Achalasia during Pregnancy - Need advice!

[Guest guest]

Friends,

I'm in my second trimester and have undergone two very short-term-

successful dilitations in the past year and a half. I crave that

relief now,as I am having trouble eating and drinking both. For the

past two days, the A has come back forcefully, and I am having spasms

that I am not sure if they are spasms or some sort of reflux. I can't

get them to stop.

Has anyone here undergone any treatment for A while pregnant? I'm

specifically wondering about risks to the baby, of course, as well as

myself. I tend to run the other way from traditional medicine in a

lot of ways, especially during pregnancy - but the old A has forced me

to consider immediately the choices for NOW. I do, after all, have a

little unborn baby to nourish as well as myself. I am feeling

miserable! Any help/advice appreciated....!

[Guest guest]

, I understand your concerns! You don't want to subject your unborn child to anything, and yet you HAVE to be able to properly nourish said unborn child!I didn't undergo treatments while pregnant, so I can't offer any advice there. However I would like to ask who your doctor is that has performed your last two dilations, and if they did the exact same dilation (size of dilator, period of time and number of times dilated) both times?

My main recommendation would be to NOT have Botox -- and I would hope that no doctor would willingly accept you as a Botox patient while pregnant. (<shudder> at the thought of injecting a neurotoxin into a pregnant woman)

If it were me, I would also seek out one of the Top Names in Achalasia at this point (or, if you already have done so, I would ask him to seek assistance from his colleagues). Depending on where you are in the country, we can probably recommend someone relatively close to you.

From my personal experience, I would be inclined to try another dilation with a bigger dilator and a more experienced doctor. I say this because my first dilation produced minimal results, but my second dilation (with a larger dilator and a longer period of time involved) was MUCH MUCH MUCH more successful. A more experienced doctor would be preferred b/c experience tends to go hand-in-hand with better success and less chance of complications.

If you do go this route, I would be sure to discuss it in depth with your OB/midwife well in advance, and to have strict written instructions as to which drugs can/cannot be used. (Versed, for example, is often used for sedation in endoscopy.... however it is not used on pregnant women, so you will need a list of acceptable alternatives.) I would also insist that a Health Advocate (spouse or trusted friend who can handle the sight they will be seeing) be allowed to observe your procedure and recovery period, to ensure that you are not mistakenly given a drug that is contraindicated in pregnancy.

If for whatever reason you are not willing or able to do another dilation, surgery CAN be performed in pregnancy. (I had a friend who had her gall bladder removed while 7 mos pregnant, and went on to deliver a healthy baby and one more a few years later.) Once again, collaboration between surgeon and OB is a necessity, and again a Health Advocate is a good idea. I would also expect to be counselled by a registered dietician about maintaining adequate intake during the clear liquid, liquid, and soft-foods diets that surgery would require.

In the meantime, have you tried the various "home remedies" for the spasm pains? Gulping warm drinks, gulping cold drinks, sipping warm drinks, sipping cold drinks, eating hard cookies/crackers, eating ice cream/popsicles, eating warm oatmeal or creamy soups (things that "stick")? And if you are at least able to get liquids down, remember that things like Ensure, Boost, and Slim-Fast come in a variety of flavors and provide many essential vitamins and minerals in addition to calories. (I think Slim-Fast even has some fiber in it.) There are also chewable calcium tablets (or Tums) and chewable or liquid (often nasty-tasting) vitamins -- ask your OB for recommendations and dosages.

We are here for you!Debbi in Michigan

Friends, I'm in my second trimester and have undergone two very short-term-successful dilitations in the past year and a half. I crave that relief now,as I am having trouble eating and drinking both. For the past two days, the A has come back forcefully, and I am having spasms that I am not sure if they are spasms or some sort of reflux. I can't get them to stop.Has anyone here undergone any treatment for A while pregnant? I'm specifically wondering about risks to the baby, of course, as well as myself. I tend to run the other way from traditional medicine in a lot of ways, especially during pregnancy - but the old A has forced me to consider immediately the choices for NOW. I do, after all, have a little unborn baby to nourish as well as myself. I am feeling miserable! Any help/advice appreciated....!

[Guest guest]

Thanks for your response and advice!

I know the first dilatation was done with a relatively small

balloon - one used simply to perform the scope. The second was

somewhat bigger (i don't remember the number - maybe 14 - is that

possible?. They were performed about six months apart and this last

one relieved me somewhat for about six months.

My midwife is aware of my achalasia and has never treated another

sufferer. Needless to say she is intrigued and involved.

No, I would NEVER go for Botox at this point - probably just a

dilatation. I don;t feel capable of handling the surgical

procedure, and the stress it would bring me, right now. I may opt

for that postpartum.

I haven't tried the oatmeal idea. Milk used to do the trick

instantly, and now it doesn't work - it's like the A caught on and

said, " ah-HAH, I am not falling for the milk trick anymore,

BWAHhahaha! "

I live in Surry, Virginia, a very rural part of the state midway

between burg and Richmond. My GI, who I am not at all

enamored with, is Dr. Valenzuela. I'm open to suggestions for other

docs in the Richmond area if anyone has one! My cousin is a GI in

SC, and he has recommended that I just skip the dilatation and go

for surgery, but that I suffer through the pregnancy first. Ack, I

can't - it has gotten so much worse since he and I last talked.

I'll reread your post now and see if I can start researching into

seom alternate providers.....many thanks, really!!

>

> , I understand your concerns! You don't want to subject your

unborn child to anything, and yet you HAVE to be able to properly

nourish said unborn child!

>

> I didn't undergo treatments while pregnant, so I can't offer any

advice there. However I would like to ask who your doctor is that

has performed your last two dilations, and if they did the exact

same dilation (size of dilator, period of time and number of times

dilated) both times?

>

> My main recommendation would be to NOT have Botox -- and I would

hope that no doctor would willingly accept you as a Botox patient

while pregnant. (<shudder> at the thought of injecting a neurotoxin

into a pregnant woman)

>

> If it were me, I would also seek out one of the Top Names in

Achalasia at this point (or, if you already have done so, I would

ask him to seek assistance from his colleagues). Depending on where

you are in the country, we can probably recommend someone relatively

close to you.

>

> From my personal experience, I would be inclined to try another

dilation with a bigger dilator and a more experienced doctor. I say

this because my first dilation produced minimal results, but my

second dilation (with a larger dilator and a longer period of time

involved) was MUCH MUCH MUCH more successful. A more experienced

doctor would be preferred b/c experience tends to go hand-in-hand

with better success and less chance of complications.

>

> If you do go this route, I would be sure to discuss it in depth

with your OB/midwife well in advance, and to have strict written

instructions as to which drugs can/cannot be used. (Versed, for

example, is often used for sedation in endoscopy.... however it is

not used on pregnant women, so you will need a list of acceptable

alternatives.) I would also insist that a Health Advocate (spouse

or trusted friend who can handle the sight they will be seeing) be

allowed to observe your procedure and recovery period, to ensure

that you are not mistakenly given a drug that is contraindicated in

pregnancy.

>

> If for whatever reason you are not willing or able to do another

dilation, surgery CAN be performed in pregnancy. (I had a friend

who had her gall bladder removed while 7 mos pregnant, and went on

to deliver a healthy baby and one more a few years later.) Once

again, collaboration between surgeon and OB is a necessity, and

again a Health Advocate is a good idea. I would also expect to be

counselled by a registered dietician about maintaining adequate

intake during the clear liquid, liquid, and soft-foods diets that

surgery would require.

>

> In the meantime, have you tried the various " home remedies " for

the spasm pains? Gulping warm drinks, gulping cold drinks, sipping

warm drinks, sipping cold drinks, eating hard cookies/crackers,

eating ice cream/popsicles, eating warm oatmeal or creamy soups

(things that " stick " )? And if you are at least able to get liquids

down, remember that things like Ensure, Boost, and Slim-Fast come in

a variety of flavors and provide many essential vitamins and

minerals in addition to calories. (I think Slim-Fast even has some

fiber in it.) There are also chewable calcium tablets (or Tums) and

chewable or liquid (often nasty-tasting) vitamins -- ask your OB for

recommendations and dosages.

>

> We are here for you!

>

> Debbi in Michigan

>

>

> Friends,

>

> I'm in my second trimester and have undergone two very short-

term-

> successful dilitations in the past year and a half. I crave

that

> relief now,as I am having trouble eating and drinking both. For

the

> past two days, the A has come back forcefully, and I am having

spasms

> that I am not sure if they are spasms or some sort of reflux. I

can't

> get them to stop.

>

> Has anyone here undergone any treatment for A while pregnant?

I'm

> specifically wondering about risks to the baby, of course, as

well as

> myself. I tend to run the other way from traditional medicine

in a

> lot of ways, especially during pregnancy - but the old A has

forced me

> to consider immediately the choices for NOW. I do, after all,

have a

> little unborn baby to nourish as well as myself. I am feeling

> miserable! Any help/advice appreciated....!

>

>

>

[Guest guest]

Thanks for your response and advice!

No problem -- that's what we're here for! ;o)

I know the first dilatation was done with a relatively small balloon - one used simply to perform the scope.

The first dilation may not have been a "dilation" at all. There is no "balloon" that is used simply to perform a scope... the GI may have simply "rooted around in there a bit" with the endoscope itself to try to loosen things up, or he may have used a bougie dilator. But it doesn't sound like he did a true balloon dilation just from what you've stated.

The second was somewhat bigger (i don't remember the number - maybe 14 - is that possible?. They were performed about six months apart and this last one relieved me somewhat for about six months.

Again, it's unknown whether he did a bougie dilation or a balloon dilation -- you should be able to call and ask what type he used and they should be able to find it in your files. Most GIs who do dilations on achalasia patients use a Rigiflex dilator, which comes in three sizes: 3.0cm, 3.5cm, and 4.0cm. If the dilator he used on you was a size 14, it was probably a Savary-Gilliard dilator -- these are 14mm (or only 1.4cm compared to 3-4cm like the Rigiflex dilators). Savary-Gilliard dilators are used to treat esophageal strictures, not achalasia.

Here's a very basic explanation of dilators: http://www.gicare.com/pated/epdgs25.htm

At this point (in my own personal opinion) you need to get a complete copy of your medical records with this doctor and find out exactly what he has and has not done to you so far. And if you had some small bit of success with a 14mm Savary-Gilliard dilator, it wouldn't be a stretch to think that you may have a moderate amount of success with a 3, 3.5, or 4cm Rigiflex dilator, particularly when the Rigiflex is being administered by a competent, experienced GI specialist.My midwife is aware of my achalasia and has never treated another sufferer. Needless to say she is intrigued and involved.

Not at all surprising, between the relatively few of us who are female and of childbearing age and the relatively small number of MWs there are! I was also a first for my MW, and she was willing to work with me as needed (fortunately I didn't have any real problems during pregnancy). She even noted right away that the prenatal vitamins she prescribed were "horse pills" and she changed my prescription to a different brand -- a single dose was two pills, but each pill was considerably smaller and therefore easier for me to get down.

Does you MW practice alongside an OB? (My MW's practice consisted of seven OBs and four MWs all in the same clinic.) You'll likely need to get an OB involved if you do end up going the dilation or surgery route. Even if your MW is experienced and capable of running the drug contraindications, etc., most GIs or surgeons won't be willing to take a sign-off from a "mere midwife" (gritting teeth here -- supercilious doctors are a pet peeve of mine).

No, I would NEVER go for Botox at this point - probably just a dilatation. I don;t feel capable of handling the surgical procedure, and the stress it would bring me, right now. I may opt for that postpartum.

Particularly given the possibility that your past "dilations" weren't truly pneumatic dilations for treating achalasia, I'd say that dilation would be a good option in your situation.

I haven't tried the oatmeal idea. Milk used to do the trick instantly, and now it doesn't work - it's like the A caught on and said, "ah-HAH, I am not falling for the milk trick anymore, BWAHhahaha!"

You wouldn't be the first to find a trick no longer working! In my case, the warmth seemed to "soothe the clenched muscle" similar to using a heating pad on a back spasm. I was always so surprised to hear people say that cold milk, popsicles, etc., worked for them b/c cold was likely to piss off my esophagus, not calm it down! Same with carbonation -- if I tried to eat food with a sodapop for a drink, I'd be spewing like Vesuvius! And yet there are people here who USE carbonation to get the food to go DOWN instead of up! We are all very similar in many ways due to our achalasia, but our bodies are still unique in how they react to things. Good luck with the different methods, and I hope you can find something that helps, b/c the chest pains can be HORRID!

I live in Surry, Virginia, a very rural part of the state midway between burg and Richmond. My GI, who I am not at all enamored with, is Dr. Valenzuela. I'm open to suggestions for other docs in the Richmond area if anyone has one! My cousin is a GI in SC, and he has recommended that I just skip the dilatation and go for surgery, but that I suffer through the pregnancy first. Ack, I can't - it has gotten so much worse since he and I last talked.

This disease is rare enough that the average GI isn't going to see a case in his entire lifetime, and the number one factor in predicting a successful outcome, whether you go w/ a dilation or surgery, is the experience level of the physician in performing this particular technique. A wonderful GI who treats ulcers and GERD may be a wonderful GI, but not if he doesn't have any achalasia experience. Same with a thoracic surgeon -- they may have done thousands of successful surgeries, but it's the specific number of Hellery Myotomies performed that is important to us.

In your situation (esp. being pregnant) I would probably make the drive to Philadelphia to see Dr. Richter at Temple University. HIGHLY qualified and experienced hands with a Rigiflex dilator, and he has seen some of the most severe cases of achalasia imaginable. I live in SW Michigan and I drive to Cleveland, Ohio (250+ miles) for treatment after being "practiced upon" by a self-proclaimed "expert" in Michigan for several years. We owe it to ourselves to get the best treatment from the best doctors, esp. when we have spouses and children who need us to be healthy and strong. (My own son is almost 6yo now, and my husband and I are celebrating our 7th anniversary tomorrow -- we're going to a hockey game! LOL)I'll reread your post now and see if I can start researching into seom alternate providers.....many thanks, really!!

You are absolutely welcome, ! Your best research source is probably your cousin who is a GI -- he can access lots of sources that we "non-professionals" don't have access to. (You'll learn that the "non-professionals" in this group often know a heck of a lot more about achalasia than the typical GI doctor!) If he has access to databases thru the American College of Gastroenterology, he may be able to find you some names of experienced achalasia GIs who are closer than Dr. Richter (or maybe someone around this group will pipe in with some more recommendations).

Good luck, keep us posted, and KEEP ASKING QUESTIONS!Debbi in Michigan

[Guest guest]

I never had any trouble during my pregnancies;

sorry I’m of no help…I would talk to your GI and your OB about options. They may be able to come up with a temporary

solution til your pregnancy ends.

From:

achalasia [mailto:achalasia ] On Behalf Of saundersclan2003

Sent: Saturday, November 26, 2005

5:34 PM

achalasia

Subject: Achalasia

during Pregnancy - Need advice!

Friends,

I'm in my second trimester and have undergone two

very short-term-

successful dilitations in the past year and a

half. I crave that

relief now,as I am having trouble eating and

drinking both. For the

past two days, the A has come back forcefully, and

I am having spasms

that I am not sure if they are spasms or some sort

of reflux. I can't

get them to stop.

Has anyone here undergone any treatment for A

while pregnant? I'm

specifically wondering about risks to the baby, of

course, as well as

myself. I tend to run the other way from

traditional medicine in a

lot of ways, especially during pregnancy - but the

old A has forced me

to consider immediately the choices for NOW.

I do, after all, have a

little unborn baby to nourish as well as

myself. I am feeling

miserable! Any help/advice appreciated....!

[Guest guest]

Hija ,

I was pregnant with my son in 2003 and things got worse for me too. I had

one dilation done when I was about......let me think.......almost 7 months

pregnant (full anasthesia (sp ?!?!). I remember coming out of that and

feeling my tummy to see if my baby was still there. The dilation gave some

relief (mostly for my mucus) but I still couldnt eat/drink so I had to have

a feedingtube. It wasnt fun.....but my son was very healthy when he was born

so it was all worth it. Please consider a feedingtube if all else fails.

It's not a lot of fun.......but I did what was best for the baby and myself.

Please keep us updated !

Hugz,

Biancka

Achalasia during Pregnancy - Need advice!

> Friends,

>

> I'm in my second trimester and have undergone two very short-term-

> successful dilitations in the past year and a half. I crave that

> relief now,as I am having trouble eating and drinking both. For the

> past two days, the A has come back forcefully, and I am having spasms

> that I am not sure if they are spasms or some sort of reflux. I can't

> get them to stop.

>

> Has anyone here undergone any treatment for A while pregnant? I'm

> specifically wondering about risks to the baby, of course, as well as

> myself. I tend to run the other way from traditional medicine in a

> lot of ways, especially during pregnancy - but the old A has forced me

> to consider immediately the choices for NOW. I do, after all, have a

> little unborn baby to nourish as well as myself. I am feeling

> miserable! Any help/advice appreciated....!

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I understand where you're coming from. I am just over 11 weeks pregnant, and although I had the surgery over a year ago and am doing GREAT, I wonder if it will act up again as my pregnancy progresses.

When my sister was pregnant a few years ago, she had surgery to replace her pacemaker. I'm sure they don't prefer to do surgery while you're pregnant, but it is done. Also, due to the area where a myotomy is done, I can only imagine that things aren't in their "normal" position while you're pregnant.

Biancka was pregnant with her son Jasper a few years ago, when her achalasia hit bad. She ended up on a feeding tube, and Jasper was born healthy. Maybe a feeding tube could tide you over until you're in a better situation to have surgery?

I hope you have a great GI/surgeon to work with. Where are you from? Maybe someone lives near you and could reccommend someone to you?Good luck!

Hugs,

in BC

From: achalasia [mailto:achalasia ] On Behalf Of saundersclan2003Sent: November 26, 2005 2:34 PMachalasia Subject: Achalasia during Pregnancy - Need advice!

Friends, I'm in my second trimester and have undergone two very short-term-successful dilitations in the past year and a half. I crave that relief now,as I am having trouble eating and drinking both. For the past two days, the A has come back forcefully, and I am having spasms that I am not sure if they are spasms or some sort of reflux. I can't get them to stop.Has anyone here undergone any treatment for A while pregnant? I'm specifically wondering about risks to the baby, of course, as well as myself. I tend to run the other way from traditional medicine in a lot of ways, especially during pregnancy - but the old A has forced me to consider immediately the choices for NOW. I do, after all, have a little unborn baby to nourish as well as myself. I am feeling miserable! Any help/advice appreciated....!