19 dilations?

[Guest guest]

Everyone is entitled to his/her mode of treatment. But aren't 19 dilations

excessive? I mean, if the goal is to cause perforations and general

gut-cleaning, go for it . I've had advanced achalasia for over 33 years, and had

every size of dilator rammed through my LES. Not one improved improved

swallowing or pain, even though ripping and slight perforation occurred . The

most efficacious treatment with the longest-lasting benefits was pain

management. Currently, we have a problem with chronic pain sufferers' needs

being subjugated to our DEAs misguided efforts to criminalize the Doctors who

treat pain patients. Hopefully some of you with Refractory achalasia will join

us in the fight to advance the interests of chronic pain patients and

physicians.

[Guest guest]

Hello, Steve.

Steve wrote:

>

> Everyone is entitled to his/her mode of treatment. But aren't 19

> dilations excessive? I mean, if the goal is to cause perforations and

> general gut-cleaning, go for it .

>

Having lots of dilatations works for some people and their doctors. We

may wonder about if it was the best way to go but as you said they are

entitled and in their own lives it may be the right thing.

> I've had advanced achalasia for over 33 years, and had every size of

> dilator rammed through my LES. Not one improved improved swallowing or

> pain, even though ripping and slight perforation occurred .

>

" Advanced achalasia " may not be treatable by dilatation or myotomy in

some cases so at this point, while they may be a great options for

others, for you and those like you maybe not. We don't want to confuse

those who may benefit from it just because it won't work for some. Also,

some people, you may be one I don't remember, have spasms even though

they have been treated with dilatation or myotomy that don't diminish

over time. The same spasms can also cause trouble swallowing even if the

LES has been relaxed. Pain can also be from nerve damage and be chronic.

So, right, pain can be a problem after treatments even if they helped

swallowing. Fortunately most people are helped both in swallowing and

pain with successful treatment.

> The most efficacious treatment with the longest-lasting benefits was

> pain management. Currently, we have a problem with chronic pain

> sufferers' needs being subjugated to our DEAs misguided efforts to

> criminalize the Doctors who treat pain patients.

>

I am a strong believer in pain management. If pain management is your

best option then I support your efforts to get it. Pain management can

be important for those with achalasia who have spasms and neuropathic

pain. I don't see how there could be any doubt about that by anyone who

has followed this support group's messages. Last summer after my

accident I had nerve damage in my feet. They were wrapped in splints and

bandages but the toes were exposed. If a bed sheet was placed on the

toes I would feel tremendous pain throughout my feet. That was because

the nerves were hypersensitive and also sending confused signals to the

brain, so just a touch of a bed sheet was enough for the brain to

interpret it as tremendous pain throughout the feet. It was that way

even though I was on extra doses of Dilaudid, with Flexeril and another

mind altering drug to prevent nausea from the other drugs. Achalasia can

cause hypersensitive neuropathic pain. I don't have that in my esophagus

but I sure have an appreciation for what that kind of pain could be

like. Six months later I still have some neuropathy in my feet and can

feel an electric tingle if I touch them just right.

> Hopefully some of you with Refractory achalasia will join us in the

> fight to advance the interests of chronic pain patients and physicians.

>

I don't think our achalasia has to be refractory to have an interest in

this. I don't consider mine refractory at this time. Maybe someday it

will be. Also, it isn't like all doctors are against treating the pain.

If you search the messages of this group you will find that members have

discussed pain medications their doctors have given them. Also, some are

taking antidepressants for chronic pain, not because they are depressed.

There are doctors out there that are willing to treat both the acute and

chronic pain that can be part of achalasia. There are also those among

us that chose not to fight that battle any more and opted for an

esophagectomy even though they may have been swallowing well enough. I

am not saying people should or shouldn't have an esophagectomy because

of pain. I know you choose not to. I respect your decision. Personally I

don't like the way strong pain meds make me feel, dull like I am missing

part of my soul. But then pain kind of does that too, so the decision

for me would be a hard one. I want to be full of life though and pain or

medications or a bad surgical outcome could be a problem. No easy

answers for me.

OT: Speaking of the soul and what we choose to do, while I was

recovering from my accident I read the book, The Most Human Human. I

recommend it to those that have a broad interest in technology and

philosophy. It isn't a book for everyone. The main topic has to do with

artificial minds/intelligences that try to be human like. That also

leads into what it is to be human. It helped me clarify in my own mind

where I have been the most alive. This support group is one of those

places. We share life here. Not just social games of protocol and reflex

responses. Before reading the book I had thought about building an

achalasia chat box and dropping all the PubMed achalasia data into it.

It still sounds like a fun idea but I am sure I will never get around to

it. My daughter is getting a double degree this may, in psychology and

computer science and will be working on her PhD next year researching

computers and emotions. She gave me the book because of some talks we

had. Anyway, a chat box would be interesting but it is the things that a

chat box can not do that draws me here. You people are so alive, so

human! Didn't Doctor Who say that?

notan

[Guest guest]

Hello notan,

Thank you for the thoughtful response.

No one wants to come across as dictating a form of treatment for achalasia.

my main point is a risk assessment must be considered between treatment that

works versus the treatments with an increased likelihood of failure.

Dilations are rather rudimentary mechanical manipulations of the LES. As you

pointed out, with smaller dilators, there might not be sufficient dilation to

effect opening or relaxation of the LES. But with increasing frequency or larger

dilators, the risks would seem to compound with each procedure.

Likewise, after 33 years of having failed results with my LES blown-up, ripped,

injected with botox, sliced, diced and wrapped, I'm hesitant to pursue further

procedures or surgery due to predicted risks and complications. The esophagus is

already massively enlarged and twisted; peristalsis isn't returning. And I was

warned by GI's of signficant damage to the chest cavity if perforations occurred

to the LES or esophagus from further manipulations.

Probability of success is another factor. Around 90% of achalasia patients

report some benefit from initial dilations or myotomy surgery. in my case, I

haven't from repeated dilations, injections, myotomies or fundoplication. So

probability of success for me is (0.1)/\n, where n=# of procedures performed, =

<<1%. And at less than 1% probability, diminishing rate of return (success)

exists for every further treatment. I wouldn't be contemplating an esopahectomy

with the risks of massive chest infections, surgical complications or

unpredicable results - when pain management allowed this condition to be

tolerable

And yes, the hypertensive LES, spasms, structural and nerve damage can create

significant pain and difficulties ingesting foods and fluids. Pain management

does aid in lessening pain to enable easier

passage of foods and increased life functions. Typically opioids prescribed for

chronic pain do not cause cognitive impairment, physical or mental damage.

Unlike you mention, doctors are not as willing to treat chronic pain as they do

other chronic conditions. The DEA's tactics of using legal, regulatory and

criminal sanctions against physicians prescribing controlled substances create

an indimidating environment known as the " Chilling Effect. " When the DEA

investigates and arrests thousands or physicans - and doctors cannot practice

medicine without a DEA licence - doctors will not want to assume to risk

practicing pain management according to the medical standard protocol. As a

society we need to minimize the hype regarding celebrity addiction and

prescription drug abuse since these fuel political tension and create

intractable, irrational moralistic policy. We tend to transfer the focus from

the few aberrations to the many chronic pain patients who are left to suffer in

the wake of the DEA's abusive law enforcement powers.

Of course these are just my experiences with refractory achalasia. When you find

something that works, why undertake repeated, failed or likely risky treatments?

Steve

> >

> > Everyone is entitled to his/her mode of treatment. But aren't 19

> > dilations excessive? I mean, if the goal is to cause perforations and

> > general gut-cleaning, go for it .

> >

>

> Having lots of dilatations works for some people and their doctors. We

> may wonder about if it was the best way to go but as you said they are

> entitled and in their own lives it may be the right thing.

>

> > I've had advanced achalasia for over 33 years, and had every size of

> > dilator rammed through my LES. Not one improved improved swallowing or

> > pain, even though ripping and slight perforation occurred .

> >

>

> " Advanced achalasia " may not be treatable by dilatation or myotomy in

> some cases so at this point, while they may be a great options for

> others, for you and those like you maybe not. We don't want to confuse

> those who may benefit from it just because it won't work for some. Also,

> some people, you may be one I don't remember, have spasms even though

> they have been treated with dilatation or myotomy that don't diminish

> over time. The same spasms can also cause trouble swallowing even if the

> LES has been relaxed. Pain can also be from nerve damage and be chronic.

> So, right, pain can be a problem after treatments even if they helped

> swallowing. Fortunately most people are helped both in swallowing and

> pain with successful treatment.

>

> > The most efficacious treatment with the longest-lasting benefits was

> > pain management. Currently, we have a problem with chronic pain

> > sufferers' needs being subjugated to our DEAs misguided efforts to

> > criminalize the Doctors who treat pain patients.

> >

>

> I am a strong believer in pain management. If pain management is your

> best option then I support your efforts to get it. Pain management can

> be important for those with achalasia who have spasms and neuropathic

> pain. I don't see how there could be any doubt about that by anyone who

> has followed this support group's messages. Last summer after my

> accident I had nerve damage in my feet. They were wrapped in splints and

> bandages but the toes were exposed. If a bed sheet was placed on the

> toes I would feel tremendous pain throughout my feet. That was because

> the nerves were hypersensitive and also sending confused signals to the

> brain, so just a touch of a bed sheet was enough for the brain to

> interpret it as tremendous pain throughout the feet. It was that way

> even though I was on extra doses of Dilaudid, with Flexeril and another

> mind altering drug to prevent nausea from the other drugs. Achalasia can

> cause hypersensitive neuropathic pain. I don't have that in my esophagus

> but I sure have an appreciation for what that kind of pain could be

> like. Six months later I still have some neuropathy in my feet and can

> feel an electric tingle if I touch them just right.

>

> > Hopefully some of you with Refractory achalasia will join us in the

> > fight to advance the interests of chronic pain patients and physicians.

> >

>

> I don't think our achalasia has to be refractory to have an interest in

> this. I don't consider mine refractory at this time. Maybe someday it

> will be. Also, it isn't like all doctors are against treating the pain.

> If you search the messages of this group you will find that members have

> discussed pain medications their doctors have given them. Also, some are

> taking antidepressants for chronic pain, not because they are depressed.

> There are doctors out there that are willing to treat both the acute and

> chronic pain that can be part of achalasia. There are also those among

> us that chose not to fight that battle any more and opted for an

> esophagectomy even though they may have been swallowing well enough. I

> am not saying people should or shouldn't have an esophagectomy because

> of pain. I know you choose not to. I respect your decision. Personally I

> don't like the way strong pain meds make me feel, dull like I am missing

> part of my soul. But then pain kind of does that too, so the decision

> for me would be a hard one. I want to be full of life though and pain or

> medications or a bad surgical outcome could be a problem. No easy

> answers for me.

>

> OT: Speaking of the soul and what we choose to do, while I was

> recovering from my accident I read the book, The Most Human Human. I

> recommend it to those that have a broad interest in technology and

> philosophy. It isn't a book for everyone. The main topic has to do with

> artificial minds/intelligences that try to be human like. That also

> leads into what it is to be human. It helped me clarify in my own mind

> where I have been the most alive. This support group is one of those

> places. We share life here. Not just social games of protocol and reflex

> responses. Before reading the book I had thought about building an

> achalasia chat box and dropping all the PubMed achalasia data into it.

> It still sounds like a fun idea but I am sure I will never get around to

> it. My daughter is getting a double degree this may, in psychology and

> computer science and will be working on her PhD next year researching

> computers and emotions. She gave me the book because of some talks we

> had. Anyway, a chat box would be interesting but it is the things that a

> chat box can not do that draws me here. You people are so alive, so

> human! Didn't Doctor Who say that?

>

> notan

>

>

>

>

[Guest guest]

>

> I don't know what to do about it though. We can beat a drum in the

> support group and make people mad by telling stories of pain neglected

> by doctors but what do we accomplish. > notan

>

>

>

>