Re: New here - acupuncture? specialist in SF Bay Area?

[Guest guest]

Hi and Welcome!

Sorry to hear that your husband is dealing with Achalasa!  This is a great

group

that has lots of information.  Did your husband have a manometry test done? I

can't speak for everyone (as we are all somewhat different), but my ability to

swallow with manometry testing showed 100% failure.  There is no known cure for

this disease.  The three things that are normally done for it is either Surgery

(Heller Myotomy, dilitation or botox injection).  Depending on his health and

age, a good doctor will advise the best results.  I think that there are some

good doctors in the Bay area.  I think it was a Dr. Lawrence at UCSF???  Does

that ring a bell anyone???  

I have had achalasa for many years and struggled because it took so long to

finally get a diagnosis.  After finding a great surgeon here in So. Calif. at

UCLA, I had surgery last year and it was the best thing for me.  I can eat

again! 

Trying things like acupuncture, is not really going to help in most cases.  You

want the esophagus to drain and not fill up with food constantly, otherwise it

can lead to problems.  The esophagus can stretch out over time, so that is why

he needs to find help and not just " herbs " .  That is my opinion. 

The most important thing of course is finding a surgeon or GI that knows

achalasia and deals with lots of patients, that is hard to find and they are

rare specialists, but they are out there and that is the only kind of doctor

that I would suggest you let work on your husband. 

I hope you read the threads on this site and research all the information about

Achalasia.  It is serious that he find treatment of some kind.  Try to avoid

doing botox, if he is planning on possibly doing surgery, as it could affect the

outcome.  Surgery is best when it is done first, avoiding scar tissue in the

esophagus makes surgery that much more difficult. 

Julee So Calif. 

 

________________________________

From: M. <lisa.anne.m@...>

achalasia

Sent: Tue, March 22, 2011 8:47:05 PM

Subject: New here - acupuncture? specialist in SF Bay Area?

 

Hi everyone,

I'm new here. My husband was diagnosed with Achalasia a few weeks ago after

struggling with pain and increasing difficulty swallowing/eating over the past

1.5 years.

I'm so glad to have found this group!

we just saw a surgeon today who is recommending Heller myotomy. We are both very

concerned about the risks associated with the surgery, and the likelihood it

won't resolve the condition. He really isn't sure he wants to do the surgery at

this point.

Does anyone know of an achalasia expert in the SF Bay Area or Northern Cal.?

Has anyone been helped by acupuncture & Chinese herbal medicine? Hubby will try

that for the first time this week.

Thanks in advance for your help.

Best,

[Guest guest]

Dear ,

In answer to your question about acupuncture and chinese herbs, I've had both.

One word of caution, I found a really qualified Traditional Chinese Medicine

(TCM) doctor who had extensive background as a doctor in China and teaches

acupuncture and herbs in chicago at the Midwest College of Oriental Medicine.

He has helped me with diet and herbs and oils (rub on chest and joints) that are

anti spasmotic. And also acupuncture.

I had a dilation done last year at about the same time as I started with this

doctor. I've had less and less symptoms to where I am almost symptom free --

only a little burping once in a while. No spasms, no pain, no regurgitation at

night or during the day. Whereas last year I could not keep food or liquids

down, could not sleep from the coughing up and ended up being totally depleted

(physically and energeticallY) and weak.

I'm planning of having a barium study in about a month or so to see how my

esophagus looks. (I've also had some hands on energy healing work done for me

and I have been using a zero point energy healing tool on myself to speed up the

healing process.)

What I am trying to say is that you have to find a really good TCM doctor. I

think there is the Pacific College of Oriental Medicine on the west coast and

may be they could help you find someone. I tried a differnt TCM doc just for

acupuncture a couple of years ago and did not have as good reasults as I do now.

Hope this helps.

Eva in Chicagoland

>

> Hi everyone,

>

> I'm new here. My husband was diagnosed with Achalasia a few weeks ago after

struggling with pain and increasing difficulty swallowing/eating over the past

1.5 years.

>

> I'm so glad to have found this group!

>

> we just saw a surgeon today who is recommending Heller myotomy. We are both

very concerned about the risks associated with the surgery, and the likelihood

it won't resolve the condition. He really isn't sure he wants to do the surgery

at this point.

>

> Does anyone know of an achalasia expert in the SF Bay Area or Northern Cal.?

>

> Has anyone been helped by acupuncture & Chinese herbal medicine? Hubby will

try that for the first time this week.

>

> Thanks in advance for your help.

>

> Best,

>

>

[Guest guest]

Thanks and Eva for sharing your experiences and insights. (We are both a

little shell shocked and overwhelmed as we try to figure out what to do next.)

Best,

> >

> > Hi everyone,

> >

> > I'm new here. My husband was diagnosed with Achalasia a few weeks ago after

struggling with pain and increasing difficulty swallowing/eating over the past

1.5 years.

> >

> > I'm so glad to have found this group!

> >

> > we just saw a surgeon today who is recommending Heller myotomy. We are both

very concerned about the risks associated with the surgery, and the likelihood

it won't resolve the condition. He really isn't sure he wants to do the surgery

at this point.

> >

> > Does anyone know of an achalasia expert in the SF Bay Area or Northern Cal.?

> >

> > Has anyone been helped by acupuncture & Chinese herbal medicine? Hubby will

try that for the first time this week.

> >

> > Thanks in advance for your help.

> >

> > Best,

> >

> >

>

[Guest guest]

Hi!

My experience with acupuncture also was doctor-dependent. The first was European

trained in China, and after three weeks and $2000 it aggravated my condition to

the point of being absolutely unable to swallow even liquids for days, losing

weight and struggling with a cup of coffee for over an hour.

The second on (who I've been working with for over three years now) is

originally from China and also is a Qi Gong/Tai Chi Master, and I started to

nitice slow improvements in a few weeks. After two years I am eating some food

with the help of a blender, some without (soup, buckwheat) but need to drink a

lot. Still can't eat solids socially (coffee/soup is fine) but what a huge

progress!!

I am on the East Coast, so this doctor is proabbly too far from SF, but just

wanted to give you some feedback...

> > >

> > > Hi everyone,

> > >

> > > I'm new here. My husband was diagnosed with Achalasia a few weeks ago

after struggling with pain and increasing difficulty swallowing/eating over the

past 1.5 years.

> > >

> > > I'm so glad to have found this group!

> > >

> > > we just saw a surgeon today who is recommending Heller myotomy. We are

both very concerned about the risks associated with the surgery, and the

likelihood it won't resolve the condition. He really isn't sure he wants to do

the surgery at this point.

> > >

> > > Does anyone know of an achalasia expert in the SF Bay Area or Northern

Cal.?

> > >

> > > Has anyone been helped by acupuncture & Chinese herbal medicine? Hubby

will try that for the first time this week.

> > >

> > > Thanks in advance for your help.

> > >

> > > Best,

> > >

> > >

> >

>

[Guest guest]

I can really relate to what you and your husband are going through. The whole

concept and the prospect of surgery just seem so new. It took me years to get

comfortable with the whole idea myself. I finally, finally went for a mytomy

last month and was amazed how quickly I bounced back from the surgery and how

little discomfort I experienced.

When I was first diagnosed, I was very hopeful about the prospects of treatment

via alternative medicine. I don't have specific information, but the best

resource along those lines that I found was an article on treating achalasia via

acupuncture published 10+ years ago in the Journal of Traditional Chinese

Medicine. Sorry, I don't have the specifics as to the date, volume, etc. I had

to make a visit to the library to find this. I do remember, though, that the

article points out specific acupuncture points and treatment techniques used for

achalasia. This might be of some value.

Ultimately though, the symptoms persisted - sometimes improving and sometimes

worsening. I finally opted for dilatation - performed while I was so well

sedated as to not recall the experience at all. However, by the time I was

treated, my esophagus had already become dilated and tortuous. Mind you, it was

probably 5 years of 'dealing with it' between the time of my diagnosis and my

first dilatation.

Instead of repeating myself, I've pasted a link to a recent post I wrote which

summarizes my experience and will hopefully serve as a caution to others who

delay 'treatment': achalasia/message/60514

It took a lot of courage and faith for me to become comfortable with the idea of

surgery. I sought the most experienced surgeon I could find, one who had done

hundreds of these procedures and then just gave in to the process.

I read the same articles that everyone else read but when choosing

practitioners, have sought those who seem to offer even 'better' (lower) risks

than what is published. Doctors keep their own stats.

So when I went for a dilatation, for example, I asked my doctor if he had ever

encountered a situation where he perforated an esophagus. The 'typical' perf

rate is some low number like 2%-5% (I forget). My doctor said he NEVER had a

perforation problem - and he does many, many dilatations.

If your husband is willing to drive to Washington (and your insurance company

obliges) I would recommend meeting Pellegrini. He is a recognized

'expert' in achalasia:

http://www.medical.washington.edu/bios/view.aspx?CentralId=22127.

Best to you & your husband ..

--Rich (Chicago)

> > >

> > > Hi everyone,

> > >

> > > I'm new here. My husband was diagnosed with Achalasia a few weeks ago

after struggling with pain and increasing difficulty swallowing/eating over the

past 1.5 years.

> > >

> > > I'm so glad to have found this group!

> > >

> > > we just saw a surgeon today who is recommending Heller myotomy. We are

both very concerned about the risks associated with the surgery, and the

likelihood it won't resolve the condition. He really isn't sure he wants to do

the surgery at this point.

> > >

> > > Does anyone know of an achalasia expert in the SF Bay Area or Northern

Cal.?

> > >

> > > Has anyone been helped by acupuncture & Chinese herbal medicine? Hubby

will try that for the first time this week.

> > >

> > > Thanks in advance for your help.

> > >

> > > Best,

> > >

> > >

> >

>

[Guest guest]

Dear ,

What I meant to say is that you can't just go to any acupuncturist/herbalist. I

was lucky to find a really good one here.

And I did have a dilatation last year. It is best not to wait too long to take

action. I went for a year of continuously worsening symptoms that prevented me

from getting proper nutrition and liquids down and not getting restful sleep at

night.

I saw my TCM doc last night and he explained to me that, according to TCM, the

problem is in the brain...not having enough moisture. And even though I am

feeling good, I still have issues with dryness and heat, and my barium study may

not show a significant amount of progress. It may take another 6 to 12 months

for me to go on maintenance dosage with the herbs and stop the acupuncture. And

yes, this is expensive...not covered by health insurance.

How old is your husband?

In health,

Eva

>

> Thanks and Eva for sharing your experiences and insights. (We are both a

little shell shocked and overwhelmed as we try to figure out what to do next.)

>

> Best,

>

>

>

>>

[Guest guest]

Another thanks to all those who have posted in response to my message.

We are scouting around for a specialist here. We talked to a doctor friend for

advice on the weekend who said the surgery is no joke, and echoed what you all

have said about finding someone who specializes in it.

I anticipate a battle with the insurance carrier. California Pacific doesn't

seem to have any specialists in this field. We will be exploring UCSF and

Stanford, neither of which is in our network of providers.

Eva - my husband is 49.

Best,

> >

> > Thanks and Eva for sharing your experiences and insights. (We are both

a little shell shocked and overwhelmed as we try to figure out what to do next.)

> >

> > Best,

> >

> >

> >

> >>

>