My story-post Heller/Dor

[Guest guest]

Hi all,

I am one of the lucky ones that still lurks here because I realize that my

situation could change in the future.

In November of 2010 I started having problems swallowing food. Nothing to bad,

but occasionally I would have to wash my food down with water. I didn't think

much of it at the time and basically ignored it except I made it a point to have

a drink handy when eating just in case I would need it. About 2 months later I

started waking up in the middle of the night coughing and choking and realized

something was very wrong. It would happen as soon as I fell asleep and continue

throughout the night. I quickly learned that if I forced the food & liquid up

out of my E I could sleep, so this became my routine right before brushing my

teeth in the evening. I went to my GP doctor and told them what was going on

and they sent me to have a swallow study. I told them I could swallow fine, but

they insisted that I needed to have it checked out because to them it sounded

like a swallowing issue. The test involved a speech pathologist giving me

barium to swallow and watching how it would go down. Test results were normal

except they told me I was a double swallower and that many people unconsciously

double swallow and it is nothing to worry about.

I went back to my GP and told him that something was wrong even tho the test

results were normal. I explained about the food coming up and he said it

sounded like a bad case of heartburn and to take Prilosec, but to make sure he

would order a barium swallow test. In the meantime, I was starting to have

trouble eating some foods like bread, potatoes, eggs, and so on. I was losing

about 3-5 lbs. each week which I thought was great because I could easily lose

about 20 pounds to be at my ideal weight. Around this time I also had my first

spasm when I was driving and I was convinced that I was having a heart attack

and almost lost control of my car because it came on so fast out of nowhere and

was this excruciating pain that moved from my chest up to my ears. It passed

after about 5 minutes and I immediately called my doctor because I thought I

should go to the ER or something because I was going to die! They told me to

come to the office where they checked all my vitals and said I was fine. They

didn't know what I experienced but it wasn't a heart attack so I was relieved.

From that point on I would have one of these " episodes " about every 2 weeks but

I knew to just wait it out and it would pass.

In March I had the barium swallow test which showed that I had a mild case of

GERD, otherwise I was normal. My normal doctor was on vacation so I saw his NP

and told her that there was something very wrong and that it was not GERD. I

was still taking the Prilosec and things were getting worse. By this time I was

exhausted from lack of sleep, losing weight steadily, purposely regurging food

before going to bed, and I was eating a very limited diet because most food

would come back up. She sent me to a gastro guy and told him that I needed to

get in to see him ASAP for an endoscopy. I saw the gastro guy the next day and

told him all of my symptoms and he said it could be a number of things and to

come back in the morning for an endoscopy and a colonoscopy just to check

everything out. For the colonoscopy I had to drink a bunch of laxatives and

they said to mix it with Gatorade, any kind/flavor except orange or red so I

chose the blue one. I followed all of their instructions, had the endo and

colonoscopy the next morning. The first thing the doctor said when I woke up

was that I had an unusual colored esophagus and that he noticed something while

doing the endo that might explain my problems. However he could not figure out

why my E was blue!Ilaughed and told him about the blue Gatorade. Apparently it

sat in my E all night and stained it blue. He said that explained it. He never

really told me what he suspected was wrong, but told me there was one more test

he wanted me to have to confirm his suspected diagnosis. I recall him saying,

" Don't worry-we can fix this " , which made me break out in tears. Finally

someone besides my family believed there was something wrong and there was a way

to fix the problem.

I had to wait for about a month for the test that the doctor wanted me to

have---a manometry. My insurance did not want to cover the test so I had to

wait while my doctor told them it was necessary and they agreed to cover it. I

had the test and only had a little difficulty swallowing the thingy, but

otherwise it was OK. About 2 weeks after the test I finally found out a name

for what ailed me-achalasia. I still do not know my numbers from the manometry

but I was told that basically I had no peristalsis in my E. The gastro guy went

over the options for treatment (surgery, dilation and meds---botox was never

mentioned) and basically convinced me I did not want to try dilation so that

left trying a calcium channel blocker because I was not ready for surgery yet.

He prescribed me Procardia and I took it about a week before I had to stop. I

have a bum ankle from an old injury that started aching so badly I could hardly

walk that came out of nowhere. I looked up the side effects for the Procardia

and sure enough one of them was joint pain. So that left surgery. I went back

to the gastro guy and told him I was ready for surgery. At this point I had

lost about 45 pounds (now underweight), my hair was falling out, I wasn't

sleeping and I knew I couldn't keep this up for much longer. Because my

symptoms had progressed so quickly they also sent me in for a complete scan of

my torso-heart, lungs, liver, etc. just to make sure something else wasn't

aggravating my system. Everything was normal.

I was referred to Dr. Maish at UCLA and went to meet her in June. After

speaking with her I was ready to schedule surgery. I asked for her first

available date and was told that it would be July 7th. 7-7-11 was my lucky day.

I had the surgery and have not had any significant problems since then. I still

remember drinking cool water the first time after the surgery and feeling it go

all the way down to my stomach! I know I will never be normal but I am OK with

that. Two weeks after the surgery I resumed all my normal activities and was

told I could eat whatever I wanted, but to gradually test foods because I could

have problems with some. About a month after the surgery my energy levels were

back to normal. I have only had very mild spasms since the surgery and they now

occur very rarely, like maybe one a month. I can eat whatever I want, never had

a problem with heartburn, have gained back 36 pounds and hopefully by this July,

my one year anniversary, the new hair that is growing back will be ready for a

trim. I still don't know why this happened and happened so fast, but I was told

by Dr. Maish that even though I was not aware if it, I had this problem for

quite a while because my E was extremely stretched out, which is another reason

I decided to go ahead with the surgery. About a year before my E problems

started I had a skin rash breakout that was diagnosed as psoriasis and I also

found out I am hypothyroid. I think it is very interesting that all of these

new health issues all occurred within a relatively short amount of time, and I

suspect that it is due to some kind of autoimmune disorder. Hopefully someday

they will figure it out so that they can help others diagnosed with this

problem.

I am about 7 months post Heller/Dor and very happy to be here. I honestly

thought at one point in time that if something wasn't done to fix the problem

that I would die. Sure, there area few things that I can't eat, but once you

figure out what those things are you just avoid them. Compared to where I was a

year ago I am doing fantastic and looking forward to this new year!

Thank you all for sharing your experiences and knowledge. I read so many of the

posts and soaked up info to ask the doctor about, researched a surgeon, and

educated myself on what to expect before, during, and after the surgery.

Best,

Lynn