Non Invasive Treatment for Achalasia - Memo

[Guest guest]

Hi All,

I have just joined the group and would like to share my experience

of Achalasia with you...

Below is a 3000 wd memo I have spent much time producing....

It is self explanatory

Non Invasive Treatment for Achalasia Neil A Ham 19-04-06

As a diagnosed achalasia patient I have produced this memo to share

my experience of the condition with the hope to help others. The

memo focuses on the use of non invasive treatment for the condition,

which I have received in the last 2 years. The outcome being almost

complete removal of the achalasia symptoms I suffered.

Starting from the beginning, I began to suffer from oesophagus

spasms (as with most patients) some years ago whilst travelling

Asia. The spasms got increasingly worse (mainly during the night)

over about a 2 year period. During this time, I found the best way

to relieve the spasms was to drink very cold water, and to try and

relax my mind.

Around this time the swallowing problems began, first with solids

then with fluid. As recommended by my GP/specialist I undertook a

barium meal xray. The xray highlighted that my swallowing mechanism

was `out of sequence'. The condition was also confirmed by a

Manometry. The NHS specialist explained that my options were either

to have balloon dilation or surgery. Non of which appealed.

The most confusing thing was the lack of information/understanding

of the condition, which I think may be due to its rarity (i.e. there

is no big demand for research etc). Having done some general

research on the internet etc, it became apparent that the balloon

dilation and surgery techniques haven't really changed for many

decades. Despite my confidence in the NHS, I couldn't help feel that

the treatments seemed a little draconian and reactionary. Although I

didn't rule out dilation or even surgery as last options, it seemed

to me obvious that I should spend some time (and hopefully not too

much money) seeking non Invasive treatment. I discussed this with my

GP whom fully supported the idea. However it is noteworthy that the

NHS consultant did not share the same enthusiasm (I am honestly not

sure of his reasons why).

So I went away (usually clutching a cold bottle of water) to

research the possible alternative treatments. The first interesting

thing I found was an article on acupuncture treatment for achalsia

on Alsatian dogs. Which apparently resulted in 75% success in all

cases. With this, I approached the NHS re acupuncture, but as the

practitioner I approached had no procedure for the treatment,

nothing came of it. The obvious next step was Chinese therapies.

After a few consultations I was scared off, I think due to a lack of

professionalism (or at least as I see it); and of course the

expense.

Close to this time my symptoms were at their worst, the only way I

could get food down was to literally force it down with copious

amounts of fizzy water (or similar). I think I actually didn't use

any swallowing action at all. I went on to research diet supplements

and vitamins etc, which led me to trying high strength magnesium and

vitamin B tablets. In the first 2 weeks of taking these, my symptoms

were vastly improved, the pain stopped and my swallowing returned to

almost normal. Thinking I had found the `cure' I carried on, but

after about 3 weeks the effect from the tablets began to weaken as

my body adapted (as possibly should be expected). Nonetheless, it

was a nice break, and it proved to me that my body could function

normally given the chance, even though I hadn't swallowed properly

for almost a year.

Most achalasia studies you will find suggest that the oesophagus is

subject to nerve damage and that this reduces or even removes

peristalsis. Comparisons are also made to Chaggers disease (where I

don't question that nerve loss is apparent). Although I don't

dispute that evidence may exist to support nerve damage loss with

achalasia, I wasn't convinced that my personal lack of swallowing

action was as a result of nerve failure. The effect of the vitamins

had suggested this to me, I am not a doctor, but surely nerves just

cant start working again if they have supposedly `died'.

From the start of my condition I always felt that it was stress

induced, and that my mind was playing a key part in the

disfunction/suffering. We all know that the mind (or whatever you

like to call it) plays a role in brain function, and that the brain

produces chemicals to help the body function. Although I had no

proof, I was convinced that the stress (mostly to do with work) was

causing my brain not serve my body correctly. So I figured if I

could get stability back in my mind I could begin to get my body

back into balance.

To add quality to this memo, it might be worth mention of a few

simple actions I took to help the condition. Firstly, I always found

it easier to eat whilst standing or moving around. I often found it

embarrassing in company to do so, but in the end I figured it was

better than suffering, so my advice is just to get on with it. The

key is to not make a big deal of it. As also mentioned above, I

found fizzy drinks would help; I always felt like the bubbles were

good stimulus. Without doubt I found the only way to stop the spasms

was to drink cold water upon their onset; but I expect this might

vary from individual to individual.

Another symptom of achalasia is reflux of fluid during the night. In

my case no acid was present, it was just liquid that couldn't drain

properly. This was the last symptom to occur in my case, but I

believe this is usual. To avoid coughing, and breathing in fluid

(thus contaminating my lungs) during the night (due to lying down) I

found that I could easily regurgitate (not fully, just a small

amount) any residual fluid. Although this removed the symptoms, I

knew that it could only be a temporary measure. I figured the reflux

would improve, if I could resolve my swallowing issues. It might be

noteworthy that I also made habit to drink lots of water every

night. I did this to move any food down, plus leave my oesophagus as

clean as possible. One thing I always thought was important was not

to drink/eat acidy stuff before bed (unless washed down properly),

as not to leave any irritants in my throat.

Back to treatment etc: Whilst surfing the net I came across a

posting which had been produced by a local (luckily) chap whom is a

Bowen Practitioner. The Practitioner (Bernard) had been involved

with this non intrusive therapy for several years, and had been

researching its use to treat achalasia. I am sure his research

stemmed from the fact that his son has been diagnosed (but was

unfortunately across the Atlantic). I met with Bernard and I agreed

to be his patient (a kind of guinea pig really), I thought why not,

the treatment was completely non invasive. Bernard began by telling

me his theories about achalasia. Although not a medical doctor, I

could tell that he possessed professional ability and that he had

impressive knowledge of the human anatomy, especially neurological

and muscular systems. Bernard believed that the associated

swallowing difficulty is likely to be just a result of the muscular

spasms, which if frequent enough, will dissuade the swallowing

muscles to function properly. The reason being that muscles are

versatile and will adapt to their surroundings; thus they adapt to

the environment caused by the spasms (which is of course abnormal).

In the case of people suffering from spasms, their swallowing

muscles would become more redundant, and forget their usual

function. Bernard believed that as muscles are known to contain some

kind of memory (e.g. a chicken running without a head; child birth,

or a person riding a bike etc), then if the spasms could be made to

stop, then the swallowing muscles could regain their memory; thus a

normal swallowing function could be resumed. This seemed like good

old common sense to me and was the only insightful knowledge I had

received in 6 months of research. So I had a couple of Bowen

sessions. The sessions involve various thumb movements around

arrangements of muscles. There is much information to be found on

the net to offer more detail of the treatment, but I kind of

considered it to be like `muscular re-setting'. The muscles are

manipulated in such a way that they kind of `spring back' into their

natural position. The science of Bowen goes into the functions of

the muscle membrane and its relationship with the nervous system,

but that's about the extent of my medical understanding. The

sessions take up to 2 hrs as the body is left to rest, and are very

inexpensive. I knew from the outset that Bernard was serious about

helping me and other A sufferers as he offered the treatment to me

for free. Although as soon as the improvements started I insisted on

supporting his cause.

Ok, the question remains as to what causes the spasms. Bernard's

research of achalasia patients led him to believe that the

spasms/condition could result from different sources. I thought: why

not? People suffer from similar muscular complaints resulting from

very different injuries/conditions. Bernard told me that he had

spoken to sufferers whom had recently undergone un-associated

surgery, or suffered various accidents; all of which shared the same

symptoms. In my case, Bernard thought that my posture (which is

really bad) could be a contributing factor; along with the stress I

was undergoing at the time (stress is known to cause spasms).

Bernard's theories go a lot deeper into the Autonomous Nervous

System (ANS) in particular the Vegus Nerve, but you will have to

speak to him about that, I wouldn't like to document inaccurate

medical information. It does get very interesting though, especially

the connections between swallowing and fear/stress. Also that the

parasympathetic nervous system (which controls fear/stress) controls

swallowing muscles at night (when spasms seem to occur most).

After the first two Bowen Sessions I began to feel movement in my

oesophagus whilst eating. I found that although I still needed lots

of fluid to instigate it, the swallowing action was starting to

return. However, although I felt a dramatic improvement, eating

still felt abnormal. Upon till this time it had been almost two

years with virtually no swallowing action, and although I knew

things were improving, I instinctively knew that it would take a

while. For some reason I knew that I would have to learn to swallow

again; just like accident patients learning to walk or use limbs.

Unfortunately though, unlike limbs, the oesophagus can not undergo

physical therapy, so I decided that I would try and exercise my

oesophagus by eating/drinking small amounts as often as possible

(despite the frustration).

Continuing with the Bowen sessions I found that drinking began to

feel more normal; but for some reason drinking whilst eating, was

still difficult. Nonetheless I knew progress was being made. It was

at about this time that Bernard suggested enforcing the physical

treatment (Bowen) with some holistic therapy to try and break down

any mental barriers. Not only had my body adjusted to the lack of

swallowing action, but my mind had accepted that I couldn't swallow

also, so similarly needed to re adjust. The idea was to assist the

healing process with positive enforcement. I was introduced to a

practice called Nero-Logic-Programming (NLP). It sounds complicated

but it is incredibly simple. The sessions I undertook helped me to

prepare positive mind sets (pictures in my mind/healthy feelings)

that I could instigate with practice. However, the second and final

NLP session I undertook (not many were required) had the most

impact. I was guided to map out my own life and the lives of my

parents and other people close to me, leading up to the point where

I believed the condition started. To cut a long story short, turning

these life milestones into tools allowed the practitioner to

manipulate both my past, present and future (well at least as my

mind saw it). This session was without doubt very powerful and

seemed to settle my subconscious rumblings. One thing I can tell you

is that prior to undertaking Bowen and NLP I had no interest in

complementary/alternative or any other therapy. I am an engineer

(nuts and bolts type of chap) and consider my self to be a

pragmatist so I kind of thought that anything other than

conventional medicine was `way out'. I couldn't have been more

wrong. Everything that I have experienced has been both logical and

practical. If therapies such as Bowen/NLP etc could be properly

combined with conventional medicine then in my mind this would be

logical progress.

During my research I did find that although Achalasia is rare,

swallowing problems are not. I think there is potential that

Achalasia could just be a condition which occurs following long term

swallowing difficulties (from various lesser severe conditions etc),

and that it could be the case that some peoples symptoms might

simply recover before getting any worse; thus avoiding it. Maybe

Achalasia sufferers are a minority of people whom are

psychologically affected by the swallowing issues/ spasms; thus

adding to the severity of the condition? This relates to what I

mentioned earlier about feeling my mind and body were out of

balance.

Following my initial progress I did fall to the miss-fortune of a

gastric infection whilst in Italy on holiday. I never did know what

to put it down to – either some bad seafood or something to do with

Achalasia (although this was the first and only infection I have

had). This had an obvious impact on my swallowing. I couldn't eat

without severe pain for a few days and was getting worried. The NHS

doctors were recommending a dilation, but the thought of it with the

pain I was suffering was not exactly welcoming. Luckily, I suggested

trying Nitro spray (the same stuff angina patients use); I had read

on the net that it can help relax the gastric system. Which it did!

Although the side effects (head ache/dizziness) were not very nice;

and apparently its effectiveness runs out if used often. Nonetheless

it did assist my swallowing and was use enough for a week until the

antibiotics had begun to work (sufferers: if you try the spray

please don't get carried away with it, you might really need it one

day like I did). After the infection (a week or so) I felt myself

eating more gently, which really helped with the swallowing action.

This then set a foundation for me to build up slowly the amount of

food I swallowed, rather than forcing food down with fluid etc. I

figured by taking it very slowly and increasing food amounts

progressively it was the only way that my body could help remember

what was `normal'. I often think that the infection could have been

a blessing in disguise.

It is now a year since the infection, about 2 years since my first

Bowen session, and about 4/5 years since my first symptoms.

Following about a dozen Bowen sessions, 2 NLP sessions and 2

hypnotherapy sessions (also done by Bernard, but very lucid/non

intrusive) I am as I sit here today. I can now eat/drink anything

with little fuss; the worst is that I have to stand or lift my arms

up occasionally to ease things along a bit, but then lots

of `normal' folk do. I haven't had any spasm pain for about 2 years

and am something close to `normal'. I am still in the habit of

drinking plenty of water at night to flush my system clear as I

sometimes feel that food/fluid is not fully draining (although

recently this feeling is fading). Maybe I just drink the water as a

precaution to clear acidy food etc. In addition, I no longer have to

regurgitate any fluid as the coughing has stopped. I often think

that retention issues may stem from the oesophagus becoming slightly

enlarged (as often reported) as finer materials like fluid can slip

back against the muscle. If the theory of muscle memory/ reformation

is correct (which it appears to be) then these symptoms will improve

as muscle structure is reforming. It is just unfortunate that as no

physio therapy etc can be done that this takes time (1-2 years).

I have no doubt though that my swallowing action has returned due

principally to my Bowen treatment. As I see it, the Bowen gave my

muscles the correct messages for the work to begin. But the holistic

approach was also key; as discussed above: the impact of the

Achalasia on my mind also needed healing.

One thing I have realised is that there is a lot of brain

function/concentration that goes into eating/drinking; next time you

watch a friend eat, just look at the concentration on their face.

It's a lot of effort, they just don't realise it, because they take

it for granted, just like I and maybe you did. The hardest part of

healing I think was re determining what `normal' is/was. Once you

have suffered from a prolonged condition such as achalasia, I don't

expect that you could ever take any improved function for granted

again; hence, `normal' has to take on a new meaning.

I am hoping that this memo will help others in their pursuit to get

better. For newly diagnosed A sufferers I strongly recommend that

you consider Alternative therapy before dilation or surgery. Then

you can make up your own mind…The surgeons are not going anywhere…

You may feel much better if you discuss this with your GP to get

their support.

I have put much time and effort into this memo, to try and tie all

of my issues into one place, but hopefully to also save time etc re

future emails/discussion etc.

That's about it, I am sure I haven't missed anything….

Best of luck for the future,

Neil

[Guest lauren_b_sag]

Wow! I really have hardly any words to say... I've had symptoms for about a year and was diagnosed about a month ago. I to was not interested in jumping into surgery or dilation. I have days where I'm hopeful, and days where I'm incredibly discouraged--especially after talking with specialist or reading medical articles that say there is no cure and surgery is the only option. Finding this post couldn't have come at a better time for me as I embark on my recovery journey! I currently have pursued Acupuncture and the help of a Naturopath (only one session so far) and a special form of massage therapy that deals with internal organs and the esophageal muscles (sounds similar to your BOWEN treatments) and I am pursuing (have an appointment next week) Yoga Therapy to begin learning meditative practices and overall calming/stress relief techniques. I am also pursuing the mind/body connection with my counsellor. Your post here gives me SO much hope for the avenues I am pursuing and so much hope in general for my overall "condition". I would love to point out every paragraph I love but there are too many! But I love the mind/body connection stuff as well as the idea that this may not be a "degenerative nerve disorder" and rather our muscles needing to be re-trained. I am only 26 and definitely am not ready to succumb to a lifelong condition of not being able to eat. And your post gives me hope. 

 

I realize this was written YEARS ago and I am sad to see no one else has commented (and hoping others have seen it at least) and I realize you may not even see this comment, but I had to say something. Thank you for taking the time and I do hope you are still doing well. 

And to anyone else out there who has been diagnosed with Achalasia, please don't give in or give up on hope. There are treatments out there I believe and surgery is not the only option. It is one of the options that can be used as a final resort; but that should only come after actively pursuing these other avenues!