Re: Really struggling @ Mat T

[Guest guest]

 

Hi,

                 @ Mat T 

 

I had my myotomy in 1999.  When I was diagnosed in 1978, the manometry was not

being done to my knowledge; the only tests being done were x-Ray for a(n) upper

GI with barium contrast.  (The first MRI test ever performed was in Illinois

in July of 1973 and the CT was also introduced in the early '70's).  I was

told that Achalasia was a rare disease that was typically not ever diagnosed

in women and especially young women; I was 22 at the time.  I am sure that I

had the disease several years before I had a good diagnosis.  Doctors were

telling me that it was in my mind (I knew I was not crazy and this was not in my

mind).  The clue that told the doctors what to look for was the fact that my

wonderful mother told the doctor that I would have a gurgling sound (like water

backing up in a drain) and I would then sit up and cough in my sleep to clear

my lungs.  Now, we know what that was.  It is a wonder that I did not

strangle.

 

I waited until I was out of school (college) for the year and I then had my

first balloon (pneumatic) dilatation in the Spring of 1979.  At that time

there was not enough known especially for women, at that time it was referred

to as a(n)  " old "  man's disease.  When they did the dilation they wanted me to

be partially awake when this was done, as they were concerned about the rupture

of the esophagus.  They did not do a complete dilation at that time but did it

in stages; i.e.; a couple of months apart until they were satisfied that the

e was open.   The anesthesia was beginning to wear off when the first one was

done, and I can tell you the pain was worse than any of the spasms I have ever

gone through and worse than having a baby.  It hurt undescribably.  The thing

that set my spasms off was something cold.  I found that out the hard way. 

 So for the next 20 years, I ate bland and did not eat or drink anything

cold.   I still

had spasms and still had to be dilated over those years, until it came to the

point that I needed dilation about every 3 months.  That is when my

husband and I decided we needed to do the myotomy.  That first doctor a GI

in Birmingham, AL told me that if I ever had the surgery (myotomy) that I would

have to deal with a lot of acid reflux for the rest of my life.  He was

correct in that, I have.  I also developed the vigorous version of Achalasia

(meaning lots of spasms). 

 

I will never forget the date; March 8, 1999 was when my myotomy was performed in

Houston, Texas.   While I was in surgery (laparoscopic); I reacted to the CO2

used for the procedure, and had to be opened really quick as it had to be

completed in a hurry.  I think that was the reason that a fundo wrap was not

done.   

 

I did extremely well until around 2005, when I think the stress from my

public school teaching position caught up with me and I have been having a

dilation about once a year up until this year and it has now been 2 times for

the year.  We thought it would be 3 until I went to the doctor the other day

and it seems I have a ulcer that is aggravating the Achalasia.   

 

I have also had to deal with eosinophilic gastroenteritis, gastricparasis and

some upper esophageal spasms that my GI referred to as Nut-Cracker or something

like that.  That is a totally different spasm than the spasms I normally have

with A.  It is in the upper part of the e.   My stress level is at an all-time

high (I think).  Teaching public school is not what it used to be and I am

certain that is a factor in the increased dilations and the ulcer. 

 

I try to always remember that there is someone else that is in more distress

than I am and I am truly thankful to be alive. I consider myself to be Blessed

in every way.  My husband and I have 2 healthy boys and a grandson.  There are

so many people in this world that live in far more pain that I do.  I count my

blessings every day and place my faith and trust in God and know that if it were

not for GOD I more than likely would not be here after the myotomy.   I follow

doctor orders, take my medication and try to eat right, but also know that I am

human and every once in a while eat something that is not good for me, but I

crave it so much that I eat it anyway knowing that I will be in pain and have

lots of spasms but also knowing I have medication that will take the pain and

spasms away. 

 

The one thing that I traded when I had the myotomy was this:  I can now eat and

drink things that are cold but cannot eat bread.  The gluten in the bread balls

up and will not enter the e at the lower e valve going into the stomach.  I

substitute popcorn and products with corn to satisfy my cravings for

bread.    I take B-12 and B-Complex vitamins as the B Vitamins are for the

nerves and stress, they seem to help.

 

I hope this makes sense and answers your questions.  I plan on being around a

long time; my Achalasia is not going to get the best of me.  I have too many

good things going in my life and I am not ready to throw in the towel.  I am

here to fight this disease that none of us have asked for and is so

misdiagnosed. 

 

Best Regards and God Bless    (hope this makes sense)

Sharon Cline

 

 

From: Kay Davies <kayf.davies@...>

Subject: Really struggling

achalasia

Date: Thursday, December 1, 2011, 4:14 AM

 

Hi everyone. I don't post often on here but regularly keep up with reading

everyone's stories. It really helps to know I am not alone. However right now I

feel very alone. I have spent much of this year having dilitations (on the upper

and lower sphincter), botox and then a crychopharingeal myotomy. Now again I am

struggling as the lower end has tightened again. the heller myotomy is open I

just have scar tissue that is causing tightening. I have a great consultant, but

have had so much surgery this year and havn't worked for 6 months. I work as a

gardener and build green roofs, all self employed and working with my husband. I

really don't want to be reduced to office work as it is the physical outdoor

stuff I love. My head can work out all the things I have to be thankful for and

all the jobs I can do within the business but I am just so sick and tired of it

all. I have had this condition for 21 years and right now feel that it has won,

it has beaten

me. I don't need advice on treatment just some hanging in there stuff. Sorry

guys I just feel so low. love to you all Kay, England