Re: Re: Dr. for Lap Heller Myotomy

[Guest guest]

Thanks Barb, sounds like a nightmare.  I am going to call Dr. Richter and set

up an appointment and have all my tests sent to him and see what he

recommends.  The hospital and dr. are covered under my insurance, thank

goodness!  I appreciate all your help and stay well as best as we all can. 

Life is tough with this disease and I know finding the right doctor is

imperative.  I get sicker each and every day and just want to feel better,

anything is better then vomiting everything including water and any fluids. 

Can't take the pain anymore either.  They said my esph. is super dialated and I

cannot wait.  Thanks again! 

From: Barb C. <bagwoman52@...>

achalasia

Sent: Tuesday, June 14, 2011 7:12 PM

Subject: Re: Dr. for Lap Heller Myotomy

 

Hi ,

I had Dr. Chojnacki do my lap HM w/dor fundo. I interviewed her prior to surgery

and asked if anyone had problems after surgery, she replied " one woman, her

symptoms were not typical and she did the surgery hoping it would help her. " (I

knew there was a negative notation on the internet from one patient.) She was

patient, seemed knowledgeable and said she had done over 100 HM's. She did my

surgery 2010. I was eating small portions the first couple months post surgery

and then I became progressively worse getting to the point that I could not eat.

A dilation was performed 7 months after HM by a GI doc at Jeff for a blockage. I

became increasingly worse and 1 month later went to Mayo in MN where I was

diagnosed with nerve damage to stomach. Prior to Mayo Dr. Chojnacki had told me

that she did not know what was going on, my symptoms were never typical for

Achalasia, even though all tests (barium, manometry) confirmed I indeed had

Achalasia. This did

irritate me since we had the prior conversation before surgery. Anyway, I

finally found this support group and emailed Dr. Richter (world authority on

Achalasia, transferred from Cleveland Clinic) at Temple U Hospital in

Philadelphia. Since by this time I was diagnosed with the nerve damage from

surgery he referred me to his associate at Temple, Dr. Parkman, another

authority on Achalasia who is also an expert on motility. I underwent several

tests, had my meds changed and I feel better, can now eat more than anytime

since surgery. Still eat small portions and chew well, but is much better than

living on Ensure and Carnation Instant Breakfast. There is a good surgeon at

Temple for Achalasia (Dr. Dempsey), but I understand he may be going to U of

Penn in July. Ask me any other questions you may have. Good luck!!

Glad you found this site prior to surgery, as everyone mentions, get the BEST

doctors.

BC

>

> Hi, new to the site, have had achalasia for about 1 year, did all the tests,

had botox, didn't work at all. Ready for surgery. Anyone know of Dr.

Chojnacki from Jefferson U in Philly or Dr. Seteiha and Dr. Ajay Goyal

from Overlook in NJ. All 3 do lap heller myotomys. Thanks,

>

[Guest guest]

Chojnacki did my myotomy too. I found her and Jefferson as a whole to be

completely unsupportive after surgery. She told me the operation was a success

and that I needed no nore treatment. Good thing for me I found this group.

Prilosec makes a big difference. I also go to Richter and Temple. It's a

striking difference between the factory atmosphere at Jefferson and the sense

that I counted as a person at Temple.

Barb, what did you think of the xray department where the barrium swallow was

done? I was not impressed.

Sent from Smrtphone That Lacks Spellchecker

" Barb C. " <bagwoman52@...> wrote:

>

>Hi ,

>I had Dr. Chojnacki do my lap HM w/dor fundo. I interviewed her prior to

surgery and asked if anyone had problems after surgery, she replied " one woman,

her symptoms were not typical and she did the surgery hoping it would help her. "

(I knew there was a negative notation on the internet from one patient.) She was

patient, seemed knowledgeable and said she had done over 100 HM's. She did my

surgery 2010. I was eating small portions the first couple months post surgery

and then I became progressively worse getting to the point that I could not eat.

A dilation was performed 7 months after HM by a GI doc at Jeff for a blockage. I

became increasingly worse and 1 month later went to Mayo in MN where I was

diagnosed with nerve damage to stomach. Prior to Mayo Dr. Chojnacki had told me

that she did not know what was going on, my symptoms were never typical for

Achalasia, even though all tests (barium, manometry) confirmed I indeed had

Achalasia. This did irritate me since we had the prior conversation before

surgery. Anyway, I finally found this support group and emailed Dr. Richter

(world authority on Achalasia, transferred from Cleveland Clinic) at Temple U

Hospital in Philadelphia. Since by this time I was diagnosed with the nerve

damage from surgery he referred me to his associate at Temple, Dr. Parkman,

another authority on Achalasia who is also an expert on motility. I underwent

several tests, had my meds changed and I feel better, can now eat more than

anytime since surgery. Still eat small portions and chew well, but is much

better than living on Ensure and Carnation Instant Breakfast. There is a good

surgeon at Temple for Achalasia (Dr. Dempsey), but I understand he may be going

to U of Penn in July. Ask me any other questions you may have. Good luck!!

>Glad you found this site prior to surgery, as everyone mentions, get the BEST

doctors.

>BC

>

>

>>

>> Hi, new to the site, have had achalasia for about 1 year, did all the tests,

had botox, didn't work at all. Ready for surgery. Anyone know of Dr.

Chojnacki from Jefferson U in Philly or Dr. Seteiha and Dr. Ajay Goyal

from Overlook in NJ. All 3 do lap heller myotomys. Thanks,

>>

>

>

[Guest guest]

Strange, because supposedly Richter recommended Chojnacki back 4 years ago to a

friend of mine that had a wonderful experience with her and is doing awesome. 

I guess we all are different.  I am going with Chojnacki, meeting with her in

June for a consult.  Hope it all works out.  Thanks for all your help.

From: Hoffman <rp518dan@...>

achalasia

Sent: Wednesday, June 15, 2011 10:06 AM

Subject: Re: Re: Dr. for Lap Heller Myotomy

 

Chojnacki did my myotomy too. I found her and Jefferson as a whole to be

completely unsupportive after surgery. She told me the operation was a success

and that I needed no nore treatment. Good thing for me I found this group.

Prilosec makes a big difference. I also go to Richter and Temple. It's a

striking difference between the factory atmosphere at Jefferson and the sense

that I counted as a person at Temple.

Barb, what did you think of the xray department where the barrium swallow was

done? I was not impressed.

Sent from Smrtphone That Lacks Spellchecker

" Barb C. " <bagwoman52@...> wrote:

>

>Hi ,

>I had Dr. Chojnacki do my lap HM w/dor fundo. I interviewed her prior to

surgery and asked if anyone had problems after surgery, she replied " one woman,

her symptoms were not typical and she did the surgery hoping it would help her. "

(I knew there was a negative notation on the internet from one patient.) She was

patient, seemed knowledgeable and said she had done over 100 HM's. She did my

surgery 2010. I was eating small portions the first couple months post surgery

and then I became progressively worse getting to the point that I could not eat.

A dilation was performed 7 months after HM by a GI doc at Jeff for a blockage. I

became increasingly worse and 1 month later went to Mayo in MN where I was

diagnosed with nerve damage to stomach. Prior to Mayo Dr. Chojnacki had told me

that she did not know what was going on, my symptoms were never typical for

Achalasia, even though all tests (barium, manometry) confirmed I indeed had

Achalasia. This did

irritate me since we had the prior conversation before surgery. Anyway, I

finally found this support group and emailed Dr. Richter (world authority on

Achalasia, transferred from Cleveland Clinic) at Temple U Hospital in

Philadelphia. Since by this time I was diagnosed with the nerve damage from

surgery he referred me to his associate at Temple, Dr. Parkman, another

authority on Achalasia who is also an expert on motility. I underwent several

tests, had my meds changed and I feel better, can now eat more than anytime

since surgery. Still eat small portions and chew well, but is much better than

living on Ensure and Carnation Instant Breakfast. There is a good surgeon at

Temple for Achalasia (Dr. Dempsey), but I understand he may be going to U of

Penn in July. Ask me any other questions you may have. Good luck!!

>Glad you found this site prior to surgery, as everyone mentions, get the BEST

doctors.

>BC

>

>

>>

>> Hi, new to the site, have had achalasia for about 1 year, did all the tests,

had botox, didn't work at all. Ready for surgery. Anyone know of Dr.

Chojnacki from Jefferson U in Philly or Dr. Seteiha and Dr. Ajay Goyal

from Overlook in NJ. All 3 do lap heller myotomys. Thanks,

>>

>

>

[Guest guest]

He had the laparoscopic heller myotomy and is doing terrific, he said he is 90%

back to normal and he basically went through the same as I did, and the botox

didn't work for him either, mine didn't even last a week and I was in horrific

pain after it which only happens in 20% of the cases.  We all just want to feel

better.  Thanks,

From: Barb C. <bagwoman52@...>

achalasia

Sent: Wednesday, June 15, 2011 8:53 PM

Subject: Re: Dr. for Lap Heller Myotomy

 

,

What type surgery did your friend have with Dr. Chojnacki?

> >>

> >> Hi, new to the site, have had achalasia for about 1 year, did all the

tests, had botox, didn't work at all. Ready for surgery. Anyone know of Dr.

Chojnacki from Jefferson U in Philly or Dr. Seteiha and Dr. Ajay

Goyal from Overlook in NJ. All 3 do lap heller myotomys. Thanks,

> >>

> >

> >

>

>

>

>

[Guest guest]

Actually I have gone to several doctors and also had a balloon dilation twice,

was back to not eating in 1 week.  It just doesn't work for me. So I had the

botox, didn't even work for 1 day.  I never saw Cohen, I have a great doctor in

Westfield and then went to Lambroza in NYC and then had my mynometry done by an

ENT in  Dr. Silvers office in NYC, they were great.  Surgery is really my only

option, all else has failed.  Dr. Richter had was the one that recommended

Chojnacki to my friend that is now doing great!  Thanks for everything and stay

well, glad the dilation worked for you!  Talk soon,

From: <blicky77@...>

achalasia

Sent: Thursday, June 16, 2011 10:17 AM

Subject: Re: Dr. for Lap Heller Myotomy

 

I saw Dr. Cohen at Jefferson (also had my manometry done there). He told me I

needed botox and surgery (from Chojnacki), and that there were no other options.

I had read that getting botox can cause scar tissue which could make surgery

more difficult. When I tried to call him for more questions, he never returned

my call. I opted for a second opinion and saw Dr. Richter at Temple. I am

thankful i did! It was a night and day difference. He told me I had the option

to get a balloon dilation due to my age and gender (I'm a 32 female). He said

younger men tend to do better with surgery and older women tend to do better

with dilation. Since I am female and 32 he said I could go either way. I elected

to try the less invasive route with the dilation last August. He used the

smallest size balloon and I am so thankful to say that I have been able to get

food and liquids down since! Of course I will never be 100% normal as we all

know our esophagus doesn't push

food down, it works by gravity so I still need to take my time eating. At my 3

month checkup where he did a second timed barioum swallow he saw that my

emptying went from over 5 minutes to 1 minute and my esophagus shrank down to

it's normal size again. I didn't know it could do that, he said it was stretched

to about twice it's normal size before I had the dilation done.

My point is that it's crucial to get a second opinion and I would highly

recommend Dr. Richter at Temple to anyone in the Philadelphia area. He changed

my life and I really felt he truely understood where we are coming from. He said

we're never cured, we will always need to have some tune ups along the way. I

think he's right, I'm sure my dilation won't last forever and I'll need further

treatment at some point in the future. I was so bad before my dilation that I

had lost 35 lbs and was regurgitating my own saliva. I was taking smooth muscle

relaxers to try and get food/liquids down but they stopped working after a

couple months. I went from no symotoms to not being able to get anything down in

about a year. I still have trouble with certain things due to consistency such

as peanut butter or ice cream. But I think that's because my esophagus doesn't

work to push it down. I can live with that, it's much better than it was!

I wish you all find the help you need to get some relief from this disease. Most

people don't know how lucky they are to be able to eat and drink without giving

it a second thought.

Please feel free to email me with any questions!

Vicky from Cape May, NJ.

> > >>

> > >> Hi, new to the site, have had achalasia for about 1 year, did all the

tests, had botox, didn't work at all. Ready for surgery. Anyone know of Dr.

Chojnacki from Jefferson U in Philly or Dr. Seteiha and Dr. Ajay

Goyal from Overlook in NJ. All 3 do lap heller myotomys. Thanks,

> > >>

> > >

> > >

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