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Linx system surgery Part 2 of 2

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GERD & Acid Reflux
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Posted 7/25/2010 3:28 AM (GMT 0)
I keep my fingers crossed for you and send you my support.
Gilad
Posted 7/27/2010 8:10 PM (GMT 0)
Hi everyone,
Had my contrast study this morning. This time the Docs gave me my own monitor to watch!! I got to see first hand my Linx work and it is the most amazing thing. I got to see it open and close just the way it was designed. We also saw the Bravo capsule still attached to my esophagus. Hopefully it will fall off soon although it is not causing any pain or discomfort until I eat something. My thanks to the GREAT team of Docs and nurses at Strong Memorial Hospital for everything they have done for me these last two weeks of tests. They go well above and beyond in patient care. They are the best!! I see my surgeon on Thursday and will go over the results of all of the tests. Hopefully at this time I will find out what the biopsies were done for and the results. I will report back after Thursday. Hope everyone is doing well and stay healthy. Shooz
Posted 7/30/2010 1:02 PM (GMT 0)
Hi everyone,
I know with any experimental testing there are successes and failures. I bummed to report at my Dr. visit yesterday I was informed that I fall in to the failure category. Although I don't show the signs I'm still refluxing acid into my esophagus, the Bravo study proved that it is there. I have a ulcer (inside my esophagus just above the Linx) and a slight protruding of my stomach just above where the Linx is. As a result he has put me back on Protonix once a day at night and I have to go back for a scope in 3 months to see if the ulcer goes away. If it doesn't we will have a talk about more traditional surgery, Nissen and taking the Linx out. I'm happy for the other Rochester subjects as 3 of the 4 are doing great and it is working perfectly (the 4th hadn't seen the doc as of yesterday). For the past year it seems that the Linx has been working well, I haven't had the problems that I had before surgery. I'm really bummed and depressed that I'm the failure. My Doc did say that the Linx is doing some of it's job and he wouldn't take it out at this time. I hate the thought that I'm back on the Protonix. What a way to ruin a weekend!! I'm going to feel sorry for myself for a while and then pull myself back up and move forward. Thanks to everyone for your support over these past months. I'll keep in touch. Shooz
Posted 7/30/2010 1:33 PM (GMT 0)
Shooz,


I am sorry to read your post and learn that your Linx is not helping as it should. You have the right to feel down and let your feelings out. Please know we are here to support you and will continue to do so as you journey on dealing with each day one step at a time.



Gentle Hugs,



Kitt
Posted 7/30/2010 2:39 PM (GMT 0)
Terrible, terrible!!! My surgeon told me that since it's experimental you can expect pretty much anything to happen, especially with a metal thing which doesn't adapt. I had a choice of Linx, Esophyx and Nissen and chose Nissen, since it has the highest recorded success rate and the lowest rate of complications. Going under in 9 days. Eeeeeeek. No worries, I'm sure your surgeon can do you a perfect Nissen after Linx.

Post Edited (rummaan) : 7/30/2010 11:25:44 PM (GMT-6)

Posted 7/31/2010 2:20 PM (GMT 0)
Hi Shooz,
Thanks again for updating everyone. It is a bummer and I am also disappointed for you very much.
I wonder why it didn't work for you. On a positive note, the bracelet can just be removed and you can have the more traditional surgery. It is not so simple to reverse other procedures. I am not even sure the other procedures are reversible at all, so you are in a good position there.
Did you speak or meat with any of the other patients that the doctor claimed were successful?
So far I didn't read even one person's testimony that claims to have had a successful Linx procedure.
Keep your spirits up
Best wishes
Gilad
Posted 8/3/2010 2:28 PM (GMT 0)
Hi Shooz,

Sorry to hear about the complications you're having with the Linx. I had high hopes for the device, but it sounds they need to make some improvements. From what you say it seems the release force of the ring was too high for your esophagus, causing food and acid to get stuck above the linx. That might be what caused the ulcer. Also as your esophagus struggled to force food past it, the walls of the esophagus may not have been strong enough, resulting in the herniation you have above the linx.

It doesn't sound like it was a total failure though. I bet without the Linx your reflux would be much worse at this point. And as Gilad said, you have the option of having it removed and trying the fundo. Imagine if you'd had the fundo and that had failed, then you'd be in a tougher spot.

I'm starting to doubt that they can make a passive metal contraption that will not have a negative long term impact on the soft tissues of the esophagus. It seems like they need to make it more adjustable or reactive. Somehow it needs to work like a muscle, where it opens itself to let food pass, rather than relying on the muscles of the esophagus to open it. And it needs to be fine tunable post-op to get just the right closing force. Perhaps the most promising approach for a GERD cure will end up being some kind of bioengineering using stem cell therapy, to rebuild and strengthen the muscles of the esophagus.
Posted 8/4/2010 5:24 PM (GMT 0)
Hi Speden and all,
Now that I have had the weekend to pull myself together, my Linx isn't a total failure. The acid that is leaking has caused the ulcer and it could be that the device has slipped some causing it to be lower that what it should. As my surgeon said stay on the meds for 3 months and clear up the ulcer (he's sure the meds will take care of it) and then move forward. If necessary they can take it out and do the more traditional surgery. I still believe that it had done more good than bad as I haven't had any vomiting of acid since 9/4 last year when they put it in. The study has very stringent requirements and manometry is one. So for now I will take the meds, clear up the ulcer and hope for the best. there is still a possibility that the Linx could be moved. Thanks to all for your support and kind words of encouragement. Shooz
Posted 8/26/2010 5:15 PM (GMT 0)
Hi everyone,
Thought I would give you a quick update. I have been back on meds (pantoprazole) for a month now and the only difference I feel is the lump that I had in my throat seems to have disappeared!! I have an appt with my surgeon in October for another scope and then as long as the ulcer is gone we decide what the next step will be. I'm hoping that we can reposition the Linx. If not I will probably be forced to remove it and possibly go to the Nissen. The Linx is still working and I'm hoping there is a fix for the acid leak problem. I hope everyone is doing well. Keep smiling Shooz
Posted 10/20/2010 5:47 PM (GMT 0)
Hi everyone,
Sorry that I haven't been more active here, I have been doing some extensive traveling for my job including a trip to Singapore. Had to endure the 20+ flight in COACH!! what a trip, a beautiful place once you get there. A quick update on my Linx, I'm going to the Dr.'s tomorrow for a follow up scope. It has been 3 months since my last visit and he put me back on Protonix. He will get a look to see if the ulcer has cleared up and then we will talk about the next step, reposition, remove and possibly traditional surgery. I'm optimistic that we might be able to reposition the Linx instead of pulling it out and the Nissen. Wish me luck and I'll let you know what happens. Shooz
Posted 10/23/2010 4:55 AM (GMT 0)
Best wishes for a great outcome, Schooz! We're rooting for you! yeah yeah yeah yeah Let us know what they decide. Thanks for sharing. That was some amazing travel! I'll bet it was very educational.
Again, good luck, and keep in touch!
Denise
Posted 10/23/2010 3:49 PM (GMT 0)
This Thread is Locked due to length.   Please see Part 3.
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