Re: Myotomy in IL, USA

[Guest guest]

Hi -- I haven't had the surgery yet, so I can't answer your questions, but I can offer some advice from what I've learned here on this board.

Have you been able to determine the experience level of the surgeon you've chosen with regards to this particular procedure? The reason I ask is because a super-duper surgeon in other procedures who hasn't done many Heller Myotomy procedures isn't a very good choice, in my opinion. The people who have experienced the best outcomes are generally the ones who have gone to the surgeons who are more experienced in this very specialized procedure.

Also, if you provide the name of your surgeon, you might get somebody's personal experience with him -- just "in Illinois" isn't going to give you any real info about your surgery if someone didn't have the same exact surgeon.

Debbi in Michigan

Hello. I am new to the group. The surgeon I was referred to cannot fit me in for two more months. I was wondering if anyone else in the group has had a myotomy in Illinois. With who, where, what type of wrap, results? Any info would be VERY much appreciated.

[Guest guest]

Hi ,

I don't live in Illinois however I live in Columbus, Ohio,

not too far. If I can help you let me know.

Jenifer in Ohio

> Hello. I am new to the group. The surgeon I was referred to

cannot

> fit me in for two more months. I was wondering if anyone else in

the

> group has had a myotomy in Illinois. With who, where, what type of

> wrap, results? Any info would be VERY much appreciated.

>

>

[Guest guest]

Jen,

Thank you. I do have a couple questions. Have you been to the

Cleveland Clinic? What kind of treatment options have you tried? Is

anyone actively researching our condition?

in Illinois

> > Hello. I am new to the group. The surgeon I was referred to

> cannot

> > fit me in for two more months. I was wondering if anyone else in

> the

> > group has had a myotomy in Illinois. With who, where, what type

of

> > wrap, results? Any info would be VERY much appreciated.

> >

> >

[Guest guest]

wrote:

> Are they using a robot to cut the muscle for you? Is that the

> standard do you think? Is the dor fundoplication more common? better

> do you think?

Not all hospitals have " the robot " , so while it's not the standard NOW, I

think it likely will be the standard in laparoscopic surgery in the

future.

As for fundoplication, there doesn't seem to be any one 'right answer'

there. I suggest reading the links in the Links Section -- some people

have a fundo (nissen, dor, toupet) and have no problems; some people get

the fundo too tight and wind up having problems very similar to achalasia;

some people have no fundo at all and have no problems w/ it; some people

have no fundo but have problems w/ acid reflux (which is usually

manageable using proton pump inhibitor meds.)

I think the best you can do is educate yourself on what is involved in the

procedure and then discuss it in depth w/ your doctor -- what does he

usually do and why? What % of patients are ok afterwards, and what % have

problems b/c of the wrap or lack thereof, etc.

Debbi

[Guest guest]

, I did some searching in the archives for the Chicago area. Here's

what I found. I don't know if any of the email addresses are still

current, but it's worth a try. I hope it helps!

Debbi

-------------------------------

a, aka polyanak (see post from 1/26/04) I think is from Chicago.

-------------------------------

In the U.S. News & World Report, July 28th magazine, they published a list

of the " Top Best 50 Hospitals " for various health conditions. For

Gastroenterologists & Digestive Disorders, the top 10, out of 50 listed,

were:

1) Mayo Clinic - Rochester, MN

2) Cleveland Clinic

3) s Hopkins Hospital - Baltimore

4) Massachusetts General Hospital - Boston

5) Mount Sinai Medical Center - N.Y.

6) University of Chicago Hospitals

7) UCLA Medical Center - Los Angeles

8) Duke University Medical Center - Durham, N.C.

9) University of California - San Francisco Medical Center

10) Brigham and Women's Hospital - Boston

-------------------------------

From: " Carol Haggas " <chaggas@...>

Date: Thu Nov 28, 2002 7:33 am

Subject: Re: In search of proffesional

Hi, - I live west of Chicago and can highly recommend the surgeon

who performed my myotomy in November, 1999. His name is Dr.

Altimari and he is affiliated with Central DuPage Hospital in Winfield. The

name of his professional group is DuPage Surgical Consultants. Phone is

630-668-0833.

Carol

> Hello all! My name is , I am 25, I am a college student and I

> have achalasia. I am in search of a proffesional surgeon/doctor for

> my myotomy. I am in Illinois and wish not to travel too far but will

> to find the best doctor/surgeon there is. Please send me pictures of

> surgery scars (optional),I would like to get an idea of how cut up I

> might be;and please send me any and all information you can donate as

> to your experiences before and after surgery,(How are you doing

> now?), phone numbers,names and locations of doctor/surgeons, and your

> opinion on your hospital stay. If anyone is interested in knowing

> about disability for achalasia, I am currently doing that program. It

> took 3 years but it is a huge help and I have health insurance now as

> well.Please contact me at mjane_69_2000@... . Thank you all for

> your cooperation.

-------------------------------

From: Jerry Stalcup

achalasia

Sent: Saturday, September 28, 2002 3:33 PM

Subject: Re: (unknown)

Hi Sue....

I also am new and will be at Northwestern in Chicago on Monday for a

manometry and evaluation. (Has anyone doctored there?) I believe I've

had A for a long period of time. What finally scared me was aspirating

food during the night and having to cough it out of my lungs every

morning. Along with this I have stuffy nose problems. Has that happened

to you prior to getting pneumonia. Either I can't eat or can't breathe

and am definitely a mouth breather because my nose is always stuffed.

Also I have breathelessness and a hoarse voice for much of the time. I am

dreading Monday and the tests I will have....but.....

I have a niece and nephew who are MD's and they are pushing me to have

treatment. They tell me aspiration pneumonia could lead to chronic

lung disease. So I believe you are on the right tract and should follow

through on the A diagnosis. Good Luck.....Donna in Northern Illinois

-------------------------------

From: " Jerry Stalcup " <jdstal@...>

Date: Fri Oct 18, 2002 11:04 am

Subject: Re: Hello all

Dear MJane.....

Thought maybe I could help you being a fellow Illinoisian. (Rockford).

I just had my myotomy last week in downtown Chicago at Northwestern Mem

Hosp. (Dr. Joehl). We searched for about 2 weeks (with the help of my

gastro doc) to find someone close by. I can't tell you how great they

were. We narrowed it down to either Mayo's, Madison, or Ohio but chose

Northwestern because of the close proximity.

Reply back with your email address if you want to talk personally with me.

Donna

-------------------------------

From: " Jerry Stalcup " <jdstal@...>

Date: Thu Oct 3, 2002 8:05 pm

Subject: Thanks

I am scheduled for a myotomy Wed., Oct 9, at Northwestern in Chicago.

Thanks to all of you for the information and experiences you have had with

this crazy affliction, I am going in to the surgery with a positive

approach. My greatest fear was the manometry test they performed last

Monday to confirm diagnosis. They inserted the tube while having an

endoscope so I made it through it ok.

I am interested in knowing what the special diet is after surgery. I

know some of you just go right ahead and eat normally again. But I would

like to take it a little easy at first. My throat is still sore from the

Monday test and it's Thursday now. Would appreciate any tips on getting

through the surgery. Thanks to all. Donna

-------------------------------

From: " Carol " <ckeith@...>

Date: Sun Sep 15, 2002 1:12 am

Subject: Re: Surgeon in Chicago

I was under the care of Gene Chaio at Indiana University Hospital. He was

national recognized in treating achalaisa. I am sure he is a doctor that

does his research. He now has his practice somewhere in the Chicago area.

Check with him or his office. I am sure that they can put you on the right

track! I sure wish he was still at the IU hospital.

Carol

Indiana

-------------------------------

From: " jdstal " <jdstal@...>

Date: Wed Sep 4, 2002 3:37 pm

Subject: New member

Recently diagnosed with " A " . Looking for doctors in the Chicago

area. Have any of you had successes or disappointments with Northern

Ill.- South Wisconsin physicians. Have not had the menometry test yet

and am scared silly to take the test. Have had endoscope and barium

esophgeal test which makes my gastor doctor feel I have achalasia.

But supposedly there is no one in my town that does the surgery. HELP

jdstal@...

-------------------------------

From: " " <jennlee.2@...>

Date: Fri Sep 13, 2002 8:19 am

Subject: Re: Help me find a doctor

Hi -

I know you said Illinois but if you are in north Illinois you might

consider UW Medical Foundation in Madison, WI. It has an excellent

reputation and over 800 physicians.

I wouldn't recommend my GI guy necessarily, although he's supposed to

be a good specialist in this area (mostly because I don't think he

listens to me). I highly recommend my surgeon!

(Jennlee_2)

[Guest guest]

Welcome back, !!!So great to hear you're doing so well!!!!!!!!!!!!!!!!!!!!!!!!!!

Debbi

Hello all. I am back to work after my surgery the Friday before last. Had the Divinci (robot) lap and dor fundo. Things went fine and I haveactually been working since last Wednesday, though shorter hours lastweek. Got reprimanded from my boss when she found out that I wassupposed to be out for at least a week or two. Told her it was easierto be at work than sitting at home trying not to pick up my 7 month olddaughter. The surgery took forever because of the setup for the robot. I wentinto preop at 7am and they finished the surgery around 3pm. If italways takes this long to do the robotic procedure, i doubt it willbecome very common. Took too much OR time and I am sure the roboticsare very expensive and I don't think any of the (minor) benfits willoutweigh the cost.

[Guest guest]

,

Yes I was diagnosed at the Cleveland Clinic by Dr. Richtor sp?.

I have heard a lot of people with great results at the CC.

He wanted to do a balloon dialation because he said I was

early in the disease. (had symptoms for approx 1.5 years.

After coming home and doing research I decided to have the

surgery, it is suppose to be more of a long-term hopefully

permanent fix. Has been one year this month and I feel

wonderful have even gained 25 lbs!

My surgeon was Dr. Melvin at OSU Hospital. Dr. Melvin

says the research is leaning towards a viral cause as

opposed to a auto-immune cause. Who knows.

I do recommend surgery sooner than later because it is

better to do it before your E becomes damaged or

stretched out.

Let me know if you have any questions.

Jenifer in Ohio

> > > Hello. I am new to the group. The surgeon I was referred to

> > cannot

> > > fit me in for two more months. I was wondering if anyone else

in

> > the

> > > group has had a myotomy in Illinois. With who, where, what

type

> of

> > > wrap, results? Any info would be VERY much appreciated.

> > >

> > >

[Guest guest]

Jenifer wrote:I was diagnosed at the Cleveland Clinic by Dr. Richtor sp?. I have heard a lot of people with great results at the CC. He wanted to do a balloon dialation because he said I wasearly in the disease.

Jenifer, I know you've said this before, but I'm still amazed every time you say that Dr. Richter wanted to do a dilation. When I saw him last year, he didn't seem to be pro-dilation, and I don't recall anyone else here saying they were given a recommendation for dilation at TCC. It just throws me every time I see that, b/c I don't expect it! LOL One of these days I'll get used to it, I guess!Debbi

[Guest guest]

Debbi,

I was surprised too. He wanted me to spend the night

in Cleveland and do it the following morning. Being

told I had Achalasia one day and wanting to do some-

thing the next was too soon. I told him it was much

too fast and I needed a couple of weeks to research.

I called my GI, Dr. Fromkes, and told him what Dr. Richtor

wanted to do, he said no way. He referred me to a

surgeon. Dr. Fromkes called me at my house every

Sunday morning to make sure I was not going to do a

dialation and see how I was doing.

I also have a very good friend that has been a pathologist

for over 20 years and he researched Achalasia for me, I felt

overwhelmed. I trusted his opinion and I'm glad I did.

I'm not saying anything negative about Dr. Richtor I know

he is a very good Doctor. I just don't understand, especially

knowing what I know now, why he felt he wanted to do

a dialation at my age.

I will say when I first went to the Cleveland Clinic

and got off the elevator and saw a big sign saying

Swallowing Disorders, I looked at my dad and said

" I've found my people! " .

Stay warm, I'm freezing

Jenifer in Ohio

> I was diagnosed at the Cleveland Clinic by Dr. Richtor sp?. I have

heard a lot of people with great results at the CC. He wanted to do a

balloon dialation because he said I was

> early in the disease.

>

> Jenifer, I know you've said this before, but I'm still amazed every

time you say that Dr. Richter wanted to do a dilation. When I saw

him last year, he didn't seem to be pro-dilation, and I don't recall

anyone else here saying they were given a recommendation for dilation

at TCC. It just throws me every time I see that, b/c I don't expect

it! LOL One of these days I'll get used to it, I guess!

>

> Debbi

[Guest guest]

Jen,

It is encouraging to hear you're doing so well a year afterwards. I

think I needed to hear that directly from someone who was in the same

position I am. You made my day. =)

> > > > Hello. I am new to the group. The surgeon I was referred to

> > > cannot

> > > > fit me in for two more months. I was wondering if anyone

else

> in

> > > the

> > > > group has had a myotomy in Illinois. With who, where, what

> type

> > of

> > > > wrap, results? Any info would be VERY much appreciated.

> > > >

> > > >