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GERD & Acid Reflux
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Posted 1/18/2013 7:26 PM (GMT -5)
BEACH-GIRL,

In your case, I suspect the fact that the anatomy is a little bit unusual might be complicating things.
Your Gastro esophageal junction (where Linx should theoretically reside) seems to slide in and out of the diaphragm which is unusual and could be causing your problems since the pressure within the diaphragm is likely to be very different from pressure out of it.

Doesn't saliva pooling usually resolve once the waves of the esophagus become stronger (around the 12 week point) ? I thought I remember JPT mentioning "in time everything goes well" - may be it is a function of how good a shape your esophagus is in, which in turn could actually depend on Linx working like it should.

Gastricman,
gas is from the laparoscopy I believe - they pump you full of gas during surgery.
Posted 1/18/2013 7:31 PM (GMT -5)
Gastricman,

As for the cases where Linx doesn't work - there could be myriad reasons. But usually it seems like Linx works best for high DeMeester, No hernia cases.

In any case, 80% odds is reasonable and I doubt you are going to get better odds with Nissen.

I am slated for Jan 30th. Having second thoughts because of MRI situation with my leg.

GH
Posted 1/18/2013 7:33 PM (GMT -5)
BG, I have said it before, but IMO, your symptoms scream sliding HH! It could be small, but positional changes will cause the stomach to pressurize back into the thoracic region.....I bet it is so small that it would not show on endo, barium......but only by investigative single-port lap surgery....
Posted 1/18/2013 7:39 PM (GMT -5)
BG, I think there is merit to hitThePost's suggestion of exploratory surgery. You might want to ask your surgeon about it. If they do confirm it, you might have two choices - straight up Nissen or just try to correct the HH without Nissen (although I am not sure they can do this) and leave the Linx alone.

I am sorry I don't have any better suggestion for you.

GH
Posted 1/18/2013 9:04 PM (GMT -5)
GH, they could fix the HH with the LINX there, but I believe that she stated they repaired it before.....guess it would come down to what they see....
Posted 1/18/2013 11:11 PM (GMT -5)
BEACH-GIRL - that is good to know! I have always heard you get the bloat and gas but didn't realize it would be this uncomfortable!

shrtcke81 - It is weird to feel the device in there. I'm getting used to it or maybe it's getting less noticeable? I am still very glad I had the surgery, just recovery for any surgery isn't fun LOL I think after you get your tests back and see if you are a candidate you should get LINX. Obviously I'm not a doctor or anything but just saying I'm being hopeful for LINX

JPT - Thank you very much!!

RGR - So far I've been eating everything just fine! Some things do get "stuck" but it goes down slowly after a few seconds. I sip on water to make it a bit easier. No overnight stay here, I think that is common with LINX now?

Gastricman - some things get "stuck". I can't chug or gulp anything yet. I assume that will be long term? I have had the backing up feeling in my esophagus but waiting a couple seconds it goes away. I think the "stuck" stuff isn't bothering me as bad because even before this device I'd get that, just because of the GERD.

The gas comes from the surgery and them pumping you up with carbon dioxide. I think that is where the back pain is coming from too? Also, I noticed I can't really burp, so that gas build up is in there too.

gerd_hater - the nurse who had LINX told me there is a certain cat scan that you can get (64 slice maybe?) and it is almost the same as an MRI. I can't remember all the details but she said that resolved her worry about MRI's. hope that helps!

about to let the dog out and then write up my Day 4 journal

Post Edited (NoDoubtLove) : 1/18/2013 9:16:47 PM (GMT-7)

Posted 1/18/2013 11:22 PM (GMT -5)
JANUARY 18, 2013 - FRIDAY - DAY 4

Woke up today still very sore in my stomach and my back very sore and aching. I slept great! I am really loving the whole "not waking up in the middle of the night 100 times because of GERD" thing ;) I made some coffee and toast and watched a little tv. The gas pain is what is driving me insane. I've been eating Gas-X a lot! I did take a pain pill about an hour after I was up since my back was killing me.

Today wasn't eventful. I did get up and sew some of my dress I'm making. Sitting in the chair after 2 hours my back couldn't handle it. I heated up the left over Skyline and ate that. I had more candy and even ate pizza for dinner! PIZZA!!! Pizza and no heartburn - my mind is shocked honestly!

I have felt food get "stuck" in my esophagus. I keep forgetting to chew chew chew! When it gets stuck I either let it pass (takes a couple seconds) or sip water to let it pass. Once and awhile the water just piles up and it all slowly goes down. BEACH-GIRL is right about the sipping water before you eat/drink so you can "prepare" the LINX.

The incisions are still itchy. I feel the LINX. I really want to burp. I have little burps that come up if I try but I feel as though I need one of those George Of The Jungle Tarzan type of burps to get relief. That is my biggest complaint so far, the pressure and bloat.

So far still very happy and excited. I haven't had any heartburn since the surgery and haven't been on PPI's since the day before surgery.

food
coffee
ice coffee
toast
6 hersey kisses
Skyline (Chili, cheese and spaghetti)
kashi cherry and dark chocolate granola
pizza (pizza hut, with pepperoni)
sour pickle
tortilla chips

Post Edited (NoDoubtLove) : 1/18/2013 9:35:29 PM (GMT-7)

Posted 1/19/2013 10:18 AM (GMT -5)
hitThePost,

I think you are absolutely right about the hh. I have asked the surgeon about exploratory surgery and he was not interested in the least bit. I told him what I thought it was and since he does not see it on the test, he is not one bit interested in helping me resolve this. I even told him I wanted the expl surgery so that he could just go in and see what was happening. I wanted to take the risk. No interest. I really expected him and the hospital to take a much more pro active approach and have an extreme desire to help me get better and resolve this. Again, no interest.

Any suggestions on who I could go to who would take a personal interest in my health and helping me resolve this? I am desperate.

GH- I do believe that the LES going above the below the diap does come into play here. I truly think the small hh being fixed, another stitch in the diap, would keep the linx from moving up and down and causing problems. I just can't seem to get the docs to want to solve this.

I would love for this to be resolved and linx still in place. It is almost one year for me since surgery, May. If I can not get relieve, I will have to look into the Nissen.

NDL, the swallowing issues/stuck food is supposed to get worse and then taper off around 12 weeks. My swallowing issue lasted about 5 days. First five days of surgery and then nothing ever got stuck again. My surgeon said maximum effect could take up to 1 year.

The gas will resolve itself, but it will take time. You said you don't feel as if you can burp a good burp. I can still burp freely with the linx. I think I burp way more than I should because of the linx problems that I am having.

Glad you are doing ok and no heart burn. Glad you can eat such wonderful foods. I look forward to when I can have a cup of coffee again. Been three years now.

Anyone have any suggestions on a surgeon that would be willing to do exploratory surgery? One that has a heart and willing to take a personal interest in my health and wellbeing.
Posted 1/19/2013 12:51 PM (GMT -5)
Hmm...

I would think that the HH would have to be corrected before the LINX is done, during the surgery.

Torax says that up to 3cm HH is the maximum. If a LINX is slipping is it due to poor surgical technique, or that the HH was not closed properly and reinforced prior to the LINX being installed? I wonder if a standard upper endoscopy can verify this without the need for addtional surgery - perhaps another barium swallow as well.

As for the laparoscopic gas -

Intestinal gas pains are caused by a buildup of gas inside of the intestines. (easy to get rid of.)

Intraperitoneal gas pains are caused by gas trapped outside of the intestines, but inside the entire abdominal cavity. (this is much more difficult.)

Found this on another website, FWIW...

------------------------------------------------

At the end of the operation, the abomen is allowed (and sometimes assisted) to deflate. The carbon dioxide –CO2 — is released from the abdomen. Mostly.

It is not possible to remove all of the CO2, however. The little bit that is left behind can irritate the peritoneum – the lining over the abdominal organs and sometimes the organs themselves. This can be felt as sharp or achy pains.

In addition, the CO2 can settle up under the breathing muscle called the diaphragm. Because of how the nerves connect, this irritation is felt as pain in the lower chest and up into the shoulder.

This type of pain can be quite uncomfortable and may last several days. It will eventually resolve on its own, but can be aided by walking and moving around. In this case, pain medications may be helpful and will not make this type of gas pain worse.

------------------------------------------------

I wonder if the surgeon can shoot some simethicone liquid into the abdominal cavity at the end of the surgery so that the gas can vent out before removing the ports and/or trocar.

I know that was done for my routine colonoscopies and it worked perfectly.

Can't hurt to ask.

Regards,

Gastricman :-)   

Post Edited (Gastricman) : 1/19/2013 12:48:25 PM (GMT-7)

Posted 1/20/2013 1:14 AM (GMT -5)
BG,

Regarding someone who cares, just thinking out loud

(1) Insurance plays a big role perhaps? What insurance do you have ? Signalling to the doctor that money is not at all an issue or that you want a procedure that is off the record may give you slightly better care.

(2) Talk to a different surgeon. Surgeons rarely do repeat surgeries on surgeries they've done (they have big egos and won't see their mistake - this could also be from fear of malpractice suing. Just my guess since my neurosurgeon behaves in a similar manner after his surgery kind of failed to work.). Now, Linx surgeons could all be well connected and not so interested in stepping on others' toes. But, still, perhaps worthwhile to contact people like Dr.Tag to see what they think.

(3) Go back to GI and get evaluated for hernia - like a first time patient.

(4) Don't give up until you are satisfied. No one cares about you more than you and your family. To expect surgeons to care will almost always end up in disappointment.

GH
Posted 1/20/2013 10:33 AM (GMT -5)
BEACH-GIRL - My surgeon is currently in Miami teaching 15 other surgeons how to do a proper LINX surgery. He's the top in the country. You could always try to ask him what you should do. Now, if he were to need to see you he's in Ohio... so that's probably pretty far but it may just be worth it! You shouldn't be having even more issues afterwards :( Maybe that surgeon was too quick to want to try to implant a LINX? How many had he done before you? I wish you luck!!

Gastricman - Thanks for finding that description, makes me feel better knowing these feelings are "normal". I know he did try to get out as much as possible but obviously some stays. It's the worse part about everything so far!!

about to write up yesterday's journal
Posted 1/20/2013 10:50 AM (GMT -5)
JANUARY 20, 2013 - SATURDAY - DAY 5

I once away slept all night long. No waking up with burning! My back pain and sore stomach were a little bit better. I had morning coffee and a granola bar and played video games. I decided that today I'm going to really get out of the house. I felt a lot better wearing real clothes and doing my hair and makeup. I can note one of the incisions is exactly in the way of where my bra would go, so I had to wear a different cottony kind.

The husband and I went to the mall. Walking around helped me feel A LOT better. I was slow at first but doing pretty good. The backache went away while walking and I didn't really pay attention to the sore stomach because I was feeling so much better. We had lunch at Outback (my husband is on an Outback kick). I ate a salad, bread, steak and sweet potato.

All day I can feel the LINX or something in that area. I can feel it with 50% of my food swallows and 20% of my water/coffee swallows. I also will randomly feel it, it feels like the acid is trying to come up or something. The acid never does come up but I get a noticeable uncomfortableness at the LINX placement. Honestly it feels exactly like that pH Bravo test capsule. I know a lot of people didn't feel that in them but I did, and LINX feels the same. They said that about the capsule since I'm underweight I'd feel it. Maybe that's the same with the LINX? Not that I can actually eat though, weight won't be a huge issue in a few months!

We came home and my back was aching again. I sat on the couch and read a magazine. After the pain dulled I took a pain pill and heated up my leftovers. Then I went downstairs to sew. I was down there for about 2 hours before the back pain was really bad and I was insanely nauseas (probably from the pain pill). I took the nausea medicine and laid on the couch and watched tv. I ate half of a bag of these white cheddar Pop Corners too. Before LINX I couldn't eat any chips/snacks that had powdery flavoring on them ... they'd trigger heartburn.

I do have to mention that I haven't gone to the bathroom in a few days. I know they said it's normal from the meds but maybe that's part of the gas pains too. I think I'll buy some laxatives today.

Overall back pain is still there - but better. Walking is the KEY!!! Feeling the LINX does worry me. It's uncomfortable and awkward to feel it randomly. But I can say there is still gas around that area. If I push down on my chest and breathe deep there are no pains. So maybe me feeling it will go away soon if the gas ever decides to leave!!

food
coffee
kashi dark chocolate chip and cherry granola bar
bread
blue cheese chop salad (Outback)
steak (Outback)
sweet potato (Outback)
white cheddar pop corners
sour pickle
sour bits sour candies

I'm going to try out buffalo wings today (sunday) and see how that goes. No heartburn since surgery, no PPI's since the day before surgery

Post Edited (NoDoubtLove) : 1/20/2013 9:15:29 AM (GMT-7)

Posted 1/20/2013 11:10 AM (GMT -5)
NDL,

How long do you have to be off of work?
Posted 1/20/2013 11:14 AM (GMT -5)
Doctors said at least one week. As long as this gas pain goes away more and more each day I'll be right on schedule. I'll go back Wednesday or Thursday. I sit at a computer, so lifting isn't a worry
Posted 1/20/2013 11:40 AM (GMT -5)
Not bad at all!
Posted 1/20/2013 5:48 PM (GMT -5)
I just ate 10 hot buffalo wings, fried pickles and potato skins... NO HEARTBURN!!! I have a tummy ache from over doing it but NO HEARTBURN!! This blows my mind!!!
Posted 1/20/2013 7:34 PM (GMT -5)
:-) Yay! Not for the tummy ache, but for it not causing acid problems!
Posted 1/20/2013 7:35 PM (GMT -5)
(You're making me hungry! LOL)
Posted 1/20/2013 8:23 PM (GMT -5)
Wow, that is amazing!! I can't wait to one day be able to eat those again! That is all stuff that would kill me, but anything burns my throat. I'm suffering so bad right now, I just want to fasten up the pace, get those tests done and then get approved for surgery! Reading your journal is giving me hope! I'm just hoping it would work for me. My husband just left to go pick up a stromboli and asked if I want anything, yea right! I need to go back to UCLA to have those tests, but my husband can't get the time off until March and wants me to wait, but I'm not waiting any longer. I need to get some answers and hopefully get surgery (LINX preferred).

I'm so happy that you're doing great so far:) I hope that day come for me soon! Keep us updated!
Posted 1/20/2013 10:55 PM (GMT -5)
When I first started eating the wings I was scared. For so long I've been flat out terrified to eat certain foods, it's hard to wrap my brain around the fact that I will now be able to. Since July the heartburn has ruled every single day of my life. I've had these issues since 2005. The heartburn would come in waves. I'd be okay for a few months then awful for 2 or 3 weeks. But during the "okay time" I still couldn't eat spicy. I feel so lucky that all this seems to be behind me now.

It took what seemed like forever for me to go through different GI doctors, tests, then I discovered this forum. I discovered both LINX and Nissen. I learned about the correct testing to get to see what exactly was right/wrong with me. I can't thank this forum enough, it flat out has changed my life. I thank God every day that I finally found an answer to these problems. I was so depressed and withdrawn. I'm feeling hope again. I hope I'm going to continue to get better each day and put this behind me.

I've been eating bland and super healthy since July. I want to stay on a healthy food lifestyle. I don't want to just eat buffalo wings and pizza every single day, but I had to test out the LINX!

The other issue is that for awhile I didn't have any support. Everyone just assumed I had some heartburn and I should shut up and eat Tums. Even my own husband asked me if I ever got tired of feeling sorry for myself. He didn't understand either. Now that he's seen everything I've gone through (even before the surgery) he apologized and has been very supportive. Hell, he even had to sit in the car with the dog at the hospital for hours on end. He never once complained. If anything this "illness" has done, it has brought us closer. I can see he's my rock.

Now I'm just getting corny lol

Anyways, I say get your tests as fast as you can. There is no reason to continue living each day afraid of food and having pain. It really does mess with you physically and emotionally. The tests will help show you and help you understand what really is going on inside. I knew mine was bad but until I saw the tests and got the right doctor to educate me, I didn't really understand. My doctor has been amazing! I highly recommend Dr. Taiganides. I wish you luck with your tests, just know there is hope! I was so far down that rabbit hole of depression from this, I didn't think I'd ever get "fixed"!
Posted 1/20/2013 11:12 PM (GMT -5)
JANUARY 20, 2013 - SUNDAY - DAY 6

I can't believe it's already been six days! Last night I did wake up once, it wasn't from heartburn as usual though. When I got up for the morning I felt a lot better than the day before. The back pain was about half and the soreness in my stomach was half. I had coffee, oatmeal and toast then went downstairs to sew. The sewing hurts my back in general so after a little bit I was getting sore. My husband asked me to help clean up the house because family was coming over. I felt rushed and cleaned for about 30 minutes as fast as a post surgery person can. I am feeling a lot more like normal so I didn't think much of it. I over did it. I started feeling some slight shooting pain in 2 of the 5 incisions and my back was aching. I took a pain pill and laid down for a little bit.

I slept for about an hour and took it easy for awhile. His family came over and we ordered wings. I got 10 hot buffalo sauce, fried pickles and potato skins. I figured today was the day to really test things out. I was super hesitant to have wings. For so long I haven't been able to eat them. I ate all my food and can say I didn't have ANY heartburn or indigestion, NOTHING. I did feel bad from eating that much grease though! A few hours after the tummy ache I was finally able to go to the bathroom some. (I feel weird posting that sort of stuff, but this is a health forum lol).

I ended up going to Walgreens to get a laxative just to help things out. I think maybe that could be part of the gas/bloat issue. Although, I can say half of that pain has gone! I got a Oceanspray Cranberry Sparkling drink (carbonated) and shared it with my husband. It made me feel a little bloated but it went down easily. I was worried it may get backed up or feel weird in my esophagus. We also shared a ice cream cookie sandwich. For years, every night before bed I eat a sour pickle and tortilla chips. I always did this because the nights I didn't, I'd wake up with extreme heartburn, not just bad heartburn. Now I don't need to do this but it's sort of became my nighttime ritual.

Overall I'm really starting to feel like myself again... but better! Once the soreness and bloat go away 100% I'll be good. I did have a few times of feeling the LINX throughout the day and after the wings but I didn't feel it during. I assume maybe afterwards it was the acid trying to push up and that caused pressure? I was able to burp small burps just fine after the carbonated drink. The incisions are itching, so that's a sign of healing. Only the bottom left one is having some pain once and awhile. I think because I sleep on my left side and move with my waist.

I'm excited that each day I feel better and better!

foods
coffee
oatmeal
toast
hot buffalo wings
fried pickles
potato skin
oceanspray carbonated cranberry drink
chocolate chip ice cream cookie
sour pickle
tortilla chips
Posted 1/21/2013 12:29 AM (GMT -5)
Hey NDL,

Congrats on your success and thanks for keeping us posted. This is all so exciting to hear !

Did you have regurgitation too before Linx which I assume is gone now.

GH
Posted 1/21/2013 8:51 AM (GMT -5)
Hi.

What I'm also curious about is that if you have a HH > 3cm can it be corrected first, then during the same surgery have the LINX implanted? Can't seem to get an answer on this from Torax Medical, USA.

Gastricman :-)
Posted 1/21/2013 9:57 AM (GMT -5)
NDL,

You said "My surgeon is currently in Miami teaching 15 other surgeons how to do a proper LINX surgery."

Do you know if any of them will be doing this in NYC?

GM :-)
Posted 1/21/2013 10:56 AM (GMT -5)
GH - I used to get nauseated a lot and have it come up the back of my throat but not actually vomit too often.

GM - I apparently didn't have a hernia. I know I used to have a "slight one"... whatever that means. But I think it was the GI how he read the endoscopy because this doctor/surgeon did the endoscopy and LINX and I don't have one. It sounded like my biggest culprit to everything was that my LES wasn't functioning at all.

I'm not sure about the NYC area but I'll try my best to ask him during my follow up, which is the 30th. Hopefully you can find a great one up there! If not, come to the middle of nowhere in Ohio and get fixed up :D It will be worth it!
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