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Posted 12/26/2011 3:20 AM (GMT 0)
Been about a month since the Linx surgery. Had some rebound as i dropped off the ppis Covered it with twice daily zantac 150 mg. Then drew down to one per day. Off all meds the last three days. Feel great. Still need to watch the first bite of food and chew well. So far so good.
Posted 12/26/2011 4:20 AM (GMT 0)
is the linx still working
Posted 12/26/2011 4:38 AM (GMT 0)
I have a question what if you have already had a nissen done? Can you still get a linx???
Posted 12/26/2011 9:25 PM (GMT 0)
Hi Cmac,

Yes the Linx is still working. I don't know if it can be installed after a nissen. I certainly hope so.
Posted 12/27/2011 1:05 AM (GMT 0)
Cmac-


You would have to have the Nissen take down to go with the Linx. that can be hard to get a surgeon to do and I am not sure if they would do the Linx after that either. Great question though.

Take care,
Bill
Posted 12/28/2011 2:13 AM (GMT 0)
I posed this question to a friend of mine today (I had questioned this very thing on another thread out of curiousity) who happens to be a GI....he stated, that there is no certainty to that answer, but his thoughts would be that, if someone had sufficient esophageal motility, there could be a chance that the Linx could work on (well not "on" but higher on the esophagus) a current fundo. The other issue would be the length of esophagus available so that there would not be too much tension (i do not think a Collis would help here)....
Posted 12/31/2011 12:41 AM (GMT 0)
Bill, I noticed you had your 3rd Nissen recently.  How are you holding up?  What happened with the first two?  I ask because I am considering a Fundo, but I fear that I would have to have re-operations down the road....

Thank you for any information you can provide!

Mike

Posted 12/31/2011 4:35 AM (GMT 0)
hitThepost-

Well that's an interesting story, kinda long too. Here goes.....
I had my first nissen 6/6/06. After about 3 years of dysphagis and about 15 dilations with no help I was referred to Loyola Medical Center in Chicago. I had all the same initial tests and the finally found an abnormality on the 4th barium swallow, but they weren't sure what was causing it. After my wife and I insisting on having something done my surgeon decided to do an exploratory surgery. So on 5/18/09 I had my first redo. While in pre-op he asked me what I wanted him to do if they didn't see anything wrong or if they did find something wrong. Since he is a very experienced surgeon on nissen redos I opted for him to do what he would want done if it was him on the table. After waking up he said he was very glad we kept after him to do the surgery because it was done incorrectly and was at a 90 degree angle at rest. No wonder food was getting stuck. Since it was done wrong it took aalmost 6 hours to redo it and I found out he brought in a lot of surgeons in training to see what not to do. I didn't ask enough questions of my first surgeon. I just asked if he could do it and he said sure. Since he had removed my gallbladder a year earlier I figured he could do it with no problem....WRONG.

Anyway, had some complications from the tough time they had undoing the original nissen. But after 3 weeks or so I was good to go. Everything was perfect for almost 2 years. Then I had a follow up EGD to check the Barretts and my esophagus was torn by the scope. That was 2/28/11. I was sent to University of Iowa hospital and had surgery to repair the tear. When I had a barium swallow to see if it held we found out it was still leaking. They put in an esophageal stent, used to open the esophagus when there is cancer there. When they rechecked it, it still leaked. The barium was following the stent back up to the hole and coming out. The decision was made to remove my esophagus, but just before surgery they decided to advance the stent through my LES into the stomach. This time noting followed the stent up and out. They tried feeding me with a regular NG feeding tube, but when my stomach filled it followed the stent up and the food came out my chest tube. Back to square one. Another surgery to remove my esophagus was scheduled and 2 hours before surgery they changed their mind again and decided to put in a feeding tube through my belly and into my small intestine. This worked great. After 1.5 months with the stent in place the hole finally closed up.

In June the hole opened back up and I spent a week at Iowa City and 2 weeks at Peoria. It was then found out my LES was wide open and during a barium swallow the barium actually bounced back up into my esophagus.So after waiting 6 weeks for things to heal more I had my 2nd redo done open this time. On 8/24/11I had my 2nd redo. It had to be done open so they could take down the scar tissue to ensure a tension free wrap. After surgery my surgeon told me the wrap was completely torn apart. This was from the esophageal stent being through my wrap. Bad thing is I asked if it would damage my wrap and the surgeon at Iowa City told me "no". I couldn't see how a sprung open tube wouldn't do damage, so I was expecting it to be damaged.

Surprisingly the open surgery was my easiest recovery of all 3 Nissens. Seems strange, but it's true. all is basically going very well. I can eat about anything I want. No heartburn so far. Do still have some sternum pain from them torquing up in my rib cage so he could get his hands in there, but it's getting better every day.

Take care,
Bill

Ps. My new GI doc told me I should write a novel on all my issues and experiences the last 5 years. Or at least write a blog on it. I told him I was a moderator on this site and he told me he was happy there is a site for support and was happy I am so involved with it.
Oh, he also was at Iowa City while I was there. He just finished his training there this June and knows all the doctors I had there very well. Kind of strange to have a doc who was there the whole time I was there.
Posted 1/3/2012 12:02 AM (GMT 0)
Wow, Bill, thank you for the share, and I am sorry you have gone through so much.  Fortunately it seems like you are back on track!  My esophageal motility is great, it is just my LES is registering 5.8, or fairly weak, hence the reflux.  What has held me back is that I was recently diagnosed with Eosinophilic Esophagitis or EoE.  Since EoE is so poorly understood, some doc's are saying that could be causing the burning sensations I am getting.  Then I have other doc's and surgeons saying that sever GERD can cause high levels of eosinophils in the esophagus.  Ugh, what to do.  I am headed to Mayo Clinic in Minnesota on 1/25 to see a GI specialist in EoE.  I think they will do some tests while I am there, and then will plan to have me try both swallowed steroids and elimination diet to see if the pain stops.  If not, then a Fundo may be in my future.  I have still researched and met with a few General and Thoracic surgeons to see who I would want to do the surgery if I have to have it.  I have it narrowed down to 2, and there maybe one more highly-recommended surgeon at Mayo that could be added to the list.  You just seem to read so many horror stories on the 'net, so I want to make sure my potential surgeon is the right fit for the job!

Talk to you soon,

Mike

Posted 1/3/2012 12:31 AM (GMT 0)
Mike-

You are doing things the right way. finding the best surgeon who has successfully done lots of these is the way to go. Since you are heading to Mayo in Minn. I would also like to tell you that Loyola Medical center near Chicago has a great surgeon and GI doctor. the surgeon runs his own swallowing disorder clinic and did my first redo. The GI doc there specializes in Barretts and a few other issues. Just food for thought.
So far I have had a general surgeon and 2 thoracic surgeons do my Nissens. I had the best luck with the thoracic surgeons.
This journey can be confusing and frustrating, but I can tell you have a good game plan and will make a well informed decision. I wish you the best of luck with whatever decision you make.

Take care,
Bill
Posted 1/3/2012 1:00 AM (GMT 0)
Mike --

I have eosinophilic esophagitis too -- it is treatable. I take two puffs of Pulmicort, twice weekly, and it's enough to keep the eosinophil count down. EoE has two probable causes -- food allergy, and a response to reflux. When it's found together with reflux, then the acid is most likely the precipitating event.

I can tell you that the times when my counts were high, it caused pain in my lower esophagus (similar, but different from heartburn), I lost all appetite, ran a fever, and had a general feeling of malaise. A couple treatments of the inhaler is all it takes to knock the eosinophils down, and then regular maintenance until you can control the reflux.

-Bruce
Posted 1/3/2012 3:42 AM (GMT 0)
HitthePost,
If you go the fundo route with the Mayo, ask for Stephen D. Cassivi, M.D. (Thoracic Surgeon). When i did my exhaustive primary research a couple of years ago, he was my top choice (of 3 here in Minnesota) based on knowledge, experience, number of procedures done (including redo's, undos, and conversions), success rates, etc. In the end, I didn't get the procedure. You are in very good hands at the Mayo.

http://www.youtube.com/watch?v=4E-V9kmjmnA
http://mayoresearch.mayo.edu/mayo/research/staff/cassivi_sd.cfm

Good Luck,
MM
Posted 1/3/2012 3:57 PM (GMT 0)
Bill, thank you for the encouragement, and again I really appreciate hearing your experience. I will certainly keep Loyola in mind should I need a Nissen....

Bruce, are you just using the straight Pulmicort inhaler and dry swallowing, or are you using the paste that goes with it? I have been on Flovent, 4 puffs daily, and it seems to help somewhat. Also, it does seem confusing as to whether the reflux is causing the EoE, or if I truly have EoE from allergy and any normal reflux I get causing agony. I had a 48 hr PH probe that was high (Demeester of 33) but then a subsequent 24 HR probe with a Demeester of 6.3. Talk about confused! Also, the latest eosinophil count was >100 per area. The debate is whether true reflux alone can cause a count that high. I am hoping Mayo can give me some answers. The burning pain is awful, but it is interesting because I have been throwing low fevers during the painful days. I just thought it was my prostatitis acting up (thats a whole different story!)

Mark, great information as well, thank you. Dr. Cassivi in the doc that I will ask to see should they push me that route. I have heard nothing but exceptional things about him from a few of his patients, both Nissen and cancer. If I may ask, why did you not go forward with the Nissen? Were you able to control it with meds? None of the PPi's seemed to work anymore, but I just gave Zegerid 40mg a try and so far it has seemed to help some....
Posted 1/4/2012 1:15 PM (GMT 0)
Wow, greater than 100 is high! Hope you have luck in getting that under control! At its worst, my counts were about 14 per HPF. Yes, I'm dry-swallowing the Pulmicort, two puffs, twice weekly of the 180mcg version.

Also very strange about the huge difference in your Bravo study. Keep us posted!

-Bruce
Posted 1/5/2012 1:16 PM (GMT 0)
Thanks Bruce. Yeah, the >100 count is scary, and it hurts like hell. The trouble swallowing isnt that bad, rather it is the alternating between a burning feeling and then a squeezing/crushing feeling esophagus. Glad I am in good health otherwise because I'd be convinced I was having a heart attack. There are days where I just say, "man, can I just get my esophagus taken out?" If it were only that simple. Yes, my LES is weaker, but will a Nissen make THAT big of a difference? That is why I want to try to get the EoE under control first, and I we cant, well then it will be Nissen time!
Posted 1/5/2012 1:21 PM (GMT 0)
I agree, you HAVE to get that EoE managed, and you may find that the Nissen is unnecessary at that point! Plus, the EoE causes a thinning of the walls of the esophagus that would most likely prevent surgery anyway.

-Bruce
Posted 1/5/2012 2:50 PM (GMT 0)
I have asked docs about EoE preventing the Nissen, but they just sort of say theyre not sure. That is why I am hoping Mayo can provide some answers for me. I have been on Flovent now for 14 days, and some days I am ok, while others are not. I cannot identify any sort of consistency or anything like that. Perhaps it isn't a high enough dose, or I just have so much swelling that is truly could take a few months to get under control. The amazing this is that my last EGD in early November, when this was identified, my GI said my esophagus looked completely normal, with the exception of an Irregular Z Line. No narrowing, no strictures, no bleeding.....amazing.
Posted 1/12/2012 3:43 AM (GMT 0)
Bill that is an amazing story and I wish you the best in your recovery.

So I thought I would report on the status of my Linx install on the day the FDA Advisory panel is having a "Meeting of the Gastroenterology and Urology Devices Advisory Panel for the Torax LINX Reflux Management System (P100049)
FDA PDF of the questions www.fda.gov/downloads/AdvisoryCommittees/.../UCM286238.pdf

I am approximately 45 days post LINXs installation. I am still off all daily meds. There were a couple of rebound moments or simply I could have had some plain and simple reflux over the holidays. I had reflux twice and both cases it was after I simply stuffed myself. Thankfully, the reflux lasted only for a few hours and wasn't very painful. I did take a Zantac and antacid for these events. Besides that it has been wonderful. I can eat anything. I am enjoying spicy food, beer, cola, wine, and have even started to drink milk again. I do need to chew carefully but not more that most people do anyways. Trivial.

So at 45 days I can report I very happy. I feel more energy from not being on PPIs or is it that I can go to bed at 10pm instead of my GERD typical 12am? :)

I hope it is approved soon in the US so everyone has this option.


Cheers
Posted 1/12/2012 1:28 PM (GMT 0)
edopter-

Thanks, all is going well for me. Glad to hear your recovery is going so well also.

Take care,
Bill
Posted 1/12/2012 2:06 PM (GMT 0)
Many congraulations on your success story, and hopefully this will bring relief to many other patients, like me, in the coming years. And thanks for taking the time and sharing your story - it helps so many people
Raj
Posted 1/12/2012 3:11 PM (GMT 0)
edopter -
This indeed is great news .. and hope you continue to feel well ... one question: Did you experience dysphagia .. and how long did it take to resolve? Thanks.

Raj -
So, it looks like you are inclined to choose Linx over TIF or Nissen. Can you share your reasoning, thought process around this? Also, it seems that you are not in a hurry .. so are the meds working for you? Thanks
Posted 1/12/2012 4:47 PM (GMT 0)
So far, i am able to manage gerd with food control etc. Last year, i took nexium for about a month or so and then stopped and lasted well for 4 months. December is eating month here in USA and that brought my symptoms back. Restarted nexium and took for 10 days and then the side effects bothered me, so stopped again. So, just managing with maalox. For me, this affects me mainly in the night. The blocks don't work for me and i use a higher pillow, but then sometimes move down in the night.

I have also seen that this night GERD causes me chest pain, so i try to be very careful now. Also, i am seeing that these PPI work on me for about 7-10 days, and then stop working and cause strange side effects. So strange.

Raj
Posted 1/12/2012 5:36 PM (GMT 0)
Hi Raj -
- Do all PPIs give you side effects - have you tried all of them?
- What about the H2-blockers? Have you tried all of them as well?
- Regarding the surgery thoughts then ... you don't want to consider TIF?

Thanks
Posted 1/12/2012 6:11 PM (GMT 0)
I have tried prilozec, pantaprozole and nexium, so not all of them. But i just don't feel good after few days taking them. Same with Zantac etc. Maalox works good for me, so i manage with it as and when needed
My plan it to mange as much as i can with food control and other things. and i think that is working fine for now.
Surgery, linx etc are all the last options for me. And its good to know that these options are there and getting better in future if i ever need them
Raj
Posted 1/13/2012 5:08 AM (GMT 0)
HI PPI-Less

Yes, for dysphagia. I guess I still have it a bit. That is why I make sure I chew well. However, it is less and less noticeable. The toughest was in the first few days after surgery, then the first two weeks after surgery. That is when I needed to really watch what I ate. Then it is a linear draw down to less issues with food getting stuck. I can eat anything now at 45 days, but I still chew carefully and am happy to enjoy the food :)

In total the entire eating thing has been pretty easy for me to handle post surgery. It was something to deal with but even during the worst parts I was still happier than when I had GERD.

Raj - It took my body a long time to get used to PPIs. It was six years ago when I was diagnosed with GERD and started PPIs, but I recall it was months and months to get the right PPI and to feel at all good. My doc said it sometimes takes a while for the liver to figure out how to process the PPIs. 60MG Dexilant -which is time released was the best for me. The 2nd best was Zegerid 40mg. Yes, I experienced completely odd side-effects too. I got a lot headaches in the beginning. Also the feeling of a lump in my throat, tiredness, and low low energy when I wasn't tired. After several months the headache and lump in throat went away but the low energy did remain but I was able to fight through it some of the time.
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