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When linx goes wrong

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Posted 9/16/2013 6:00 AM (GMT 0)
Hi all. I had linx 5 months ago.
I self funded as i couldn't wait any longer for the nhs.
All went well, i took it very easy and was delighted with the results. All my reflux oroblems had gone :-).
I do a very physical job so slowly reintroduced various actions.
After 3 months i moved some heavy (25kg) objects. That night i had painful burning in my chest. This was about 2 months and since then things have just gone down hill.
I now have all my reflux symptoms back.
Had a barium swallow done last week. The linx seems to be in place but is letting reflux back through. I am at the mercy of the nhs now as my private medical insurance won't cover it. All i can do is wait.........
Posted 9/16/2013 6:27 AM (GMT 0)
Hi Number 5,

I too am experiencing the same issues. I had the linx 4 months ago, but for me the relief never really came. I still have a lot of burning in my throat, and I burp all the time and feel reflux coming through everyday. I haven't had a follow up yet because my surgeon is in Cali and I'm in Las Vegas, but I'm going on Oct 3rd to get more testing done. Unfortunately I can't have the barium or endoscopy done because I just found out I'm pregnant (who knows how much worse the heartburn will be now!), but I'm getting the 24 hr ph done again to show whether I have reflux or not, which I'm pretty sure it will show. I'm in a similar boat and feel that I'll I can do is wait too. Such a bummer!!
Posted 9/16/2013 6:28 AM (GMT 0)
I wonder if the Linx is too loose and that it can be readjusted for us?
Posted 9/16/2013 8:02 AM (GMT 0)
Hiya shrtcak81
I think mine is either to loose or its something to do with my hernia repair. I will just have to be patient and wait for my barium swallow results.
Posted 9/16/2013 9:43 AM (GMT 0)
Hi, Number 5

Sorry to hear that things are not too good for you.

Is it not possible to go back to the clinic / hospital where they carried out the procedure and ask if there's anything that they can do. Surely even going private in the UK there are rules and regulations that they have to follow and offer help if it goes wrong. As the Linx doesn't seem to have moved then perhaps your correct that its possibly the hernia but if they carried out the hernia repair then they are obliged to help. If the Linx is to loose then surely that's down to them too but don't you think that if it was to loose then it would not have worked from the start.

I'm also in the UK and know what it's like at the mercy of the NHS -it takes forever to get things done.

Like you I am going private to get the Linx fitted but I would hope that there is at least some follow up protocol if all doesn't appear to be correct within the first year.

Is it possible to ask where you had your operation and are the NHS willing to help if the Linx was fitted privately?

Maria
Posted 9/16/2013 9:54 AM (GMT 0)
I paid cash (£8145) for mine and had it done in London.
My Surgeon does some work with the nhs so i can see him that way, but i'm at the mercy of the waiting lists :-(
Posted 9/16/2013 11:30 AM (GMT 0)
Number 5

Thanks for the info. I got my tests done through the Reflux Centre in London. I had my 24 PH test and Manometry tests done in London but was then referred to a consultant in Leicester as it is easier to get to by car from where I live.

It's good that at least through the NHS you'll see the surgeon that did your operation so he may have an idea of what to do. Hopefully you won't have to wait too long.

If it turns out to be your hernia will they be able to repair it on the NHS and re-fit the Linx or will you have to go private again because it involves the Linx?

Let me know how it turns out for you

Maria
Posted 9/16/2013 3:20 PM (GMT 0)
Just a thought! Question for your Linx surgeons -- while the Linx has a specific location that is under the v nerve on one side and over the v nerve on the other ( this is per protocol), and it is in direct contact with the hiatus (opening in the diaphragm)--it is possible for the linx to tent at an angle through the hiatus allowing reflux up the esophagus. You may or may not see this at the time of the barium swallow test. This is possible even with a hiatus hernia repair as one or two stitch h repair may not be enough to prevent this and during surgery the body may not have shown the true size of hernia as you are in a recline position. If the Linx stays at an angle through the hiatus opening ( even the entire Linx going above) then the problem of reflux will continue until it slips back into place below the diaphragm. I believe this problem can occur with heavy lifting, bending over, straining on toilet, exercising etc. please ask your doctors and let us know what they say. It is very logical but getting them to agree may be another matter. Thank you for listening and let me know your thoughts too. A call to Torax might help us all. I sincerely hope they read HW forum. They need to know our concerns and address them instead of telling us to discuss it with our surgeons. Wish you the best. Pat
Posted 9/16/2013 4:47 PM (GMT 0)
Hi Pat,
Thats very interesting. After the heavy lifting i did, i got a burning pain in my chest and i had ro reach for the gaviscon.
Before i had my linx and hernia repair i had a Sharp pain in the middle of my chest when i stood up after bending. This was the hernia. It completely went after the operation but returned after the lifting so it could well be the hernia.
Thank you
Posted 9/17/2013 10:20 PM (GMT 0)
Number5

To continue with the above-- there is a Linx patient on the HW forum that has had two barium swallow tests post Linx implant. Both tests showed the Linx tenting/ rising above the diaphragm. This patient was still having symptoms. The surgeon said this occurred on another Linx patient and that patient had no on-going problems. So that's at least two known post Linx patients with the Linx tenting above the diaphragm. Number5 , just thought I'd mention the above. Please let us know what your doctor tells you about your health issues and barium results and maybe ask if this could be a problem.

Regarding being too loose. The Linx is placed around the esophagus after measuring three times. It is my understanding that it is not placed tightly to close it but only around it to keep it from opening easily. Yours was working before the heavy lifting. Also the heavy lifting could MAYBE break open the 'goo' that formed protectively around the Linx and it will re-seal itself. Kindest regards. Pat
Posted 9/18/2013 5:16 AM (GMT 0)
Thank you Pat Fill.
I have an appointment with my surgeon on October 15th but am pushing for an earlier appointment. I am not feeling good :-(
Posted 9/18/2013 5:38 AM (GMT 0)
If heavy lifting is the case, it will be posting warnings everywhere.
There are so many people who have had linx and can't wait to get back to the gym.
I was told 'no heavy lifting for a month'. To be on the safe side i didn't lift anything heavier than 10kg for 3 months, so thought i'd be fine to move a few paving slabs (not big ones). Its been 3 months now since the lifting incident and things have gone down hill big time since then. I feel as bad as i did before surgery.
I am self employed so i just have to grin and bare it.
Posted 2/13/2014 10:54 PM (GMT 0)
Are you both still having issues?
Posted 5/24/2014 5:00 PM (GMT 0)
Hi, i'm back.
I had all the tests done. The only thing they could find thatvwas wrong was that not all food/liquid was passing through the linx, therefore i was a possibility itvwas too tight. I was offered 'dialation'.
I never had it done as all symptoms seemed to disappear again.
Hear i am though 14 months post op and the linx area feels very tight and almost sore so am probably going to have to have dialation. At least its a quick fix.
Posted 5/24/2014 10:54 PM (GMT 0)
Hello Number5
We are glad to hear from you. What follow up tests did you have? What does one do when the recent endoscopy shows 'normal' with no erosion, redness, irritation and Linx worked appropriately when beads were jiggled; the barium video showed the same and no hernia evident on either test. ---Symptoms continue.

The research we are doing on 'sliding' hernia tells us that they are not always shown on these two tests. In addition, the textbook stated that for a 'sliding' to show you should do the valsalva strain while swallowing a bolus at the same time. We've never been asked to do that other then just strain. What are your thoughts on this. ( wonder what would happen if they turned the examining table head down then do the tests. We asked the GI to do this during endoscopy but he didn't ).

We were told options: 1. Live with it. 2. Take it out. 3. Exploratory surgery but could create additional problems including a hernia itself due to scar tissue. He would not replace the Linx. 4. When asked if he would do fundo upon removal, -- no, have to wait 3-6 months to see if symptoms change, then redo all the tests. What a dilemma. What have you been offered and what would you do ?

The symptoms prior to Linx were so bad that the option to just take it out without immediately doing the fundo was not acceptable. Thanks for listening.

Wish you the best with this Linx . We REALLY wanted it to work and be the solution to this health issue.
Posted 5/29/2014 12:50 AM (GMT 0)
Hi Number5. How are you. Are you better. Did you get dilated. Thinking of you. Pat
Posted 2/12/2015 3:26 PM (GMT 0)
Hi Pat Tall, (i've changed my name i use to be NUMBER 5)here i am all this time later. Things have improved got worse, improved,but now they are really bad again i like your 'tenting' idea, i did suggest it to my surgeon, i am waiting again for all the tests and yes my surgeon said if it isnt working he'd do nf on me
😞
Posted 2/17/2015 2:54 PM (GMT 0)
for the love of god why does this happen in all these threads
Posted 4/15/2015 12:48 PM (GMT 0)
Linxbud Number5 I may have missed some of your replys. But wondering about the hernia, possible tenting or going above the diaphragm, how are you generally doing with the Linx and lifting and eating and weight. My family member still has Linx three years in May 2015 and still has problems and AGONIZING over the decision to have it removed and have fundo done. All kinds of symptoms ongoing . The trick question asked by the doctors is "are you doing better now then before implant". If you say yes then they consider it successful. It seems they don't hear anything after that . It doesn't seem to matter that you have ongoing symptoms. We anticipated that there would be more improvement then this , not 100%.

Another thing brought to our attention was all the information about "bio films" the body creates. Isn't that what develops around the Linx as the body considers it a foreign body. Could that create problems so close to the esophagus, vagus etc.

I sincerely wish you well. They need to have a better solution. Take care. Hope to hear back from you. Pat
Posted 4/15/2015 6:33 PM (GMT 0)
Hi pat tall.
I had a 24hr ph and manometry test done last week, should has results soon. I haven't got a clue what is wrong other than most of my symptoms are back and esophageal pain is keeping me awake at night.
I refuse to have a nissen, if linx doesn't why should nissen? Thanks for your replies.
Posted 4/27/2015 7:17 PM (GMT 0)
Linxbud any results yet. Thinking of you! Any plans or answers. Tenting, diaphragm involvement? Bio films for foreign device. So confusing. Hope to hear back from you.
Posted 4/27/2015 7:50 PM (GMT 0)
Still no results. Once i get them its back to my surgeon.
Posted 5/25/2015 3:39 PM (GMT 0)
Got my 24hr ph and manometry test results back. Basically everything 'appears' to be with in a normal range but i am refluxing. I posted results on a facebook group and a linx surgeon did say that i may be pooling what i reflux up above the linx.
I cannot get an appointment to discuss my results and options with My surgeon as he is now only private and i cannot afford him. I have managed to get one with a non linx gi surgeon, but he can at least explain the results.
At the moment the pain and burning in my chest is awful. Back on all my medication. Lpr symptoms are really affecting my lungs.
I am considering getting the linx removed and having nissen fundoplication as i am getting nowhere linx wise.
Posted 5/25/2015 5:13 PM (GMT 0)
Hello Linxbud. It is awful. Please get a copy of those test results and read them yourself. Your symptoms speak for themselves,-- something is definitely going on. How many episodes of reflux did you actually have( acid and non-acid). Night or day reflux. What was the ph listed. We found that the results being "acceptable" depends on the opinion of the doc. You know your own body.

My family member (3years post implant this month) continues with problems. We even had titanium allergy test. Looking at v nerve issues. It is very hard to go ahead and say take it out and do fundo.
That's a hard decision especially when a surgeon tells you to gain weight before surgery. Now at 105 lbs at 5'8". He also said after surgery don't gain weight as not good for NF. No one at the mfg company will help-- they just refer you back to your surgeon . A non- Linx surgeon won't help. "We don't know anything about it" or "it hasn't been proven yet regardless of those printed statistics". "Go see the original implant surgeon". On and on

I wish you well. Let us know what your surgeon says especially about hernia and tenting above diaphragm. Pat

Please ask about the hernia and tenting above diaphragm.
Posted 5/25/2015 5:41 PM (GMT 0)
Hi Pat. I am seeing a non linx surgeon next Saturday so he can explain my 24hr ph and manometry test results.
I self funded my linx and my surgeon cannot do anything linx related on the nhs which is why he has suggested nissen. I am only 'considering' as my symptoms are getting worse. My Doctor is prepared to refere me to an NHS linx surgeon which i think i will go for at least then if the linx needs repositioning he can do it.
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