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Sandra W
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Quote Sandra W Replybullet Topic: Inlet Patch Treatment: Who's telling the truth?
    Posted: 30 May 2013 at 3:57pm
Hi All,
 
Last year I was told I had an inlet patch and that this could be treated with HALO.  Now they have decided not to treat the patch, although they think it is causing symptoms.  Their excuse is, in their words, that inlet patches haven't yet been treated with HALO and that there are no trials running.
 
However, I have just googled and found all of the following:
 
 
Videos at these links:
 
 
 
 
So, it would seem that the big question here is just who is telling the truth?!!!  LOL!!!
 
As I see it, either inlet patches have been treated with HALO or they haven't. 
 
Any thoughts on this anyone?
 
All the best,
 
Sandra.
 
 


Edited by Sandra W - 30 May 2013 at 4:19pm
E-mail: swilliams888@hotmail.co.uk
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chrisrob
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Quote chrisrob Replybullet Posted: 30 May 2013 at 4:24pm
You could try asking Covidien what their view is on this. (I did actually ask their European gastro manager about your case last year.)
Unfortunately, they don't have much of a UK web presence presently (and treatbarretts.co.uk has been nabbed by Lawrence Lovatt's UK HALO registry) but you can ask a question via their FAQ suggestion box on their treatbarretts.com site.

Edited by chrisrob - 30 May 2013 at 4:25pm
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Sandra W
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Quote Sandra W Replybullet Posted: 30 May 2013 at 4:34pm
Hi Chris,
 
Thanks for reply. 
 
Last year I contacted Barrx / Covidien and received a message from one of their medical directors who said that there were no data available relating to RFA of inlet patches.  
 
I don't know if the situation has changed since then, but it is certainly intriguing and very, very strange.  I suspect it's a case of whether or not the consultant planning the treatment can be bothered to make the effort, especially if it benefits only the patient and the medic gets no trial data or another qualification out of it!!!
 
Oh well, we'll just have to wait and see what happens; in particular, whether or not I get the rest of my treatment.
 
Will keep you posted.
 
All the best,
 
Sandra.
E-mail: swilliams888@hotmail.co.uk
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Sandra W
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Quote Sandra W Replybullet Posted: 31 May 2013 at 9:47am
Hi again Chris,
 
I have used the link to send a question.  I will let you know what they say.
 
Best,
 
Sandra.
E-mail: swilliams888@hotmail.co.uk
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Sandra W
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Quote Sandra W Replybullet Posted: 31 May 2013 at 10:18am
P.S. I have just found this article: http://www.centergihealth.com/gastroenterology-case-studies
It seems that this treatment HAS been done and worked well!!!
All very mysterious, and it certainly make me wonder why they have changed their plan to treat my patch.  I am NOT happy!!!
 
Sandra.


Edited by Sandra W - 02 Jun 2013 at 1:14pm
E-mail: swilliams888@hotmail.co.uk
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jcombs99
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Quote jcombs99 Replybullet Posted: 31 May 2013 at 10:49am
S
Gee that's what I was thinking Halo the Hxll out of it and I guess it doesn't go DEEP because the O is like 2 or 3 mm thick .Covdion SELLS and they give a short course on how to use the machine then the doctor does what he wants with it .
    Good bit of homework there S and that's how I found my doctor and the way they treated me 5 years ago wasn't the Approved way BUT it was FASTER and Cheaper .
Pay attention NHS.

Maybe contract one of those doctors I wouldn't wait for NHS they have only ben doing Halo for a few years (cost)not need.

HGD Jeff
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Sandra W
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Quote Sandra W Replybullet Posted: 31 May 2013 at 10:58am
Hi Jeff,
Thanks for reply.  Yes, it's all very strange - I don't know what's going on in my case.  They said last year that they would do the patch, but it eems that they have now changed the plan for no apparent reason.  In fact, I am not entirely sure yet if they are going to do the treatment for the squamous dysplasia, or if they want me to get a referral from my GP and go somewhere else.
 
It seems from the links I found that treatment of inlet patch has been done succesfully, so I can't understand what the problem is with treating mine.  I guess it will get sorted out eventually, and it will be interesting to see the reply I get to my enquiry on treatbarretts.com.
 
Will keep you posted.
 
All the best,
 
Sandra.


Edited by Sandra W - 31 May 2013 at 10:59am
E-mail: swilliams888@hotmail.co.uk
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jcombs99
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Quote jcombs99 Replybullet Posted: 31 May 2013 at 11:10am
S
Most doctors don't want to go against other doctors (they say data doesn't support this) and are afraid to try newer ways. Because if they fail it could hurt their career .That's why I have great respect for my Doc he had the First Halo machine and like 3K Halos done today .It would've been much easier for the doc to pass my case on to the surgeon and be done with IT.

We both risked it and we both made out.

Jeff

Edited by jcombs99 - 31 May 2013 at 11:11am
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Sandra W
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Quote Sandra W Replybullet Posted: 31 May 2013 at 11:34am
Hi Jeff,
 
You are definitely right about this - most of them are more concerned with what's best for them and their career than what's good for the patients.  You are very lucky to have a doc who does what's right for the patients, and it's good that your tratment has worked out well.
 
Will update when any more news about what's happening with mine, although it all seems to be taking a very long time to sort out.
 
Best,
 
Sandra.
E-mail: swilliams888@hotmail.co.uk
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chrisrob
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Quote chrisrob Replybullet Posted: 01 Jun 2013 at 8:34am
Hi Sandra,

Sorry, was out all day yesterday and missed this thread.

The other consideration regarding HALO of inlet patch is that your doctors haven't performed this before and may not have sufficient confidence in the proposal?

I'm guessing they're thinking of risk factors along with the necessity for the treatment as well as the possible outcomes of different approaches?

But I hope you get the best treatment soon.

Cheers

Chris
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