|This summary of my journey is not a short one, so make sure you have time to read it all!
First, let me introduce myself. My name is Julie Warren; I’m 35, married and the mother of 4 children, ranging in age from
18-2. I recently moved from Indiana to Arkansas (due to husbands work) in the United States. My husband and family
have been a big support system during my countless surgeries and procedures.
My achalasia journey started when I was about 12 (inability to swallow pills was the first sign I had), although I was not
diagnosed until the ripe old age of 20 (this was in 1991), by a local ear, nose, and throat doctor. I was referred to a local
gastroenterologist and it all began with one dilation, which worked quite nicely for about 7 years; performed by a local
doctor at the time in Bloomington, Indiana. I thought all was good!
By the age of about 28, I started having problems again, dysphagia mainly. I returned to the previous gastroenterologist,
but he wanted to do things his way. I did have him perform another dilation; this time it only lasted for about a year. I felt
I was on the road to endless dilations. I wanted something that lasted a little longer, but he refused to talk about any new
treatments. I wanted something more for my health and future.
When i turned 30, I started having more problems and decided to search for a procedure that would give me more long
term relief. I had heard about a procedure called a laparoscopic myotomy. I did some research and decided that the risks
were worth having the procedure done. Next I had to find a surgeon that could perform the surgery. I called a few local
surgeons and finally I found one. I went in for a consultation not really knowing what to ask! I was scheduled and had a
laparascopic myotomy with a nissen fundoplication performed at my local hospital. First of all let me tell you how important
it is to research your surgeon. I was not educated enough to know this, and picked someone who butchered me, causing
me more problems than I had ever had before the surgery, but it was what they refer to as an incomplete myotomy. My
fundoplication was also to tight, meaning he cut too much along part of the esophageal muscle and not enough in another
place, resulting in a severely distended esophagus in the lower portion.
The first surgery took place in December 2001. By May of 2002 I was having my worst symptoms ever! Symptoms
included severe dysphagia ( liquids as well as any kind of solids), night time regurgitation, and lots of weight loss, plus being
sick all the time from malnutrition and aspirating on food that would not go down! I was a total and complete mess!
I returned to another gastroenterologist, since I wasn't happy with the last one. I had three more dilations between May
and August of 2002. They did not help due to all the damage that was done by this surgeon, they actually made things
worse. Since the lower third of my esophagus was distended, the stretches were just adding to the "pouch" that was
forming. Finally, the gastroenterologist admitted that he could no longer help me and suggested I go back to the surgeon
that performed the first surgery. "Are you kidding?" I thought to myself. There was NO WAY, this surgeon was going
to get his hands on me again! Over the next few months, I started doing my much needed research on doctors and
hospitals that specialized in achalasia, and finally found the Cleveland Clinic Foundation in Ohio, which I highly
recommend if you are anywhere near there! I will never go anywhere else now for achalasia treatment even though it is a 7
hour drive from my home town. On my first visit in July 2002, I was seen by Dr. Joel Richter (who now practices in
Philadelphia, PA, at Temple University
Hospital, but use to be the chairman of the CCF Gastroenterology Department). I went through all of the normal
testing procedures, manometry (which was placed during the endoscopy due to all the damage), barium swallow, pH
testing and so on. At this point I'm starting to consider barium as part of my normal diet! He came to the conclusion that
my lower esophagus was massively distended due to an incomplete myotomy and needed to be repaired as soon as
I was hardly able to eat or drink, and was taking calcium channel blockers just to try to help get some stuff down. I finally
had to quite taking it due to a severe reaction. I was rushed to the ER with a heart rate of 166 bpm. I normally have a low
blood pressure, thus causing the reaction to the medication. I didn't feel like doing that again. On the first visit I also meet
with the surgeon and was scheduled for surgery as soon as possible with Dr. Thomas Rice. Unforeseen red tape with
my insurance caused delays, I'm sure we all know this battle all to well. I know this is a problem for a lot of achalasians,
dealing with the insurance companies. It ended up taking me almost 3 months to get my insurance to accept the fact that I
needed the surgery. Dr. Richter actually wrote a letter stating that I absolutely had to have this surgery.
Finally, September 2002, I left my home again to travel to CCF for my long awaited surgery. I was prepped and sent off
for what was suppose to be a 3 hour surgery at the longest, but ended up taking over 4 hours. Dr. Thomas Rice had
performed an open myotomy with a toupet fundoplication, also removal of a lower section of my esophagus. He just
about told me off when I came to, telling me that if I ever let another doctor like the previous one touch me, he wouldn't
touch me ever again. I was in the hospital for 9 days. I woke up to tubes everywhere, and wondered if there was
anywhere else they could have thought of to put another tube! I had a chest tube, nasal gastric tube, a pic line in my neck
(due to malnourishment), not to mention catheters. I came home, I had some nursing help due to incision complications. I
was so malnourished by the time that I had my surgery, I was living on Ensure and other supplements, which I still couldn't
get down half the time. My lowest weight was 97lbs (normal is about 135 for me). I’m not a tall woman, 5’5’, so that was a
little much even for me.
In the last 6 years I have had 3 dilations since my surgery, one in April 2004, one May 2006, and one in June 2008. All
performed at Cleveland Clinic Foundation. The first was by Dr. Joel Richter and the others were performed by Dr.
Edger Achkar (current Chairman of the CCF Gastroenterology Department). I am currently doing OK, with only
minimal problems, in hopes that I can stay out of the operating room for a little longer. You can also meet my husband
Douglas if you like, he is also member of the group. This is just the short version of my journey, and I hope that it has
helped you realize that it really isn't all in your head!
I also highly recommend wearing a medical ID bracelet! I wear mine or have it attached to my purse on the outside. I have a
family member that is an EMT, and there is a new way of finding your airway for paramedics. The procedure involves
putting a tube down the esophagus and blowing up a balloon, if they hear gurgles, it's in the esophagus, if they hear air
it's in the trachea. The problem here is that if they hit the esophagus and not the trachea the first time and the person
has had surgery or procedures there is a greater risk that they can perforate the esophagus! Which puts achalasia
patients at a greater risk of further damage. Which we all know we don't need. I have posted a few links on the Books
page for different places to get one! I got mine from Lauren's Hope. Plus the fact that I have a wrap done, and if a NG
tube is put down and they don't know this; there could be damage done! I love my bracelet, I picked out what I wanted it
to look like and exactly what it says!
We formed this web site for the support of achalasia patients and their families, to help educate and inform people of all
of their options. Please feel free to email me or one of my partners on this website for any personal questions you may
have or suggestions for the site. You can contact me through the site or email me directly at firstname.lastname@example.org!
Thanks and Bless You