General
 Barrett's Support Forum :Barrett's Support Forum :General
Message Icon Topic: Hi I am a new girl Post Reply Post New Topic
Page  of 2 Next >>
Author Message
ledge
Newbie Plus
Newbie Plus


Joined: 21áSepá2015
Online Status: Offline
Posts: 7
Quote ledge Replybullet Topic: Hi I am a new girl
    Posted: 21áSepá2015 at 7:50am
Good Morning -  am like most of you reading am a Barretts sufferer.  I am lucky that so far my biopsy has shown no since of dysplasia.  However,  I am not so luck in that I suffer from severe reflux which has now affected my  sp eaking and worse  I have a very reduced lung funtion which I presume is due to aspiration of stomach contents  going into my lungs.  The damage to my lungs is not reversable and I am considering fundoplication to stop further  worsing of my symptons.  However,  after reading horror stories of the side effects and complications of fundoplication,  I am wondering what on earth to do.  How do I choose  surgeon, what questions do I ask  when I see one, What if any resassurances should I ask for.    Indeed should I even go down that route?  Thanks for any answers.
IP IP Logged
chrisrob
Admin Group
Admin Group


Joined: 01áMayá2007
Online Status: Offline
Posts: 2602
Quote chrisrob Replybullet Posted: 21áSepá2015 at 10:07am
Hi Ledge and welcome to the forum.

Sorry to hear of your problems but I can entirely empathise as I had these problems myself.
Aspirated extra-oesophageal reflux can cause damage to the lungs. (You can read about aspirated extra-oesophageal reflux here.)

For me, years of living with the chronic reflux cough causing me to practically pass out at least once a day and sitting up for a couple of hours in the early hours each morning made me desperate.

I had originally been offered the fundoplication in 1997 but it would have been open surgery. The laparoscopic (keyhole) technique was still fairly new. I was too scared. By 2007, I was desperate enough to try anything. I had read loads of horror stories. there was a dedicated website (no longer extant) that just reported horror stories of fundoplication.
I had been advised to find a surgeon who was experienced in this. Well, I didn't really get much of an option. I was added to the list of one of our best surgeons at Southampton but when I turned up for an intial appointment it was his registrar whom I learned would actually perform the operation. And when I asked him if he'd done many of these before, he didn't inspire confidence when he said he didn't think it so important how many a surgeon had done as to how well prepared they were!
However, as I said, I was desperate. I was now on 80mg omeprazole a day and anaemic from the induced hypochlorhydria.
I had the surgery. It was the best thing I ever did. It gave me my life back.
You can read my blog of that here.

NICE have produced an Option Grid to consider the pros and cons of lifetime PPIs vs fundoplication which you may download here.

The horror stories of side effects and complications are exaggerated. You may not be able to burp or vomit for a week or two whilst the internal scar tissue heals (though I burped before leaving hospital the day after the op). Likewise you may have some swallowing difficulties during that period. You need to take mushy food for a week or two; you will feel full much quicker and will lose weight (typically a stone and a half) but you'll soon be back to normal diet and normal portions and be off acid suppressant medication as well.

My operation saw the difference between me being unable to walk more than 50 yards due to my anaemia, to cycling 20-30 miles a day before breakfast (after a few weeks rebuilding strength).

A report published a few weeks ago looked at nearly 200 patients who had Laparoscopic Fundoplication 20 years ago. It concluded "94 % of patients reporting only occasional or fewer reflux symptoms at 20-year follow-up. However, 18 % required surgical revision surgery to maintain their results", "90 % of patients are happy to have had LF"
Techniques have improved and they now estimate the warp may fail in about 5% of cases. Unfortunately my wrap did come loose a couple of years ago following 5 hours violent retching due to norovirus. I have since had Collis-Nissen revision surgery which is far less likely to come undone.

You may read of the various types of fundoplication here but the gold standard is the Laparoscopic Nissen Fundoplication.

All the best
Chris
IP IP Logged
jcombs99
Senior Member
Senior Member


Joined: 23áMará2008
Online Status: Offline
Posts: 1969
Quote jcombs99 Replybullet Posted: 21áSepá2015 at 1:18pm
Ledge
    I'm very sorry to hear of your condition but you do understand what you have which is good .I would work with Chris on this mine lasted 1 month and his first one 4 years then he had a REfundo which I need too.
   I would go with the Linx today if you have the funds because you can remove it the Fundo is forever and you can only Refundo which MOST doctors I've talked to run from .
   Which ever one you do get a Mature Doctor who has done Zillions of them .
1) How many have you done ?
2) How long DID the ones you did last and were they able to get off PPI's ?
    A) I don't care about the NHS data I care about the Doctor's success rate who's doing mine and nothing more.
I would move quickly on SOMETHING because of the damage being done .I was like 3 months from finding Barretts to Fundo done but I guess I picked the wrong doctor .
1) How long is your barretts ? mine none
2) How large is your hernia ?   mine 4cm
Please move quickly the NHS doesn't

HGD ,Fundo
Jeff   

Edited by jcombs99 - 21áSepá2015 at 1:32pm
IP IP Logged
chrisrob
Admin Group
Admin Group


Joined: 01áMayá2007
Online Status: Offline
Posts: 2602
Quote chrisrob Replybullet Posted: 21áSepá2015 at 1:33pm
I wouldn't normally disagree with my mate, Jeff but I, personally, am not so much in favour of LINX but if you feel that's the way to go, you'll need to ask your surgeon's advice. The number of centres offering it are limited and, depending upon the extent of your Barrett's, you may not be eligible.

Contrary to press releases put out by Torax medical, fundoplication can be reversed if necessary, though I've never heard of anyone having it done.
One of the selling points for LINX is that if it doesn't work, you can have it removed and go with fundoplication anyway. They also propagate the fear that you can't burp or vomit whilst ignoring the fact that 63% of those receiving LINX have swallowing problems.
No lifetime studies of LINX available yet. A study of 100 patients with an average implantation of 3 years found 85% satisfaction but 3 had had to have the device removed.
IP IP Logged
jcombs99
Senior Member
Senior Member


Joined: 23áMará2008
Online Status: Offline
Posts: 1969
Quote jcombs99 Replybullet Posted: 21áSepá2015 at 1:45pm
Chris
    I like when we disagree you need open minds on this blog not pushers for one treatment or the NHS (I like private).. I wish this blog and others were around in Jan.16th 2008 when I found my barretts.But tough luck for me !!!

CHEERs
IP IP Logged
ledge
Newbie Plus
Newbie Plus


Joined: 21áSepá2015
Online Status: Offline
Posts: 7
Quote ledge Replybullet Posted: 21áSepá2015 at 9:37pm
Thanks for the reply, and  did appreciate the early reply!  for the moment  I am considering all options,  but my surgeon, (or may be surgeon)  wants me to have a ph test,  and a manometry test before he will say which option he thinks best,  He did mention the full fundo and a toupet fundo.  The linx  he shyed away from as he said it wasn't proven.
 
As I said the more I know.  the  more able I can make a decision, but as my lung funtion is very poor its been a battle for me even to be considered for surgery -
 
Any one out there who can help me with questions, tips and what I could expect  I would be grateful.  Especially in what happens with post operative conditions,  and the failure rate  - what happens when they fail,  what can I do to hope it doesn't fail. 
IP IP Logged
jcombs99
Senior Member
Senior Member


Joined: 23áMará2008
Online Status: Offline
Posts: 1969
Quote jcombs99 Replybullet Posted: 21áSepá2015 at 9:42pm
GOOGLE...Bravo Test (It's a 48hr PH Test ) much more normal then the 24hr PH test and I had it twice. I had a Barium x-Ray , 24 hr PH Test and a Manometry Test in one day it was FUN

Edited by jcombs99 - 21áSepá2015 at 9:48pm
IP IP Logged
chrisrob
Admin Group
Admin Group


Joined: 01áMayá2007
Online Status: Offline
Posts: 2602
Quote chrisrob Replybullet Posted: 22áSepá2015 at 9:11am
Hi Ledge,

The 24hr pH manometry test is what they'll want to give you.
There are two aspects to this. Firstly recording the pressure differences at the lower oesophageal sphincter and secondly recording the acidity in the base of the oesophagus over a 24 hour period.

You may read my blog of when I had it done here.

It may feel weird with a wire sticking out of your nose for a day but it's not unpleasant.
The alternative is the 48 hr Bravo capsule. It is attached to your oesophagus using an endoscope and records acidity over a 48 hour period sending the readings via radio to the recorder. It detaches iteself eventually and passes out through the gastrointestinal tract.

Under NHS, you're more likely to be offered 24hr pH manometry. It costs less and the Bravo capsule doesn't measure the manometry (pressure difference over the LOS).
IP IP Logged
jcombs99
Senior Member
Senior Member


Joined: 23áMará2008
Online Status: Offline
Posts: 1969
Quote jcombs99 Replybullet Posted: 22áSepá2015 at 1:53pm
Chris
   Correct but you can do a separate Manometry test then do the Bravo test but the cost would be higher.I didn't eat normally with a probe UP my nose.

CHEERs
IP IP Logged
ledge
Newbie Plus
Newbie Plus


Joined: 21áSepá2015
Online Status: Offline
Posts: 7
Quote ledge Replybullet Posted: 24áSepá2015 at 7:21pm
Good Evening,  yet another test undertaken, but this time on my ailing lungs and although they are severely damaged and this can not be reversed.  I am still on the trail of the fundoplication.   So now I do have in my pocket the appointments for the PH test and the manometry  test next week,  but have to come off  ppi for a week.  This bit I almost dread because although I never have suffered heartburn as such,  I think I am more of your silent refluxer  I am terrified my acid production will go into overdrive and damage what little functioning lung I have.  Are there some tips to ease the reflux apart from gallons of Gavison.
 
I am still not comfortable with the thought of a fundoplication, as mentioned in my previous postings,  but I seem not to have progressed with PPI's  as my damage has not abated and my voice gets hoarse on a daily basis now.  There seems no more "wiggle room"  left for medication - that fundoplication seems to be the only way out of this set of medical problems which include  the barretts, the hh and the hoarse voice and of course the lung damage. remove reflux and I may have a better prognosis. 
 
The thought of more tubes up my nose and down my throat fill me with horror too -
 this time no nice sedation...! 
 
any tips  do let me know.
IP IP Logged
Page  of 2 Next >>
Post Reply Post New Topic
Printable version Printable version

Forum Jump
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot delete your posts in this forum
You cannot edit your posts in this forum
You cannot create polls in this forum
You cannot vote in polls in this forum