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NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/11/2012 8:01 AM (GMT -6)   
- Have had heartburn issues since 2005
- Lower esophageal sphincter does not function
- Hiatal Hernia
- Eroded Esophagus at least 2 times
- Lost a lot of weight VERY fast
- 60mg Prevacid a day
- Trouble swallowing
- Heartburn & Indigestion
- Gallbladder fine

Looking for answers of what to do next. The doctors seem to think medicine forever is the answer. I don't agree with that and I'm STILL having heartburn/indigestion every day (although no heart attack feeling attacks on the meds). Every time I ask about surgery dr's say to take medicine instead. I want to feel normal again and have children soon.

I made a post yesterday but it's pretty long, so figured I'd do a short one because I'm so desperate for help. If you're bored, here's the full story: www.healingwell.com/community/default.aspx?f=45&m=2534740

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/11/2012 11:34 AM (GMT -6)   
Good Morning,
 
I just replied to your other post and I hope I was able to help you in some small way.
 
I am sure you will be hearing from other members as well.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"Learn to get in touch with the silence within yourself, and know that everything in this life has purpose. There are no mistakes, no coincidences. All events are blessings given to us to learn from."~ Elisabeth Kübler-Ross

Jonh71
Regular Member


Date Joined May 2012
Total Posts : 121
   Posted 10/11/2012 2:29 PM (GMT -6)   
Hi

Initially my consultant was of the opinion that if it could be managed by medication then why go through surgery. My answer was that I did not want to continue taking medicine that I gradually get aclimatised to and need larger dosage, and also all medication has side effects and although small the probability will increase with time.

I am glad I had the Nissen on both occasions and would not change this.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/11/2012 2:33 PM (GMT -6)   
Jonh71 said...
Hi

Initially my consultant was of the opinion that if it could be managed by medication then why go through surgery. My answer was that I did not want to continue taking medicine that I gradually get aclimatised to and need larger dosage, and also all medication has side effects and although small the probability will increase with time.

I am glad I had the Nissen on both occasions and would not change this.
How did you get your doctor to think about the surgery option then? I feel like both my doctors (I will be finding a new one) think taking medicine forever is a smart solution. That makes me loose faith in them :(

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 10/11/2012 5:27 PM (GMT -6)   
Hi NoDoubt,
I find that many GI docs aren't all that gung-ho about this surgery.  My first GI doc never had anything good to say about it, and didn't even put me through any testing.  His answer was to take Protonix 40mg twice a day, period.  It didn't solve my problems, but he didn't seem to care.
 
I fired him, and hired a new GI doc who was a much better listener and did not hold those same closed minded beliefs about the surgery.  However, he ordered a 24hr PH monitor to determine my level of reflux, and the score was very low, so he then assured me that my problems (out of control asthma) weren't caused by reflux.  My PCP and asthma doctors didn't agree. 
 
It took about 6 years and a lot of work on the part of my PCP to get my GI doc to finally give in and give me the option of "either treating it with medication" (which wasn't working) or consulting with a surgeon, which of course, I did.  In the meantime I'd had a barium swallow, another 24hr PH monitor, another endoscopy (which never showed erosion because the PPIs were working great to protect my esophagus--just not my lungs!), and a monometry.
 
Even the surgeon was somewhat concerned about my low DeMeester (PH monitor) score, but he deferred to the opinions of my PCP and asthma docs, as well as the fact that my GI doc had finally referred me himself. 
 
I share my story to let you know that you're not alone.  It will take perseverence and time to find the right person to help you.  Have you ever asked your GI doc why he doesn't want to refer you for the surgical route?  That would be an interesting conversation.  There is someone out here who can help you...hang in there!
 
Best wishes,
Denise
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/11/2012 7:50 PM (GMT -6)   
Dencha - Wow 6 years of that fight?! I hope I don't have to go that much longer. I feel exhausted about everything already! Although this started in 2005, it wasn't as terrible for a few years here and there. Now I'm finally just fed up. When I mentioned any type of surgery the doctor said they use medicines to control reflux. He acted as though there was no option and then kept telling me I need to be on a low-fat diet for 4 weeks and record it. I guess I got frustrated because I've already been doing that for 12 weeks because I'm so scared to eat anything :(

I feel like it's a needle in a haystack to find someone who will take it seriously. They were obsessed with thinking it was my gallbladder, even AFTER, they saw there is a hernia, old scaring, my LES doesn't function at all and I had obvious reflux during the endoscopy while on 60mg of Prevacid a day :/

It does help knowing I'm not alone though.

eLaReF
Regular Member


Date Joined Aug 2012
Total Posts : 74
   Posted 10/12/2012 4:35 AM (GMT -6)   
Hi NoDoubt

Please remember that a Nissen (especially a full one) is a major operation - even though it's done laprascopically.

It will change how you eat forever and there is a chance (albeit small) of it failing and actually making things worse for you.

As a result, I suspect that your docs may be trying to get you to realise that this should be seen as a last resort and that you should give all the alternatives a try first.

That said, if your quality of life is suffering and you are concerned about the long term effects of meds then you're doing the right thing - which is finding out as much as you can and asking questions. Once you have assured yourself of all the facts then you need to feel confident in telling your doc what you want.

In my case, the full Nissen I had 9 years ago was a complete success and has changed my life for the better - I was in agony almost all of the time and at 35 I wasn't prepared to go through the same for the rest of my days.

Others on the list have unfortunately not had such a good experience, so please weigh up the pro's and cons before making your choice.

Hope everything works out for you.

Cheers.

Les.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/12/2012 7:25 AM (GMT -6)   
Les - see that is what I worry about... I don't want to rush into a surgery and it not be all I dream about. I am glad to hear yours has been successful though!

I think I'm just desperate to feel "normal" again.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 10/12/2012 8:58 AM (GMT -6)   
Hi NoDoubt,
Les is right about searching out all options before pushing for (which in my opinion is easier said than done) the surgical route.  I had been treated for reflux for 15 years, and my lungs had been getting worse for 6 years. 
 
Your GI docs are working to protect you when they tell you to have patience and give medication a chance to work.  Still, from reading your longer post, you have been dealing with this issue for a long time, and while on PPIs you're still struggling. 
 
I remember my first GI doc didn't think that anything but medication was necessary to treat reflux, and he reminded me about the percentage of post-Nissen patients who still require medication.  In my research I discovered that while, yes, that was true, when medication was required, the amount of  needed to achieve the results expected was much less.  This is because Nissen surgery does not take reflux to zero, but rather to a "normal" level.  Therefore, people who are especially sensitive (like me and my lungs) some medication might be necessary.  If the reflux was taken to zero, the wrap would be so tight that you couldn't swallow.
 
My asthma doc has requested that I continue to take a PPI before dinner for this reason.  My lungs are obviously very sensitive to just a little reflux.  I also continue to sleep with the head of my bed elevated. These precautions are working perfectly, and my lungs continue to do well. 
 
Yet, prior to surgery my I was on 40mg Protonix before breakfast and dinner, as well as 300mg Ranitidine at bedtime, and my lungs were dangerously unhealthy.  I was forced to take huge amounts of inhaled steroids which did permanent damage to my skin...making it thin enough to tear very easily and covered with bruises.  This will not improve, and is why I wish I'd pushed for surgery more aggressively.  Oh well...hindsight is 20-20!
 
I read your longer post, and it explains a lot.  I can identify with the weight loss issue.  I used to get esophagitis before my surgery and could eat almost nothing because of the discomfort.  It would take at least 2 months to recover and in that time I'd generally lose 20 pounds.  This would happen a couple of times a year.  Also, because of my lung issues, I'd have terrible asthma--once to the point of hospitalization--caused by the increased reflux.
 
PPIs work fine for most people, but there's a small percentage for whom they're not enough to control the problem.  If your LES is open, and you're still getting problems on PPIs, it's definitely time to look into this further. 
 
As Kitt said on the other thread, you need to seek out a different GI group. Don't expect anyone to immediately say that surgery is the answer.  You wouldn't want that, because that decision is one that should be a last resort.  Do you have a long-term relationship with your PCP?  If so, that might be a place to start.  I remember when I decided I couldn't stand the cavalier, rude, unfeeling attitude of my first GI doc, I went to my PCP and expressed my feelings.  He knew me and what type of GI doc would be compatable with my personality and needs.  It worked, and I was very happy with my new GI doc...still, he didn't roll over and say I needed surgery.  He did testing, and still wasn't convinced. 
 
This is a long road, as you've already found out.  As Les said, this is major surgery and does make permanent changes.  If you're suffering the way you have described here, those changes will be a small price to pay for an improved quality of life. 
 
You've got some testing in your future.  No decision can be made without an up-to-date barium swallow, a 24 hr PH monitor, and a manometry.  Your new GI doc would also likely want to take his/her own look into your esophagus via endoscopy.
 
My endoscopy never showed erosion.  The PPIs I took protected it, but as I've said, not my lungs.  If you're still getting erosion, that's definitely a sign that the PPIs aren't working.
 
Keeping a food diary would provide you with more ammunition when presenting your case.  The more anecdotal information you can provide (in writing) the stronger your case. 
 
Are you sleeping with the head of your bed elevated?  Since much of your problem occurs at night, that would be very helpful.  If you can use bed risers and place them on a couple of 2X6 board squares, it would raise the head of the bed about 7 or 8 inches.  That would go a long way toward keeping the acid in your stomach when you're sleeping.  You'll get used to the elevation quickly, and it will feel odd to lie flat!
 
I don't know if you've seen my early recovery journal, but it might give you an idea of what you could expect in he early days post-Nissen.  Also, if you scroll to the end of the journal, I've made some comments about surgery in general.
 
Also, here's a good resource I recently came across:
 
Good luck with your search for answers!
Denise
 
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

Post Edited (dencha) : 10/12/2012 8:02:09 AM (GMT-6)


eLaReF
Regular Member


Date Joined Aug 2012
Total Posts : 74
   Posted 10/12/2012 2:14 PM (GMT -6)   
Hi again NoDoubt

I really do sympathise with where you are. It was a big decision for me back then too - the op hadn't been done laprascopically a lot and was really new in the UK back then.

I basically went through what it would be like for the rest of my life living with an ever increasing amount of medication and discomfort, so I made the decision to go for the op. I was lucky as my doctor supported the surgery option because of my age.

After the healing (a few months in my case) I was fine. No pills, no discomfort, only a change in eating to chew more and eat slower (which I do subconsciously now without thinking).

The procedure has improved a lot since then and success rates have gone up. You are young and not obese (things more likely to prevent complications) so your chance of success is much higher than that of failure.

Despite the above, you have to consider the risks. If you decide to have an op, choose a surgeon who has done the op before with people the same as you and ask their success rate. Then decide if the 10% failure rate (just an example as everyone is different) is worth the risk to resolve your issue.

If you are still unsure, toss a coin. I often do this when making hard decisions as if when the coin lands I think 'best out of three' I know what I want is the opposite :)

This isn't an easy decision and you don't have to rush it. Take your time gather your facts and make an informed choice.

It's natural to be scared, I cried like a baby the night before my op as I was terrified of making things worse.

Really hope you work things out.

Les.

Post Edited (eLaReF) : 10/12/2012 2:37:57 PM (GMT-6)


NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/15/2012 8:46 AM (GMT -6)   
dencha-
I guess I am losing hope with the doctors since they did extra tests on my gallbladder, knowing that my LES doesn't function, I have severe acid reflux and a hiatal hernia. But on the other hand I understand them needing to find out if it was my gallbladder in addition. I also lose hope when I ask for a more permanet solution and the 2 of them keep saying to take medicine forever. These are the GI doctors my old PCP recommended. The current PCP (since the last 5-6 years) recommended a new one. I have an appointment with him on Oct 26. I'm also just impatient since I feel this has taken over my life. I'm scared of food, but if I don't eat I get indigestion so bad. It's like a cycle that is sucking up my whole life!

I have taken Aciphex and Nexium but Prevacid seems to work better. I remember them putting me on amitriptyline at some point also. I agree that I need the 24 hr PH monitor and a manometry. They don't sound fun but then again, neither is what I'm currently going through! I don't want to rush into surgery if it's not the correct answer. I just feel I don't know the correct answer and my doctors are just blowing me off :(

My bed is elevated about 4 inches. I think we need to elevate it higher.

elaref-
If I get the surgery I will surely be crying like a baby too! Any surgery is scary and it's scary to know if that is the right decision. I feel like it's unfair that I get to choose either what I've been going through, lots of meds and it never ending. Or I get surgery and things will change forever, hopefully for the good. I'm confused about figuring out about children. If I have the surgery first, there could be more complications? If I figure out how to have children first then how bad will the pain get? Will I resent my kids during the pregnancy and will I cause more harm?! These are things I hope my doctors may actually try to listen to. I have so many questions yet they just blow me off. I'm hoping with the new doctor he may pay attention more. They just seem to act like why would I want to have kids?

Yesterday seemed to be the best day I've had in awhile. I was so happy. Then this morning I woke up with heartburn and almost threw up. I don't get it. Just when I think it's getting better, it kicks me in my butt :(

I know I sound all over the place, it's just 101 thoughts running through my head at once!

I called the closest hospital that does LINX to ask them about it but so far no one has called back :/

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 10/15/2012 12:23 PM (GMT -6)   
Let me know if you get more info on the linx, I'm interested to find out more.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/15/2012 7:36 PM (GMT -6)   
dany1982 said...
Let me know if you get more info on the linx, I'm interested to find out more.
I sure will! The assistant called me back today but said I need to speak with their heartburn specialists - she only schedules appointments. So I left a message with them. I'll call them again tomorrow and hopefully get ahold of someone!

Any particular questions I should ask for you?

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 10/16/2012 9:12 AM (GMT -6)   
Can you please ask them how many procedures they did, if there were any migrations, if the patients are still taking medications, if anybody got pregnant after the linx implant.
thank you very much
 

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/16/2012 11:02 AM (GMT -6)   
They ended up calling me back before I saw this. The lady said she has had it done and hasn't had any issues so far. She told me I'd need to talk to the actual doctor to get every question answered. The soonest I can get in is November 19th. So I'll add these to my list and ask them when I go. Hopefully we can find out more about this before then - that seems so far away!

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 10/16/2012 12:00 PM (GMT -6)   
what hospital did you call? I was a little disappointed with the one in Pennsylvania (this is the closest to location) the would transfer me from one department to the other, and nobody would like to give me more info on the linx, it was like a big secret

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/16/2012 12:16 PM (GMT -6)   
I called KNOX in Mount Vernon, Ohio. They are the closest to me. The lady was very nice and super friendly. I'm used to nurses and doctors being very annoyed and not wanting to talk to me for long. She told me it's outpatient and about a 20-30 minute procedure. She said she had seen someone throw up afterwards from the medicines to put you under. I was wondering about the whole "cant vomit thing". She said she had linx and has had no need to vomit. She said they do 3 tests to verify you qualify. 1. endoscopy 2. manometry test 3. pH balance test. She said once those come back they go from there.

I had tried to ask her about pregnancy but she didn't know. She said I should gather up all my questions and meet with the dr to go over them. She said linx is minimally invasive - so that's good to hear!

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/17/2012 7:57 PM (GMT -6)   
I emailed one of the doctors that was in the trial:

John.Lipham@med.usc.edu
John C. Lipham, M.D.
Chief, Division of Upper GI and General Surgery
Associate Professor of Surgery
Department of Surgery
Keck Medical Center of USC
University of Southern California

1510 San Pablo St. #514
Los Angeles, Ca 90033
Office 323-442-6814
Fax 323-442-5877

I asked:
"I came across your email while I was researching about the LINX surgery. I am very interested in this procedure but am very concerned about pregnancy afterwards.

Do you know if there is any data about women who become pregnant the procedure? I haven't had any children yet, but I plan to in the near future.

Thank you for your time"

He answered:
"There is no data per se about the device and becoming pregnant but there have been a few patients that became pregnant after having the LINX procedure. There shouldn't be any issues with pregnancy. The LINX device should not have any effect on this."

This makes me HAPPY!!! It's a very good outlook!!!

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 10/18/2012 8:26 AM (GMT -6)   
that is great news
are you going to do the bravo test and manometry, and go ahead with the linx?
I am so scared of these tests

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/18/2012 8:44 AM (GMT -6)   
I am scared of them too LOL

I have an appointment with a 3rd GI doctor on Oct 29, so I'm going to talk to him about everything I have done so far, give him copies of all the tests and show him my "food diary" the 2nd GI dr is making me keep. Then ask his opinion. I go to my 2nd GI dr (I have so many because they seem to blow me off & just tell me to take meds!) sometime in November, I'll see what he says. If he says another word about my gallbladder (which they have tested and is fine) then I'm going to walk out! I may also just demand the 2 tests then. This LINX surgeon requires those 2 tests - so all else fails he'll request them.

I called United Healthcare to see if they cover LINX, they told me they don't know what it is and I need a billing code. I just left a voicemail for someone at Knox Hospital and asked for that code.

So if the 2 tests come back that I am a candidate for LINX and my insurance covers it then yes I'll be getting it. Sorry the answer is so long - I feel like I'm just stuck in the mud these doctors!! I can't believe it's this unorganized!!

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 10/18/2012 9:50 AM (GMT -6)   
I totally understand you, I'm having the same reactions from my doctors. They don't know anything else beside pushing ppis.
I also email dr Lipham. Here is what he said:

"The results have been excellent. There were no erosions or migrations. There have been no major problems related to the device. about 75% of patients were able to stop their daily medications for reflux. There have been a few patients that got pregnant after having the procedure. The device should have no effect on the ability to get pregnant. I hope that helps."

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/18/2012 9:57 AM (GMT -6)   
Oh that's good! This thing is sounding more and more amazing! I REALLY hope insurance covers it!
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