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GERD & Acid Reflux
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Posted 12/6/2011 7:03 PM (GMT 0)
Maximus,

I know that you can tolerate the PPIs either. Can you remind me if you can tolerate H2-blockers? I can not tolerate the H2s either. Also, can you describe your LPR symptoms - and whether you've seen any improvements in them at all? Thanks. I am wondering about the LINX myself and my symptoms have transitioned to more GERD like from more LPR like a few months back ... but I wanted to see if I should give myself more time or go ahead with some surgical intervention or not.

Regarding the medical records - I think edopter did mention email in one of his posts. So, if you have hard copies, you could scan them and then email the scanned copies.
Posted 12/6/2011 7:19 PM (GMT 0)
PPI-LESS,

I am currently taking 40mg Pepcid before breakfast and dinner. This does nothing for my LPR symptoms. It may help with some of the gastritis that I feel but I believe it is all inter related to the malfuction of the valve.

I've been dealing with this condition LPR or GERD for about 7 months and definitely want to be proactive about it. Even if it costs 20k euros or over $20k, I'm wiling to take out a loan to do so and exhaust my options in Europe where it is available.

I do not have my records on hand but I'll see if I can have my local hospital mail them to me.

I really do believe the LINX should be the first step as it is reversable although we do not have much options here in the US.

I am in direct contact with the doctor from Italy and Edopter right now is an excellent source.
Posted 12/6/2011 7:35 PM (GMT 0)
Thanks Maximus,

What exactly are your LPR symptoms and what did your tests (manometry, ph and EGD) show?
Posted 12/6/2011 8:01 PM (GMT 0)
As far as test results go, I know I was positive for GERD for the PH, mild gastritis for the EGD, manometry showed I had good motility, not sure about the resting pressures, etc.

My LPR symptoms are mainly a sore, irritated throat, dry throat, as if acid gas is coming to the mouth. No real heartburn per say. My stomach aches often as well.
Posted 12/7/2011 12:03 AM (GMT 0)
Maximus,
Are you sure you will be qualified as a candidate for any surgery?

In my experience, it is quite hard to get the GIs to recommend surgery unless the GERD/LPR is severe. Not many GIs have experience with people who can not tolerate the PPIs. Plus, it looks like you've been going through this for 7 months which is not enough for them. They want to first wait to see if this can reduce or can go away on its own.

The problem is that they want to see enough evidence of reflux - and with those of us with LPR, the reflux events are fewer but they hit the throat more than the esophagus.

It'll be interesting to see what the Dr. in Italy will have to say after looking at your case and your test results.
Posted 12/7/2011 12:09 AM (GMT 0)
PPI-LESS,

Originally when this all started back in May, my original GI didn't believe I had GERD because I wasn't responding to PPIs. I later got a second opinion from another GI who performed all the necessary tests including the 48 Bravo which confirmed GERD. However, my problem isn't with GERD symptoms but with LPR symptoms mainly. I spoke to the best surgeon in my state and he said I would be a perfect candidate for Nissen and he could actually help me with the LPR symptoms as he has done for many of his patients. I was about 75% sure I was going this route until I found Edopter went to Italy to get the LINX.

The LINX seems like the safer route to take at the moment. Even if it doesn't work, Nissen is still an option. If I went with Nissen first, LINX would not be an option. Also, it seems as the those who had the LINX done on these forums had great success at the moment.

I emailed the doctor from Italy my records and is waiting for his response. I will inform you of the details when he gets back to me. The cost of the Nissen would almost be free according to my insurance but if I went with the LINX it would be all out of pocket....20k which is a lot but your health is priceless right? At least this gives us hope.....
Posted 12/7/2011 12:10 AM (GMT 0)
Hi Edopter,

Curious to know why you think it'll still be another year or two before the medical facilities here in the US begin to offer LINX (assuming they vote a YES on it in the January meeting).

Are there any other FDA process related steps still outstanding? Or, is it just the time for the clinics to get ready to offer this?
Posted 12/7/2011 12:14 AM (GMT 0)
PPI-LESS,

I spoke with my psyciatrist about this.....I was hopeful that it would be this year but she was saying typically with drugs as well, once a medical device gets PMA or pre market approval, it still needs to be marketed to surgeons and training. I was disappointed when she told me this but I believe it is true. In Europe, they are performing these surgeries as we speak. This is just being optimistic, but image waking up from surgery with no LPR symptoms.......that's what I'm hoping for.

If the LINX does get approved in the first quarter of 2012, that would be great news. And if anything goes wrong with those who had it overseas, I'm sure the surgeons in the US could help. This is all being optimistic though. The LINX is very promising......we can only hope.
Posted 12/7/2011 12:23 AM (GMT 0)
Maximus - there were already clinical trials that were done here in the US. So, those surgeons already know how to do this surgery.

Further, I've read that from the skills point of view, this is a much easier surgery than the Nissen - so any Nissen surgeon should be able to get trained on this fairly quickly, I would think.
Posted 12/7/2011 12:29 AM (GMT 0)
That is true, the surgery seems much less complicated than Nissen.

My issues with Nissen is the recover, burping, and the fact that it is not reversable unlike the LINX.
Posted 12/7/2011 2:41 AM (GMT 0)
Hey Maximus808,

I scanned and emailed them to him. Your doctor may be able to deliver your records to you as a PDF file so then all you have to do is email them.
Posted 12/7/2011 2:47 AM (GMT 0)
Edopter,

Thanks.

I just sent Dr. Luigi all my medical records and are awaiting his response.

These include everything from blood tests, xrays, CT scans, EGDs, Barium CTs, Motility Test, Gastric Empyting Test, 48 PH Bravo Test, everything. Let's hope he gives me the ok and I will start planning from there.

You have been a tremendous help Edopter and I hope to keep in close contact with you as I make my arrangements as far as hotel, flights, etc. I'm not if I'm going to go sight seeing as much as you did more just the procedure. But thank you so much for your input. I'll keep you and the rest of the board informed.

Also, I have an appointment with my Nissen Surgeon this Thursday......shall I discuss this info with him and what he thinks about the LINX as well? Thanks.
Posted 12/7/2011 2:49 AM (GMT 0)
Edopter,

If you time, would you mind going in the chat room. I would like to discuss some issues with you regarding the LINX. Thanks.
Posted 12/7/2011 3:44 AM (GMT 0)
Maximus808

I would definitely discuss LINX with your Nissen surgeon and your GI doctor. They may be able to give you good information on if you are a good candidate or not. You could also ask them if they can support you if there are issues you run into when you get back home. I am in the chat room now

PPI-Less

Good to call me on that. My understanding the Jan meeting is a hearing to start the process. I was told by Dr Ganz it could take up to a year or so for approval. My experience working with Med Device companies is that FDA approvals more often than not seem to take longer than expected. Plus another GI doctor mentioned that even with FDA approval the insurance companies may drag their feet on this one because PPIs are going over the counter which equals cheap. The cost difference between PPIs and the surgery will be significant and insurance companies don't take the long view. So I added another year to the range 1 - 2 years.

All that said, I hope I am way wrong and the approval comes by Feb 2012!

Post Edited (edopter) : 12/6/2011 8:50:09 PM (GMT-7)

Posted 12/7/2011 3:47 AM (GMT 0)
Thanks Edopter I will discuss this with him.

Did you have any gastritis or stomach pains as part of your symptoms before surgery?

How much weight did you lose so far due to the surgery?

Thanks.
Posted 12/7/2011 3:53 AM (GMT 0)
Hi Maximus808

I only had the typical reflux symptoms burning in the lower esophagus area. I lost 4-5 pounds. I am on a Chat room now if you want to chat
Posted 12/8/2011 7:06 AM (GMT 0)
Edopter,

I received an email from Dr. Bonavina and he's giving me the green light.

I have several additional questions:

1. How is the payment made, is it made upfront or a is a bill sent later.
2. Did you have a guide to help you find your location at the University?
3. What airport did you have to fly to?
4. How did you get from the airport to the Hotel?
5. Do they take American Credit Cards?
6. Did you use an international cell phone?
7. Since I'm coming from Hawaii, I would most likely be going to LA, Newyork, and then to Italy?
8. I'm basically going to be following your footsteps through this process and all you information would greatly be appreciated.

Thanks.

maximus
Posted 12/10/2011 7:52 PM (GMT 0)
Edopter,

Hi again. I'm still deciding if I should pursue the LINX. I recall you wrote some responses to my questions above......can you repost them? Thanks.
Posted 12/10/2011 7:52 PM (GMT 0)
Edopter,

Hi again. I'm still deciding if I should pursue the LINX. I recall you wrote some responses to my questions above......can you repost them? Thanks.
Posted 12/10/2011 11:19 PM (GMT 0)
Maximus,

Based on your posts so far, it seems to me that you are - not sure if LES is the root cause of your LPR related symptoms or not which is why you are thinking that Nissen or TIF may not be able to fix the problem? and you are thinking that even LINX may not be able to fix this problem - but since it is reversible, you will take it out if it can not? Is this your line of thinking?
Posted 12/10/2011 11:28 PM (GMT 0)
PPI-LESS,

You are right. Here's my situation and see if you are anyone an help me make a decision.....

Right now I am in pain.....about 70% in my stomach (due to gastritis and PPIs which I do not take anymore just H2s)...30% in the throat and mouth...LPR from what I've read.

I don't think any surgery will alleviate my stomach pains that I have but maybe can reduce the LPR symptoms.

With LINX, it is reversable......according to the doctor from Italy who performs these. It's less invasive also.

I just don't want to go through something that doesn't solve anything. If the LINX doesn't work.....I can take it out and I guess live with my symptoms....but if the Nissen doesn't work......oh my.
Posted 12/11/2011 12:31 AM (GMT 0)
Maximus,
I don't remember whether you've posted your pH results here - but what did they indicate? If the surgeons are willing to perform Nissen on you, then they have at least some level of confidence that it will fix your problems. Do you get bitter taste in the mouth? If yes, then the acid is escaping the high pressure zone of the LES .. and therefore a surgical fix on the LES can fix your problems is what I would think. Do you have no heartburn symptoms at all?
Posted 12/11/2011 5:22 AM (GMT 0)
Yes I did post my ph test. I had a deme ester score do about 23. Yes, I do get bitter taste sometimes. I'm at a crossroads. I have my passport, applied for loan, and deciding to go to the linx or going with the nissen.
Posted 12/11/2011 8:17 PM (GMT 0)
Day 18 Post Linx installation

So far pretty good. Moved down my PPIs from 60mg to 40mg to 20mg to Zantac. The last two days I have only taken one Zantac 150mg (ranitidine). So far no problems. It might be a bit too fast (ppi rebound) but I am really excited to get off my meds. I still am avoiding carbonated beverages and meats such as steak, however i ate jerk pork/chicken a few days ago without a problem. I chew carefully; especially when eating meat & breads. Spicy food seems to be no problem. Ate kung pao chicken last night for dinner and accidentally ate one of those supper hot red peppers. Besides the initial pain of something that hot in my mouth :) I was fine. Quite a change from before the install.

In general, far better than with GERD but there is a tradeoff that one must be more careful to chew and not gulp liquids especially the first bite or drink. In my opinion a small price to pay...and as I heal these trade offs are suppose to diminish

Edopter

Post Edited (edopter) : 12/11/2011 2:06:52 PM (GMT-7)

Posted 12/11/2011 8:18 PM (GMT 0)
Hi Maximus808

1. How is the payment made, is it made upfront or a is a bill sent later.
- You should talk to Dr Bonavina on how they want this to happen. I paid with a wire transfer

2. Did you have a guide to help you find your location at the University?
- No I used the GPS on my phone

3. What airport did you have to fly to?
- Malpensa Milan, however this is a ways from the hospital. Linate is closer and a better choice if you can get there

4. How did you get from the airport to the Hotel?
- Train and subway from Malpensa. From Linate you can take a taxi

5. Do they take American Credit Cards?
- Yes
6. Did you use an international cell phone?
- I didn't need to, but it might be nice to have one

7. Since I'm coming from Hawaii, I would most likely be going to LA, Newyork, and then to Italy?
- You can do this a number of ways through different cities. If you want to get to Linate you probably have to land in Europe somewhere first. There are non stops from the west coast of US to Europe: London, Zurich, Paris and other cities. You can avoid a stop on the east coast of the US.

8. I'm basically going to be following your footsteps through this process and all you information would greatly be appreciated.
Hope this helps - I also recommend you leverage Dr Bonavina and his assistant to help with these details. Do you have a friend/family member that is familiar with international travel? It is a good idea to bring someone with you.
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