TheSickness journey, VCD,LPR, Non acid reflux

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)

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.

http://www.inspire.com/groups/agmd-gi-motility/discussion/triphala-instead-of-reglan/

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)

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.

Another thing.....if he's the best, why wouldn't he want to work with you?

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)

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?

Sorry to hear. This is all too common a story. Please let us know how increasing dosage of the tricyclic works..

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!!!

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,

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.

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)

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.