Met with the LINX surgeon (Updated 1/3/2013)

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NoDoubtLove
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Date Joined Oct 2012
Total Posts : 359
   Posted 11/26/2012 10:22 AM (GMT -6)   
A week ago (11/19) I drove 3 hours to Mt. Vernon, Ohio to Knox Community Hospital. I met with Dr. Paul Taiganides. Sorry this update is a week late. I've been getting really depressed about always feeling so sick and basically have been a hermit.

So, I drove up there with all my past test results, information, list of what gives me reflux, foods I can eat, list of symptoms related to GERD, medicines, any medical issues at all, etc. Just very prepared. I wasn't feeling so well after the first 2 hours of driving, turns out I had a fever and was getting sick :/

I got there very early and then had to wait past my appointment. When he finally came in I knew why I had to wait - this guy actually LISTENS and cares! He spent about 30 minutes with me! He answered every single question I had with logical and real answers, unlike my past GI doctors. Dr. Taiganides was just as frustrated with my current GI doctors after I told him everything I've gone though and what medicines I'm taking. He couldn't believe they aren't taking me more seriously. I'm only 30 and extremely underweight, eating a perfect "safe" diet, on 60 mg PrevAcid daily and still have breakthrough systems :(

He educated me a bit more on GERD, what it does, what causes it and what can happen from it. He was the first doctor I've seen that was happy from the moment I met him and listened to me. He didn't make me feel annoying or crazy. I loved the fact he agreed that lifelong PPI's is just NOT an option. He told me about how unhealthy they are, etc. This I already knew from research but you have to understand, all my GI doctors just tell me to stay on PPI's for the rest of my life. Keep in mind I want kids, but according to my GI doctors that isn't in the cards since I need to be on PPI's forever. So hearing someone LISTEN to me and give me hope that I can move on from this and start a family is amazing.

He did 12 of the trial LINX surgeries. Overall he has done 46 LINX surgeries, with no complications or after care problems, at all. He thinks I'm a better candidate for LINX than Nissen, just because LINX is much less invasive. I did get to play with the LINX device and it's genius! Also, just fun to play with LOL. It's a lot smaller than I had thought it would be, it opens easily - but not too easily.

I asked him about my insurance and told him my worries with getting it covered. He said his last 2 patients had United Healthcare and they were covered just fine! YAY!

He was very upset that I hadn't had a pH test done yet or the manometry test. He read the notes from the previous endoscopies and said they are extremely vague. He wants to do them all himself and get better biopsies and test accurately for Barrett's. So now I go back up there December 13 to get blood work, manometry, endoscopy and while he's in there the pH capsule. He also couldn't believe they wanted me to stay on the PPI's for the pH test. He basically said to get an accurate reading of your pH you need to be off the PPI's for at least a week.

December 13 is going TO SUCK for me :( But since it's 3 hours away I gotta try to knock it all out in one shot. My husband and I are going to drive up there after work on the 12th, stay in a hotel and then get to the hospital at 7:30am. I'm very nervous about the manometry test - so please don't post how awful it was for you, it will not help my nerves! I go back on January 2, 2013 to get my test results and see where to go from there. From everything I've told him and the previous notes of the other doctors it seems surgery will be in my future. It's just a matter if it is LINX or Nissen.

I'm sure I left things out and I'm all over the place, so sorry about that! If you have questions, ask, maybe it will ring a bell. I stop the PrevAcid on Dec 6, so I know I'll be having even more awful symptoms :( But in the end this will be worth it. They said during the 48 hour pH acid test I need to keep a food diary, what I ate, when I started, when I finished, etc. They said I need to eat 1 meal per day that normally triggers the relfux. I plan on eating buffalo wings and fried pickles, those are my 2 favorite foods and I haven't had them in over 6 months (they are probably what trigger this "wave" of GERD again) Oh and pizza, OMG I want pizza so badly! Maybe all that is over doing it? I guess we'll see how I feel closer to that time frame.

I honestly can say I left there with hope. He listened to me, he actually cared, he didn't just push pills in my face. I've been getting so incredibly depressed because of always feeling sick, people commenting on if I just ate food (because I'm apparently a "picky eater", which isn't the case, I just don't eat reflux causing foods) then I'd gain weight and why am I so skinny (I was also asked if I am bulimic or anorexic... awesome huh?). I guess Thanksgiving didn't help since everyone kept saying things. I feel my husband is just annoyed with me and this situation. I literally just want to start crying randomly. I'm so sick of being sick. But on the bright side I am getting this resolved (as much as possible) - there is hope, I just have to be patient... which is hard.

Okay, end of rant. This is a novel anyways. Thanks for listening everyone :)

Post Edited (NoDoubtLove) : 1/3/2013 9:58:17 AM (GMT-7)


gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 11/26/2012 11:32 AM (GMT -6)   
Hi Nodoubtlove,

Thanks for the really detailed update.

Regarding manometry fear not, I've had it thrice because my GI told me he had seen patients improve the LES pressure with time and PPIs. Funnily the second test showed 30mmhg while the first and third ones showed 10. I put it down to test error.

As for the test itself, it is only mildly painful. It does take effort and causes pain but nothing too bad. Definitely nothing compared to a nerve biopsy recovery, a privilege I had :)

Enjoy the time off ppis. I've found that 3 or 4 days off ppis increases my appetite and I just feel better before the inevitable rebound.

Might also be a good idea to talk to the past LINX patients operated by your surgeon. I'd ask for best cases and worst cases. Just to keep them nerves calm before surgery.

Also I think at present LINX contraindicates pregnancy. Please check with your surgeon about that as well.

Totally get the part about teasing at home. They empathise with me but they forget that my condition is chronic because I "look" fine.

Post Edited (gerd_hater) : 11/26/2012 9:41:26 AM (GMT-7)


NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 11/26/2012 11:50 AM (GMT -6)   
I asked about LINX and pregnancy and the surgeon said there have been no issues with it. He said the same with Nissen and pregnancy.

I'm not trying to compare manometry with something else I've never had, that does me no good! You just said how it causes pain. Sorry, not trying to be mean, just seemed like you went ahead and said how it was painful even after I said not that post about it. :/ I'm scared to have it done. I'm more scared of that then the surgery because I'll be out during the surgery! Maybe I'm being a baby but I can't help it. After having a HIDA scan and the insane amounts of pain I don't want more!

I hadn't thought of asking to speak with his past LINX patients, that would be a good idea! Thanks :)

I think I was just flat out shocked that he paid attention to my issues and showed real concern. He wasn't just blowing through the appointment and onto the next person. It's sad that most doctors do that :(

I honestly believe some people think I have an eating disorder and not actual "heartburn" because the heartburn they get, is just take Tums and you are fine. When I've mentioned I'll be getting surgery they look at me shocked! Like they didn't think "heartburn" is such a big deal :/

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 11/26/2012 12:31 PM (GMT -6)   
Oops sorry about the manometry pain post. I thought you might have read some horror stories and wanted to put it in perspective. Really if you had a scope done you will get through manometry easy. I personally felt the scope was worse.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 11/26/2012 12:47 PM (GMT -6)   
I have had scopes but they put me under for those, that's always been the procedure where I go - THANK GOD! LOL

I just have anxiety really really badly. I don't know why, it just comes on and I start to have a panic attack. :(

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 11/26/2012 1:02 PM (GMT -6)   
Good luck! Regarding past patients I'd ask for at least one woman patient who had the LINX.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/26/2012 2:03 PM (GMT -6)   
Hi NoDoubtLove,
Thanks for sharing your story!  I'm so glad to hear that you've found a doctor who really listens to you.  That's so important.  Good luck with your testing on December 13th!  I've had 3 manometries, and believe me, they're very "doable".  It's not the end of the world, and you'll do fine. 
 
Bill, one of our moderators, recommends keeping your mouth wide open to keep from swallowing in between.  It's worth a try!  Also, slow breathing and counting your breaths, like, "One, two, three, in...one, two, three out...very slowly.  It helps to distract you.  I've always had a great nurse to coach me through the procedure, and I'm sure you will too.
 
Okay...I'm offering this link to a YouTube video of a woman getting a manometry test.  She's a very calm woman and the video is a very positive one.  You only know if you can handle watching it.  I'm always one who does better with the known than the unknown.  It's your call.
 
Again, glad you've found a good doc who is responsive to your needs.
Good luck with your search for answers and decision as to what you're going to do.  Be sure to research both the LINX and Nissen fully before making your decision.  There are many journals and studies online that discuss each of these procedures in detail.  Generally the "Conclusion" section is pretty easy to understand.
 
Best wishes,
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"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.”
Eckhart Tolle

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/27/2012 3:51 AM (GMT -6)   
NDL-

Great to hear you have found a great doctor. I have been lucky and my last 3 surgeons and 2 GI doctors I have had have been awesome. It really does make all the difference in the world.

I am going to give you some honest expectations on the Manometry. First, don't freak, it is not all that bad. The tube is WAY smaller than the EGD scope. They should use numbing gel that they squirt in your nose. Once this takes affect your gag reflex is way suppressed. If your doctor is that good with you I am sure his nurses are too. Relax the best you can and remember to swallow. It doesn't hurt, it's just not a normal feeling. Once they have it in place and have you swallow the water, either hold your tongue on the roof of your mouth and forward with your mouth open or stick your tongue out and bite it gently to hold it in place. If you can't move your tongue back you can't swallow. I have been through at least 5 of these and it does work.
They will want you to do a swallow and then you have to wait until they see the reading go all the way down before you swallow again or that one won't count. they need 10 good swallows. The last 2 I had were 10 with water and 10 with a jello type gel.
Oh, and when they start the tube make sure to tuck your head to your chest. This makes it much easier to get it down.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 11/27/2012 9:02 AM (GMT -6)   
Thank you both for these great tips. I'm going to try to memorize them and just relax. I tend to tense up and make it worse than it really is. I just need to keep remembering how these tests are going to FINALLY get me going forward with "fixing" this. I really want to be back to as close as "normal" as I can. This has taken over my life for the past 6 years and been horrible in the last 6 months.

Once again, thank you guys!

I do feel lucky I finally found someone who listens! I just hope he continues to listen. He did say something about my gallbladder and it could be an issue. Although, I had tests and mine is at 29% it should be at 30%, so I think that's good enough, right? I don't really want my gallbladder out too :( I can handle dairy just fine.

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 11/27/2012 4:39 PM (GMT -6)   
Hi NDL, any luck with past patients ?

I am trying to speak to Dr. Lipham's office who got back saying that they think I am a good candidate because my DeMeester score was obscene(50+) coupled with low LES pressure.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 11/27/2012 6:33 PM (GMT -6)   
I was going to ask on the 13th. I prefer to ask him personally instead of calling and talking to an assistant. :)

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 12/11/2012 3:29 PM (GMT -6)   
The last day I took my PrevAcid was on December 5th (was on 60mg daily). I had bad reflux the 7th and then things were okay.. just here and there. Today its there but not too bad either... typically while on PrevAcid this is how I felt. I thought I was supposed to have a bad few days coming off it?

I'm getting nervous about Thursday. What if things don't show up how they typically feel? I want the reading to be totally accurate. I want them to see what I know is there and then be able to fix it.

I'm just freaking out I guess.... and I'm so scared of the Manometry. I keep telling myself "It's not that bad, it's okay, just relax"... UGH!!!!

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 12/11/2012 8:08 PM (GMT -6)   
o wow, you were able to stop your ppi and you don't have heartburn?
were you you still having heartburn on the ppi?
maybe you have bile reflux

belljar1995
Regular Member


Date Joined Dec 2011
Total Posts : 93
   Posted 12/11/2012 11:14 PM (GMT -6)   
I think this is great. Imagine how wonderful you could feel --no more reflux, gurgling, burning throats--able to eat like a normal person...or even able to eat after 5pm. I think the LINX makes sense and people seem happy with it.

I hate the comments too. I especially hate the fact that I *still* get the lifestyle rundown with doctors even though I weight 102 pounds--believe me, I'm not having fried chicken every night and I haven't slept in a bed in over a year. I'm lifestyled out.

I too get incredible anxiety before procedures--even a laryngoscope freaks me out--I was a crying mess before my scope and they knocked me out for it! So I do understand--but try to remember that when you are an anxious person, the anticipation is always worse. Bring a really good book or music with you on the way and just try to visualize everything being done and over--walking out of the doctors' office with the scores you need to get the LINX.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 12/12/2012 10:28 AM (GMT -6)   
I had heartburn while on the ppi's and eating "safe/bland" meals... more than what I'm having off of them.. how is that even possible?! Before the ppi's my esophagus was eroded - so it was horrific pain.

belljar1995 said...
but try to remember that when you are an anxious person, the anticipation is always worse.
This is always the case too... so I keep trying to tell myself that!

I got a call last night that my Grandfather isn't doing well. He's my favorite person on Earth, he's my Dad's Dad and my Dad passed when I was 5, so I cling to my Grandfather basically. He lives 600 miles away (in New York) so I go 2 times a year to visit. I haven't been since March because of this GERD junk :( But I'm going Saturday because I HAVE to see him, I don't want anything to happen to him. So I've been crying nonstop. I hope this isn't going to effect the manometry test, as in, the going down my nose and it being swollen in there :( I'm just having a bad day, nerves are shot. I'll let you all know how it goes.

Up in New York my Aunt is very into natural healing and will be furious to know I'm seeking LINX. She yelled at me for fillings in my teeth... my brother is a Chiropractor and very into natural too... so he won't be happy. How do you deal with people who have VERY STRONG opinions like this? I get upset and tell them they don't know what I'm going through - this isn't just a little bit of pain, it gets to point of thinking I'm dying (this is when my esophagus erodes). I don't know how to deal with their opinions ... and I know they are just trying to help but it's EXHAUSTING! I've done research nonstop and tried many "cures" but those only last a few days.

I wonder when I find out results? At the scheduling of these tests they said Jan 2.... but that's a long time away.

Sorry to ramble, my mind is all over the place. Thank you everyone for the input too <3

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 12/13/2012 7:49 PM (GMT -6)   
Thank you greggie. To me it does seem illogical to disregard one or the other entirely!! I feel like surgery is a much safer option than all the medicines.

I'm back home from the manometry and pH Bravo test. I don't feel well at all. I don't know if is from the medicines, stress or what. I just feel nauseas, my head hurts... I'm just overall uneasy.

The manometry wasn't something I'd like to ever do again. They tried down the left nostril first and that was almost in and it had too much cartilage so they had to go with the right nostril. She was incredibly nice and made me very comfortable. I didn't have any "bad" swallows, I don't know if that's good or bad. It was in there a total of 7 minutes. She didn't really say much just had mentioned she could tell there is a hernia there. My sinus area is a little sore.

Next was the endoscopy and the Bravo. This capsule is uncomfortable. They did tell me ahead of time since I'm extremely thin that I will be able to feel it. THEY WEREN'T KIDDING!! Anytime I swallow a few seconds later it hurts, I have to grab a pillow for a minute and squeeze it. I hope this gets easier because if it's attached for 7-10 days of this I'll be crying soon! What do the pH numbers mean on the test? They've stayed around 6-7 ... once it was at 8 and once I noticed it at 3. I'm going to eat pizza or hot wings later and I guess give it a go... I'm scared because I already feel uneasy in my stomach and this is hurting :(

Onto the endoscopy. I don't remember anything. I still have a hernia. I got pictures and some notes. Can anyone decipher this?
- Normal vocal cords
- Squamocolumnar junction visualized
- Diaphragmatic hernia visualized
- CLE at 40cm. Four biopsies taken
- Hill Grade III
- Normal duodenum


Thanks ahead of time guys! I think I'm just not feeling well because of my sinuses and that goo from the manometry :/

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 12/13/2012 7:58 PM (GMT -6)   
i was nauseated after the endoscopy and bravo, it might have been the anesthesia
the capsule felt after 8 days, but i feel my esophagus more sore after the bravo
if you don't have heartburn off ppis why do you want surgery?
just see how you feel without the ppi, on diet and maybe take a zantac once in while

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 12/13/2012 8:03 PM (GMT -6)   
Oh I wish it was just that simple! Typically I do get the heartburn.. this time I haven't.. usually I get it quickly and an eroded esophagus and horrific pain within a month :( I was having heartburn on the medicine too. I just hope all these tests shed some light on everything!

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 12/13/2012 10:31 PM (GMT -6)   
Obviously the lower the number the higher the heartburn... It was going to 4 and I was getting heartburn from the chicken wings. I haven't had those in like 8 months! OMG I missed them... but not the heartburn :(

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 12/18/2012 8:46 PM (GMT -6)   
Hey NDL,

How has everything gone ? Curious to know your update ! Hope you are doing well.

GH

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 12/18/2012 11:04 PM (GMT -6)   
Thank you for asking :) i haven't gotten the test results yet, i am assuming end if the week.

The capsule is still in there, I can feel it a little bit. It was uncomfortable at first but the pain eased down the next day. The pH number did get to 2.3 and I was having awful heartburn during that time. Some if the times I would be feeling decent and look down and it would be at 3 something and sometimes as high as 8.5. It was very interesting. I want to know the results so bad!

The heartburn has been kinda nuts lately because I'm with my grandfather in the hospital while he recovers from surgery. I'm trying to eat healthy hospital food and I even brought stuff with me.stress is making the heartburn worse. I look at him and he's such an inspiration! He will be 92 Thursday and he is healthier than me! He's truly amazing. No medicines and just had his skull drilled into (he had blood in his brain) and he wants to go back to working in the house!

As soon as I hear my results I'm going to post in here. I really do appreciate this forum!

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 12/19/2012 9:26 AM (GMT -6)   
NDL,

Glad to hear your grandfather is doing well! That he is healthy enough to take surgery at 92 is just amazing!!

Hope you do well on the test. Any luck with talking to past LINX patients of your surgeon ?

GH

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 12/29/2012 8:14 PM (GMT -6)   
Any updates, NDL ?

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 12/29/2012 9:13 PM (GMT -6)   
nope.. i get all the results on january 2nd. I have to drive back up there to get them, they can't do it over the phone or video call... kinda sucks since that is 6 hours total of driving!

I'm going to see what the dr says then ask him about the past linx patients. i've really been worried about the whole mri thing. What if in the future I really need one? That kind of scares me :/

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 12/29/2012 10:06 PM (GMT -6)   
NDL,

I have a foot condition that really is best shown using MRI. But, I've decided to have the LINX because I need to fix reflux, period. Foot may impact my quality of life, but GERD seems to change who I am, with mood swings and unclear, incoherent thought patterns. It is an extraordinarily mentally taxing disease.

As for the MRI, I am hoping to hear good news about 1.5 Tesla machines. http://www.accessdata.fda.gov/cdrh_docs/pdf10/P100049b.pdf page 7 and 8 mention trials with MRIs.

In reality, I am hoping that LINX will be a good stop-gap for the next 10 years - I don't see it as a truly life long device (esp given it has been tested only for 10 year swallows). I hope some of the stem cell research becomes a reality by then.

GH
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