Re: Jess

[Guest guest]

Hi Jess,

I also had a major head trauma about 25 years ago, but have never put the

two problems together. I had my gall bladder out when I was 20 years old

because of gall stones. Has anyone else had to have their gall bladder

removed? There seems to be so little information and maybe when we can

all put out thoughts together we may come up with a better consensus. It

always seems disheartening when you talk with a specialist and they have so

few answers as to what causes this and how to deal with it long term.

Marilyn

[Guest guest]

Marilyn,

I also had my gall bladder removed when I was 23. I never had any major head

trauma though. I was in a minor car accident as a child and I broke the front

windsheild with my head, but I did not receive any treatment for it. Funny how

there are so many similarities between all of us, but noone can pinpoint one

thing that may cause this. I think the questionairre idea is great and I would

be very willing to participate!

Take care,

>>> mboursheski@... 02/15/01 02:48PM >>>

[Guest guest]

Hi Everyone--

Just replying to a recent line of thought: no head trauma or gall bladder

problems here. Plenty of other stuff, though. I think we might drive

ourselves right around the bend if we try to list all of the things that

achalasia could be correlated with. I'm wondering if any of us has done a

full Medline search on this disorder. I read quite a bit at the med

school library before my myotomy in 1995, but haven't done an absolutely

thorough read-through of Medline since then. It would be great if we

could find out who is doing the latest research--might help us focus our

survey.

Vicki

On Thu, 15 Feb 2001, Marilyn Boursheski wrote:

> Hi Jess,

>

> I also had a major head trauma about 25 years ago, but have never put the

> two problems together. I had my gall bladder out when I was 20 years old

> because of gall stones. Has anyone else had to have their gall bladder

> removed? There seems to be so little information and maybe when we can

> all put out thoughts together we may come up with a better consensus. It

> always seems disheartening when you talk with a specialist and they have so

> few answers as to what causes this and how to deal with it long term.

>

> Marilyn

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Marilyn, Yes, I also had my gall bladder removed four years ago because of gall stones. RE: Re: Jess Hi Jess,I also had a major head trauma about 25 years ago, but have never put thetwo problems together. I had my gall bladder out when I was 20 years oldbecause of gall stones. Has anyone else had to have their gall bladderremoved? There seems to be so little information and maybe when we canall put out thoughts together we may come up with a better consensus. Italways seems disheartening when you talk with a specialist and they have sofew answers as to what causes this and how to deal with it long term.Marilyn Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Wow, I also had a car accident when I was younger, ended upside down

on my head, big bump but nothing major, and about 12 years ago, had

my gall bladder out. I was also diagnosed with fibromyalgia about 7

years ago. This is a very interesting topic, and I would love a

survey to fill in. Janet

In achalasia@y..., " Ward " <kward@b...> wrote:

> Marilyn,

> I also had my gall bladder removed when I was 23. I never had any

major head trauma though. I was in a minor car accident as a child

and I broke the front windsheild with my head, but I did not receive

any treatment for it. Funny how there are so many similarities

between all of us, but noone can pinpoint one thing that may cause

this. I think the questionairre idea is great and I would be very

willing to participate!

> Take care,

>

>

> >>> mboursheski@k... 02/15/01 02:48PM >>>

[Guest guest]

Hi Jess,

I am going thru the same thing that you describe, I also had a dilation done

in November with a botox and it didn't seem to last for me, I was sechduled

for another dilation in February but my grandmother passed away so I had to

cancel, so now I wont be able to do it till April! So yeah we have to have

our cranky days and those around just have to give us some space. I too stand

up while eating and find that if I watch TV in the kitchen it seems to

distract me and then I do much better. I explained this to my family and they

try to help but it does get fustraiting. so hang in there! we are all in this

together!

Take Care,

Diane

[Guest guest]

You got that right. Most Dr.'s and nurses will go their whole medical career and never hear of a person with achalasia. I wish they would admit when they don't know something but hey they figure I went to school for all those years I must know something.ha,ha Most medical personal look at me funny when I say I have achalasia and then I educate me. One dr. tried to tell me one thing and I told him to research the disease and then we will talk. Somethings you just become an expert at, right?

Blessings, AnnSherry DeBord <sld102@...> wrote:

I know what you mean about not being assertive.I have always been like that too.I ended up with gallbladder surgery during my 1st episode of "A" The dr thought that was why I was throwing up.But there I was in the hosp with no gallbladder and they took my appendix still throwing up.I tried to tell them that I wasn't nauseated or have any other symptoms but they didn't listen.Then they thought I was bolimic.I told them I wasn't making myself throw up.It just won't go down .That Gi never did diagnose "A" Seems like alot or DRs don't want to admit they don't know. Sherry

[Guest guest]

Yep, when I was diagnosed w/ kindy stones my Dr. called me a couple

times a day for a few days, staying on top of what I needed to do, how

I was feeling, and what proceedures I need to do.

When I was diagnosed with Achalasia, I never heard from her. /I/ had

to call them to find out what the next step was, and they told /me/ to

call the GI to schedule (they had scheduled the urologist for me).

Just admit you don't know, lady, and learn with me! gebus

Anyway, I'm going into the GI with the mindset that if I know more

than he/she does, I'm getting a new GI. I've got to stand up for

myself on this one.

Sherry, I'm so sorry you had to go under the knife so much for now

reason. Surgery terrifies me. I would have been the most irate patient

they'd ever met if they did that to me.

As for Bulemia, I had been living in the fear that that's what it was.

I had this little gnawing feeling that I had some sort of concious

denial and (in a hypocondria sort of way) was inducing it without

knowing it. Man, that's an awful feeling. I couldn't find anything

that fit the symptoms and I've been searching for years.

btw, Finally figured out what my mistake was in searching symptoms. I

was using 'vomit' instead of 'regurgitation' and thought I had

heartburn, didn't know what a spasm was. I think I'm going to put up

a small educational website to help people who are symptom searching

come across the actual symptoms. I even remember /looking/ at

achalasia and deciding it couldn't be what I had, but that site didn't

have all of the symtpoms, just a picture. So very frustrating. Ah,

just a rant, thanx guys

> I know what you mean about not being assertive.I have always been

> like that too.I ended up with gallbladder surgery during my 1st

> episode of " A " The dr thought that was why I was throwing up.But

> there I was in the hosp with no gallbladder and they took my

appendix

> still throwing up.I tried to tell them that I wasn't nauseated or

> have any other symptoms but they didn't listen.Then they thought I

> was bolimic.I told them I wasn't making myself throw up.It just

won't

> go down .That Gi never did diagnose " A " Seems like alot or DRs don't

> want to admit they don't know. Sherry

>

>

>

>

>

>

[Guest guest]

This brings back memories of my many dilations, after each one the Dr. would

come in and speak to me and my wife, I would carry on a discussion ask

questions, and later remember none of it, on the way home I would ask my

wife what the Doc. said and she would chuckle and tell me all. Thank goodnes

my wife was always there to take notes.

wrote

> I do remember one time my GI came in

> & had a full conversation with me, but I didn't remember it at all because

> of the drugs. He told me later, " Don't you remember me telling you these

> things? " LOL.

>

> Keep us posted. Cindi

[Guest guest]

I've never had a dilatation, but after I had my endoscopy, my doctor

came in to talk to me and my family members and he told my family that

they would need to listen carefully to what he had to say because I

wouldn't remember anything...

But I did remember!

I remember him saying that I needed A LOT of medication and I would be

very sleepy all day long, which I was. I also woke up during the middle

of my endoscopy and remember that I was gagging and my doctor said he

was almost finished and then I was out again. I'm sure he said more...he

was talking about polyps he removed and some other stuff that I can't

remember anymore, but I did remember much of what he said.

Sandi

Jess

I'm sorry about your bad experience. I do remember one time my GI came

in

& had a full conversation with me, but I didn't remember it at all

because

of the drugs. He told me later, " Don't you remember me telling you

these

things? " LOL.

Keep us posted. Cindi

[Guest guest]

Thank you for your advice . I will have a hard time not

explaining my upset w/ the previous GI, but your right. Now I just

have to get through to a live person at that place... or go with the

other General Practitioner my co-worker recommended. That's

commendable that you are still with your GI that took so long to

diagnos your Achalasia. I myself would have been pretty angry, but I'm

young and rash :S Heh.

Thank you again for you advice and encouragement.

-Jess

> My GI did 4 different dilations on me and each time was surprised

they didn

> t last. At the time of the last one, we had just found my diagnosis

& he

> told me the diagnosis as I was going under. Needless to say, I went

home &

> researched & quit having dilations.

>

> I would recommend pursuing the new, experienced GI. Don't worry

about

> feelings. They are professionals dealing with sick people of all

> personalities all the time. Simply keep calling the new GI until

you get

> treatment. If they old one calls, just tell them, very

professionally, " I

> have found it necessary to be treated by a physician experienced

with A

> because it is a very rare disorder. " Old GI will get over it and

> statistically will never see another A patient in his/her lifetime

anyway.

> Don't bring up the past issue with the old GI to the new one, just

state

> that you needed a Dr. who has treated this disorder.

>

> I love my GI and continue treatment with him, but he WILL NOT do

another

> dilation on me because he has never treated A before. I go to him

because I

> have extensive food allergies and to help me with my diet in regards

to all

> of these health issues. If I need a post-op dilation, I'll go back

to

> Hershey Med.

>

> Keep us posted! Cindi

[Guest guest]

That sounds great. Thank you for the link and the instructions. I will

certainly try that.

Thanx so much!

-Jess

> Hi Jess

>

>

>

> You may have seen me post this before, but I'll give it a shot with

you

> too. I swear this is what got things moving for me. Check out

> www.ctsnet.org <http://www.ctsnet.org/> . Click on surgeons on the

> left hand site, and then Search for a surgeon by US state. Once you

get

> your state, scroll through the list of surgeons. Any that are in an

> area you are willing to travel to, check out their information. If

you

> get really lucky, it might even specify that they deal with

achalasia.

> Note that NOT all who do specify it. Choose a few and email them.

>

>

>

> Send him/her a quick email asking if they perform the lap heller

> myotomy. If they do not, who would they recommend in that area.

I've

> had good luck with a few people I've helped this way. Surprisingly

a

> bunch will probably reply. :-) If you get a bunch of

reccommendations

> for the same surgeon, you're probably in a great place. Then email

> him/her.

>

>

>

> If you'd like a hand, let me know. I'm also on and msn

messenger

> on and off, depending on work. *what I'm really supposed to be

doing

> :-)* heheh shhhh

>

>

>

> Take care,

>

>

>

>

>

>

>

> Searching for a ne - How?

>

>

>

>

> So I checked our database. The only local post is the one /I/ made,

> not to see my old GI.

> I glanced at our files and didn't see any thing that relates.

> And I've googled 'Sacrmaento Achalasio Surgeon' to no effect.

>

> Any suggestions on how else to go about locating a surgeon. I, of

> course, want somone I know has experience. I can only hope the GI

> recommends someone like that but I haven't had the best luck with

> referrals in that respect, they seem to be random.

>

> -Jess

>

>

>

>

>

>

>

>

>

[Guest guest]

I second the surgery verses dilation having had a successful surgery.

Of course I have also since had a dilation and periodically take 5mg of

Nefedepine (2-4 time per month) for really difficult " swallowing "

episodes. They are my magic yellow pills. If only they made dissolve

under the tonge ones rather that the liquid filled capsules I have to

pierce and drip under my tonge. But it works quickly for me.

I guess I'm saying I am sooooo much better off having had the surgery

than I was 3 years ago.

Hang in there and feel free to rant away in here. This is certainly the

place where people listen and support you in whatever it is you need to

say regarding your achalasia issues and how they are affecting you and

your life.

Beverly

====

Cindi Wilmot wrote:

> I have to concur with Sandy in So. Cal on this one....if a surgeon is

> experienced at wrap, let him wrap; if not, don't. And it is always a

> good idea to get another opinion if you aren't comfortable with the

> surgeon you are dealing with.

>

> As for dilate or surgery? My vote is surgery, having had a successful

> myotomy. Cindi

>

>

>

>

>

[Guest guest]

I agree, People mag, Architectural Digest, and Country Music Weekly.. my fav's... forget the book... something you can pick up and put down and fall asleep on.

Carolyn.. mom of Cameron! Brent & Bleasdale <abdale@...> wrote:

Jess wrote: Message: 10

Date: Fri, 27 May 2005 04:39:17 -0000

From: "Jess" <jade_tessa@...>

Subject: Myotomy scheduled for June 15th

Well, it's my turn!

Hi Jess!!

I’m soooo extremely happy for you! I remember the day when I received my surgery date! I was in compete shock. It was FINALLY happening! You have absolutely done your homework and know what you want. (sounds like you’re booking a holiday or something, although, it kinda is! ) You seem to be very comfortable with your surgeon, and as long as he can do what he/you thinks is best, and he has experience, then GO FOR IT!!! June 15 is just around the corner! Feel free to ask questions, like you always do J They sure helped me to feel better!

As for reading material, I found magazines much more useful than my book. I just couldn’t get into my book enough between nurses, visits, falling asleep, etc. A magazine is easy to pick up and put down. I reccommend People J As for the drainage tube – No, I did not have one, and I also had the lap with wrap done.

Take care, and enjoy packing for your holiday!!!!

Love and hugs,

Wooleeacre Productions

Custom Screenprinting

on a small scale!

[Guest guest]

Lottie,

I see from the previous posts that you have some knee surgery coming up. I

believe it is today and yet you took the time to post something to encourange my

daughter. Thank you. I pray for God to guide the doctors hands and for your

speedy recovery. Thank you very much for your support and inspiration.

>

> Welcome Jess to our group. We have been anxiously awaiting news of your

recovery and ability to return home. We hope you will learn as many positive

things as you can about CML, it's not the worst thing in the world to happen to

you, although I admit when you learn you have it, it is a shock. You can go on

to live a fairly normal life.

>

> Teenagers especially respond to Gleevec and other similiar drugs. After you

make a few changes in your life, you will find that you are able to live as

normally as your peers, with a few exceptions. I'm sure your medical team has

given you instructions as to what you can and cannot do while taking Gleevec,

but if you have any questions, any number of the membership will come to the

forefront with answers for you. I was diagnosed when I was 67 and I am now 80,

so take heart, you have a long life ahead of you. Make the most of it and

enjoy it to the fullest.

> Blessings and best wishes,

> Lottie

>

>

[Guest guest]

Aww thanks so much. It is a big shock, its just hearing the word Leukemia, but

for the most part I'm doing pretty well. I hope your surgery goes well! I'm sure

you'll let us all know. God bless

Jess

>

> Welcome Jess to our group. We have been anxiously awaiting news of your

recovery and ability to return home. We hope you will learn as many positive

things as you can about CML, it's not the worst thing in the world to happen to

you, although I admit when you learn you have it, it is a shock. You can go on

to live a fairly normal life.

>

> Teenagers especially respond to Gleevec and other similiar drugs. After you

make a few changes in your life, you will find that you are able to live as

normally as your peers, with a few exceptions. I'm sure your medical team has

given you instructions as to what you can and cannot do while taking Gleevec,

but if you have any questions, any number of the membership will come to the

forefront with answers for you. I was diagnosed when I was 67 and I am now 80,

so take heart, you have a long life ahead of you. Make the most of it and

enjoy it to the fullest.

> Blessings and best wishes,

> Lottie

>

>