Advice from Dr. @ Cleveland Clinic

Hi all,

I received a call from Dr. Shay @ Cleveland Clinic, who laid to rest a lot of my fears over the past years. Aside from my symptoms my two HUGE issues were esophageal dysmotility (from long-standing GERD), and a demeester score of 50.8. For me these two things (for me) meant long-term severe GERD and, given my continual symptoms on PPI's, I was looking into surgery.

The Dr. said that

1) The demeester score was overwhelmingly due to a nightime GERD event which I didn't clear because I was not awake. Even with that event, I was a total of 6.5 (and borderline is 5.5). So, I would have been a 6.5 with a HUGE asterisk noting that it was due to the nightime event, and the test would not mean a whole lot.

2) Although on my test it says the dysmotility is due to GERD, most dysmotility is not, especially when it is minimal (like mine). Therefore, this means nothing in relation to GERD. He thinks they should have not put "result of longstanding GERD" on the test results.

So I guess the point is tests need to be interpreted by a great doctor...I had not had this type of interpretation of my tests before. Maybe I hadn't had any interpretation...I feel like there was a huge lack of dr./patient communication with other doctors compared to this Dr. Shay.

This Dr. greatly allayed my fears, and explained my tests better than the Dr. I have been seeing @ Duke University medical center for over a year now. This Dr. understood the information better, and I guess that was to be expected (they are number 2 GI in the nation).

I was very surprised when Dr. Shay told me that it would be a viable strategy to not take ANY ppi's (they cause a right side pain for me), and to just live with it and get scoped next in 2013.

For those of you in NC, Dr. Shay told me that the TOP guy here is a Dr. named Shaheen @ UNC apparently, whose whole life is dedicated to Barrett's and esophageal diseases.

Now I think my test will be to stay positive despite daily heartburn symptoms and to let the issue go for now, despite the symptoms. That may mean leaving the forum for a while, we will see. But I hope to be a part of this forum as long as I can help people on it and, more often than not, they can help and support me :)

Post Edited (theacidrefluxman) : 10/4/2011 12:16:41 PM (GMT-6)

Wonderful news for you!  I am so glad you found someone so helpful.  I am treated at Duke and just had my surgery in August and my guy was great.  I am sorry that you had someone that was not so helpful!

Jeanae

:) Will do.

Also wanted to post this b/c I know a few members want to know what long-term reflux w/o PPI's is like, and if it is ever recommended. I am sure it depends on the individual case, but this Dr. saw no problem with me taking no PPI at all (Since I get bad side effects).

I know PPI-LESS is in the same boat, and that Chuck T is also going without PPI's right now, so I guess it is good additional reinforcement.

First of all ARM - great news .. that your doctor thinks that you should be able to manage your condition without the PPIs or the surgery!

I recently switched my GI doctor and in fact am going through another pH testing today (all taped up again!). I will let you all know what this GI doctor thinks I should do based on these new tests .... he is very thorough and I like him (he does not look at me as if I have ten heads when I say that PPIs and H2s give me terrible side effects!).

MMM - I am trying out ativan (benzo) again .. I was off and on on klonopin during June and then in August - which helped me a bit I think ... now this new pyschiatrist of mine thinks ativan should help me and suggests that it is possible that it may calm the nervous system down and can reduce / alleviate the (nerves) related side effects from the PPIs (all the side effects I get from the PPIs are nerves, brain related for me...) ... I will let you know how it goes on ativan .. (I am off of it right now for a few days as I go through my new sets of GI tests).

Sometimes I feel, I should just go ahead and take my chances with the Nissen ... and move on ... but then I remind myself that I need to give this time .. and let time tell me if I should or should not go for the surgery ...

Hi PPI less, wonder how is your PH test result?
I take Ativan to help with the anxiety, not sure but somehow i think it make help me some. today is my last dose of ativan, btw did you get some culprit with ativan on withdrawal?

Ahn

4hn - my manometry was normal and so was the endoscopy. As far as the pH testing goes, my regular catheter one was normal in the esophagus (although I haven't received the document from them yet and I was too groggy after the endoscopy to understand/remember what my doctor was telling me!) .. but my doctor is going to do the dual impedance one in the next couple of weeks which will be more accurate - so I'll wait for that one instead ..

Another thing my doctor told me they can do is take biopsies from the throat tissues to assess pepsin content (as a source for the damage in the throat) .. and see if non-acid stuff is causing the damage or not. This is apparently some new research they've started there which he thinks will be helpful in diagnosing the root cause ..

@ARM - we haven't scheduled it yet. My GI does not seem to be in any hurry since he thinks my other tests did not indicate anything to be alarmed about. I am hoping we can get it done this year though. I'll post when it does happen.

My symptoms go up and down - some days are good others not so good. In general, however, a lot better than back in the summer. Still not out of the woods though. I feel the breathing exercises (yoga) are helping me. There is no scientific study but I feel that it must help with the transient relaxations of the LES since the deep breathing exercises seem to target the vagus nerve in general.