Linx Update for the UK

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mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 10/1/2012 10:49 AM (GMT -6)   
Have found out today that one of the UK centres offering Linx surgery has now said that the presence of Barretts is no longer a barrier to having the device fitted. So long as the Barretts area is very small and non-dysplastic, you may still be eligible for the device.


MMM

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 10/1/2012 2:41 PM (GMT -6)   
Hi mmm, that's good news, thanks for posting. Do you also have Barretts?

I picked up this recent report from google,

"A PATIENT at the Royal Devon & Exeter Hospital said his life has been transformed after being the first person in the UK to benefit from innovative surgery for a severe digestive condition under the NHS.

The RD&E has become the first NHS hospital in the country to perform the procedure for sufferers of Gastro Oesophageal Reflux Disease (Gord), a severe and persistent form of acid reflux."

http://www.thisisexeter.co.uk/Pioneering-RD-amp-E-op-allows-Luke-eat-sleep/story-16788535-detail/story.html

I still want to see the results of the Endostim trial next March, before persuing Linx.

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 10/1/2012 5:01 PM (GMT -6)   
Hi, yes, I do have a tiny area of Barretts. I've had two phases where I couldn't cope with the PPIs, but am tolerating now. So surgery keeps appearing on the horizon and then disappearing again!

MMM

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 10/2/2012 1:40 PM (GMT -6)   
hi mmm, I think I also have a small area of Barretts, although I still have no confirmation from the biopsy. I guess i'll have to go and see my GP to see if he has had a letter from the local upper GI dept at the hospital.
Assuming I do, I was thinking of asking for ablation, but did not neccessarily want to go for this without a longer term plan to fix the LES.
I think your news about the potential for Linx in Barretts patients is great and opens up a door for people like us to consider treatment other than continual medication or Nissen.
It is also encouraging that this may be made available on the NHS. One negative, in the NHS guidance comments, was mention of an old device, similar in some ways to Linx, called 'The Angelchik'. This had some problems...
"The Angelchik device (from the 1980s) suffered from serious side effects (erosion into oesophagus, slippage) which became evident after 2-3 years experience)"

I will look up Angelchik and see how and if it compares with Linx.
Most comment from the NHS guidance seems to be positive.
Cheers
Phil

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/2/2012 2:35 PM (GMT -6)   
MMM,
 
Thank for sharing this info as I know many members will be excited to read the news.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"I am not afraid of storms for I am learning how to sail my ship" ~ Louisa May Alcott

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 10/3/2012 3:31 PM (GMT -6)   
Hi Phil,

I thought if someone had LINX or even the Nissen that any areas of Barretts may resolve naturally? I guess a person could have the surgery/device and then get rescoped some time later to see if ablation is still needed?

Don't know if I fancy having magnets in situ or not! My Barretts is only around 5 mm and hasn't got bigger despite a flare up and a period of time unable to tolerate the drugs, which is reassuring.

You could ring the consultant's sec by the way- you should have been asked if you wanted a copy of the GP letter. If not, ring up and ask for a copy. If it doesn't specify about Barretts then I would ask the consultant to write to you or see you to clarify.

Kitt - good to see you on the move!

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 10/5/2012 3:12 AM (GMT -6)   
mmm, I think I read somewhere that Barretts can resolve naturally, I can't remember where.
I suppose my reasoning about getting ablation was because I thought that it was a requirement for Barretts patients to be clear for a period of time before Linx could be considered.

Good idea about calling consultants sec.

jpt, Agreed, Angelchik looks very different. It was not circular, so slippage should have been expected!

cheers
phil

r74t
New Member


Date Joined Nov 2012
Total Posts : 16
   Posted 11/19/2012 7:30 PM (GMT -6)   
Hi all.
I have spoken with a surgeon today and have given him my circumstances rearding GORD (I have been on lansoprazole for 16 years, am 38 years old, not overweight and also on ranitidine since May 2012 when I was also diagnosed with a short section of Barrett's. I have previously been offered a fundoplication, but declined, as the potential negatives didn't particularly fill me with confidence, a fundoplication not being reversible and all) and he advised that there is an opportunity to have a LINX device fitted in England, as long as the Barrett's is short, and the patient meets other criteria. This is not definite for everyone, but certainly a possibility and final confirmation can only be achieved on meeting with him and discussing the matter in person, when he can consider health, age, weight, etc.
 
Regarding the procedure, there is a requirement to have a PH Manometry which can potentially be done through the NHS, if your GP agrees to request one for the patient.
I believe that LINX can be claimed via private insurance but certainly not through the NHS at this point. The cost is quite steep (twice that of breast augmentation), but considering the potential pros of the device (when positively overlooking the potential negatives, and remembering that there is an opportunity to reverse the procedure) I am willing to shell out some cash to get off of the drugs and, more imporantly, to shake that darned heartburn after all these years. 
 
In a nutshell then: the LINX procedure IS now possible for Barrett's GORD patients in the United Kingdom, who meet other criteria.
 
I hope any of this helps fellow sufferers who read this thread, as it certainly made me breathe a little more easy, no longer being totally excluded from what appears to be the right next step (for me anyway).
 
Regards,
 
Russ
Note: My opinions regarding the fundoplication are my personal feelings and should by no means adversely affect others' views of that particular procedure. One day I may need it anyway ...

2lips
New Member


Date Joined Oct 2013
Total Posts : 13
   Posted 10/22/2013 7:19 PM (GMT -6)   
Does anyone know if they do a halo procedure on Barretts before they place the linx?
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