Sinfrontera LINX post op journal

Ok, here goes a brief summary of my pre and post-op experiences with LINX. I had the surgery on Tuesday March 12. Today is Monday March 18. I hope this is helpful, and would love to hear about other experiences. GERD_hater, you are my model!

December 21, 2012: Was scheduled for a Nissen. However, ten days before a friend alerted me to the LINX technology. Why didn't my then-surgeon tell me about that option? I don't know. But when I brought it up with him he sure knew about it but did not support it...a)because he didn't like the idea of implanting a foreign object, and b) there was not enough data on the procedure to justify doing it. However, he supported my doing research on it and even gave me names of surgeons to talk to.

December-January: corresponded and spoke to a number of surgeons. Very interesting to observe the debates between them. In december Torax listed nobody in Chicago as certified for the procedure. A great blog, by the way, is Dr. Brian Louie's, at Swedish Medical in Seattle. He's a booster of the procedure, but responds quickly and thoughtfully to posted questions: http://swedish.org/about/Blog/May-2012/A-new-treatment-for-GERD-The-LINX-Reflux-Manage#axzz2E6Fhp4HW

Late January 2013: Scheduled a consultation in Boston with Dr Rattner to have the surgery with him. Before leaving Chicago I visited Dr Nathaniel Soper of Northwestern Memorial, expecting another anti-LINX talk (head GI surgeon at U. Chicago consulted earlier was categorically opposed, for reasons similar to those of my original surgeon). To my surprise, Soper told me he was about to start doing the procedure in February, and encouraged me to have it done by him. 20 minutes from home was far more appealing than a two hour flight away, so I scheduled it with him. I was his second LINX patient.

Early March: Blue Cross/Blue Shield approves the procedure. For those of you on BCBS, the procedure, as an outpatient procedure is listed among the approved ones for them.

Operating day: In a 6 am, surgery promptly at 7:30. Last thing I remember is Dr. Soper in the operating room showing me the bracelet used to measure the esophagus. After that I was out.

In contrast to GERD_hater, I was not released the same day. Maybe because of my reaction to the anesthesia, or maybe because they went heavy with it, I was in no condition to leave that day. First 24 hours were not happy. Post-operative pain in torso area, and non-stop dizziness from the anesthesia. Also could not pee because of anesthesia. As a result, in 24 hours I got cathetered TWICE. Once is memorable, twice is cruel and unusual punishment.

Day two, stayed in hospital until 6 pm. Nurse practitioner threatened with having me leave with a catheter attached, to be kept for 5 days, and I did major mind over body efforts to pee just enough to avoid a third torture session. Narrow escape.

Catheters aside, Northwestern Memorial hospital, and their nurses, were fantastic. If you are in Chicago or within reach of it, do the procedure there.

Days three and four, recovery was fast. No significant dysphagia. Belching different but doable. Considerable post-operative pain, mainly from the tubes used in surgery and some pre and post operative testing (balloon motility test) that I approved for data collection purposes. Turned out that there was a noticeable narrowing of the esophageal diameter after insertion of the LINX.

Main problem has been the post-operative pain. On day six it's still there. But as far as I can tell, I have no reflux. There is so much soreness and pain in the body that it's hard to know for sure, but I'm pretty sure there is no reflux. Also, stopped taking ppi's entirely after surgery. So signs are good

Days 5 and 6, had somewhat of a regression. Pain in esophagus increased, and wooziness did as well. Lots of sleeping. Dr. says it's all from the tubes down the gullet. I'm surprised it lasts so long. Long live Tramodol and Vicodin! But eating is normal. Today I was having trouble belching, which worried me. But the nurse told me to be sure to continue eating normal food (not soft food) to keep the LES elasticity going. After eating some food the ability to belch returned. So there is something to the idea of keeping the LES working and stretching with real food often.

It's weird that I have not experienced the dysphagia so many people report experiencing.

Today I worked for the first time since surgery--gave a one hour talk on my feet. Not bad.

Summary so far: Lack of reflux, without any ppi's, is astonishing. Only lingering post-operative problems have been pain from the surgical tubes and motility testing, and the cutting from surgery. Pain killers help with that. Energy levels low, but that's to be expected. Don't actually feel the LINX bracelet very much. If this trend continues, this will have been one of the best decisions I've made. But I'm still in the first week of post-op. I'm told dysphagia kicks in around week three. I'll keep you posted.

Hey Sinfrontera,

How are you feeling today?

GM

Hi Folks, here's some more reports:

GH, sorry for the delay in getting the info you asked for. It took some time to dig up the tests from the pile of papers.

The DeMeester score from the 24 hour PH test taken two months before surgery was 37 (normal <22).

The score from the LES motility study was a mean resting LES pressure of 5 mmHg (normal 12-60).

All other esophageal functions were normal or close to normal.

I also had a small sliding hiatal hernia that was fixed during surgery.

I can't give you the results of the balloon motility test done during surgery. My surgeon happily gave me the results of improvement pre/post while I was in the immediate post surgery fog. All I remember is his happy face and some hard to decipher numbers that my girlfriend repeated back to me. I'll check with the surgeon and report those. He did see the results as significant--not just for me, but for the procedure generally. As I said, that test was for his research purposes (we are all guinea pigs at this stage!).

NICKUK, my preop symptoms without ppi's were significant burning in the lower esophagus with lots of reflux. Actually, those symptoms were similar even with ppi's. I did not have major throat symptoms--only in extreme circumstances in the middle of the night (following a few pints of beer and fish and chips at the local bar). However, I had constant 'gustatory rhinitis' after eating (or even during eating). I'd get sniffly, congested, and sneezing during and after eating--and not just with spicy food, with any food. For a long time I thought I had allergies, but it turns out to have been yet another GERD curse.

But the acid reflux was often debilitating--my mind got fogged, I could not concentrate on work, I was constantly tired, memory cloudy, could not exercise, and symptoms were often systemic--like some general inflammation.

My GI internist, who was opposed to surgery (I guess internists often are), insisted on a drug therapy to control GERD. In the final months/year he had me on 60 mg daily of Dexilant, 300 of Welbutrin, and up to two .5 doses of Klonopin daily. Even with that shower of drugs GERD symptoms were constant. I had bottles of Gaviscon in my office desk, my backpack, and my kitchen, and was swigging constantly. I was also drinking alkaline salts in water regularly. In the last six months I went off alcohol entirely, but symptoms continued.

So that's probably more information than you asked for.

As to how I'm doing today, Gastricman, I'm doing ok overall. But GH was right, dysphagia did set in after week 1. In fact exactly seven days after surgery I noticed food stopping at the LES and requiring a painful push with water to get it down, especially in the initial eating stages. We'll see how it progresses.

By the way, GH, my surgeon insisted quite adamantly about stopping the ppi's immediately. Another topic of debate between doctors, I guess.

Reflux symptoms now are minimal, and still hard to disentangle from other esophageal irritations post-surgery.

One general question: is it better to do these postings on the LINX club threads, or in this separate journal?

DAY 8, Quick Summary:

New developments:

1) dysphagia definitely kicking in. Happens at the start of a meal. First swallows lead to painful pressure at LES. Food stops there, and with water slowly pushes it open (with pain). But, as JPT suggests, chew, swallow, pause, and it makes its way through. One must definitely relax and not get stressed, because then things really tighten up. After a few swallows, with prudence, swallowing gets back to normal.

Pain in LES area still pretty constant. Today I hit the vicodin. Tomorrow I hope not to. Gaviscon soothes pretty well.

Still not taking ppi's. I remind myself of this when feeling all the discomforts and I feel a major morale boost.

2) Burping pattern has changed, not for the better. At first I burped with more difficulty (and differently) than before, but could get off some good clean burps without reflux (sorry about the gross imagery). Now I can barely burp at all. When I'm eating, that's when occasionally I can. But I had hoped burping would not be a problem, so I'm a bit worried (and uncomfortable).

Has anybody had such changes in burping patterns? Should I expect it to change over time as LES movements become more flexible?

3) Diet last two days:

Yesterday: Breakfast, french toast and tea. Lunch: cold cuts and cheese and yogurt. Dinner: Big hamburger and fries (lovely!). No problems other than initial dysphagia.

Today: Breakfast: Toast and yogurt. Lunch: eggs and ham. Dinner: Pierogi (polish dumplings/ravioli) in olive oil, onions, and sour cream. Very heavy food, went down well. Lots of ice-cream for desert (yes, I'm taking advantage of my current "condition" to wolf down lots of high fat foods--that will have to change).

No carbonated drinks. No alcohol, although I may try some wine in the next day or two.

I'm not all that mobile. I thought that by now I could do some exercise, but I'm not ready.

VERY encouraged by your 'burp report,' NDL. Sometimes I do feel like I'm going crazy not being able to burp. Part of it is psychological, I think. Just knowing you can't makes you want to do it, even if you don't have to. But, in light of what you say, I'll be patient, relax, and assume that, just as I was able to on days 2 and 3, I'll be able to again in a few weeks.

And long live Pierogi. May they flow down the gullet without effort!

Thanks, your reports have been very helpful and will follow your progress

One must never undervalue patience and common sense. Thanks, GM.

Hey Sinfrontera,

Be prepared when you eat out the first few weeks. I've had a stuck situation at a Thai place eating broad noodles.

Other than that, you seem to be following the normal recovery. I wouldn't worry too much about anything yet. The first few weeks are difficult, no doubt. But then again, if you don't feel any reflux at the end of it all, it is worth it, isn't it ?

GH

Hi sinfrontera,

Do you have any pain that might be related to the gas used during the laparoscopic procedure?
For example, a sharp shoulder/neck pain?

Also, please sneek a peek at my last post in part 6 of The Linx Club.

Feel better,

GM

[/quoteHi sinfrontera,

Do you have any pain that might be related to the gas used during the laparoscopic procedure?
For example, a sharp shoulder/neck pain?

Also, please sneek a peek at my last post in part 6 of The Linx Club.

Feel better,

GM]


Hi GM,

No, I never had any of the shoulder/neck pains reported by others from the gas used in the procedure.

P.S. In the dysphagia event last night I was eventually able to eat. I let 15 minutes go by, sipping room temperature water (I believe this was GH's advice--thanks), and then, slowly I finished the meal. In this bout, round 1 went to dysphagia, round 2 to SF.

Also, this morning I ate breakfast (a heavy hot cereal) with no major problems.

Thanks, GH. Very helpful.

sinfrontera,

Try rapid sipping and swallows of water.
I am sure it will assist more than taking the one sip.

In my mamometry studies my swallowing wasn't
very good with water but my oesophagus showed
excellent peristalsis with rapid swallows of water
showing the the oesophagus responds well.

Nick