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can you insist on having surgery if paying out of pocket?

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GERD & Acid Reflux
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Posted 12/20/2013 2:46 AM (GMT 0)
Anna

Did they tell you anything when you had the barium swallow or did you see anything during it?

I asked the doctor when I had mine if he'd seen a hernia.

Maria
Posted 12/20/2013 4:23 AM (GMT 0)
Yeah I did ask but the guy was just a technician so he didn't know the results will be ready in two days he said. I'm not a very patient person so all this waiting while in pain causes a lot of sadness and anxiety. I'm so stressing if I meet the criteria for the surgery. Worrying, worrying and worrying. Maria how are you feeling any improvement, I hope so, let me know.
Posted 12/20/2013 7:32 AM (GMT 0)
Anna

Hopefully they'll see something on the barium swallow and two days is not that long to wait.

I'm still not good. I'm pretty sure that something is wrong and this isn't just down to swelling. I really don't know what to do. Everyday I hope to see some improvement but it really does seem to be getting worse.

I hoped when they found the hernia and then I had the operation that things would get better but if anything I am far worse than I was before the surgery. I don't have any problems swallowing so I'm wondering if the wrap has slipped or come undone.

It's an awful time of year to try and get tests done. I think I need tests sooner rather than later to determine if I've got a problem.

Maria
Posted 12/21/2013 2:21 AM (GMT 0)
Maria so I got my barium swallow results no hh and spontaneous ge reflux I managed to schedule the bravo and manometry (it took a lot of phone calls and letter from my doc and being on hold forever ). My doc was ready to leave for the airport and I literally caught him last second and he wrote the letter and faxed it himself I swear anything is possible if someone is really wanting to help. So I'm on the right track. Maria again why they didn't want to do the Linx for you how big is your hh. You have to be pushy I made friends with the receptionist at the place that does bravo (that's how much we spoke on the phone) once everything was scheduled I told her how I thought she was a great person and that I knew she didn't have to do all the extra steps to try and get me in(they were booked for the next two months) and she just simply said I know I could've just easily tell you that we are booked(which is true) and tell you there is nothing I could do about it. So getting the right person is crucial to get things moving I think I got really lucky. Anna
Posted 12/21/2013 10:09 AM (GMT 0)
Anna

Pleased you got your results and it didn't show a hernia. Finding a hernia would have at least explained your sudden onset of your condition.

Sometimes the hernia isn't seen or found until during surgery. So maybe you do have one and it slides in and out.

I was told I could have the Linx by a surgeon but he wanted me to see if my acid reflux was caused by me over swallowing - a load of nonsense because I was burping a lot. I have since found out that this can be a symptom of a hiatus hernia . At the time they didn't know I had a hernia if they had known that I had a hernia they would have done the procedure as I was told it was only slight.

Hernias apparently are difficult to know the size because they slide in and out.

I went to see another surgeon who agreed on surgery even though we still didn't know I had a hernia. I had a barium swallow and the hernia was eventually spotted. I was told it was a slight hernia but I have seen the pictures taken during surgery and the hiatus was quite a big hole. It needed 3 stitches so it was possible for quite a lot of my stomach to pass through it.

Let's hope that your tests that you have prove that you have reflux. I just remembered something my surgeon told me he said that most people that start to get reflux etc it's caused by a hernia. I'm so sure that it caused mine.

You mentioned in your post "spontaneous ge reflux " what does that mean ?

When are you scheduled for your tests?

Keep in touch

Maria
Posted 12/22/2013 4:09 AM (GMT 0)
Maria I think the spontaneous reflux means that it happens whenever even the times your les should be closed (I think). I'm going for the bravo beginning of January somehow I'm very scared. I hate all these invasive tests. I m afraid of manometry and I'm worrying about the outcome as well. Its Christmas time and everybody is so happy and I feel so stressed and sad. I have never been sick before so I have a very hard time accepting things. I keep thinking about the summer when I was ok and having so much fun :( How about you Maria how are things going. I'm sending you some warm thoughts:)
Posted 12/22/2013 6:06 AM (GMT 0)
Anna

Can I say that the Manometry test really isn't that difficult and it only takes about 15 mins to do. I can't say about the bravo because I didn't have one of those tests. I had the 24 hour impedance test instead which tests the amount of acid in the oesophagus which I believe is what the bravo does.

I feel exactly the same as you about thinking about the time before all of this started when I was perfectly healthy. I'd never had any digestive problems at all. I never had indigestion or heartburn before in my life - it's all come as such a shock and out of the blue.

Did yours start out of the blue too ? Had you ever had digestive problems ?

Let's hope that the new year brings us an end to our suffering. I'm really not sure that surgery has worked for me at all. I pray that it has but I have lots of chest pain which feels like heartburn. Yes it could be all the internal swelling going on but it's almost 6 weeks and things don't seem to be easing. Others say give it time well at the moment that's all I can do. I guess in the new year I will go for tests if it doesn't settle - that's all I can do !

Take care

Maria
Posted 12/22/2013 7:35 AM (GMT 0)
Anna,

A word of advice- try to do the Bravo and the Manometry at different times if you aren't already scheduled that way-- I say this because you have to go off PPis for the Bravo, and if your reflux gets really bad, it can screw up your motility study. That's what happened to me. Then I had to go back and do a barium burger swallow a month later after going back on my pills (and thank goodness everything looked normal then).

Feeling sick is lame, especially when you were so recently fit and healthy. I've had a double whammy this year between a diagnosis of Hashimotos and then, 4 months later, a sudden and since unending flare of intractable heartburn that had always been manageable before with PPis. There have been times when I've broken down and cried about it, sometimes alone, and occasionally to others. I do feel like I have to meter my emotions when something is so chronic so that I'm not always a Debby Downer. It often feels like I'm acting in public. So it goes. I tell myself that this is temporary. This will pass. It's a delicate balance between living your life normally (as you appear) to others, and obviously thinking about your health and managing testing and doctors and such. I've been trying to keep up exercise and friendships and time outside as much as possible in this limbo pre-surgery.

Best Wishes,

GC
Posted 12/22/2013 8:08 AM (GMT 0)
Maria thanks for your words of kindness. I never had any digestive issues prior was considered to have a stomach of steel and that's why since everything happened out of the blue I'm having hard time to accept it :( I really hope everything will settle for you and as you mentioned we shall all be healthy in the New Years . I will keep updating. Anna
Posted 12/22/2013 8:32 AM (GMT 0)
GroverCat thanks for your kind advice. They scheduled my bravo first then 2 days later they want me to do the manometry. I don't know if its common to do that since I'm assuming the bravo will be still attached. Then I need to come back in another couple of days and not sure why . Oh well they will call me Monday so maybe then I could ask. I'm sorry you are suffering too. I could totally relate to the crying and loosing hope. One day I'm optimistic and feeling like I'm moving the things along (believe me if it wasn't for my research and this forum I would be still thinking gerd is completely curable with a little ppis). Then there are days I feel like all this is for nothing and my tests won't show anything and I will have to suffer forever. You are getting the Linx and since I'm trying to head the same direction can you tell me how old are you and do you have a hh, was your bravo result really bad. I'm 35 year old no apparent hh . I hope you will keep the recovery journal so people like me could see the light in the tunnel. In the meantime feeling a right side chest tightness as we speak and while being on ppi:( My best regards Anna.
Posted 12/22/2013 6:18 PM (GMT 0)
Sure, Anna. I'm 29 and female. I don't have a hiatal hernia, and, in fact, my Bravo study did not show levels of pathological reflux. However, when they conducted an EGD and took biopsies, the doctor discovered that even though I've been on the highest dose of PPis for 8+ months and lower doses for years before that, I still had chronic esophagitis. The Bravo did show 100% correlation between my symptom diary and the episodes of acid reflux I did have. They concluded that it was either a false negative on the Bravo and/or I am highly sensitive to the reflux I have going on. In any case, the normal barium swallow (performed 1 month later after the wonky manometry off PPis) and the esophagitis from the EGD despite PPi therapy was all my surgeon needed to recommend me for the LINX. It will be different, I should think, for every surgeon and hospital, however.

Good luck.
Posted 12/22/2013 6:55 PM (GMT 0)
I'm glad you got your testing scheduled, Anna. I'm sure the additional appt. is just to go over the results. Did you get in with Dr. Gordon's group?

You may feel the Bravo capsule, but it doesn't affect the swallowing functions that manometry tests for.
Posted 12/22/2013 9:59 PM (GMT 0)
GroverCat I'm very happy that you are so close to resolving the gerd issue . I hope my results will speak for themselves. What are your symptoms if you don't mind me asking and where are you getting your surgery? I'm in Chicago will be seeing dr. Soper . I can't believe how hard it is to get things going. One of the docs I've seen told me its all anxiety and I should be happy its not a stomach cancer. Where is the compassion try to be in my shoes for a week. Again thank you for responding and your kind words. Anna
Posted 12/22/2013 10:16 PM (GMT 0)
Laurie yes I did it took some faxing and being on hold but I got ahold of a very nice girl Jenny who didn't blow me off and scheduled me in two weeks even though they were booked couple of months in advance. I owe you big time since there is no places that do those tests other than hospitals which would've cost me triple. Im really nervous about the whole testing process and the results. I hope I will have a strong case since im not sick for as long as others but cant tolerate the high doses of ppis and besides even with my Prilosec otc I still get breakthrough acid and I feel the reflux. Can you tell is dr. Soper a really nice guy does he listen and is he proactive about surgery its getting close and im preparing myself mentally as much as I can. Thanks again for all your help. Anna
Posted 12/23/2013 2:05 AM (GMT 0)
Anna,

My symptoms varied over time and week to week, but primarily now my main symptoms are chest pain, burning in the throat, and occasional reflux of food and water. The reflux, though, is not very noticeable while on PPis. The chest pain and sore throat persists, however. When I first had severe reflux attacks a few years ago, it manifested as coughing, a feeling of drainage, and chest pain. I thought for sure I had some lung issue. Pills cleared that one up at first. I'm having the procedure done in TX, and I can't wait for it to happen, so I can get through the recovery phase and move one with things.
Posted 12/23/2013 2:46 AM (GMT 0)
I was in Houston in April to visit our friend who moved there a year and a half ago. It was fun we went to South Padre Island and it was a blast. I was healthy back then so now it seems like a distant memory. My reflux started as a horrible heartburn then I started to get some lpr symptoms along with that. Now that I take the Prilosec the acid is not as much but as soon as I eat I feel chest tightness, lump in the throat, can't take a deep breath. My symptoms are pretty much constant and every day. It doesn't probably help that I still smoke even though I cut down a lot.I hate this disease and I hate how its making me miss out on everything. Hopefully New Year new beginning.
Posted 12/23/2013 3:25 AM (GMT 0)
I am glad you got in with dr. Gordon so quickly. Dr. Soper is an excellent listener, he will not rush you through the appointment. I do think you will need a diagnosis from a GI doc, dr. Gordon, and she will provide dr, Soper with all your information. Make sure you give Dr. Gordon all your records pertaining to this. She will also spend the time necessary to review your tests and diagnose you properly.
Posted 12/23/2013 4:05 AM (GMT 0)
Laurie I'm just getting the tests done there I won't see dr. Gordon for a visit. I got really lucky to go see one doc on the 18th who just totally listened to my story and even though he only saw me one time he said he will do anything I ask to in order to help me. He wrote the referral for the motility and bravo for me and also a letter stating that based on the history of my symptoms I would really benefit from those tests. When I called dr. Gordon she asked me to fax the medical history along with the referral and the letter and she agreed to do it since I told her that I'm seeing the surgeon soon and have been waiting for that appointment for two and a half months. I got pretty lucky with this and her price is also much lower than the hospital fees. I owe you dinner:) I couldn't have done it without you. Thank you sooooo much . Anna
Posted 12/23/2013 4:17 AM (GMT 0)
You're welcome! I am glad you found that other good doctor, it sure does help.
Posted 2/27/2014 10:58 PM (GMT 0)
I was looking for an update. How did the tests and visits with the doctors go?
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