New Member Question

[Guest guest]

Dear Stefani,

Now I read this more closely...I skimmed over the part that you already had 2

surgeries. I was talking to my son and husband, both breathing over my

shoulder.

I had my surgery w/ Dr. Fuller at Cedars, who specializes in VATS. When I

was in his office years ago, there was an man who was leaving, he asked Dr.

Fuller what it was that he had done and Dr. Fuller answered, " I took out your

esophagus. " The man must have had a memory problem, but then he said, Oh I

remember. Dr. Fuller studied @ USC with many of the old names, and spent time

specializing in esophageal manometries. When I had the surgery his group was

doing mostly VATS surgeries for lung cancer. Otherwise the people would have

had to have open chest surgeries.

Although he is not in the esophageal group anymore I'd suggest calling him,

along with Dr. Maisch @ UCLA. I have his phone number somewhere, email me.

These doctors will call you back! You do not have to wait months for

appointments, they will tell their office staff to make room for you. The more

doctors you talk to, the better. You do not have to be gossipy with them, but

they will cut to the chase very quickly if you quiz them on the different

techniques they use, once you talk to a few. Not that you can make a judgment

about which is better, but they all know each other, and will give you more

comparative remarks that will help you decide which person has the most

expertise for your situation. Well experienced achalasia doctors are a very

small group.

Drs. DeMeester at USC also specialize in esophageal surgery. Cedars' VATS

group, from what I can figure out, is very cutting edge and others come there to

learn for VATS. There are several other doctors in their group, but they seem

to overall do lungs mostly. That is why I'd recommend only Dr. Fuller within

that group. Dr. McKenna and Dr. Fuller both trained at MD Cancer

center in Houston, which is very prestigious, that was one of my decision issues

at the time I made my choice.

Sandy

> >

> > Hi all,

> >

> > First let me say that I'm thrilled to be a part of the group. I have gotten

plenty of in site by reading older posts.

> >

> > I have a question or two but wanted to give a quick overview of my A. I was

diagnosed with A when I was 13. I've had several balloon dialations and two

hellers. The second lasted about 15 years. I'm 34 now and seem to be in trouble

again. Liquid won't go down, have to regerg often and weight loss. I'm not a

canadite for another hellers. The doctor has discussed an ectomy but wants to

try botox first.

> >

> > Does anyone have experience with botox? Is it even worth it? Any thoughts

would be appreciated.

> >

> > Stefani SoCal

> >

>

[Guest guest]

Dr. Maish was my doctor at UCLA or the USC group Dr.Tom Demeester or

Crookes, Dr. Maish trained with Tom Demeester, he's world reknown for his skills

in foregut surgery.

From: zlmmom1 <mcnairmichelle@...>

Subject: Re: New member question

achalasia

Date: Wednesday, March 2, 2011, 6:29 AM

 

Hey Stefani - first of all, RUN - do not walk away from this doctor who is

telling you to use botox - botox is short term at best at your age. What you

should really do is find the best surgeon you can in your area - not too

familiar with SOCO but isn't Dr. Maish there? there's got to be others as well -

I'm sure some of the Cali members will offer you suggestions - find out what

they say and get 2 or 3 opinions if you can. I had the ectomy 3 years ago at the

age of 39 (I was 12 when I got A and only had 1 myo - lasted about 18 years) -

it's a tough surgery but I am so much better now and life is great. I make far

less accommodations now then I did before - my 'new normal' is really great.

Get some opinions from some experienced surgeons - I would think you should be

able to find someone who does at least 50 ectomies a year or so at the big

universities and then keep us posted and we'll do what we can to help!!

good luck!

~ in NC

achalasia free since 2008

>

> Hi all,

>

> First let me say that I'm thrilled to be a part of the group. I have gotten

plenty of in site by reading older posts.

>

> I have a question or two but wanted to give a quick overview of my A. I was

diagnosed with A when I was 13. I've had several balloon dialations and two

hellers. The second lasted about 15 years. I'm 34 now and seem to be in trouble

again. Liquid won't go down, have to regerg often and weight loss. I'm not a

canadite for another hellers. The doctor has discussed an ectomy but wants to

try botox first.

>

> Does anyone have experience with botox? Is it even worth it? Any thoughts

would be appreciated.

>

> Stefani SoCal

>

[Guest guest]

Thanks so much everyone for the feedback. Much appreciated. The whole botox

thing surely threw me for a loop. I don't mean to gossip but Dr. Ippolitti at

Ceders is the doctor that recommended it. He was my doctor back in 95' who I had

my second myotomy through. He is a great doctor and helped me a ton back then so

I was surprised when he said I should do botox for a while verses an ectomy. I

asked him about another myotomy and he said it wasn't an option for me.

Eventually I will have to have the ectomy but I think he wants to push it back

for a while. Why I'm not sure. I got the impression that he wants me to get

worst first. My E is stretched out and not much is dropping so I don't

understand this method at all. I am definitely going to take the advise and get

a few more opinions. Thanks again!

Stefani

[Guest guest]

That is interesting.... he was my gi and I adore him. He did a dialation as my

first treatment, because I just couldn't face waiting for another appointment to

see a surgeon. It lasted quite a while. He was at UCLA then. Then he went to

Cedars and he changed to recommending surgery as a first option. When I chose

dialation he did not make a specific recommendation as to surgery first. I just

couldn't face waiting any more, and he could do the dialation the next week.

Find out some more from him, like why he isn't in the esophageal center anymore,

I think he specializes more in IBS and Crohn's now... and why that whole

esophageal center at Cedars changed. My friend Peggy continues to see him for

autoimmune hepatitis and he has helped her a lot. He was her gi when she had

surgery also @ Cedars. She adores him too.

>

> Thanks so much everyone for the feedback. Much appreciated. The whole botox

thing surely threw me for a loop. I don't mean to gossip but Dr. Ippolitti at

Ceders is the doctor that recommended it. He was my doctor back in 95' who I had

my second myotomy through. He is a great doctor and helped me a ton back then so

I was surprised when he said I should do botox for a while verses an ectomy. I

asked him about another myotomy and he said it wasn't an option for me.

Eventually I will have to have the ectomy but I think he wants to push it back

for a while. Why I'm not sure. I got the impression that he wants me to get

worst first. My E is stretched out and not much is dropping so I don't

understand this method at all. I am definitely going to take the advise and get

a few more opinions. Thanks again!

>

> Stefani

>

[Guest guest]

Pls, try not to have BOTOX, bcoz it will cause more problems by the time you

need surgery. There are lots of good doc as long as you do not go to KAISER

PERMANENTE in SF.. Good luck...

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Wed, March 2, 2011 10:03:03 AM

Subject: Re: New member question

 

Stefani wrote:

> ... The doctor has discussed an ectomy but wants to try botox first. ...

Botox is a protein which your immune system can learn to target as an

invader. Once that happens Botox won't last long if at all. For some

people it never works. For some it stops working quickly. Some get a few

months, others a year, and some even more than a year. It may work the

first time and not the next or it may work many times. In any case it is

temporary and the result decreases with time until you have another.

Also because it is targeted by the immune system it causes inflammation

which leads to scarring. Many surgeons say that the scarring makes

surgery in that area harder. Even so there are times Botox can be

helpful. If for some reason you can't have surgery or just want to buy

some time before surgery Botox may be right. Also if Botox works it may

be an indication that a myotomy (or redo myotomy) of those same muscles

may work.

If esophagectomy is in your future you should probably start talking to

some surgeons (more than one) that are experts in both end stage

achalasia and in doing esophagectomies. Some of them may even suggest

trying another myotomy first.

notan

[Guest guest]

First, find a good GI who got lots of experience with A.. Keep on asking

question. Always ask how many A patients they have treated, how many came back

unhappy. What are the complains. Then ask their opinion why they recommend you

to have this or that treatment. If they say surgery, and be refered to a

THORACIC SURGEON to do MYETOMY, check the docs credentials,how long they have

been doing HM surgery. Is he active with A researchs or any esophagus surgery..

I even ask my daughter's GI doc how does his other collegeues think for the

treatment he is presenting to us... I was so happy with the response.. It is

like a big discussion or debate. very interesting to hear opinions... good luck!

________________________________

From: Sandy <sandycarroll@...>

achalasia

Sent: Wed, March 2, 2011 10:08:49 AM

Subject: Re: New member question

 

Dear Stefani,

There are quite a few of us in So Cal. Julee is the most recent active member of

this group, she is in the Riverside area, I'm in Long Beach and there is a

recent surgery success guy in Carson. It is very healing to meet any of us (if I

say so myself). Let us know where you live.

Botox is a no no for most people, usually recommended by doctors that don't have

much esperience with achalasia...in general go to UCLA, USC or Cedars and speak

to the heads of their esophageal department. They will call you back, usually

within hours. Or email. If they don't call you then they didn't get the message.

If you are seeing anyone less than the heads of the department of these

hospitals you are probably wasting your time and getting scared unnecessarily.

If you have an HMO, they will refer you out, but it might take some time. Julee

has been posting some beautiful testimonials the last few months, you might

search back through her messages.

I had surgery in 2005 (or 2004, I forget) and eat at about 95% or better of

normal people. There is hope but you absolutely have to see the heads of the

departments! Many many members of this group had surgery and don't bother coming

back to the group. I've kept in touch with quite a few that aren't active here

anymore, so don't get discouraged that there isn't hope.

Run from botox, unless you have some other condition that limits your options.

Sandy

>

> Hi all,

>

> First let me say that I'm thrilled to be a part of the group. I have gotten

>plenty of in site by reading older posts.

>

> I have a question or two but wanted to give a quick overview of my A. I was

>diagnosed with A when I was 13. I've had several balloon dialations and two

>hellers. The second lasted about 15 years. I'm 34 now and seem to be in trouble

>again. Liquid won't go down, have to regerg often and weight loss. I'm not a

>canadite for another hellers. The doctor has discussed an ectomy but wants to

>try botox first.

>

>

> Does anyone have experience with botox? Is it even worth it? Any thoughts

would

>be appreciated.

>

> Stefani SoCal

>

[Guest guest]

Sandy,

I didn't mean to say that I disliked him. He was my GI as well when he was at

UCLA and he helped me a ton. He recommended my second myo that I got which

relieved my symptoms for 16 years thats why I went back to him. I just couldn't

understand why he recommend botox which was something I never had done before. I

asked him about a third myo but he said it wasn't possible given the state of my

esophagus. He said I will eventually have to have an ectomy but I think he just

wants to push it back as long as possible. He said that botox was a temporary

fix but wanted to give it a try. Since I've never done it I wanted to ask the

group their thoughts. Hope this makes sense.

-S

> >

> > Thanks so much everyone for the feedback. Much appreciated. The whole botox

thing surely threw me for a loop. I don't mean to gossip but Dr. Ippolitti at

Ceders is the doctor that recommended it. He was my doctor back in 95' who I had

my second myotomy through. He is a great doctor and helped me a ton back then so

I was surprised when he said I should do botox for a while verses an ectomy. I

asked him about another myotomy and he said it wasn't an option for me.

Eventually I will have to have the ectomy but I think he wants to push it back

for a while. Why I'm not sure. I got the impression that he wants me to get

worst first. My E is stretched out and not much is dropping so I don't

understand this method at all. I am definitely going to take the advise and get

a few more opinions. Thanks again!

> >

> > Stefani

> >

>

[Guest guest]

Botox is only a short term fix. It is normally given pre-op not post-op. It is

mainly effective in the geriatric population. You've had two Myotomy's already.

The adhesions I'm sure are plenty. Botox just causes more. You may get no relief

at all. I feel like it is probably futile at this point. Where are you located?

This may very well be a last ditch effort. It won't hurt to try. Just make sure

your GI is Technically savvy. I'm in the medical field and I'm an A patient

post-op esophagectomy 3 years. My surgeons I assist perform dilitations and

esophagectomies. if you have any questions email me kristiede03@...

Hope this helps

Kristi

>

> Hi all,

>

> First let me say that I'm thrilled to be a part of the group. I have gotten

plenty of in site by reading older posts.

>

> I have a question or two but wanted to give a quick overview of my A. I was

diagnosed with A when I was 13. I've had several balloon dialations and two

hellers. The second lasted about 15 years. I'm 34 now and seem to be in trouble

again. Liquid won't go down, have to regerg often and weight loss. I'm not a

canadite for another hellers. The doctor has discussed an ectomy but wants to

try botox first.

>

> Does anyone have experience with botox? Is it even worth it? Any thoughts

would be appreciated.

>

> Stefani SoCal

>

[Guest guest]

I didn't mean it to sound like you disliked him... either. He was referred to

me as the person who likely saw the most achalasia people on the West Coast in

2001. Being he was at UCLA it makes sense he would have seen a huge number,

whether the most or not, is anyone guess. He has certainly seen a lot. I don't

think I realized the extent of your situation until I reread your posts. After

two myotomies and you are having trouble after all these years it is very

possible this is your last ditch effort. He certainly discounted botox with me,

it wasn't even on the table, so he is well informed about botox, way more than

most of us in this group.

How are you doing? Are you losing weight like crazy? coughing and generally

miserable? Or are you in a situation where you are stable? I don't think Dr.

Ippoliti would take a recommendation of botox lightly.

This has been a lesson to me in not jumping the gun, giving medical opinions

when I have no background. We see so many people come here when first

diagnosed, that have maybe gone to a smaller hospital and screaming against

botox is our first response, no matter what. So that is just an automatic

response. After two myotomies and a doctor saying a third one would not be

beneficial, then botox is about the only option left.

I guess it is a matter of how miserable you are, if you are having significant

complications now, and your quality of life is deteriorating. For you, it may

be a matter of deciding when you want to face a major surgery and work out the

timing and family and work situation. Your esophagus must be very droopy or

looped or something so extreme that he doesn't see a payoff for another myotomy.

He called me a few times, he didn't seem like the type of doctor just trying to

get you in for an appointment, if you wanted to call him with any questions.

Peggy continues to see him for other issues, she knows him much better than I do

I can put you in touch with her.

> > >

> > > Thanks so much everyone for the feedback. Much appreciated. The whole

botox thing surely threw me for a loop. I don't mean to gossip but Dr. Ippolitti

at Ceders is the doctor that recommended it. He was my doctor back in 95' who I

had my second myotomy through. He is a great doctor and helped me a ton back

then so I was surprised when he said I should do botox for a while verses an

ectomy. I asked him about another myotomy and he said it wasn't an option for

me. Eventually I will have to have the ectomy but I think he wants to push it

back for a while. Why I'm not sure. I got the impression that he wants me to get

worst first. My E is stretched out and not much is dropping so I don't

understand this method at all. I am definitely going to take the advise and get

a few more opinions. Thanks again!

> > >

> > > Stefani

> > >

> >

>

[Guest guest]

Sandy wrote:

> This has been a lesson to me in not jumping the gun, giving medical opinions

when I have no background.

I agree. We can give people information about the risks and benefits

that have been published and that us and others have experienced and

then let the reader figure it out. We should not be telling people what

to do medically. This is part of my concern with the PPI issue. I

believe PPI use is important for many of us but I don't tell people they

need to be on one. Even if I was concerned that the risks didn't

outweigh the benefits I still would avoid telling people to get off

them. They can decide for themselves what risks and benefits are

important to them and which are not. I don't have any problem telling

people what I would do, but that does not mean I think they need to do

the same. Likewise if someone decides they don't want to do something,

don't tell me I shouldn't do it either, just tell me why you didn't. If

you tell me what to do, or not to do, I will try to get you to justify

it, and justify it well.

Botox can buy time before surgery, which for some people may be very

important. Botox can be a valuable test, which for some people may be

very important. These reasons may be more important for some than the

negatives about Botox.

notan

[Guest guest]

Through the years we have all mellowed, but there are a few buzz buttons on all

of us. Botox is a huge one, I think I made the same mistake doctors make when

one of us shows up in their office and without a thorough discussion just passed

out " no Botox, " like they do and pass out PPI's and say we have GERD. Most of

the time we are right. But for that small percentage, it is a big wrong.

The MOST information I got from doctors was going back and forth between a few

doctors and saying things like, " well this one does it this way because he/she

says this will happen, what is your response to that? " Then going back to

another doctor and saying, " this one does this or recommends this because of...

____ and you said ____ , but tell me why that earlier doctor says this and why

do you disagree, what do you do differently so that ____ doesn't happen.

It isn't that we have the ability to make better decisions than any of these

doctors, but we can learn the depth of their knowledge and experience and make a

choice of care based on how well we think they have been open to other doctors'

procedures and opinions and how they have adjusted their procedures to

accomodate all the intricacies of a surgery.

I don't think any of us should say NEVER or ALWAYS, there is always and

exception and certainly, as far as I know, no one here has ever done any surgery

on an achalasian or prescribed any medication. It changes when your malpractice

or E & O insurance is on the line and you have the medical degree by your name.

PPI's help a lot of people, same as vaccinations for kids. I don't happen to

need PPI's but I know some that have had a huge improvement in their quality of

life by taking them.

Sandy

[Guest guest]

Hi Everyone,

I am new to the group and have had 6 or 7 Chlosteatoma surgeries from ages 8 to

25. I am 30 now and haven't had any problems for five years. I got a sinus

infection in January and ever since I have been dizzy and lightheaded with

headaches and feel like I am having some digestional issues. My question is,

can Chlosteatoma cause issues in your stomach or digestive track as well? It

just seems that my dizzyness, headaches, and being lightheaded seem to be tied

to my digestive issues. Thanks.

[Guest guest]

Thanks so much, that does help. My doctor did say my nerves were active like a heightened fight or flight response so that is interesting you said that. I have my first appointment with my ENT specialist in years on Thursday. I really hope none of this came back again. It's been nice to not deal with this for a while after my entire childhood and young adult life.To: cholesteatoma From: kbteague@...Date: Sat, 2 Jul 2011 04:21:23 +0000Subject: Re: New Member Question

Hi J-welcome!What type of digestional issues, if that is not to personal to ask? I'm not a doctor but I don't think c-toma affects digestion directly. Howecer, I do know and it is well documented that the veritgo and dizziness can cause nausea. The headaches if they are migraine may cause nausea as well. The nausea can inturn mess up the signals to your other digestion as my doctor said " fight or flight " and so it can almost be like irratable bowel. Because your nauseated you may throw-up; or you may not actually throw-up but your body thinks it needs to rid itself of everything - you get the idea. Also, if you are on meds for the sinus infection or for the dizziness; depending on the types they can mess up digestion. For instance when I took phengren for nausea I would sometimes get " backed-up " . So, indirectly it may very well be the cause. But this is only my experience. Is this kind of what you are asking? I hope this helps, but I would ask your doc and/or read the side effects of any meds you maybe taking.Good Luck!Sent on the Sprint® Now Network from my BlackBerry®From: " jmrogers31 " <j_1207@...>

Sender: cholesteatoma

Date: Fri, 01 Jul 2011 14:06:32 -0000To: <cholesteatoma >ReplyTo: cholesteatoma

Subject: New Member Question

Hi Everyone,

I am new to the group and have had 6 or 7 Chlosteatoma surgeries from ages 8 to 25. I am 30 now and haven't had any problems for five years. I got a sinus infection in January and ever since I have been dizzy and lightheaded with headaches and feel like I am having some digestional issues. My question is, can Chlosteatoma cause issues in your stomach or digestive track as well? It just seems that my dizzyness, headaches, and being lightheaded seem to be tied to my digestive issues. Thanks.