting :) )

I think I have a bunch of issues wrong with me making me an outlier. Still, let me try to reason:

(1) LES weakness - LINX is, IMHO, VERY good at addding pressure to the LES. If this is the only problem you have, Linx will probably work 90% of the time without major sideeffects

(2) UES weakness - LINX directly does not address this. But, in time UES may recover if LES does its job. I don't know if the data is sufficient yet.

(3) Throat/pharynx muscle weakness - This seems unique to me from what I've read. Usually one swallow forces the bolus through. I need multiple swallows, especially with crunchy, hard food particles, which tend to stick in the throat unless I swallow multiple times. So far, 2 months out, no change from the LINX and this continues to be a problem.

(4) Residual damage (like breathing problems) - Over the years, my breathing has progressively gotten worse to the point that I can no longer sleep a full night, EVER. Not with elevation, not with anything. This is the worst kind of torture known to mankind, me thinks. You are trying to fall asleep tired, but the body wakes you up gasping for air. It is not like there is any reflux... My lung capacity is down to 70% of normal and is considered as "mild restrictive lung disease" at this point. I struggle to breathe most of the time.

In summary,
if ONLY LES is weak, LINX success is 90%+ (my opinion)
if both LES and UES are weak, LINX COULD succeed given enough time (JPT for example)
Other problems, I am not so sure yet. I will update as I know more.

GH

Like I said previously, if it is only LES weakness (GERD with only heartburn and no extraesophageal symptoms), I think Linx is a 9/10.

It is unclear if my breathing symptoms are at this point related to continuing reflux or residual damage.

I would want to get a 24 hr test at some point, but I don't want to be off PPIs for a few months at least to give my lungs the best chance to recover.

GH

Also I have been to a lung specialist
and had X ray. The lung specialist
said my lungs were fine. So I personally think
somehow the acid causes the throat and
vocal cords to tighten causing difficulty breathing
and not necessarily lung damage. Even my ENT doctor
said even though I have severe inflamation, redness
and mucous in throat area my airways were fine

GH,

If your not feeling well and haven't had the desired
results with Linx do tell us. We are here to support you.

Don't give up hope.
Speak with your surgeon and do tell him your symptoms haven’t improved.
He should be able to give you better advice.

I have had LPR for last 10 years

I have similar problem inhaling and my lung volume is
decreased as well, every breath is a struggle.

The difficulty breathing is without a shadow of doubt caused by reflux, as I mentioned my breathing significantly improves even after 2 days of doubling my medication suggesting it might not entirely be lung damage even though I have had LPR for last 10 years. I am currently on 80mg Nexium so increasing to 160mg long term is not possible long term.

As the surgeons get a better understanding
of how linx works they might be able to tighten the Linx.

In the future you could go to a experienced NF,
someone who has done more than 1000 procedures
and I am sure he will be able to help you.
Don't see the future as bleak, I certainly don't
and my condition is same as yours. There are options.
Endostim has shown good results.

Nick

Hey, GH,

I'm not speaking from any position of medical authority, but don't discount the possibility of a long-term virtuous cycle developing from the fixing of the LES with LINX. As you know, one of the nefarious aspects of GERD is that it can spark a vicious cycle where the initial damage to the lower esophagus gets compounded by damage in other areas. If LINX has indeed helped with your GERD it may keep the acid where it belongs and give other parts of your system a break and the ability to heal and regenerate. I'm really hoping that his would include your breathing and lungs problems. If so, patience and faith in the passage of time is critical. I'm rooting for you.

SF

All,

Thanks for the support, appreciate it.

NICKUK,
I am not sure about Asthma vs decreased Lung volume. I've rarely read reports of decreased Lung volume in connection with GERD. DO you have any literature to show this connection ? I do know that GERD is one of the major conditions (sometimes even undiagnosed) associated with idiopathic pulmonary fibrosis.

Sinfrontera,
I am not ruling out a virtuous cycle but I think it requires little to no reflux after the Linx. I have to hope that I get to that stage with the Linx. From my research, anyone who has gotten better breathing has improved very soon after Linx/Nissen. Hence, I am not jumping up and down with hope at this point. Any improvement will be unexpected and nice :)

GH

Hi GH,

Could you please post an comprehensive update on your condition when you have a chance?
If you like I can also be reached by email in my profile.

Your case is complex and I still have so many questions. Thanks.

Feel better.

GM

I've recently gotten a sleep study which demonstrated apnea. I am yet to get my hands on the report.
In addition, I've been told that my tonsils are enlarged, by the sleep medicine doctor.

Going to see an ENT tomorrow. The last ENT I went to said everything was fine. Will update when I know more.

Hi GH,

I can't speak to the LINX, but I can tell you that my lung problems took about two and a half months to resolve after my NF.  The damage done didn't occur in 52 days, and the recovery from that damage will take time as well.  Don't give up hope that the lungs will heal given some more time.  Mine healed and have done great.

Of course it is always possible that some residual damage will remain, which would be understandable.  However, I can tell you that my lungs have been 100% better since my surgery.  Hopefully yours will be, too.  Just give them more time.

Best wishes,

Denise

A quick Linx update:

I am still refluxing despite the Linx. I am unable to quantify it but it is and uncomfortable amount of reflux some times.

Breathing is still very bad.

Dysphagia is mild now. I do get stuck occasionally but its more like once a day than twice a day from before. I feel it is on the trend down, but I still cannot let my guard down completely. Warm water to hand is useful.

Rhinitis still continuing although it seems to happen more with spicy food than otherwise.

There was a day of food poising recently and I threw up without issue. Not sure how a NF would have been, but it was nice to be able to throw up to feel better !

Otherwise unremarkable. I don't know what else to post as an update.

If you want to know about something specific, just ask here.

Gerd Hater,

When did you have the Linx implanted? Did you have the all the appropriate testing before the procedure?If so, based on the results of tests your GI and/or surgeon approved your Linx implatation?  Where did you have the procedure done? Were they able to give you some sort of answer why this is happening? Did they put enough beads on it?