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Sinfrontera LINX post op journal

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Posted 4/25/2013 2:22 PM (GMT 0)
Good luck, Benjamin. It's good you are exploring all options. That's far better than sitting and enduring the problem year after year and not living life to its fullest.
Posted 4/25/2013 2:34 PM (GMT 0)
Week 6 Post Op Report

This one will be short, because there is not a whole lot new stuff to report.

Dysphagia is evolving. I rarely have the LES shut-downs now, unless I forget myself and start eating voraciously. I've learned to eat slowly and in small amounts. The down-side for me is that I keep losing weight. I was not overweight when I had the surgery, and with GERD I had always had a problem eating and as a result was constantly fighting weight loss. Now people are telling me I'm getting gaunt again. I know this is a problem most people don't sympathize with, but I'd be happier packing in another thousand calories in a day.

The main problem is LES pain and rawness, sometimes accompanied by mild nausea and appetite loss. That continues. It also saps me of energy. The pattern, though is not constant. Some days I'm fine. Doctors say this is the healing process as the scar tissue keeps forming and it has to stretch out. The six week mark is supposed to be a turning point. I sure hope it is.

No ppi's after six weeks and no noticeable reflux. I do take gaviscon about once a day, but that's because it tends to soothe the rawness and helps with the nausea.

That's it for now.

Oh, one last thing. IT APPEARS THAT BLUE CROSS/BLUE SHIELD HAS PAID FOR THE ENTIRE PROCEDURE!! Minus all my deductibles, of course. The latest statements show them approving everything, including, it seems, the LINX implant itself. That is big news. Those of you who are battling Blue Cross, take note. I am told by my surgeon that Blue Cross in the upper midwest is a major trend setter for the company nation-wide. So this is a good precedent.

I will crunch all the numbers carefully and post everything very soon.
Posted 5/3/2013 5:28 AM (GMT 0)
sinfrontera,

I do have a good amount of schooling thus far and counting in the medical field (pre-med). I don't know if it will help you to hear this, but I figured it will be good to hear it from someone else. Your doctors are right. Your body is still healing, and it does sound like your body may take longer than most to heal around the LES. Every body has a different immune and trauma response. Just like you may get sick for a week and then your spouse or family may only get a cold from the "same" thing. Everyone responds differently to everything. It does sound like indeed your body is healing for the better, but it is obviously taking a long time and probably will continue to do so. I have worked with countless knee replacement patients, some walk with less pain than before after a week of surgery, some take WEEKS to a month or two before they reach no pain/less pain than before. Maybe you should consider taking carafate to aide in the healing. Since you said gaviscon is relieving you, it only makes sense there is irritation on the actual mucous membranes at the LES. Coating it in something that would adhere to any damaged or irritated tissue only makes sense. Or, go on the herb side and get DCL (it's a form of licorice that accomplishes the same thing as carafate). Check with MD or Pharmacist to see compatibility of drugs you are currently taking. Just my two cents, but if your not having reflux now, then it sounds like you have made the correct choice! :) BTW, did you have ear/nasal congestion before this surgery? I was reading a post a while back about a person suffering with LPR and they got the nissen and now their nasal passages are clear and they have "HD" smelling... haha! Hope everything goes well!

-Ben
Posted 5/4/2013 5:54 PM (GMT 0)
Ben,

Thanks VERY much for your thoughtful and informative post. It was good to see it laid out this way. I think I have taken a bit longer than most to get through the LES healing. Also, the lower esophagus and GI system was so ravaged by GERD that they often respond similarly to this 'trauma' as they did during GERD. But I am improving, and I notice the improvements day by day. The bad days are receding and good days are on the rise. I'll have to keep the next few weeks before entering a more asymptomatic phase.

I will definitely look into both carafate and DCL. Keeping the irritated parts of the LES coated on a regular basis is a good idea.

As to your question about ear/nasal congestion before surgery, I did have 'gustatory rhinitis' that would kick in whenever I ate, or when GERD was acting up. It was mainly nasal congestion and sneezing (no LPR or throat irritation). That has declined quite a bit, although when the irritation kicks up, I do notice some brief congestion or sniffling. Again, the surgery has definitely been successful in targetting the GERD-related stuff, both in the upper GI and lower GI. And all this without ppi's since surgery. So it seems this surgery was the right thing to do.
Posted 5/14/2013 8:35 PM (GMT 0)
That's wonderful to hear :) any new updates?!
Posted 5/27/2013 2:44 AM (GMT 0)
Hi Sinfrontera,

I hope you have turned a corner and are feeling better these days. I'm only 29, but I've been suffering with reflux for 8 years now (really bad for the last 4), and I have been seriously considering going through with the LINX procedure. I've been following your thread to see what I might expect for recovery, and I'm hoping to hear that your pain has subsided. Both my maternal grandfather and my paternal grandmother had strictures and each had to have their esophagus stretched (yikes!), so I know what I'm in for if I'm not proactive...

Anyway, I guess I'm just writing to say I hope all is well with you, and thank you for sharing your story.


GC
Posted 5/27/2013 2:47 AM (GMT 0)
Oh! One other question. I saw you write that your lower GI symptoms of bloating and indigestion seem to have improved since the procedure. I've had those same issues and have always wondered whether it was somehow related to my GERD... Has your doctor suggested anything with regards to their interconnectedness? If the LINX would ease my upper AND lower GI symptoms, than all the more reason...
Posted 6/12/2013 3:16 AM (GMT 0)
Hi Grovercat,

Sorry for the late reply, but I've been off this forum for a few weeks. Today is my 3-month anniversary since surgery. I can report a steady improvement. GERD is not an issue, and I've been off ppi's since surgery. I do still feel the linx around the esophagus, and have dysphagia issues, but nothing terrible. The burning pain I felt for many weeks has subsided. I usually don't feel it.

I still have to be cautious eating so food doesn't get stuck. That is supposed to get better as peristalsis gets stronger. I have noticed a couple of interesting things, though. Dysphagia is usually worse when I'm nervous. Stress has always tightened up my gut and stopped my appetite. But until now I didn't realize how centered it was on the LES (maybe that's why it took a beating over the years). Now when I'm tense about something it's hard to swallow. Not only is the LES tightened, but now it has that magnetic bracelet around it making it harder to open. When I'm relaxed I can eat quite comfortably. I haven't yet reached the stage of 'not feeling the linx at all,' but I'm working on it.

Also, yes, the lower GI symptoms of bloating and indigestion have improved. However, the second thing I've noticed is that my stomach produces a lot of acid. I had been diagnosed with gastritis some time ago, and a scope revealed inflammation in the stomach linings. Obviously stress-related, but probably just produces a lot. The linx has effectively stopped the acid from rising to the esophagus, which is wonderful. And less distress on the esophagus means less triggered distress lower in the GI system. However, excess acid production at times irritates the stomach and the lower GI. I deal with that problem very simply. I occasionally take an H2 blocker (pepcid) if I anticipate eating a lot or spicy food. H2 blockers are milder and faster acting than ppi's, and you can use them sporadically. I took pepcid for 10 days once a day to give the stomach lining a break, and then stopped taking it regularly. This controls the situation very well, and is far better than large daily doses of ppi's.

So linx is good for gerd, but does nothing for gastritis. However, thanks to not having gerd any more, I feel better overall and can deal better with the gastritis.
Posted 6/12/2013 10:23 PM (GMT 0)
Hi Sinfrontera,

It's great to see that you are steadily improving! It gives me hope :) I'm at almost 3 weeks now and still feel what I think is reflux, so I'm hoping it gets better! You felt burning for weeks? about how long? Did it feel like heartburn or reflux? I'm so worried. I have gastritis on and off as well. My stomach feels like it's burning a lot, especially when its empty. I haven't even quit my PPI's yet because I'm worried about how I'll feel. I get really bad rebound, so I guess we'll see. I'm going to wait until I feel a little better.
Posted 6/13/2013 12:03 AM (GMT 0)
Hi Shrtcak,

You are just at three weeks. You'll have to be patient! One thing that medical advocates of the linx surgery have overstated is the recovery speed after surgery. It's still an operation, and there is a lot of trauma your gut must recover from. You've probably heard this several times already, but it is said that the esophagus is a "dumb" organ--it interprets all distress as reflux. That was certainly the case with me. Post surgical burning felt like reflux, and it took some weeks for that to subside. Also, in most cases the linx device itself goes through several phases of hurting and not hurting, as tissue around it forms, tears with the opening and closing, and reforms. Eventually it gains elasticity and that particular burning subsides as well. I can say that now, three months out, the linx hurts no more.

So hang in there, don't jump to conclusions, and let your body heal and get used to the titanium bracelet.
Posted 6/13/2013 5:37 PM (GMT 0)
Thanks for the response, Sinfrontera! I'm really glad to hear you're feeling better. I know what you mean about the tension/nervousness thing. I get a spike in heartburn from the most minor and subconscious elevators of stress: running 2 minutes late for an appointment of little consequence is enough to do it to me now, so that makes sense that it would effect the swallowing with LINX.

I've been on Dexilant 60 mg now for about a week-- plus 2-3 max strength zantac, plus pepcid complete, plus Tums--with no relief in sight. This is my third trial PPI since things went haywire back in April, and I'm trying to decide how long to wait before moving forward with surgery. I think it would make the most sense to do it either at the end of August or in December (I'm a graduate student with a summer and winter break), and all things being equal, I'd rather wait longer to see if things will miraculously clear up again with the right PPi. However, I don't want to wait too long and cause myself damage.

I'm thinking I might have an endoscopy done in the next month to see if there's any damage or inflammation at the moment, and if so, go forward with surgery sooner rather than later, assuming the tests check out and I'm a candidate. Does that sound like a good plan?

Best,

GroverCat
Posted 6/24/2013 6:27 PM (GMT 0)
Hi Grovercat,

I haven't checked this forum for a couple of weeks, hence my late reply. Dexilant worked quite well for me when I took it, compared to other ppi's. My problem was that after a while ppi's lost effectiveness, and then it was another search for a bigger and better ppi.

You have to move at your own pace. I think you should keep trying non-surgical alternatives for a while, if anything to be absolutely sure, when the time comes, that surgery is the right thing. I knew that I had exhausted all alternatives. There was no doubt. Surgery was the only last hope I had to get relief. When I realized that, then it was a question of which surgery, linx or Nissen. I obviously went for Linx, and I'm really glad that I did.

If dexilant works, then try it for a while. I think that linx is probably a better lifetime scenario than decades of ppi use, but others disagree, including my gastroenterologist. Surgery is a serious matter, no matter how "non invasive" doctors say it is.
Posted 6/25/2013 8:49 PM (GMT 0)
Thank you Sinfrontera,

I'll keep trucking along with the Dexilant for a while longer and see if there are some other options to try in the meantime. Maybe carafate will help with things if my problem is bile reflux-- I see my doc again in about a week or so, and hopefully I she'll have some good ideas.

GC
Posted 12/11/2013 8:38 PM (GMT 0)
Hi Sinfrontera I'm also in Chicago area and was wondering how are you doing since I'm also interested in Linx. Thanks for your detailed journal it helps me so much to see that there is hope.
Posted 12/27/2013 4:19 PM (GMT 0)
Hi Anna,

I'm glad the journal was useful to you. Sorry for the late reply, but I haven't checked the forum for the last couple of weeks.

Have you talked to any doctors in the chicago area about Linx?

I'm 9.5 months post-op, and the bright side is that my GERD has been pretty much cured. That's a huge development. There have been a few downsides, although they pale in comparison to what I was going through before. The main downside is that I continue to feel the linx, and sometimes it hurts. Food also tends to get stuck after I eat, usually 5-10 percent of the food, and I either regurgitate undigested food for a long time or the LES gets very sore from having food there (and it doesn't get flushed down by water). My surgeon was baffled by this and had me get an EGD to see if there was any inflammation around the LES. During the EGD they also did a dilation, since they thought the cause might be that the tissue that healed around the linx healed too tightly.

The procedure was done last month, and the jury is still out. I still had pain for a while and the swallowing problems continued. However, I've noticed that, during the last three days, food has not been getting stuck, and I've had normal eating patterns. And that's during the holidays, when I've indulged with drink and foods that would have been a "no-no" before the Linx! So who knows, maybe the healing takes time.

The other downside is the absence of follow-up up I've been getting from my doctors. Surgeons often like to operate, but they are miserable as doctors (that is, medical professionals who actually monitor the progress of their patients and are curious about the healing success of their operations). But we can talk more about that later, if you are interested.

The bottom lines so far are that a) the linx does work, b) it is more traumatic than its boosters say it is--surgery is surgery, no matter how "non-invasive" it is, c) healing takes a long time (less than NF, but it's not inconsequential) d) healing goes through many stages, e) do your research on doctors, and ask questions about how systematic their follow-up protocols are and how invested they are in learning about the procedure's effects by monitoring their patients and, last but not least, f) life without GERD and without daily ppi's is really great.
Posted 12/27/2013 4:52 PM (GMT 0)
Hi Sinfrontera,

I'm finally on the list to get the LINX (once insurance goes through), and although I'm very excited, I've been worried about some of these lingering side effects that I've heard from you and others. Not that I think I have any better alternatives at this point, but I want to make sure I understand all of this going in.

Do you think that some food lingers down at the bottom because your swallowing contractions are thrown off towards the bottom due to scar tissue? How was your swallowing test pre- procedure?

When you say the device hurts, does it feel like chest pain from heartburn?

Did the EGD show any inflammation when they looked?

I know what you mean about surgeons and follow-up. Have you had luck contacting them and requesting investigative procedures on your own? Do you have to hound them to pay attention?

Thanks!

GC
Posted 12/28/2013 12:32 AM (GMT 0)
Hi GroverCat,

Congratulations on getting on the list! I do think it's a great idea. No procedure is perfect (despite some claims made by Torax and other Linx boosters), but I do think the Linx is the best thing out there. And I repeat, living with the Linx side effects for me is much much better than living with Gerd and constant medication. I am much stronger now, have much more energy, and am able to do things I had feared I'd never be able to do again. And besides, you may not have the side effects I've been experiencing. I have not heard from anybody who's experienced similar symptoms. If any of you out there have, please let me know.

I'm not sure why food sticks in the LES area. My preop swallowing was normal. Maybe the esophageal contractions aren't strong enough to open the Linx as they should... maybe the scar tissue (the "capsule") that formed around the Linx was too tight... nobody has given me an answer.

And I wish I could tell you whether they found inflammation during the EGD. They still haven't told me. The doctor who performed the endoscopy was gone when I woke up, and even though it's been three weeks since the procedure, they still have not told me. They took tissue from the LES area for biopsy, but I haven't heard about it. I've called them three times but don't get a response. My surgeon has not called for the results or contacted me. Incredible. It's time to throw a tantrum to get their attention.

I'm planning to call other surgeons who perform the Linx procedure to ask if they'd accept me as a patient for follow-up monitoring, because my surgeon is amazingly detached from the whole thing. He's friendly enough when I see him, but he's just not interested in follow-up (even though I was his second Linx patient!).


When I say the Linx hurts at times, I'm referring to a burning sensation--like it's irritated or raw. If I'm regurgitating undigested food for a long time (more than an hour) I get a bitter taste coming up. Sometimes it feels sore at the LES, sometimes in a wider area. This is episodic. Not constant. Tylenol (or sometimes Tramadol) handles it very well. The last three days I have not had symptoms, so this is something to monitor.

If I hear back anything interesting from the EGD, the dilation, or anything else after I throw my tantrum with my surgeon and get his attention I'll let you all know.
Posted 12/28/2013 4:38 AM (GMT 0)
Thank you Sinfrontera. I'm sorry you're having to wrangle with your surgeon's office. That kind of thing is beyond frustrating. I've been dealing with a host of medical issues over the last year, and only about one out of six of the doctors I'm seeing is any good at calling back.

I hope you get some answers soon. You deserve them, darnit! You're paying them for their services, after all, and as you say, you'd think they would express a little bit more curiosity at the very least.

Things may yet continue to get better as you heal. With any luck that dilation will have done the trick!
Posted 1/20/2014 3:27 PM (GMT 0)
Well, I finally got the surgeon and doctors to take a close look through a manometry test, and did not get good news.

My food back-ups into the esophagus are because the linx is actually below the LES. That means that there are two pressure points the food has to pass, the LES and the linx just below it. Food passes the LES, but peristalsis is not strong after it, and part of the food gets back up by the linx.

The doctors aren't sure why it's there. Maybe the surgeon put it there mistakenly (I was his second linx patient, even though he had performed 2000 Nissens and had was consulting with an experience linx surgeon). Maybe the linx migrated (that's what the surgeon claims). Maybe the posterior part of the linx is correctly held in place by the distal nerve but the anterior part has slipped down, resulting in a diagonal positioning. Maybe the surgeon mis-sized the linx and put it in too loosely. Maybe it's something about my anatomy.

In any case, the surgeon is now consulting with a specialist that developed the linx and they will explore options. None are attractive: a) continue the status quo and learn to live with managing the food backups--eat slowly and in small amounts at a time and bear with it. b) reposition the linx or resize it by removing a bead during surgery. The surgeon does not believe this can be done--repositioning gives no guarantee it'll stay there, and the surgeon does not believe that one can remove a bead surgically. c) replace the current linx with another one. d) remove the linx and go back to pre-linx life. e) move to a Nissen.

This really stinks. The linx has been fantastic in stopping the gerd. My life is immeasurably better now, and I can do things I never thought I'd do again. But the status quo, with this new problem, is not sustainable. I hate the idea of surgery again. And I absolutely will not do the Nissen. The only acceptable option for me is a solution via the linx. However, I don't know if they will deem it possible.

Time now to do some major research. I'm not going to depend on the incomplete knowledge of individual surgeons about this technique. I've written to Dr. Louie's blog asking whether he's seen this type of thing in his work and research. I'm going to consult other surgeons, even outside Chicago.

If any of you have knowledge of surgeons or specialists or sources of knowledge I can consult, please let me know! This forum is the best place to start looking.
Posted 1/20/2014 7:43 PM (GMT 0)
Hi Sinfrontera,

I'm new to the board but have been lurking for awhile, reading about the Linx as its something I've been considering. Thank you for your journal, it's very helpful to those of us who are interested in possibly having a Linx.

I was very shocked to read your post, what an awful situation for you to be in. I really hope that they find an acceptable solution for you. Hopefully the issue was that the surgeon placed it incorrectly, as at least that way presumably a replacement Linx fitted by another surgeon - who is very experienced with Linx - would fix the problem. Will they be able to determine what actually happened?

I think it's a very good idea to consult experts within the field for advice. Would it be worth contacting Dr Luigi Bonavina in Italy? He's extremely experienced with Linx, hasn't he performed it on 100+ people?

Also perhaps Dr De Meester might be worth contacting, he was a key advisor in the development of the Linx device and presented a speech at a Torax conference, on how to implant it correctly.

Lastly, would it be worth contacting Torax directly?

I really hope you get some answers, please let us know how you get on.

Take care,

Greta.

Post Edited (Greta_Garbo) : 1/20/2014 12:46:06 PM (GMT-7)

Posted 1/20/2014 7:52 PM (GMT 0)
I am so sorry to hear this! I second Greta- hopefully the surgeon placed it incorrectly... Certainly he would be the last one to admit it if that was what happened. Definitely don't stop locally when making this decision. Go to the best and most experienced LINX surgeons to see if one of them will take your case.

Best Wishes,

GC
Posted 1/20/2014 10:57 PM (GMT 0)
Thanks Greta and GroverCat,

I think contacting Torax directly is a very good idea.

My surgeon is indeed contacting Dr. De Meester, and says he'll be sending him all the information about my case and will see what recommendations he provides. I was glad to see your suggestion, Greta. It confirmed wisdom of this decision by the surgeon.

I understand Dr. Taiganides (in Ohio) is very good and has done lots of linx operations. I believe he and Dr. Louie also have well designed post-op follow up protocols, and they might know something about these kind of scenarios.

The best scenario is that the linx was place incorrectly from the start. That would presumably make it easier to place another one in the right place. I don't know. This is all uncharted territory, not just for me, but for most of the doctors.

Please keep the suggestions coming! I'm going to try to get as many expert opinions as possible.
Posted 1/21/2014 1:13 AM (GMT 0)
sinfrontera

We are very interested in hearing about the follow up care you will receive from your doctors regarding your Linx implant issues. Please keep us up to date. I think that contacting Torax and Dr. DeMeester is the right way to go. I called Torax and asked them to read the Linx Club in order to receive valuable follow-up patient information. They need to read your pages too. More calls the better. Somehow they have got to show an interest in 'outcomes' and offer solutions regarding the Linx and not just have the doctor say 'take it out' as the only option. I wish you the best and feel so sad to hear what is happening to you. Pat
Posted 1/21/2014 4:48 AM (GMT 0)
Pat,

Thanks. You are so right about the need to get doctors and Torax focused on outcomes. Who did you call at Torax? Were you satisfied by their response to your call?
Posted 1/21/2014 12:58 PM (GMT 0)
sinfrontera

They are currently recruiting 200 patients for another Linx study. They list a contact name with phone number. I inquired about already implanted Linx patients participation in the study and told them to read about the club for outcome information and she wrote it down and asked me to repeat it.
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