Re: Hi, I'm a new addition...

[Guest guest]

I had really good results from Dr. Richter...and yes he kind of yelled at me too...for letting other doctors who didn't know what they were doing....do surgery on me. It has almost been a year since my reconstruction surgery at The CC. I had spasms and pain for about the first 2 months. I can now eat normally...if thats what you want to call it...I have no problem eating...its just i can't eat much...a Happy Meal is to much for me. They may want to wait til your older and they know that you have stoped growing and let the disease progress some...I know that sounds bad...but it could be one of his angles...have you tried channel blockers? They helped me a great deal..didn't like the side effects tho. What ever you can get down..make sure it is packed with not only calories but lots of nutrients and vitamins..maybe make your own shakes or try ensure to help supplement. This is a good group and you have come to the right place for support. We all know what you are going through...believe me..I was in the same spot. I lost a lot of weight was so malnurished they couldn't even get a vein on me...finally went through my neck for fluids. I hope you find at least some support if not some suggestions for you.

Good Luck

In Indiana

[Guest guest]

Hi

I am 26 and have A and migranes as well. It is so hard to explain

to the doctor that I want a shot for my migranes because other meds

disolve on my LES rather than in my stomach. Luckily that is the

only time I have heartburn. I also went through several years of

being told that my A was nothing more than heartburn. I never

beleived that, but I took there heartburn meds on a trial basis so I

could tell them it did not work. I just recently went back to my

PCP who relunctly sent me to the GI. He was amazed, told me he was

sure it was heartburn and wanted to know how they came to the A

diagnosis. Once I told him all the test they ran he said WOW I

never would have thought of that. Of course I will probally be the

only case of A that he ever sees. Keep pushing your doctors if you

dont like their answers and even change doctors if you need to. You

know your body better than anyone else and if something is not right

than you are the first to know. Tap water works best for my

spasms. Living in Texas and requesting water no ice gets plenty of

curious looks when I eat out. Oh well, I am the customer right.

Wish I had more words of wisdom, but hang in there. You are

surrounded by people who want to help and most of all understand

your need to discuss your A. Keep us up to date.

Paige

[Guest guest]

Thank you, Paige, for your support. I have also been put through

many meds for heartburn and have had the 24 hour PH tube test twice

so far. I hope soon that there will be more advances in cases of

Achalasia.

[Guest guest]

, I have tried channel blockers and they didn't really help me.

A happy meal is too much for me as well, and if I push myself

stupidly I end up getting quite sick from all that food. Thanks for

your words of wisdom.

[Guest guest]

Hi -

My heart goes out to you and just wanted to pass on my remedy for the

spasms. It may not work for you but it is worth a try. Take two Extra

Strength Gaviscon ( just let them melt in your mouth )and lay down with a

hot water bottle on your chest. This sounds like such a simple solution but

my surgeon recommended the Gaviscon when I was having very bad spasms after

my surgery ( 4 years ago ) I just started with the hot water bottle simply

because it felt good. The spasms do gradually subside and I very seldom get

one now, but if I do it is usually because I have eaten something which I

feel is not going down very well and it feels " stuck: "

I stayed on " soft " food for several months after my surgery and in fact it

was about 6 months before I could handle salads, etc.

Hope this is helpful and you find the relief you are looking for.

All the best -

T you,- e- Original Message -----

From: " xorangexstarsx " <xorangexstarsx@...>

<achalasia >

Sent: Wednesday, August 13, 2003 9:18 AM

Subject: Hi, I'm a new addition...

> Hello. My name is and I am from a small town in New York.

> I've been reading your recent and past posts for a few months now,

> and have finally decided to introduce myself so that I can get some

> advice from your own experiences. I am a 17 year old girl. I have

> had achalasia since I was about 13 or 14 years old. Back then, my

> esophagus had gradually " closed " itself off until I could not even

> get (and keep) a drop of water down, literally. I was taken to the

> emergency room, and during my hopsital stay of about a week, I was

> treated for dehydration and diagnosed as having Achalasia. At that

> point I had lost about 18 pounds, due to my constant regurgitation.

> While in the hospital I was given my first dilitation and it lasted

> about a week afterwards (that is the last time I ever remember of how

> it feels not to struggle with eating), yet has stopped my

> regurgitation for the most part. From the first dilitation, I had

> about 6 or 7 more and one botox injection, none of which gave me ANY

> relief. Throughout that time period, I have also been put on many

> different medications, none of which have worked all that well for

> swallowing or pain. At that point, I decided to have the lap. Heller

> Myotomy with the fundoplication wrap in hopes that it would help give

> me the relief I want so badly, and in addtion, I hoped for the

> excrutiating chest pain I get to be relieved at least some. My

> surgery was done February 13, 2003 and took about 5 hours due to the

> scarring. My recovery was alright and I stayed in the hospital about

> 2 and a half days, after requesting to leave. It turns out that I

> have had no relief from the surgery (it actually made my swallowing

> worse afterwards-but is now back to " normal " .) At least I can keep

> food down, though, even if I have to drink large amounts of water and

> eat quite slowly. My chest pain, on the other hand is still quite

> bad. When I went for my follow-up with my surgeon, he said that from

> what he could see, my surgery went well, and he did not understand

> why I still had problems. Thus, he sent me to the Cleveland Clinic.

> On July 7th, I went there with too much hope. The first few days

> there were good, I was seeing Dr. Richter and he seemed quite nice.

> Mainly I was seeing him for my pain because my swallowing was the

> best it could be for now. He ran a ton of tests, including my 4th

> manometry (esophogeal motility)-which I have been awake and and aware

> for all but that one- and my about 1 millionth barium swallow .

> After all that, I met with him and he was nothing but a rude, cruel

> person to me. He told me that I needed to " move on with my life " and

> so on. He put me on anti-depressants because he said I have

> an " extra-sensitive esophagus " - Has anyone else been diagnosed with

> one of those? and told me that at this point in time, there was

> nothing he or I could do. I was wondering if anyone else has had a

> bad experience with him..? Anyways, though, I am sorry that this is

> so long, but I am just glad that I have someone to tell that knows

> what I'm going through, it seems as though almost everyone else I

> know is sick of hearing about my Achalasia. Does anyone else feel

> very full very quickly and like nauseus after they eat? I always

> feel as if my stomach pouches out. Also, I get severe pains that

> shoot through my neck, chest and left shoulder. Sometimes water

> helps, other times not. Very often (every day, almost all day) my

> chest aches very badly as well. What do you do for your pain? At

> this point in my Achalasia, getting the pain under control is my main

> goal. I am currently taking the prescribed anti-depressant and

> dilitizen (a heart med) for my pain. I think that I am getting at

> least some relief because my worst pains (the ones that shoot through

> my neck and so on) were taken down once every other day, and when I

> have forgotten my meds it triggers them badly into action. I have

> also been told that the muscles in my esophagus don't work AT ALL and

> that they never will again, so my achalasia will never improve

> swallowing wise? I suffer also from almost constant headaches and

> migraines, does anyone else? Well, if I have anymore questions I will

> be sure to inquire. Thank you for taking your time to read this.

>

>

>

>

>

>

>

>

[Guest guest]

I really appreciate your care, . Everyone in this group

creates a lot of strength together. I will try your remedy. When I

have had some of my dilitations and have been feeling quite badly

afterwards and have gotten spasms while still in recovery, the nurses

sometimes would give me plastic gloves filled with ice water wrapped

in a long bandage to place around my throat and on my chest. It

seemed to help some at the time, so maybe trying hot instead of cold

will help me even further. Thank you, again.