Re: Steinnon/hiatus hernia

[Guest guest]

At 02:00 AM 8/20/2001 +0000, genehsa@... wrote:

>...We have been reading in much detail Dr. Steinnon's information

>concerning " achalasia " and its misdiagnosis....

It has been a while since I have read that page, but as I remember it, he

said nothing about autoimmune factors. I have seen reports on other sites

that researches have seen the nerve cells in question being attacked by the

immune system. He seems to have an all or nothing approach to the causes of

achalasia. Perhaps he is right that a hiatus hernia can cause achalasia. It

does seem like he makes a good case for it. However, even if that is the

case, there may be many causes of achalasia.

Jerry

[Guest guest]

Hello Flora,

I didn't receive a response from Dr Steinnon to that post. However,

several weeks later I emailed him directly and he did respond,

although I didn't post that here at the time.

He didn't answer my specific questions in detail, but offered to see

me/read my xrays. Since we're both in the same city, I really wanted

to do it. But I've been in denial-mode for a while and never got my

act together to see any doctors whatsoever since my balloon

dilation. I'd still like to go have him read my X-rays sometime.

Here's what I wrote to him:

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

Hello Dr Steinnon,

I saw your post to the egroup Achalasia in September, and I have also

read your paper on the Internet (although I didn't entirely

understand it). I know you're probably very busy but I am hoping you

will have time to read and reply to this email.

I was diagnosed with Achalasia last year when I was 30 years old. My

symptoms are the typical swallowing symptoms and I had the standard

tests of barium swallow, motility manometry test, and endoscopy.

I find your information makes more sense than what my doctor tells me.

My doctor is recommending the myotomy and I have had one unsuccessful

balloon dilation.

The information you posted on the egroup site states, " Briefly, a

strong contraction of the LM can pull the top of the stomach into a

hiatus that is too small for it where it gets caught causing an

obstruction of the fundus that is misdiagnosed " achalasia. " All you

people have misdiagnosed intestinal obstruction. None of the fanciful

conventional theories of achalasia make any sense. "

Are you aware of any tests to detect that this is the case? And are

there any GI doctors who you are aware of who ascribe to this and

treat accordingly? Any doctors you can recommend?

I am in Madison, Wisconsin, and have had treatment at the UW so far,

although I have no confidence that the doctors I have seen really know

much about this problem and they have never gone beyond the standard

line on anything.

Your suggested treatment, pulling the stomach out of the hiatus, makes

me wonder if this obstruction can be seen on the endoscopy. The

barium swallow? Or perhaps some kind of cat scan? What should I or

my doctor look for with this hiatal obstruction?

I really hesitate to have a surgical procedure (myotomy) that

permanently damages my esophagus in the effort to treat a symptom and

not the cause of a disease/condition/whatever. Thanks for any

information into this alternative that you can provide. I'm getting

kind of desperate due to the terrible discomfort and embarassment that

this condition is causing.

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

And he replied (I hope he doesn't mind my posting his email):

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

Dear ,

It sounds as though you understood my achalasia chapter very well.

There is some hope for recently diagnosed cases, but you must

understand that I do not treat them. Worse, surgeons are not about to

be instructed by me. They are paid to do procedures as they learned

them during their long and arduous training. No doubt they do them

very well, but it is not their business to question why.

I would be glad to look at your x-rays if you want to call my office

for an appointment (255-6262) and talk to you if I have any

suggestions. I am interested in your disease and there will be no

expense involved.

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

> ,

> We have been reading in much detail Dr. Steinnon's information

> concerning " achalasia " and its misdiagnosis. My husband and I

think

> that this is an extremely important position and requires a

thorough

> incorporation into any decision for treatment.

>

> We appreciated your comments in your posting #268. We can find no

> evidence of a response to this from Dr. Steinnon. Did he respond

to

> your many pertinent questions either by posting or direct

> communication?

>

> We want to present his information to our physicians hoping to find

> someone who will take time to read and evaluate it. My husband

very

> much agrees with your statement taken from Dr. Steinnon's writing

> that correcting the hiatus hernia could be a cure for " achalasia "

is

> quite possible and needs to be considered by each of us that has

this

> disorder.

>

> The source of this information can be found in this

> under " Bookmarks " in the left margin-- " Achalasia and Its

Misdiagnoses

> by Dr. O. Arthur Steinnon " . I think we owe a great deal to jennlee

> who put all this information there for us.

>

> Flora Alyce

[Guest guest]

My newest thought on this is that what doctors call " achalasia " is

maybe a symptom that several unknown diseases/conditions/etc can

produce. My cause may or may not be the same as someone else's.

I haven't seen this autoimmune information - if you have some source

links on it, I'd love to see them. It makes sense if the nerves are

truly the cause of the initial problem.

I've suspected (I don't really have much to back this up though) for

a while that achalasia is caused by some unknown viral infection. I

was reading a book that discussed the theory that bacterial and viral

infections may be responsible for a lot of health issues where the

cause is not known. They are discovering more and more that this is

the case with other things.

Either that, or I ascribe to Dr Steinnon's LM contraction/hiatus

theory. That also makes a lot of sense to me and when I read it, I

recall feeling I fit his theory well.

> >...We have been reading in much detail Dr. Steinnon's information

> >concerning " achalasia " and its misdiagnosis....

>

> It has been a while since I have read that page, but as I remember

it, he

> said nothing about autoimmune factors. I have seen reports on other

sites

> that researches have seen the nerve cells in question being

attacked by the

> immune system. He seems to have an all or nothing approach to the

causes of

> achalasia. Perhaps he is right that a hiatus hernia can cause

achalasia. It

> does seem like he makes a good case for it. However, even if that

is the

> case, there may be many causes of achalasia.

>

> Jerry

[Guest guest]

At 05:52 PM 8/20/2001 +0000, wrote:

>My newest thought on this is that what doctors call " achalasia " is

>maybe a symptom that several unknown diseases/conditions/etc can

>produce. My cause may or may not be the same as someone else's.

That is the way I am looking at it now. I see people on this list that seem

to have too many rare conditions in common, yet there does not seem to be

one group of such conditions. My case seems to very different from most. It

has progressed very slowly over many years, at lest 25 and possibly as many

as 40. If it does go back 40 that would be interesting because I have other

problems that have been with me since I was a child.

>I haven't seen this autoimmune information - if you have some source

>links on it, I'd love to see them. It makes sense if the nerves are

>truly the cause of the initial problem.

Or, at least in some cases it is the initial problem. Perhaps there are

others, hiatus hernia possibly one of them. I can't find the source I was

thinking of, but I have listed below some sites that note the autoimmune

theory. They aren't as definite about there being an autoimmune problem as

what I was thinking of. Some of the evidence cited could also be from the

body fighting an infection. Below those I list some sites that have cases

and evidence of inherited causes. The last one is interesting because some

of us have noted dry eyes and other tear related problems.

Jerry

" Another theory invokes an autoimmune pathway. This mechanism has been

suggested because of the association between achalasia and HLA subtype

DQw1, as well as the recent detection of an antibody directed against the

myenteric plexus "

http://www.gastrotherapy.com/education/cme/t030108.asp

" The observations that achalasia is associated with HLA-DQw1 and that

affected patients often have circulating antibodies to enteric neurons

suggest that achalasia may be an autoimmune disorder "

http://www.uptodate.com/patient_info/topicpages/topics/6707E5.asp

" Autoimmune disease or hidden infection is suspected. "

http://www.findarticles.com/cf_dls/g2601/0000/2601000007/p1/article.jhtml

" Available data suggest hereditary, degenerative, autoimmune, and

infectious factors as possible causes for achalasia, the latter two being

the most commonly accepted possible etiologies (1, 2). Pathological changes

found at autopsy or from myotomy specimens are in the esophageal myenteric

(Auerbach's) plexus with a prominent but patchy inflammatory response

consisting of T-lymphocytes and variable numbers of eosinophils and mast

cells, loss of ganglion cells, and some degree of myenteric neural fibrosis... "

http://www-east.elsevier.com/ajg/issues/9412/ajg1639fla.htm

" Pseudo-obstruction related to inflammatory neuropathies includes

paraneoplastic syndrome, Chagas' disease and idiopathic degenerative

disease, according to the paper. Double-label immunohistochemistry testing

of a patient's serum can demonstrate the presence of enteric neuronal

antibodies. "

http://www.gastro.org/reuters/2000/July/17/20000713scie001.html

" There is also degeneration and disappearance of peripheral vagal nerve

cells in the presence of lesions in the dorsal vagal nucleus in the brain

stem. "

http://www.mc.vanderbilt.edu/peds/pidl/gi/achala.htm

Evidence of Inherited Causes.

" ACHALASIA, FAMILIAL ESOPHAGEAL "

http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?200400

" ACHALASIA-ADDISONIANISM-ALACRIMA SYNDROME; AAA "

http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?231550

" An association with adrenal glucocorticoid deficiency and alacrima (triple

A syndrome or Allgrove syndrome) has been described in children with

achalasia . It is possible that a variant of this syndrome is present in

adults since in one report, 4 of 20 (20 percent) of adult patients with

achalasia were found to have deficient tear production. "

http://www.uptodate.com/patient_info/topicpages/topics/7332E5.asp