TheSickness journey, VCD,LPR, Non acid reflux

New Topic Post Reply Printable Version
52 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/10/2013 11:54 AM (GMT -6)   
Met with a Top surgeon from UW-health yesterday. As a surgeon I'm sure this guy does a great job, but he seemed very reluctant from the start on helping me. He told me over and over that I wasn't to that point yet with my gastroparesis. This was before he even reviewed my file, he a few lines that he like to say throughout the meeting like " if I had a cure I'd be a wealthy man", which I'm sure he has used on others.

I was hoping everything was in place to make a decision yesterday to move forward with something because I have been having uncontrollable symptoms of constant vocal cord dysfunction, LPR, Nasal congestion, constant heartburn, nausea, stomach unrest. I haven't been sleep well and have maybe averaged about 4 hours of sleep a night in the last couple of weeks. I can't stand not being able to breath through my mouth or nose! and the lack of sleep completely destroys my mental health.

I got to the meeting a immediately noticed something was wrong because the nurse was asking me questions about my history. I was referred to this surgeon by another surgeon, so I was hoping they'd be telling me what's up instead of vice versa. Lone and behold I find out during the hour and a half of waiting in the room that they can't find any information regarding my previous surgeons records, which was the entire reason I was there... So I ended up calling my previous surgeons number and having them fax over my files asap.

While talking to the surgeon, who knows little to nothing about me at this point...He keeps hinting at other options and trying to defuse his responsibility in the matter. Trying to get me to see other doctors I've already seen and saying I wasn't to the point and I haven't exhausted all my options... Which I clearly have exhausted numerous resources to get this point. Half way during the meeting my files from by previous surgeon show up which indicated that I have a slow emptying stomach. The t1/2 time of my results where 170 minutes, which my doctor said 90 mins was normal.

He than went on to talk about possible surgeries like the gastric pacemaker, plyroroplasty, roux en y. He was very reluctant to go ahead with the roux en y. He said there was to many side effects even though it will help my reflux. Up until this point I could have a cared less about my stomach felt, my issues have been painful heartburn, throatburn, and not being able to breath! This sounds alright for me, trade some reflux issues for some stomach issues, this could definitely improve my quality of life and ability to work.

Anyways, I have to follow up with him in a week or two after he review's my files more in depth and talks to other doctors? Then we will talk about if going ahead with surgery would be a good option or not. Which I'm thinking he wont want to, but he was saying my reflux is caused by my gastroparesis and that I probably shouldn't have got my TIF/hernia repair surgery. In terms of quality of life, it's going to be a give and take, if my reflux get's better, I'm going to ask for surgery because not being able to breath is like being water boarded every second of every day.

In the short term, I have been placed on reglan and have been praying like crazy.

Post Edited (TheSixness) : 8/18/2013 2:54:12 PM (GMT-6)


DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/16/2013 10:34 AM (GMT -6)   
Sixness,
As you know, I also go to UW. If you don't mind me asking, what was the surgeons name?

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 5/16/2013 12:05 PM (GMT -6)   
From my perspective, of not having great relief after surgery (but not for gastroparesis), I'd exhaust every single non surgical option before having another surgery that could make something worse. I had myself convinced that my fundo would cure all my ills, I wish my doctors had pushed back and looked more closely at me, though I was pushing them for surgery.
 
I doubt it will make anything worse.
 

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/16/2013 2:53 PM (GMT -6)   
Yeah, I agree. I don't really want anymore surgeries. I'm currently looking at getting my TIF/ Hernia repair undone because of a varies amount of complaints that I didn't have pre TIF. I'm ok with the gastric pacemaker because that doesn't really burning any bridges and it seems to be effective to a point for people with gastroparesis. I'll try out the herb Triphala, never heard of it and it's not expensive. Plus. What I don't understand is how can this herb be just as effective as reglan and not be well known in the States?

http://jpgmonline.com/article.asp?issn=0022-3859;year=1997;volume=43;issue=1;spage=12;epage=3;aulast=Tamhane

--study comparing reglan to Tiphala--

My best case scenario is getting my TIF undone and going back to the way things we're plus managing myself through natural supplements. I have recently picked up aloe vera, vitamin b-1 and papaya.

We'll see, I think what I want most is to be able to work along side the doctors and make decisions also. They have no clue how rough my life has gotten. Breathing is my biggest complaint by far. I can deal with the pain, but I'll be psychotic 24/7 if I can't take air in well.

Btw, the Dr is Campos

My breathing however has been especially bad since I got my wisdom teeth removed. Don't know if my throat got effected by that, but I can tell it's been tighter. This is what led me to go to the ER. Anyways, my wisdom teeth still hurt 3 weeks out, i feel tingling from my jaw to my neck. Hope this goes away. I regret getting my wisdom teeth out.

Since I'm bored, I did an Analysis of Tif as to why I was better before my TIF

Pre TIF
Some breathing problems while laying flat
virtually no breathing problems while upright
mild nasal congestion upright, bad while lying flat
Lpr symptoms, burning in throat
responded to medication
Hard to control, but was possible. I had some months where I was completely symptom free before my surgery.
was able to run fine, except for a few days here and there.
Was able to work with little to no problems
Was capable of laying flat and sleeping on my right side, sitting upright was fine.

Post TIF
Antacids make my symptoms worse
They make my stomach feel nauseous and make my reflux feel worse
Breathing problems immediately following the procedure
Have a hard time walking
Issues driving vehicles, sitting, standing for long hours.
Nearly pass out driving sometimes when driving
Running is painful and breathing issues are horrible
No way of controlling symptoms
After the TIF, I developed heartburn, which I didn’t have before
24/7 nasal obstruction
Migraines due to nasal congestion
Sleeping issues, can only sleep on sides on a 30 degree angle
breathing is difficult while sitting upright and laying flat as a result of this in these positions I can’t fall asleep
24/7 neck tightness and breathing issues

Post Edited (TheSixness) : 5/16/2013 3:07:46 PM (GMT-6)


TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/16/2013 2:57 PM (GMT -6)   
On the few days that I was on reglan, I did notice less burping and little to no heartburn, so thats a plus. I wont be taking it again anytime soon however.

My Doctors are convinced since my TIF is well intact and tight that the reason I have my reflux symptoms which are mostly non acidic is because of my gastroparesis.


Interms of going natural this is what I want to try.

-Cabbage Juice once a day
-Aloe Vera Juice once a day
-Papaya after each meal
-Probiotics after each meal
-Multivitams + B vitamins once a day
-Apple cider vinegar with honey 1-2 times daily
-Triphala 2-3 times daily

Also, I have an appointment with the Chiropractor tomorrow. Will be starting speech therapy soon too.

Post Edited (TheSixness) : 5/16/2013 3:28:32 PM (GMT-6)


DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/17/2013 5:09 AM (GMT -6)   
Sixness,
I thought it would be Campos, I had a referal to see him at one point. I'm not sure why but the more I considered talking to him, I just had this "gut feeling" (no pun intended, lol) to cancel, which I did. What was your opinion of him? Being a UW surgeon, I would assume he's good, but I just couldn't put my finger on what was telling not to go.

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/17/2013 1:21 PM (GMT -6)   
When I went to go see him I thought he was unprepared to talk to me. He really didn't know why I was there, he wasn't informed that I currently have been seeing uw-health doctors and he didn't know I had confirmed gastroparesis, so the meeting was very awkward. During this meeting it seemed like he was doing everything he could to buy time or put me somewhere else.

I don't question whether or not he is a good surgeon, but he does seem a little rushed and uninformed about his patients. He did give me adequate time to reply and express my opinion, which was good. Also, he often mentioned that he was the number 1 surgeon in the state of Wisconsin, which was annoying to me. I don't care if he's the best, I just want someone who's willing to work with me and inform me before I make a decision on what to do.

He seemed alright, I just got the impression he wasn't prepared and didn't want to work with me. I have a meeting with him coming up again, we'll see if that impression changes. He does seem kinda rushed in his office, he only has one office time a week and he's usually "double booked". The nurses used that term a lot while I was there, but if thats the reason, it could explain why he's unprepared.
-TheSixness-

Fighting daily pain from gastroparesis, gerd and lpr!
Had the TIF done 2/2012 and still am symptomatic.

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/17/2013 1:33 PM (GMT -6)   
I'll be interested in your next visit to see what he has to say. Being the best is great and all, however I would hope he doesn't rush or double book surgerys. Confidence is one thing but being over confident can be a bad thing. Lets hope he slows down a bit and understands everything about your issues.

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/17/2013 1:39 PM (GMT -6)   
Another thing.....if he's the best, why wouldn't he want to work with you?

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/17/2013 2:59 PM (GMT -6)   
He was reluctant because he didn't know whether or not I actually had GP at the beginning of the meeting. A nurse brought in my results that we're faxed over during the middle of the meeting. After he found that out he started talking about the GP surgeries like gastric pacemaker, roux en y, plroroplasty. I'm hoping my next meeting with him is a positive one. I'd like to get the gastric pacemaker installed and maybe enter into a study regarding it.
-TheSixness-

Fighting daily pain from gastroparesis, gerd and lpr!
Had the TIF done 2/2012 and still am symptomatic.

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/22/2013 8:36 PM (GMT -6)   
Talked to Dr Wald out of UW-health today, he is sticking to the idea that my esophagus is hypersensitive and he disregarded my symptoms of gastroparesis and my stomach empyting test, which my t1/2 was 170 mins. He told me that for men the normal range is actually a little bit higher than the typical 90 mins and is actually 120 mins, so to him my t1/2 isn't that bad. I do still have some symptoms of gastroparesis like feeling full and feeling nauseous, but he thinks it's still related to gerd.

My number of refluxes are still with in normal and my correlation isn't that great. If I remember correctly this would classify me as having functional heartburn. He said that surgery shouldn't be an option and that he would put me on anti depressants if he didn't think they would help.

Anyways I have a link here explaining hypersensitivity.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950665/

In terms of treatment, he wants me to slowly up the dose of anti depressants until i find a dose that numbs the pain. Also, he told me to stop calling his office and asking questions about my health. If you ever go see him just realize your just a patient to him. The Gi department put me on so many different medications and none of them seem to work. However, It seems like half the battle of living with a condition a chronic condition like this is finding a person who gives a hoot about you. If you do find one that cares, stick with em because you most likely wont find that anywhere else.

Anyways, In my journey to UW-health I wasn't met with any superior treatment, nor did I find any relief. It seems like local is just as good as quality and I don't think I'll be driving outta my way to see Dr wald anymore. In the mean time I'm gonna up my dosage of nortyptyline slowly and find the point where I feel no pain, and as a patient I'll be so numb that I'll be more compliant. Also, I noticed that even though UW-health GI department is regarded as one of the best in Wisconsin, they still wont care much about your LPR symptoms. This seems consistent with all other GI doctors that I have been too. Would think that they would be more concerned about reflux as a whole. Rather than just a smaller segment of the body.

Moving on, I meet with a surgeon tomorrow to talk about getting my TIF removed, I'm guessing anything for gastroparesis is off the table even though I have symptoms of it. Also, just a note I had a bravo score of 1.4% before my surgery, I don't see how It could make things much worse? My TIF surgeon told me he usually doesn't perform the TIF/hernia repair on people with low deemester scores, but since I had such a large hernia he thought it could do some good.

If anyone has advice on what meds or combinations helped with them, I'd be happy to hear. I think I'm gonna do 20 mg of nortrypltyline with 15 mg of prevacid in the AM.

Post Edited (TheSixness) : 5/22/2013 8:46:35 PM (GMT-6)


sewfun
Regular Member


Date Joined May 2011
Total Posts : 146
   Posted 5/23/2013 2:53 AM (GMT -6)   
Hi Sixness,

What do you take for your gastroparesis? I am taking Domperidone that comes from Canada. I have recently added Triphala, but so far I don't see any change. I have read on the internet that sometimes you need to take more of it than what the bottle says. I haven't increased the dose yet.

I didn't realize the gastric pacemaker was still in the experimental stage. If the info I just found on it is correct, I don't meet the requirements for it anyway. My GP is controlled with the domperidone for now.

I'll be watching for your updates.
Diagnosed GERD 4/2011, gastritis & esophagitis 5/2011 (healed now) and gastroparesis 6/2011
Medications: PPI-free 4/14/2013, stepping down Zantac
Domperidone 10 mg 3 times a day

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/23/2013 4:31 AM (GMT -6)   
Sixness,
I had a similar experience at UW, once they label you "hypersensitive" it's game over. Yes, UW loves thier anti-d's, I was prescribed 3 different ones in order to numb and dumb me up. I didn't get anywhere with the lpr with them either, again they think it's just hypersensitive. Yep, thier paitents with phone calls gets real short.....they just don't like them. To think, all this time, I thought it was just me....hmm, guess not.
 
Are you still taliking to Campos about surgery? Did he ever mention how many nissen he has done?

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/23/2013 10:10 AM (GMT -6)   
I'm going down to talk to him today. He hasn't mentioned anything about the number of nissen's he has performed. I'd like to pursue getting the nissen still, but since my Tif is intact and tight, I don't see how any surgeon would operate on me. If I do end up going down, I'll try and remember to ask.
-TheSixness-

Fighting daily pain from gastroparesis, gerd and lpr!
Had the TIF done 2/2012 and still am symptomatic.

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 5/23/2013 10:59 AM (GMT -6)   
Sorry to hear. This is all too common a story. Please let us know how increasing dosage of the tricyclic works..

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/23/2013 8:25 PM (GMT -6)   
Yeah, I'll let you know. I'm on the second day of upping my dose to 20mg. within 30 minutes of taking them I do notice that my throat feels worse. I'm thinking this is a bad sign, will tred on for a little bit. I've done a run of 25 mg of elavil for 3 weeks and stopped because it made my throat worse, so I'm thinking that will be my limit. I wanna believe that i'm hypersensitive, but it doesn't seem to be working.
-TheSixness-

Fighting daily pain from gastroparesis, gerd and lpr!
Had the TIF done 2/2012 and still am symptomatic.

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/24/2013 4:20 AM (GMT -6)   
They tell me I'm hypersensitive but I could only wish that was it. Lets see, water brash, white tongue, sore throat, chest pain, tight lump, oh and heartburn too! BS!!!

Linky59
New Member


Date Joined Jan 2013
Total Posts : 13
   Posted 5/24/2013 4:15 PM (GMT -6)   
Sounds like me. Today has been awful, coughing all the time, raw throat, fatigue. I've eaten all the right things today. Taken meds, drank a ton of water, cough drops...My throat is raw. I can't get in to see an ENT for 2 weeks.The gastric pacemaker is an option for me, the only option because I have gastroparesis w/ LPR. Nissan would do more harm than good. Today has been rough.
Wendy
LPR, gastroparesis, IgA Nephropathy (kidneys), boardline diabetic, neuropathy, bipolar disorder, depression, anixety and probably something else.

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/26/2013 8:26 PM (GMT -6)   
Doggbones,

Btw, Dr campos has performed over 2,000 nissens and has performed 12 Tif's. Anyways, I tell that to myself too...I only wish that I was hypersensitive... it's hard to be hypersensitive when you have multiple family members with the same issue.

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/27/2013 10:56 AM (GMT -6)   
Sixness,
Thanks for the info on Campos.

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/27/2013 8:40 PM (GMT -6)   
Doggbones,

I'm just curious, If I can remember correctly, on your last ph exam you had somewhere of around 33 refluxes, but I was wonder how many of those were proximal? From my understanding, proximal would mean the upper esophagus and distal would mean the lower esophagus. Anyways, I noticed on my exam that it was more often my proximal refluxes that would make me symptomatic.

I can't remember where I read this, but this article descibed how the lower esophagus and the upper esophagus had different tolerance levels to stomach contents and ph levels. Than when you think of things in terms of the throat, any number of refluxes is considered abnormal.

So basically I'm just wondering why GI doctors don't take proximal refluxes seriously?
I have burning pain in my upperchest, lower neck and in my frontal sinuses. It seems logical to think, since I've had my TIF, my proximal refluxes haven't diminished. My reflux is worse now than it was preTIF. What I would like to find out is whether or not a nissen would still benefit me and cut down my proximal reflux.

Anyways, I'll be talking to local ENT's this week and a speech therapist. Also, I ordered gaviscon original 600 ml, which will arrive in 3 weeks. I'm also upping my dose of omperazole to 40mg x 2 a day with zantacs at night. I'm still on noritrypitlyne right now, but hoping to ween of that and possibly get put on lyric or nuerotin to finally put this neuropathic idea behind me. I'm hoping that being put on lyrica will allow me to see the benefits of neuropathic medication much quicker than the tricylic antidepressants.

Recently, I have been rereading these links

http://www.uptodate.com/contents/approach-to-refractory-gastroesophageal-reflux-disease-in-adults

and this one

http://www.ncbi.nlm.nih.gov/pubmed/20002704

^-- Effect of pantoprazole in patients with chronic laryngitis and pharyngitis. Seems like 80mg of pantoprazole was able to cut down proximal refluxes from 32 vs 8 on the medications.

I had 35 on my first exam and 25 on my second exam, hoping I can maybe improve another 10 proximal refluxes when I add another 40mg.
-TheSixness-

Fighting daily pain from gastroparesis, gerd and lpr!
Had the TIF done 2/2012 and still am symptomatic.

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 5/27/2013 9:30 PM (GMT -6)   
If I read that abstract correctly, they are referring to acid refluxes, which are mainly what's affected by PPIs. It is not surprising that they found the results they did with their pH studies, since they are measures of acidity directly impacted by PPIs. But a high # of total reflux events, especially proximal, can still irritate the throat/esophagus even when a PPI is keeping down the # of acid reflux events. That's possibly why only half of their ENT patients improved symptom wise.

Were the 35 and 25 refluxes you had acid (ph <4)? And were you on acid blockers at the time?

BTW- 80mg Pantoprazole is equivalent to 40mg Omeprazole. My ENT put me on 40mg Omeprazole 2x/day when I first saw him, which I later read is pretty common dosage for LPR.

Have you had blood work done? Or allergy tests?

It's great how active you're being in solving this. Keep up the good work!

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 5/27/2013 9:56 PM (GMT -6)   
I have had blood work done and everything seems fine in that department. I did have some testing done at the ER that indicated that my MCHC was 36.1, which the range is 31-36. Also, albumin is 5.0 which is high. The range idicated is 3.6-4.7.

I've also been tested for celiacs disease, which I'm still awaiting the results from. In turms of vitams/supplements, I recently added omega-3, b12 and ginger root to my morning routine. Going to be sampling gaviscon original in about 3 weeks when it gets here.

I had an allergy skin test done 3 years ago and it indicated that I had mild allergies to mold and pet dander. Other than those nothing else was significant. Prior to my lpr symptoms, whenever my dog would sleep in my room my nose would be stuffy, so that didn't surprise me.

I had 35 proximal refluxes when I was off PPi therapy. I'm assuming the majority of the refluxes were non-acid because I only had 8 total acidic refluxes compared to 46 non acidic refluxes. Can't remember if it was correlated or not with non-acidic with this exam or not. On my second exam I had 25 proximal refluxes while I was taking 40mg in the mornings. I had 5 Acidic refluxes and 49 non-acidic. On this exam there was correlation with non-acidic

Post Edited (TheSixness) : 5/27/2013 10:08:39 PM (GMT-6)


DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/28/2013 4:56 AM (GMT -6)   
Sixness,
I don't have my test results in front of me right now, when I get home tonight I'll dig them out and see what it says.

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 5/28/2013 6:44 PM (GMT -6)   
Sixness,
My test results (on ppi) was 31 refluxes with 13 being proximal. I would like to get another 24 hr test now that I stopped ppi's. I now have water brash and sour taste daily but I did on ppi's also, that was another reason I stopped taking them.
New Topic Post Reply Printable Version
52 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Wednesday, June 20, 2018 5:52 AM (GMT -6)
There are a total of 2,973,604 posts in 326,209 threads.
View Active Threads


Who's Online
This forum has 161100 registered members. Please welcome our newest member, maybellpeltier.
346 Guest(s), 8 Registered Member(s) are currently online.  Details
Michelejc, twingirl812, tickbite666, LucyDog, Hoagie, Crazyick, Noggin2u2, straydog