Re: Please read- Here is what 's DR said-I need your input

August 8, 2006

Dear Tonia,

Take a few deep breaths, don't panic. Send us all the message, it sounds like he took a lot of time and said a lot. He said I believe... find another doctor and he probably needs a barium swallow, maybe a scope down his esophagus... he didn't really mention a manometry, but I read fast.

You need to find another doctor. Remind us where you are and chances are we can tell you 2 or 3 choices. Pick the best and follow that doctor's choice.

He gave you a very thorough response actually. He said what we have all been telling you. Then he mentioned the worst case scenarios, removal or another myotomy. If you DON'T get more tests from a competent doctor and treat the blockage you are looking at more trouble down the road. He is kicking you in the tooshie to get going.

I'm going to really put it to you... needs to follow you and your husband's decision. I haven't conquered teenagers yet, but I assume they don't ever think things will happen to them. You are the bosses. He doesn't have the maturity to make his own medical decisions.

Ask your doctor who he recommends then remind us where you live. Do not delay. will have to work school around his medical schedule.

You have to be strong and conquer this. It is a medical problem, but again, it isn't cancer or other dreadful things. You have to take control of this as his mother.

HE NEEDS TO TAKE TESTS AND BE SEEN BY A DOCTOR HIGHLY REGARDED IN ACHALASIA. Yes, people I'm shouting. Anyone want to argue w/ me about it?

Sandy in So Cal...... Tonia, skip all the green above just read the red part if you like.

>> I tried to contact his DR today to only find out he has moved to > Childrens Hospital in Pittsburgh . I got his e mail address and sent > him a email concerning the problem has had and my > concerns.Heres what his response was:> > "Your description sounds like ' esophageal mobility is worse > than it was before and that he seems to be dealing with what sounds > like an obstruction(perhaps recurrent achalasia). This can happen in > the face of the previuos myotomy and with his poor mobility,it would > take very little obstruction to cause severe symptoms. I would start > with a repeat esophagram and this may need to be done with liquid as > well as solid barrium meal.If the esophagram demonstrates a > narrowing or obstruction at the level of the esophago-gastric > junction(junction of the esophagus with the stomach)..... may > benifit from dialation or repeat myotomy.On the other hand, if the > esophagus is still wide open,just no mobility,he may be moving > toward esophageal replacement as his symptoms worsen.> > I would be concerned that further stretching(esophageal dilation) > would lead to worsening symptoms as you describe. If the esophagram > demonstrates worsening dialtion,I would recomend a repeat > esophagoscopy for biopsies looking for dysplasia(changes in > esophageal mucosa)."> > That was the main part of his email to me~> > > Someone please tell me what all this means.I am over whelmed right > now I cant even try to look this up on the web!!> > What I am understanding is that he could need A esophageal > replacement or another myotomy OMG.... is this what he is saying can > happen???? > > Please anyone give me some insight! Thank you so much,Tonia>

August 8, 2006

Tonia, I'm so sorry that is having problems. That was a

frightening email from your doctor, and I'm sure you are

realizing that you need to have him seen by a real expert.

He's so young, and having problems again so soon after a

myotomy... I think he really should be seen by a specialist who

has lots of experience in achalasia.

Manometry isn't so bad if it's done by someone who knows what

they're doing. My son Mark will talk to on the phone if

that would help (he's had three manometries, and another coming

up in October).

I would have taken my son anywhere in the world if I thought he

could get better care. This is going to affect the rest of his

life. You can't get an 80-year warranty on his esophagus but

it's important to try to get the best possible care. Even if

your insurance won't cover it, you can apply for financial aid

from the hospital.

Where in Virginia are you located? Is it possible for you to

take to Cleveland Clinic or Vanderbilt (Nashville, TN)?

Both places have very experienced surgeons and GI docs who would

do the right tests, and do them right, to make absolutely sure of

what he needs.

Bill s is the chief of laparoendoscopic surgery at

Vanderbilt:

bill.richards@...

Phone: (615) 322-0259

Rice is the head of general thoracic surgery at Cleveland

Clinic:

ricet@...

Phone: (216) 444-1921

Please email or call them. You could forward your other doctor's

email so they have some background information, and I'm sure

either or both would be glad to talk with you and discuss 's

care (and explain it in plain English).

In fact, when I first spoke with Dr. Rice, he asked me to put

Mark on the line and they had a nice little talk. I haven't

spoken with Dr. s but he also has an excellent reputation.

All will be well.

in Lancaster, PA

(Mom of Mark, age 15, doing well 3 weeks after myotomy by Dr.

Rice)

August 8, 2006

Sandy-The weird thing is I already have been back and had the

barrium done several times since surgery, They also even went down

with the scope to see if there was a blockage earlier on after

surgery and check to see if it was too tight.All that came back

fine.Shouldnt they have seen something then if this was what it was?

The Dr he has referred ( i already checked him out today-thanks to

yall telling me to ask this last time)and he has only seen about 20

patients with achalasia and no children.That doesnt set well with me

of course.

I understand what your saying about not making his own

decisions and that we are the boss.I just want him to be able to

make decisions about his own body as well.After all, it is his body

and he is the one with the problems to live with.But when it comeS

to a situtaion getting worse and all the problems later down the

road then thats when its MOM and DADS DECISION.I just didnt want to

push him to do things that may not of been neccesary because of

something bothering me(the burping and such) but this a diffrent

situation all together now. This has me really scared,and I have not

even mentioned this email to .I am going to wait until this

other DR gets us in for a barrium and take it from there.With school

starting back soon I dont wont to get it started off with him

worrying and we dont know what the deal is yet.Its like he is just

getting back to normal with school,spending the night with

friends,comfortable eating around people,gaining his weight back,

and such and now this again.He is gonna freak out!!God I wish it was

me instead of him!!!

Thank you for the quick reply and post to me! I appreciate it. I

will post and let you know as soon as i find something out.Thank you

again,Tonia( were in Roanoke Virginia)

> >

> > I tried to contact his DR today to only find out he has moved to

> > Childrens Hospital in Pittsburgh . I got his e mail address and

sent

> > him a email concerning the problem has had and my

> > concerns.Heres what his response was:

> >

> > " Your description sounds like ' esophageal mobility is worse

> > than it was before and that he seems to be dealing with what

sounds

> > like an obstruction(perhaps recurrent achalasia). This can

happen in

> > the face of the previuos myotomy and with his poor mobility,it

would

> > take very little obstruction to cause severe symptoms. I would

start

> > with a repeat esophagram and this may need to be done with

liquid as

> > well as solid barrium meal.If the esophagram demonstrates a

> > narrowing or obstruction at the level of the esophago-gastric

> > junction(junction of the esophagus with the stomach).....

may

> > benifit from dialation or repeat myotomy.On the other hand, if

the

> > esophagus is still wide open,just no mobility,he may be moving

> > toward esophageal replacement as his symptoms worsen.

> >

> > I would be concerned that further stretching(esophageal dilation)

> > would lead to worsening symptoms as you describe. If the

esophagram

> > demonstrates worsening dialtion,I would recomend a repeat

> > esophagoscopy for biopsies looking for dysplasia(changes in

> > esophageal mucosa). "

> >

> > That was the main part of his email to me~

> >

> > Someone please tell me what all this means.I am over whelmed

right

> > now I cant even try to look this up on the web!!

> >

> > What I am understanding is that he could need A esophageal

> > replacement or another myotomy OMG.... is this what he is saying

can

> > happen????

> >

> > Please anyone give me some insight! Thank you so much,Tonia

> >

>

August 9, 2006

Dear Tonia, I think Sandy has said it all in her usual no-bs way. In fact, it is what I wanted to say, except for the tooshie bit. I am not sure if I have one of those, being a sweet English rose. lol. Try not to cross the bridges before you come to them, It sounds as if you have been given a list of all eventualities. It is more than likely that the simplest procedure will end up being the one that is chosen, so calm down love and be positive and hope for the best. Keep your fingers crossed and your hopes up, and if you can still move at that point, explain to that the most likely outcome will be a realtively simple one. Good luck from Ann xxtoomuchclutter <sandycarroll@...> wrote: Dear Tonia, Take a few deep breaths, don't panic. Send us all the message, it sounds like he took a lot of time and said a lot. He said I believe... find another doctor and he probably needs a barium swallow, maybe a scope down his esophagus... he didn't really mention a manometry, but I read

fast. You need to find another doctor. Remind us where you are and chances are we can tell you 2 or 3 choices. Pick the best and follow that doctor's choice. He gave you a very thorough response actually. He said what we have all been telling you. Then he mentioned the worst case scenarios, removal or another myotomy. If you DON'T get more tests from a competent doctor and treat the blockage you are looking at more trouble down the road. He is kicking you in the tooshie to get going. I'm going to really put it to you... needs to follow you and your husband's decision. I haven't conquered teenagers yet, but I assume they don't ever think things will happen to them. You are the bosses. He doesn't have the maturity to make his own medical

decisions. Ask your doctor who he recommends then remind us where you live. Do not delay. will have to work school around his medical schedule. You have to be strong and conquer this. It is a medical problem, but again, it isn't cancer or other dreadful things. You have to take control of this as his mother. HE NEEDS TO TAKE TESTS AND BE SEEN BY A DOCTOR HIGHLY REGARDED IN ACHALASIA. Yes, people I'm shouting. Anyone want to argue w/ me about it? Sandy in So Cal...... Tonia, skip all the green above just read the red part if you like. >> I tried to contact his DR today to only find out he has moved to > Childrens Hospital in Pittsburgh . I got his e mail address and sent > him a email concerning the problem has had and my > concerns.Heres what his response was:> > "Your description sounds like ' esophageal mobility is worse > than it was before and that he seems to be dealing with what sounds > like an obstruction(perhaps recurrent achalasia). This can happen in > the face of the previuos myotomy and with his poor mobility,it would > take very little obstruction to cause severe symptoms. I would start > with a repeat esophagram and this may need to be done with liquid as > well as solid barrium meal.If the esophagram demonstrates a > narrowing or obstruction at the level of the esophago-gastric >

junction(junction of the esophagus with the stomach)..... may > benifit from dialation or repeat myotomy.On the other hand, if the > esophagus is still wide open,just no mobility,he may be moving > toward esophageal replacement as his symptoms worsen.> > I would be concerned that further stretching(esophageal dilation) > would lead to worsening symptoms as you describe. If the esophagram > demonstrates worsening dialtion,I would recomend a repeat > esophagoscopy for biopsies looking for dysplasia(changes in > esophageal mucosa)."> > That was the main part of his email to me~> > > Someone please tell me what all this means.I am over whelmed right > now I cant even try to look this up on the web!!> > What I am understanding is that he could need A esophageal > replacement or another myotomy OMG.... is this what he is saying can >

happen???? > > Please anyone give me some insight! Thank you so much,Tonia>

Try the all-new . "The New Version is radically easier to use" – The Wall Street Journal

August 9, 2006

Well said, Ann, this is my take on his comprehensive information as well. Most

important

message is follow-up and keep monitoring over time. Take care Tonia. Peg

> >

> > I tried to contact his DR today to only find out he has moved to

> > Childrens Hospital in Pittsburgh . I got his e mail address and sent

> > him a email concerning the problem has had and my

> > concerns.Heres what his response was:

> >

> > " Your description sounds like ' esophageal mobility is worse

> > than it was before and that he seems to be dealing with what sounds

> > like an obstruction(perhaps recurrent achalasia). This can happen in

> > the face of the previuos myotomy and with his poor mobility,it would

> > take very little obstruction to cause severe symptoms. I would start

> > with a repeat esophagram and this may need to be done with liquid as

> > well as solid barrium meal.If the esophagram demonstrates a

> > narrowing or obstruction at the level of the esophago-gastric

> > junction(junction of the esophagus with the stomach)..... may

> > benifit from dialation or repeat myotomy.On the other hand, if the

> > esophagus is still wide open,just no mobility,he may be moving

> > toward esophageal replacement as his symptoms worsen.

> >

> > I would be concerned that further stretching(esophageal dilation)

> > would lead to worsening symptoms as you describe. If the esophagram

> > demonstrates worsening dialtion,I would recomend a repeat

> > esophagoscopy for biopsies looking for dysplasia(changes in

> > esophageal mucosa). "

> >

> > That was the main part of his email to me~

> >

> > Someone please tell me what all this means.I am over whelmed right

> > now I cant even try to look this up on the web!!

> >

> > What I am understanding is that he could need A esophageal

> > replacement or another myotomy OMG.... is this what he is saying can

> > happen????

> >

> > Please anyone give me some insight! Thank you so much,Tonia

> >

>

> ---------------------------------

> Try the all-new . " The New Version is radically easier to use " –

The Wall

Street Journal

>

August 9, 2006

Dear Tonia,

Time passes quickly for me so forgive me if I've remembered incorrectly. I thought the bariums were a little slow and a while ago. Our conditions can deteriorate quickly.

You may not have asked and they may not have volunteered that although it was OK, it may have been slow, or continued to show narrowing. It could also be that it was OK in their opinion... but it seems to me he had problems somewhat right after surgery, so maybe their opinion was "off" slightly.

That is why it is helpful to get copies of the reports from every test, so you can go back and read when you learn more. It is a pain and the office people may roll their eyes. But it helps you to read back at your leisure and refer to actual numbers instead of just OK or unusual.

I say this and yet I only have one or two test results... do as I say and not what I do.

Tonia, somehow I believe achalasia is a blessing in a weird way. It may prepare us for how to deal with doctors in even more dreadful situations, it forces us to open up and we meet some strange and wonderful people. (Maybe strange isn't the right word, be we are all strange on some days.)

Just one step at a time. There is probably some kind of silver lining here somewhere for your family.

Sandy in So Cal.... daughter is nagging me to take her to her summer camp and it is TIME...

> > >> > > I tried to contact his DR today to only find out he has moved to> > > Childrens Hospital in Pittsburgh . I got his e mail address and > sent> > > him a email concerning the problem has had and my> > > concerns.Heres what his response was:> > >> > > "Your description sounds like ' esophageal mobility is worse> > > than it was before and that he seems to be dealing with what > sounds> > > like an obstruction(perhaps recurrent achalasia). This can > happen in> > > the face of the previuos myotomy and with his poor mobility,it > would> > > take very little obstruction to cause severe symptoms. I would > start> > > with a repeat esophagram and this may need to be done with > liquid as> > > well as solid barrium meal.If the esophagram demonstrates a> > > narrowing or obstruction at the level of the esophago-gastric> > > junction(junction of the esophagus with the stomach)..... > may> > > benifit from dialation or repeat myotomy.On the other hand, if > the> > > esophagus is still wide open,just no mobility,he may be moving> > > toward esophageal replacement as his symptoms worsen.> > >> > > I would be concerned that further stretching(esophageal dilation)> > > would lead to worsening symptoms as you describe. If the > esophagram> > > demonstrates worsening dialtion,I would recomend a repeat> > > esophagoscopy for biopsies looking for dysplasia(changes in> > > esophageal mucosa)."> > >> > > That was the main part of his email to me~> > >> > >> > > Someone please tell me what all this means.I am over whelmed > right> > > now I cant even try to look this up on the web!!> > >> > > What I am understanding is that he could need A esophageal> > > replacement or another myotomy OMG.... is this what he is saying > can> > > happen????> > >> > > Please anyone give me some insight! Thank you so much,Tonia> > >> >>

August 9, 2006

toniasdogsandi wrote:

> " Your description sounds like ' esophageal mobility is worse

> than it was before and that he seems to be dealing with what sounds

> like an obstruction (perhaps recurrent achalasia).

My impression of what you have said here is that continues to have

problems and does not get better. Not that it is worse. Is he worse?

> This can happen in

> the face of the previuos myotomy and with his poor mobility,it would

> take very little obstruction to cause severe symptoms.

Problems can develop after a myotomy, but whether there is a new problem

or not, or motility issues can be a problem and there may be no fix for

it. More on this below.

> I would start

> with a repeat esophagram and this may need to be done with liquid as

> well as solid barrium meal.

When the barium was done before, did they do a meal or just a drink? If

only a drink, the meal would be a new part to the test and may be worth

doing. Also, if you have new barium tests done see if you can get them

to let watch the esophagram display, either live or recorded. What

we feel is going on in our esophagi is not always what is. He may learn

something that will let him adjust his technique for swallowing.

> .If the esophagram demonstrates a

> narrowing or obstruction at the level of the esophago-gastric

> junction(junction of the esophagus with the stomach)..... may

> benifit from dialation or repeat myotomy.

The key word here is " may. " It may also be that things are as good as

they get. More on this below.

> On the other hand, if the

> esophagus is still wide open,just no mobility,he may be moving

> toward esophageal replacement as his symptoms worsen.

This is a big jump in the scope of possibilities. " May " in this case is

probably far down the road. Any of us " may " need this done at some

point. The statistics say only a few of us will have it done. At that

time, the question that would need to be answered is, would he be

happier and healthier enough to be worth the risks and trouble.

> I would be concerned that further stretching(esophageal dilation)

> would lead to worsening symptoms as you describe.

But, are his symptoms worse?

> If the esophagram demonstrates worsening dialtion,I would recomend a

> repeat esophagoscopy for biopsies looking for dysplasia(changes in

> esophageal mucosa). "

I am not sure what he is thinking here. It kind of seems like he has run

two thoughts together. If is getting worse it may be that he has

secondary achalasia and he wants to rule that out. Also, we have a small

increased risk of esophageal cancer, but this seems very early for a

young patient to be at much risk of that from achalasia.

We are all different. Some of us after a myotomy will be like we never

had achalasia, at least for some time. Others, no matter what they have

done will always have problems swallowing. Those with good motility and

those with no motility are most likely to do best. Those with

dysfunctional motility may not benefit as well. There is a form a

achalasia called vigorous achalasia. People with vigorous achalasia tend

to have more problems after a myotomy than those with non-vigorous

achalasia. There are other motility disorders besides achalasia. In DES

the LES is not a problem so a Heller myotomy is not very likely to help,

but they still have problems swallowing because of the dysfunctional

motility. About vigorous achalasia as a predictor of problems, see:

American Journal of Roentgenology.

http://www.ajronline.org/cgi/content/full/186/4_Supplement/A38

.... Conclusion: Patients with achalasia have significant improvement in

symptoms following Heller myotomy, even those with " megaesophagus. "

However, patients with preoperative vigorous achalasia are more likely

to experience persistent regurgitation and chest pressure despite

improvement in dysphagia. ...

DES reminds me of something else. Normally, after a person takes a first

swallow and peristalsis begins, if you take another swallow, or more

swallows, right away (within something like five seconds of each other)

only the last swallow should produce a complete wave. The earlier waves

are inhibited by the later waves. This is called " deglutitive

inhibition. " In motility disorders like achalasia and DES deglutitive

inhibition does not work correctly. In achalasia it may mean no

peristalsis but sometimes, and in DES, it means too many contractions

and simultaneous contractions. Exactly what happens may depend on the

timing between swallows.

could try adjusting the timing of his swallows to see if it helps.

Swallows of, food, water, air or swallowing with nothing, all count as

swallows.

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