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Sinfrontera LINX post op journal

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Posted 1/21/2014 1:03 PM (GMT 0)
sinfrontera

Linx study currently recruiting with list of doctors participating. Hope this helps. They have a contact person, if interested.


http://clinicaltrials.gov/ct2/show/study/NCT01940185
Posted 1/21/2014 3:23 PM (GMT 0)
sinfrontera,

I have been following your story, as your story is similar to mine.

I had the linx put in May 2012. 20 months ago now. Although I do not have the swallowing issues that you have, I can indeed feel the linx move and it is uncomfortable at times. I can feel it when I bend over, reach above my head, anything that would use my core to function. If I clap my hands, fold my arms in front of me, it moves. If I raise my right arm to take a drink of water and tilt my head back, I can feel the linx pulling on something. At times, I can also feel a ripping, tearing sensation in the linx area. Some times it happens several times a day, then seems to go away for a few days. Then it is like it starts all over again and it happens again.

I had two barium swallows and the linx shows it tinting above the diaph. Docs don't seem concerned. I have told my docs this and I have been told "no way", people can't feel the linx move. The linx is moving and causing various confusing symptoms that the docs just shake their head and say "we don't know". If I lay flat on the bed or floor, or reach above me, the diap stretches and then the linx seems to get stuck in the diap and causes reflux and the constant urge to swallow. The tell me "live with it" or "take it out" (the linx).

I have told the docs that the linx seems to be catching on various nerves too, because when I breathe, my neck seems to go numb and very rubbery. Very confusing.

I also believe like you do that the docs up-sell this product. Works right out of the box. Was told I could eat, drink whatever I wanted the day after surgery. Was told to lower my bed and stop ppi's right away. Was told to go back to normal activities 10 days after surgery. I feel that this is very inaccurate. I also had to stay the night in the hospital. I could not go to the bathroom either. I was a personal trainer. I still can not go back to the weights or normal exercising. I still fatigue easily and have nausea probably 3 times a day still.

I am very confused by my symptoms as well as the docs are, but they do not seem like they want to solve my problems. On my next visit, I am going to suggest them contacting Torax too.

Sometimes the reflux is resolved for a few days but I feel that these odd things are not acceptable. On the days that things are better, I hope that they will improve, but then it starts all over again. It is like a roll of the dice, never know what symptoms will be like for that day. I certainly expected things to be great after surgery and expected to go on with my life and return to the activities and foods that I loved.
Posted 1/21/2014 6:13 PM (GMT 0)
Hi Sinfrontera,

I was talking to the managing director of a company local to me that offers the Linx surgery and mentioned your situation (anonymously and vaguely of course!) He said of the approx 1,600 Linx surgeries that have been performed worldwide, there's been only 2 cases of erosion and no migrations that he's aware of. He said the best technique for placing the Linx, is for it to sit in a channel between the posterior vagus nerve and the oesophagus. That makes it very hard for the device to move.  You mention the Linx possibly having slipped down on one side, making it lie in a diagonal position. Can't they see if that's the case by doing a barium x-ray? 

I really hope you get some answers soon, it must be horrible being in limbo and not really not knowing what's going to happen. I saw Dr Louie's reply to you, what did you think of it? I thought the information about the new paper coming out that discusses the migration risk as being lower than 1%, sounded hopeful. 

As Grover Cat said, the surgeon would be the last person to say it'd been placed incorrectly and the migration risk sounds very low. 

I read that the LES is at the bottom on the oesophagus, where it attaches to the stomach. I don't understand how your Linx is below the LES if thats where your stomach attaches - does that mean its resting on your stomach? 

Dr Luigi Bonavina sounds as if he's one of the most experienced Linx surgeons, so I wonder if it's possible to contact him.

Pat - I think Torax read this forum as I remember them posting a link to it from their Uk twitter account, "LINXSystemUK"

Grover Cat - My situation is the same as yours - terrible reflux and heartburn, taking lots of medication and just can't get it under control. Congrats on getting on the Linx list :)

Beach Girl - I've been following your progress, really hope you find some answers too.

Post Edited (Greta_Garbo) : 1/21/2014 11:20:43 AM (GMT-7)

Posted 1/23/2014 12:42 AM (GMT 0)
Thanks Greta. I feel very lucky to be on that list. I'm still investigating the possibility of traveling for Endostim, but I think that the LINX is still a very good (and potentially a much cheaper) option, and I may be posting my own experiential blog here in a few months...
Posted 1/23/2014 4:59 AM (GMT 0)
Hi Greta Garbo,

What you were told by your contact at that company about the fact that he's aware of no cases of migration is really remarkable. I'm completely at a loss as to what to think. My surgeon doesn't question there was migration, despite the fact that the statistics say it's a near impossibility. He may not want to dig into the issue. I really want to talk to experts that might be interested in this case. If it is indeed a case of migration, then its causes should be explored. If it's not (if it was an error in placement), avenues for correcting the problem and staying with the linx technology (which has done wonders for me regarding reflux) should also be pursued. If you have any more insights or suggestions, please let me know. If only for research purposes, my case might be of interest to people working on the linx technology, and I'm happy to be of use in that regard (I'm a researcher myself in another field, so I sympathize). I may be distressed by my turn of events, but I'm also very curious.

I've written to Dr. Louie privately, and we'll see what he can say in a more unguarded way about my complications. I was also very interested and surprised by his responses to my questions on his blog. It really is not clear how the linx could actually be below the LES, and, if it is, what effects it could be having on pressure at that point. Is the area directly below the LES as mobile and elastic as the LES itself? Also, Dr. Louie's suggestion that, even if it is there, it should not have the strength to cause the symptoms I'm experiencing, was intriguing.

Contacting Dr. Bonavina would also be an interesting option. He is certainly the towering figure in the field. I'll try to get his contact information.

I'm working on ways to tolerate my current situation for the medium and long-term, which would give me the time to explore all options and exhaust all possibilities for staying with the linx. Becoming a "grazer"--eating small amounts over long periods of time during the day, makes things better. Food does not back up as much, and the esophageal irritation is reduced. Exercise helps too, and thanks to the linx, I can do that. I can live with this situation for a while (I think).

Anyway, thanks for your post.
Posted 1/23/2014 5:19 AM (GMT 0)
Hi Pat Fill,

I emailed the contact person at Torax that was listed on the website about the Linx study. I also mentioned my case in case I was not eligible for the study but might be of interest to people at Torax. I'll follow up by phone.

Thanks very much for letting me know about this! It was very helpful. Are you aware of others at Torax that one should contact?

Thanks again! I'll keep you posted.
Posted 1/23/2014 5:27 AM (GMT 0)
Hi Beach Girl,

I'm really sorry you are having these continuing problems. That you were a personal trainer and now have difficulty exercising must be difficult indeed.

Have you consulted widely with doctors about this? And you haven't checked with Torax yet? I would think that, with you being 20 months out and having these symptoms, they would be interested in the case.

All the best, and let's stay in touch.
Posted 1/24/2014 1:06 AM (GMT 0)
sinfrontera

Thanks for your response. This particular link might help too:

http://www.toraxmedical.com/about_torax/management.php

By the way, they probably made an internal video of the surgery due to the newness of the procedure. That was probably one of the ports. Wonder if this would help with finding cause of problem. Don't know if this would be helpful. Please keep us all posted. Thanks. Pat
Posted 1/25/2014 1:55 AM (GMT 0)
Torax didn't have much to say, other than thanks for telling us, keep working with your surgeon, and we wish you the best. Disappointing, to say the least.
Posted 1/25/2014 5:11 PM (GMT 0)
sinfrontera
I was hoping you would get more info from Torax. They (Torax) told us to contact our surgeon too and HE was welcome to contact Torax. We went to an outside surgeon (not Linx trained) and had a very hard time getting an appointment when they wanted to know why. After literally begging for an appointment--the surgeon was very nice--he was very interested in seeing our OR report of Linx installation and barium video of Linx, etc. but said we needed to go back to our Linx surgeon.

Was a video made of your surgery?

Thanks & keep us up to date. Kind regards Pat
Posted 1/29/2014 3:41 PM (GMT 0)
All,

I went and saw the linx surgeon on Monday. He told me that the new updated linx recommendation is to give the implant 3 years before maximum effectiveness.

I was also told that I am one of about ten people who have had the linx that are experiencing these kinds of problems. He said that my body and the linx were not interfacing like it should be and that my body just does not like the device. He suggested I give it to the 3 year mark. He also suggested acupuncture to see if it can help get the body working better with the linx. Has anyone had any success with acupuncture? Don't know if I can wait that long.
Posted 1/29/2014 4:59 PM (GMT 0)
Hi,

Beach Girl, did your surgeon say what that 3 year mark is based upon? Is there a new LINX study in press that just hasn't been published yet? Also, are you one of his 10 patients or are you one of ten around the world?

Thanks!

GC
Posted 1/29/2014 5:17 PM (GMT 0)
GC,

I am one of 10 around the world.

I asked him where he got the 3 year info and he said that he just got back from a meeting with all the linx doctors and that it was discussed at this meeting and determined that effectiveness seems to take 3 years now. I think it is based upon the follow up survey from Torax on "Patient Satisfaction". He did mention that patients seem to show the most improvement at the 3 year mark. I was wondering if that was really the case or do patients just accept their symptoms and become used to them after 3 years.
Posted 1/30/2014 12:02 AM (GMT 0)
Huh, yeah that's interesting. Hopefully it's not just because of getting used to the idea of sub-par, and hopefully they don't keep pushing back the max benefit as time goes on... Although, I suppose it's encouraging that things continue to get better over time for the majority of LINXers.
Posted 1/30/2014 12:03 AM (GMT 0)
Sinfrontera, how are you doing? Any updates?
Posted 1/30/2014 1:08 AM (GMT 0)
GroverCat. Possible upcoming data:

"Since the insurance battle has been about lack of data supporting the LINX compared to Nissen, we (Drs. Farivar, Aye and Vallieres) have just completed a study comparing the two devices. As I write this, I am on my way to the Society for Thoracic Surgeons annual meeting to present our findings, which will hopefully be published in the Annals of Thoracic Surgery later this year.

This study shows that LINX and Nissen are the same in terms of treating the patient’s symptoms of GERD, improving the patient’s quality of life and normalizing the level of reflux in the esophagus without the need for PPIs. However, LINX is a shorter operation, has less complications and results in a more physiologic sphincter since patients are able to belch and have less bloating or gas the Nissen patients."
Posted 1/30/2014 1:12 AM (GMT 0)
I apologize. The above was from Dr. Louie's blog
Posted 1/30/2014 4:32 AM (GMT 0)
Thanks, Pat. That's really informative.
Posted 2/3/2014 9:50 PM (GMT 0)
Hi Folks,

Well, now there is a new theory about my situation. My surgeon checked with Torax and with others as well, and now they think that perhaps a hernia (or something) pushed the LES and linx up above the diaphragm. It's possible the second pressure point below the LES, which was thought to be the linx that migrated down, may be the diaphragm itself. They've ordered x-rays, which I should do tomorrow.

I'm hoping that if true, this is good news. Maybe they'd just have to pull the hernia back down and bring the linx below the diaphragm where it belongs. This would keep me with the lynx! But I have no idea if that is indeed the case. I'll keep you posted.

Beach Girl, the three year improvement mark with the linx was an interesting piece of information. you are about a year post-op, correct?
Posted 2/3/2014 10:43 PM (GMT 0)
sinfrontera,

I am currently 21 months. I wonder where the data is to back up his theory??

Wow, that is interesting what the doctors discovered about your linx. Please let us know what the x-rays show. Maybe it can help me somehow.
Posted 2/4/2014 1:17 AM (GMT 0)
sinfrontera
That is just so interesting. Please keep us informed of your X-ray results. Are you able to access your medical reports by Internet? It would be helpful for you to get copies of the doctors notes , usually available a few days after your visit. (Same for the radiologist). I find that I learn more from their written reports then in person talking with them. Also, it is my understanding, by law, that they can't say 'no' to your request for copies, but they can possibly charge you for the paper copy. It's good to have on hand and might be enlightening. Wish you to get the best of health and SOON. Pat. ( if I have lab blood test, I'll go in and GET a copy of the results BEFORE doctor appointment and am able to discuss/ask questions). No more of this "everything's okay" when things are out of norm.
Posted 2/4/2014 4:35 AM (GMT 0)
Hope this turns out to be the case!
Posted 2/4/2014 7:57 AM (GMT 0)
I vomited violently and horribly for about 7 days after my LINX surgery. I would think if something was going to make it move, that would do it. I have not had any issues with migration, it seems as if maybe you were not a good candidate or the decice was not installed properly. They told me to be eligible you could not have a hernea or if you had one it must be very small.

Have you thought about consulting one of the other LINX doctors for their opinion?
Posted 2/9/2014 10:57 PM (GMT 0)
sinfrontera,

How are you doing? What were the x-ray results? Any more news? I am following you very closely.
Posted 4/10/2014 8:29 PM (GMT 0)
Any updates?
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