2 conflicting opinions?

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GC1pink
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Date Joined Nov 2012
Total Posts : 532
   Posted 10/20/2013 7:51 AM (GMT -6)   
Okay...last April came home from a holiday and developed IBS spasms in intestines for 2-3 months, then got lump in throat, belching and burning tongue and throat. After several tests finally diagnosed with small HHernia and mild reflux and unexplained chest pain, & tertiary contractions. Manometry showed 38% peristaltic, 9% simultaneous and 55% failed -  Symptoms subsided around Feb and I went back to doing what I wanted and eating what I wanted.
Did a bit of cardio exercise combined with poor eating - chest pain came back again. Was told I did not have reflux as prior PH test showed nothing. Then had another barium swallow, more prominent tertiary contractions and hernia now larger- 3cm. Manometry this time showed 54% intact, 38% weak and 8% failed. PH test showed 10.85 demeester with 91 episodes of reflux 60% in a gas form.
 
I did private pepsin test - it was off the charts!
 
July started developing swallowing problems - now diagnosed with mild upper dysphagia.
 
Went to see a surgeon, he said could do 180 wrap, but it might make it better or worse - asked me to go see a colleague to exhaust all medical routes first.
 
Went to colleague - he said I don't have much reflux, and that I may lose my swallow - how lovely. He said my problem is my motility, not the hernia or reflux, and that I probably got a bug when on holiday. I asked what about pepsin results, he said they don't use them, as they are not reliable. I asked if LPR could have caused my dysphagia he said no, and that I would probably need a feeding tube at some time. He said surgery was NOT an option for me, I would not be able to get food through. Well how did I get food through before the hernia and in the period between Feb & July? I asked if they could repair hiatus with no fundoplication - still he said no. he said I needed experimental motility drugs.
 
So feeling like the feet have been taken from under me, in the meantime I had been in contact with Endostim who are looking for suitable candidates to start performing in the UK this would be a private operation with the surgeons who performed the original helping. I was told they are only looking for "normal candidates to give a result." I sent all my information to the consultant dealing with Endostim in August, including all the information the "colleague" had. On Monday I was told I was a suitable candidate to receive the Endostim!!
 
I just do not get it. One person tells you, you don't have reflux it's a motility disorder, and another tells you that you are suitable for surgery.
 
If two experts can't make up their minds, how on earth am I supposed to know what to do?

Post Edited (GC1pink) : 10/20/2013 10:44:22 AM (GMT-6)


Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 10/20/2013 9:06 AM (GMT -6)   
I am so sorry to read your story and my heart goes out to you. It sounds like you have had a very frustrating time of it culminating in conflicting opinions. It's enough to make you crazy!

Seems like good news that you are a suitable candidate for Endostim. At least there is something that can be done. Will you go and see them?

Endostim sounds quite interesting and certainly less invasive than major surgery. I would certainly be interested in it if it turned out I was a good candidate.
Would it be possible to give me details of who to contact about it?

Take care.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/20/2013 10:37 AM (GMT -6)   
Pink,
 
Good Morning, you have had a rough ride and hopefully you have found the answer.
 
FYI, for members reading here, EndoStim therapy directly targets the weak lower esophageal sphincter (LES) muscle, without altering anatomy or using mechanical constraints. EndoStim's proprietary technology uses electrical stimulation to restore esophageal function, thereby reducing GERD symptoms. Tiny pulses of electrical current are delivered to the LES without causing any sensation.
 
The EndoStim implantable pulse generator (IPG) and bipolar lead deliver therapy to the lower esophageal sphincter. The IPG is a small device similar to a pacemaker and is implanted under the skin of your abdomen. The lead connects two electrodes from the IPG to the esophagus. Both the IPG and lead are placed laparoscopically through a short, minimally-invasive procedure under general anesthesia.
 
If you have been accepted into the trial it feels to me like it may be the way to go.  I would ask, before hand, if this device can be removed if you find it does not help with your problems after a fair trial of having it placed.
 
I am posting the link to EndoStim's web page so anyone with questions may read here:
 
 
Do keep us up to date, Pink, and I will say a prayer that this is the answer you have been seeking.
 
Gentle Hugs,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 10/20/2013 11:42 AM (GMT -6)   
Thanks Kitt,

Unfortunately it is not a trial I would have to pay privately about £12,000. That's a lot of money to pay if the food cannot get through and then I would have to pay to get it removed if it did not get through.

I don't feel any better off, or feel that I have an answer at all - I don't know who to believe or what to believe, I just know I am sick to death of it all, and would like my life back please.

I just do not understand how 2 people can have such conflicting opinions with the same source of information.

Noelle,

The consultant dealing with the Endostim in the UK is Dr Chris Sutton - at the Spire Leicestershire he's really helpful and informative and he'll phone you for a long chat first.
Hypothyroidism, Glaucoma, Dry Eye Syndrome, Positional Vertigo

"I am simply stunned...that is this age of technology not one company or individual has managed to make a valve that could be placed BELOW the LES to STOP reflux!"

Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 10/20/2013 12:26 PM (GMT -6)   
Oh my gosh .. at £12,000 it's even more expensive than having the Linx done privately!

I know you are worn down and fed up with the whole business, but do you think you could get a third opinion?.. perhaps someone who comes well recommended. You never know, it could be third time lucky.

What do you think of giving the motility medications a try? .. or do you think they are way off beam and going down the wrong track there? Did they even have any hard evidence of a motility problem?

Thank you for those details by the way.
Symptoms of reflux started on 8th May after taking one Bisphosphonate tablet. I had never suffered reflux in my life before this date.
Osteoporosis

jamosca
Regular Member


Date Joined Aug 2013
Total Posts : 162
   Posted 10/20/2013 4:04 PM (GMT -6)   
Gc1 pink, I would get a second opinion off a really good surgeon. My gp says Paul super and audun siggurdson have excellent statistics as they specialise totally in bariatric and upper abdominal surgery. They are perfectionists in their field of surgery. There's no harm in talking to them.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/20/2013 7:02 PM (GMT -6)   
Pink,
 
Ouch that is $19392.00 in US.  I am so sorry as that truly isn't a pat answer and yet you go on suffering as you struggle to come up with the best answer.
 
It really does mess with your mind when 2 people  give you answers at the opposite end of the spectrum.
 
I found this link that has comments  re the EndoStim:
 
 
Blessings to you my friend and keep on talking to us as we are here for you and vent away if things get to scrambled for you.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Post Edited (stkitt) : 10/20/2013 6:06:04 PM (GMT-6)


phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 10/21/2013 11:23 AM (GMT -6)   
Hi pink, if you were to travel to India to have Endostim it would cost less.

"Depending on where the patient goes, this procedure costs about three to four lakhs for the entire surgery. Right from the preoperative care, implant and post operative care."

That's £3600-£4800 approx., excluding flights/accommodation etc.

Source, http://health.india.com/diseases-conditions/beat-acid-reflux-gerd-with-endostim-the-new-minimally-invasive-technique/

UK trials are still being prepared. I am aware of two, one of which is certainly NHS based, with 3 regional centres, the other is London based.

=============================================================

I'm sorry to hear that you are in a quandary with diagnosis. I wonder if this fairly common as medical conditions often overlap, and diagnosis sometimes evolve and change.
I reckon you have to carry on and let the diagnosis evolve. Perhaps you also have to get a third and even a fourth opinion as part of this process.

Phil

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 10/21/2013 11:58 AM (GMT -6)   
Thanks everyone for your support and advice, very much appreciated!
 
I think I will go down the route of the motility drugs, as I do have an issue with the LES spasming a lot, and speech therapy for the upper dysphagia. I'm just not ready to spend that kind of money when no-one is actually sure it will work.
 
Phil - I really hope that you get on one of the trials - fingers crossed for you! :-)

ericapeace2000
Veteran Member


Date Joined Mar 2012
Total Posts : 1110
   Posted 10/21/2013 12:23 PM (GMT -6)   
Good luck, keep us posted!
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough) ; Gluten free since 2012; low lactose since 2012
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