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Old 08-11-2003, 05:03 AM   #1
cheribe
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Red face endoscopy NOT a walk in the park for one and all.

I have been putting off my endoscopy for years (10) and finally after reading on this board about what a breeze it is I screwed up the courage to go ahead with it. I am glad I did it and would recommend everyone who has a problem should,,,,,,,BUT I think that it needs to be said that it is NOT a "walk in the park" for EVERYONE and the fear that some of us have is justified. Myself,,, I have to have premedication with antibiotics before any invasive procedures, I also have reactions to many antibiotics and other drugs. Sure 'nough the the morning of my procedure I reaacted to the antibiotic that they had going in my IV. The procedure itself was 15-20 minutes that I have NO memory of. I also have no memory of eating drinking talking and getting driven home afterward. But then came the nausea and vomiting and horrible headache. I was unable to eat for several days. I have "probable" Barretts and I am going to have to go through the procedure every couple of years. Now its been 5 days since my endoscopy and I am still recovering and dealing with phlebitis from the IV. I just wanted to say that some of us humans tend to reaact to every drug and foreign object that is injected into our bodies and some of us don't and for those of us who do,, ALL procedures are scary.
Cher

 
Old 08-11-2003, 07:06 AM   #2
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That may be true but without this procedure ---- the Doc is just guessing. The benefits are well worth the few days of recovery. Cell changes in your esophagus as well as stomach areas can result in cancer as well as other problems.

I think as most Doctors agree -- It is alway best to find problems in the very early stages. So, they can be properly treated !!!

God Bless---Harry

 
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Old 08-11-2003, 10:14 AM   #3
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I am so sorry that your experience wasn't as easy as mine. From what I've read a lot of people are afraid of the procedure itself, and because of that they tend to postpone it. I will continue to tell them from my experience that it was a walk in the park. For most people I think it is. If someone tells them it's scary (which it was for me until I went through it), they might not do it. I watched my uncle die from esophageal cancer and let me tell you - it wasn't pretty. From the time he was diagnosed to the time he died was about nine months. He was sixty when he passed away, but looked like he was 100. I bet you everything I own, he'd rather put up with some vomiting for a few days than the horrible death he experienced. I thank God my father got scoped at the time of my uncle's diagnosis to find out he has Barrett's. If he would have waited ten years to have his endoscopy, he might be dead too. I, too, am now having serious and potentially life threatening problems with reflux at the age of 33. I've had tubes stuck down my windpipe and my throat and, no, it's never the most pleasant experience, but it might just save my life. Endoscopies are a very important tool for doctors and if a doctor recommends you get it done, you get it done -- and as soon as humanly possible. I am truly sorry you had a bad reaction to it, but I am also very grateful for you that you had it done. Barrett's is a second chance at life. Esophageal cancer isn't.

 
Old 08-11-2003, 10:35 AM   #4
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I too have said in the past that my two scopes were a walk in the park. Though I am saying too after the tests were performed and I was nervous before the tests. I also understand that some people will not find the tests as being so easy. However, these tests are designed to diagnose your sickness and possibly save your life. I will undergo a test understanding the risks involved but for me the reward of finding out what is wrong outweighs those risks. I am in talks with my doctor right now about having a colonoscopy. I really don't want to have one and I am quite nervous about the procedure. But I know in the end I will have the test performed if it can possibly excluded some diseases. My biggest problem with the tests aren't the test themselves but the prep work needed for the test. The prep work causes me to be panicky and I hate that feeling.

 
Old 08-11-2003, 02:56 PM   #5
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I would recommend EVERYONE with GERD get the test also, just thought it was pertinent to point out that it is NOT a walk in the park for EVERYONE..... I will get it done again as necessary too.....And hmmm oh boy now that I sit here and think about it, your message saying that it was a walk in the park was what bouyed me up to go through with it last week,,,so maybe that IS all that should be being said here, I'll just pipe down and keep my experience to myself. I am sorry for the one who responded and has had so much death in the family from espophageal cancer,, it must be very terrible. My grandpa and all of his brothers died of lung cancer and watching him go the way he did gave me some VERY strong opinions about cigarettes too. Hope you all do well. Sincerely, Cheribe

 
Old 08-11-2003, 03:05 PM   #6
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And that's all that I was worried about - sending the message that it might be a bad experience to people who are already afraid. I would hate for anyone to postpone this test because of fear. I hope your future endoscopies aren't as bad. Just keep reminding yourself of the alternative. Good luck to you.

 
Old 08-13-2003, 09:26 PM   #7
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Hi Cheribe,
A couple things I wanted to ask you about..I also have Barrett's and you said you have "probable" barretts...Im assuming by that you mean, the Dr. said he saw evidence of what looked liked Barrett's in there....Make sure you call and get the biopsy report after it is back from the pathologist...Barretts has to be confirmed by biopsy and a very important question you need to find out is if you have any dysplasia or if you only, hopefully, have metaplasia...Your future treatments and surveillance depends on where you are at in progression...If you are interested in getting information about Barrett's there is alot of info on the web, one really good site is [url="http://www.barrettsinfo.com"]www.barrettsinfo.com[/url] and John Hopkins has a great barretts esophagus support board.....Also, Im sorry you had such a hard time with your EGD. If its any consolation Im having extensive testing done by specialist at Cleveland Clinic next month and I have three full days of tests scheduled...1st day has me already scared......My Dr. there is doing his own EGD and taking alot of biopsies to make sure I dont have esophageal cancer yet as we already know I have dysplasia, anyway, thats at 7:30am and at 1pm same day, Im scheduled for the manometry test and right after at 2pm they are inserting the probe for the 24hr ph study......I cant even imagine how I will feel at the end of that day...The next morning I have an evaluation with a Dr. in the swallowing disorders clinic and probe removed at 2pm and barium swallow at 3pm...Next morning I will have my conference with my Dr....He says he will have all my results by that time....Guess thats why he is doing most of them in one day.....If I dont have any cancer yet then we might consider an open collis gastroplasty, to lengthen the esophagus, combined with an open fundoplication......Please let us know what you find out about your biopsy report...Good luck....

Also for KJM if you are reading this..I just wanted to say Im very sorry for what happened to your Dad...I read your post and EC is a horrible cancer...I have worried about it constantly for months and for some reason I keep continuing to progress...My local GI decided to send me to CC telling me they are the best and I can be thankful that I have met my Dr. there and he is one of the Drs. in charge of "Oncology Thoracic Surgery"......Im grateful everyday that I have a sharp local GI Spec. that recognized when it was time for me to go some where else....You said you get scoped alot...Is that because you have strictures?..I have been getting mine dialated about once a month and we are also worried about having that done so much as the risk of tears is always there.....Best of luck to you and again Im so sorry for what you have lost.....

[This message has been edited by cathy2752 (edited 08-14-2003).]

 
Old 08-14-2003, 12:46 PM   #8
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My esophagus looks pretty good. My reflux problems are all in my windpipe. The acid travels all the way up the esophagus and spills over into the trachea causing all sorts of havoc. I have scar tissue building up below my vocal cords, I'm hoarse all the time, I cough or clear my throat all day and have an excess of mucus in my throat. Not to mention it feels like I'm being strangled all the time. And this type of reflux seems to be more difficult to get under control. I'm on 40mg of Nexium twice a day plus 20 mg of Pepcid at night along with not eating past 6:30 p.m. and the head of my bed elevated 8 inches in the air. It's done very little to nothing. My uncle was the one who died from cancer, my father has Barrett's and needs to be scoped every year. As far as your esophagus getting stretched, this is something both my grandmothers went through a number of times. I think it might be more common than you'd expect. It's a good thing you seem to be on top of your problem. By the time my uncle was diagnosed, the tumor in his esophagus was big enough to cause swallowing problems and it had already spread to his aorta. Remember about eight years ago when there weren't any ads for heartburn? That's when he was diagnosed with cancer. My dad and he used to pop Rolaids like they were nothing -- probably because there wasn't anyone out there who thought heartburn was a big deal. I'll never forget the huge jug of antacids in my parents' room. If anyone is reading this who thinks they can ignore frequent heartburn problems, you're wrong. Suck it up and go to the doctor. Get the scopes done.

And Cathy, try not to worry yourself too much. (I know that's hard to do, I've been freaked out about my problem since December.) You sound like you're all over it though and doing everything you can. (So much more than my family 8 years ago.) The fact that you're going through extensive testing is a great thing. Know everything you can about what's going on down there and that will make you feel better about the fact that your doctors aren't guessing. And chances are better than not that it's just Barrett's. Let me know if you get the fundoplication. I'm considering that for myself.

I'll be thinking of you. Hang in there.

 
Old 08-15-2003, 06:39 AM   #9
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Wow Cathy, sounds like you have a couple of VERY big days ahead of you., Might be a good way to approach it though, really, no time in between tests to dread the next test and possibly back out of it. My doctors office called and said that my biopsies came back NEGATIVE for Barretts!!!!!!! I can hardly believe it, the doc seemed pretty positive that what he saw was Barretts. Anyone ever have these biopsies not show Barretts when one does have it? I keep thinking that maybe the fundoplication/hernia repair surgery the doc wants to do is not a good idea,, from what I read on these boards it leaves one unable to burp and vomit, this sounds absolutely horrible to me. Is there anyone out there who had the surgery and can burp and vomit? And REALLY I guess there is no point in going through with my scheduled manometry test if I am not going to do the surgery is there?
Cherib
Cheribe

 
Old 08-15-2003, 12:51 PM   #10
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Cheribe, Thats exactly why they do biopsies to confirm a barretts diagnosis...A clean biopsy always means NO BARRETTS....GOOD FOR YOU !...NOw you can take that as a warning sign because once those cells change they dont change back, and make sure you keep your reflux under control....I have talked to alot of people who have had reflux (fundoplication) surgery and had very good results with it...MOst are symptom and medication free afterwards..The trick is in making sure you get a good experienced surgeon who has done alot of the same type surgeries....Here are some questions that were posted on another site, of what to ask a surgeon before you agree to this surgery...

1.How many fundos do you do in a month? Open vs Lap? What kind of complications do you normally see? What is your sucess rate? About what percent of your pts need dilation afterwards?

2.Can you explain why you believe I shoukd have a fundo? ( Then break this into several follow-up questions, such as, Can you explain why you think my diaphragm needs repairing during the fundo, or "my hiatal hernia looks awful large to me...how will you repair it?"

3. As part of the conversation about why you should have a fundo, ask the surgeon to discuss the result of each and every test with you (I'm assuming here that you've kept track of the tests you've had!) And ask questions as you go along (example, if you look at your barium swallow x-ray: "Where is my LES?" even if you already know the answer. (You want to be sure that he/she has actually reviewed your test results.)

4. If you have not had some tests, such as barium X-rays or manometry, say, ask WHY and be sure you understand the answer. You should NOT let your surgeon proceed without these. (In some cases, only a PH test isn't needed. If my surgeon had felt skipping tests was OK, I'd have been off shopping for another surgeon at this point.)

5.Show me where the incisions will be (both lap and open). How many stitches?

6. Will you have to sever my vagus nerve? If so, how will that affect my gallbladder or other digestive functions after surgery? What else might be affected? Can you avoid severing the vagus nerve?

7. What is the biggest risk I'll take in having this surgery?

8. What might cause my fundo to fail? What are the chances that this might happen?

9.How often do YOU (not all surgeons) have this happen? (Hope the response is a tiny fraction of the whole.)

10.Who else will be in the operating room?(Very important if you'll be in a teaching hospital. You want to make sure that your surgeon does not let a student do the actual work. Also, it's good to know what sort of nursing crew they use.)

11. How long does the surgery take? About how long will I be in recovery room?

12. How long will I be in the hospital? (Get estimates for both lap and open here, if you need to plan ahead.)

13. Can you give me post-op diet gudelines?

14. When will I be able to sleep on a level bed?

15. What should I do if I have problems after I'm released from the hospital? (Try to get a fix on what is urgent and what is not and whether you can reach your surgeon easily, especially outside of office hours.)

16. Check whether your surgeon will be at work for the 4-6 weeks following your surgery. If vacation or holiday time-off is coming up, you need to know that now so that you can then ask who will be available for back-up and what their credentials are. Or so that you can move your surgery date back, if you'd prefer that.

17.Ask questions about how this surgery will affect other health issues you have--from epilepsy to a bum knee and the abuse it might take during this, or whatever. You don't want to emerge from this experience in worse shape on another front.

18. Finally: Should I have more questions before surgery, how can I contact you? (If the surgeon is NOT receptive to this, and has shown signs that you don't need to know all this stuff anyway, you've likely got the wrong surgeon!)


 
Old 08-15-2003, 04:20 PM   #11
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These are great questions, Cathy. I'm going to print this page to keep for myself. One other one I thought of was whether or not they can reverse the fundo if it doesn't go well and what kind of risks that carries with it. Please let me know if you go through with it. I'd love to hear how it goes.

-Karen

 
Old 08-16-2003, 07:48 AM   #12
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thanks Cathy and Karen!
Karen I was wondering if you can tell me why you haven't had the fundo done and what information you have been gathering about it?
Cathy these look like a batch of great questions, I'll print them off, and take them with me.
In my experience docs get a little freaky if you ask a lot of questions and tell them you have been talking to folks on the internet etc...., but I have only been to my gastros office once, him and I are a new team, I don't know how he will react to questions. Thanks again, I would welcome any new thought from anyone about these procedures and surgeries.
Cheribe

 
Old 08-16-2003, 02:54 PM   #13
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cherbi, Just remember you are the Pt and the one who has these things going on inside you..You have EVERY right to ask questions and understand your own medical conditions...My local GI Spec. asks me every time I see him what questions I have for him...He answers every one of them.....When I had my initial consultation in Cleveland with the surgeon two weeks ago, same thing...He told me to write down all my questions for him and he will tell me anything I want to know....My experience is that they really do want us to ask questions and understand, if they dont then maybe they arent a good choice...Good luck to you...Karen....Best of luck to you also....Cathy

 
Old 08-19-2003, 12:36 PM   #14
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The GI doc I saw at Mayo said that fundo might be a problem if I still want kids. With my kind of reflux, the medication can take up to six months to work, so I guess I have to give it time. If I'm still having problems next year, I'll really think about it. But I won't have it in Albuquerque, I'll move back to Minnesota or fly up to have it there.

 
Old 08-20-2003, 06:37 AM   #15
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Hi Karen
Thanks for the response. I see. At forty one years old and postmenopausal, that doesn't enter the picture for me, thank goodness! Actually my hiatal hernia problems I believe started when I got pregnant 21 years ago. I was a very petite person 5'1" 110 lbs, and my son was 21 inches, 7lbs,13oz. I vomited and burped my way through the entire pregnancy,,, the burping never went away,,,ten years later I was diagnosed with the severe GERD, and now twenty two years after giving birth I am to the point of needing to do something about it (son graduates from college the same week I am scheduled for my manometry).,,, I envy you the warm climate you live in, but interesting that you need to come back north to find good medical care ;~) ! Hope you find good health and come to the decision that is right for you. Thanks to all for your answers to my posts.
Cheribe

 
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