Hi Howard,
This is Pete (I live in western Maryland, am 60 years old, and have
written
you many times) who suffers all the time and can get no help - 24/7
burning
in larynx, trachea, throat, tongue, nose etc. I also have foamy saliva
which I am sure is caused by gaseous acidic or bile reflux. I am at the
end
of my rope and have been suffering since last June and the upper burning
and
stinging is changing and is always equal to or greater than (never
improves). My PPI's stopped working in 2004 and then again in June 2007.
I have written in here many times and I am sure you remember me and know
me
quite well (eg Dr Marohn at Hopkins in Baltimore with the four hour
davinci
fundo bull****, and his UGI with cine esophagram- Gastro in Frederick who
found duodenal ulcers when trying to do bravo and I never got bravo -
PPI's
don't work, or very little - and I know my ulcers are back, but the non
stop upper burning is killing me and I have no life, and the gastro in
Frederick doesn't believe in regular EGD's even if you have polyps and
have
had ulcers. He just scoped me last November and I have seen him twice
since
and told him I am still on fire, and he basically told me to call him if
my
stools turn black. I am currently taking 40 mg of nexium (can't do 80)
and
sucralfate twice daily as sort of maintenance. I have basically run out
of
doctors and have no one to help me with trans****tation. I live in western
Maryland by myself, and have a cousin in Texas who is awfully nice, and is
willing to help me if necessary. I have no friends or family where I live
except for one person and it is very difficult to get her to help me for
procedures or whatever. I have been very ill as of late and I know some
of
it is from my reflux. My internist can not help me for sure and paxil and
valium is not the answer. You need to get at the underlying cause as in
most medical situations.
I have a few serious questions for you, if you could please answer them in
line I would appreciate it. I know you have a complete GERD testing
facility at your practice in Crosby, Minnesota including impedance
testing,
and I know you are a busy man, and I have told you many times how much we
appreciate your dedication and efforts in this ng. I consider you a true
expert in the field of laparoscopic surgery, especially anti reflux
surgery,
and I still say you know way more about GERD than any gastro I have ever
been to.
- If I were to get my cousin in Fort Worth Texas to come with me and camp
out in a nearby motel near your practice for two weeks (or hopefully less
if
possible), could you do a workup on me (which would be scheduled in
advance
before I got there) to determine if I would be eligible for a lap nissen.
I
would prefer you to be my primary doctor recognizing other people may be
involved for manometry, etc. I can send you all kinds of data before I
get
there and explain everything in great detail. I am sure you would want to
do an EGD first and then I would prefer to go directly to the impedance
next
(and bypass the bravo if that is okay with you), especially since the damn
PPI's could be making me worse if its bile. I would also like to make a
special request that I go off therapy for no more than 3 days on the ppi's
and one day for zantac and (in case the ppi's are helping a little - maybe
10 to 15%). And then you could do manometry or whatever else you decide.
- This would be a costly adventure for my cousin and me (and I haven't
flown
in 15 years), but if you did agree to diagnose me and you did the EGD
first,
and you found some duodenal ulcers - could you please continue on the next
day or whatever with the impedance test, instead of abandoning all efforts
because of an ulcer or ulcers (unless they were really bad). In other
words
I doubt one more day would make any difference and I have to know whether
I
have acid or basic reflux to determine my eligibility for a possible lap
nissen (and I could not afford to go all the way out there just to come
right back because of an ulcer, and not get the impedance test). I
understand we will need the manometry. I told you previously I do have
some
esophageal motility problems but that was not going to stop Dr Marohn from
operating on me before he found out about my ulcers from the gastro in
Frederick. I can send you the manometry wave forms from Univ Md in 2004
and
my UGI and cine re****t from last September from Hopkins.
- If someone has ulcers (active or past), would that prevent you from
doing
a lap nissen. I have never tested positive for h.pylori and I have had 12
EGD's in my life. Those last ulcers were caused by rebound acid from the
pills stopping working plus going off them for two weeks before the test
which was ridiculous overkill IMO.
- The way I see this is the only way to stop my upper burning is the lap
Nissen surgery and I would have to deal with the ulcers by sucralfate. Do
you agree this could be a possible scenario. I can't go on living like I
am
and taking ppi's that may be actually harming me, but I still think it is
acid since they worked for 7 years on prevacid and then for 3 years on
prilosec - now nothing helps. Plus my stomach must be acidic or I would
taste my enteric coated fish oil I would think (if it was bile).
- Howard, please consider my request since I don't know what else to do
and
am even considering moving to Texas and I will lose tens of thousands of
dollars on my house along with huge moving expenses. But I am desperate
and
I need someone like you who can do the whole thing all in one building and
hopefully within a few days or no more than two weeks, if you could be so
kind.
- If you did accept me as a patient (you do accept my Blue Cross insurance
BTW) and you did deem me a candidate for the surgery via EGD, impedance,
and
manometry findings, could you write a letter of recommendation for the
surgery to a surgeon in another city. Your test re****ts would be
sufficient
I would think, along with your written forwarding letter. For obvious
reasons any major surgery should be done nearby where you live and not
thousands of miles away, but I would trust you implicitly to do the
surgery.
- Do you know a reputable lap nissen surgeon in Fort Worth first, and
Dallas
second, so my cousin could take me if I moved down there. Do you know if
they do impedance testing in either city (I googled impedance testing and
couldn't find anything in either city)
I am not well Howard, and I don't know what else to do. Is there anyway
you
could work something out with me in the near future. If so I would give
you
my e-mail address and then my phone number and I could talk to some of
your
staff about the logistics and where I could stay etc.
Thank you...Pete
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