Re: Contemplating Surgery

[Guest guest]

Hi!

Welcome to the group! This group is an

amazing source of information which will hopefully help you make the right choice for your

sitution. I am sorry to hear about the outcome of your dilation. That

would be a horrible situation to live through.

I was diagnosed with A last January, and I

had the lap heller done Sept 29th. I feel normal again. I

am so thankful – I have my life back! I strongly recommend the lap heller

if you are a canditate.

I was told that both the dilation and botox

are really temporary fixes. Some people do get a few years or more out of

them, but that they will most likely need to be repeated. Especially the botox.

I was told that each time you have it injected, it will last half the time

the last one did.

Both dilation and botox also cause scar tissue

to build up in the LES. This can cause more complication/less success in the

future, if and when the surgery is needed. This is why I opted for the surgery

right away.

If you do decide that you want to go ahead

with the surgery, go with a VERY experienced surgeon. I know this is the reason

I have such great results. If you tell us where you live (and

name J) I am sure there is someone in your area who can recommend someone

to you. Or, check the database section in the site, and that will also give

you some info!

Read, and take in as much as you possibly can

about A. It is only going to help you!

Take Care,

22

Chilliwack, BC

contemplating

surgery

I've suffered from achalasia for approx. 14 yrs.

Had pneumatic

dilation 12 yrs ago - e. tore & was

hospitilazed for a wk on iv's.

However, I was symptom free for many yrs.-about

8. Now, I'm having

more trouble than ever. Can't eat rice,

bread, raw veggies, etc.

When food gathers in throat, I have to cough it

up. Went to a

reputable dr & was told an option is

myotomy. I think surgery should

be a last resort & I'm afraid I still won't be

able to swallow

afterwards. I was encouraged to read message

from Ginny. I was told

if I don't have surgery, my e will only get

worse. Any comments or

encouragement from any fellow sufferers?

Thanks P.S. Soooo glad I

found this website - feel so alone with this

disease.

[Guest guest]

>

I had a hellar 2 years ago. I am so glad I did. I never had

a dilation because my doc said it was a temporary fix.

So far so good. I even had a baby since my surgery and am

very thankful. I could not have gone through the pregnancy

without the surgery first.

I am pretty much symptom free except for the occasional spasm.

I live in Ohio. I had my surgery at Ohio State University Hospital.

Many people have positive things to say about the Cleveland Clinic.

Don't know where you live but if you need references you will get

them here.

Jenifer

> I've suffered from achalasia for approx. 14 yrs. Had pneumatic

> dilation 12 yrs ago - e. tore & was hospitilazed for a wk on iv's.

> However, I was symptom free for many yrs.-about 8. Now, I'm having

> more trouble than ever. Can't eat rice, bread, raw veggies, etc.

> When food gathers in throat, I have to cough it up. Went to a

> reputable dr & was told an option is myotomy. I think surgery should

> be a last resort & I'm afraid I still won't be able to swallow

> afterwards. I was encouraged to read message from Ginny. I was told

> if I don't have surgery, my e will only get worse. Any comments or

> encouragement from any fellow sufferers? Thanks P.S. Soooo glad I

> found this website - feel so alone with this disease.

[Guest guest]

Hi!

Welcome to the group. I think Andréa has already answered and told you that

surgery is in fact your first option and that the longer you wait the less

chance of success you will have. So may I just add my voice to the chorus -

it is very important that you get surgery done as early as possible and by a

surgeon who is experienced and interested in achalasia. Read back at past

posts and also do some research on the Web Google is good place to start. I

can e-mail you and article from Cleveland Clinic if you like. Let me know.

Best wishes,

Joan

contemplating surgery

>

>

> I've suffered from achalasia for approx. 14 yrs. Had pneumatic

> dilation 12 yrs ago - e. tore & was hospitilazed for a wk on iv's.

> However, I was symptom free for many yrs.-about 8. Now, I'm having

> more trouble than ever. Can't eat rice, bread, raw veggies, etc.

> When food gathers in throat, I have to cough it up. Went to a

> reputable dr & was told an option is myotomy. I think surgery should

> be a last resort & I'm afraid I still won't be able to swallow

> afterwards. I was encouraged to read message from Ginny. I was told

> if I don't have surgery, my e will only get worse. Any comments or

> encouragement from any fellow sufferers? Thanks P.S. Soooo glad I

> found this website - feel so alone with this disease.

>

>

>

>

>

>

>

>

[Guest guest]

Hi,

I know several people have replied, and I would like to second their opinions. I had the surgery in Sept. 03, about 2 months after being diagnosed. I have needed a dilitation in Nov. 04. From what both my GI and surgeon have told me, any procedures work much better after the myotomy. Right now, I'm feeling as close to 'normal' as I have in years! While surgery normally is a last resort, I believe that due to the progressive nature of A, this disease may be one of the exceptions. Best wishes in whatever course you decide on!

Mike in WImc wagner__________________________________________________

[Guest guest]

My only comment would be to have several more opinions if you can as

it has been ten years since my surgery with me having many of your

symptoms. I have only gotten worse. Since I have tried many

different treatments, I am now going to have a trial for the spinal

cord stimulator and decide if that helps.

Good luck and keep us posted. Lois

On 8/29/09, alexalexalex666 <alexander@...> wrote:

> Greetings all. This will my first post to the group (I joined about a month

> ago).

>

> Here's the snapshot:

>

> DDD (diagnosed about 20 years ago)with marked facet joint degeneration

> T12-S1, ligamentum flavum hypertrophy, canal stenosis throughout the whole

> of the lumbar region, spondylolisthesis (L1-L2 & L4-L5)along with the

> associated degenerative lumbar scoliosis.

>

> Up until a rather hair-raising horseriding accident about 4 years ago, I was

> lucky enough to be able to deal with the symptoms as part of a lifestyle

> choice that would be considered active and allowed me to deny the facts

> above pretty convincingly.

>

> The main damage sustained wasn't to the spine. However, it did significantly

> increase overall burden of injury and has accellerated the rate of

> degeneration enough so that I'm experiencing fairly alarming effects of the

> stenosis, ie numbness in the buttocks and increased difficulty in walking

> due to referred symptoms to the legs.

>

> I had a consultation (I'm living in the UK) with a spinal surgeon about 18

> months ago whose prognosis was the continuing of the degenerative processes

> involved along with worsening of the symptoms that I am currently

> experiencing with the additional comment that ''you're really a very fit

> chap,your situation is bad and, as you don't want surgery, come and see me

> when it gets worse.'' ...and this would be for a 'chop job' involving

> decompression sugery along with a probably fusion necessitated by the

> spondylolthesis.

>

> As this post is starting to drag on a bit, I'll get to the point, I will be

> seeking a second opinion within the next month or so that, I assume, will

> suggest surgery.

>

> From many of the posts that I've been reading, I see that there are people

> here that seem far more incopacitated from their conditions than I have

> been...surgery doesn't seem to have done them any good, in fact seems to

> have contributed largely to a major decrease in their lifestyle choices.

>

> I'm not sure whether I will find any other members of this group out there

> who are in a situation like mine. I don't want to get into a situation where

> an ''accident'' will come along and make the decision to have surgery out of

> my hands and the choice of a surgeon beyond my control.

>

> Any comments would be appreciated. Thank you.

>

>

>

>

--

Lois

[Guest guest]

I would consider myself in much the same way as you, a fairly active person with

many serious back problems.  My problems are a result from birth and I have

learned to live with the daily pain.  I was able to develop a very healthy body,

which included jogging and running, and weightlifting.  Up until my fusion just

over 2 weeks ago, I was jogging and lifting some weights.  I just thought that

the time was now right and I would have a better chance of a much fuller

recovery due to my young age of 30.  Currently, I feel that the surgery was the

right thing and has already helped relieve some of the strong pain that I was

feeling.  I'm glad that I chose to have it and now think that maybe I should

have had it sooner.  Having always been active and participating in sports, I do

not see any limitations by this procedure.  I fully hope to recover feeling

better than prior.  Do not feel bad when others tell you to avoid the

surgery--since you are able

to continue to remain active--and do the things you do.  Many say the surgery

should be averted at all cost and is one of a last resort.  However, I challenge

that and do not understand why it has to be.  On numerous occasions, I was told

that I am not the " typical " fusion candidate, but why should it be a more

elderly person whom has lost their bowel control?

dave

________________________________

From: alexalexalex666 <alexander@...>

spinal problems

Sent: Saturday, August 29, 2009 9:57:38 AM

Subject: Contemplating Surgery

 

Greetings all. This will my first post to the group (I joined about a month

ago).

Here's the snapshot:

DDD (diagnosed about 20 years ago)with marked facet joint degeneration T12-S1,

ligamentum flavum hypertrophy, canal stenosis throughout the whole of the lumbar

region, spondylolisthesis (L1-L2 & L4-L5)along with the associated degenerative

lumbar scoliosis.

Up until a rather hair-raising horseriding accident about 4 years ago, I was

lucky enough to be able to deal with the symptoms as part of a lifestyle choice

that would be considered active and allowed me to deny the facts above pretty

convincingly.

The main damage sustained wasn't to the spine. However, it did significantly

increase overall burden of injury and has accellerated the rate of degeneration

enough so that I'm experiencing fairly alarming effects of the stenosis, ie

numbness in the buttocks and increased difficulty in walking due to referred

symptoms to the legs.

I had a consultation (I'm living in the UK) with a spinal surgeon about 18

months ago whose prognosis was the continuing of the degenerative processes

involved along with worsening of the symptoms that I am currently experiencing

with the additional comment that ''you're really a very fit chap,your situation

is bad and, as you don't want surgery, come and see me when it gets worse.''

....and this would be for a 'chop job' involving decompression sugery along with

a probably fusion necessitated by the spondylolthesis.

As this post is starting to drag on a bit, I'll get to the point, I will be

seeking a second opinion within the next month or so that, I assume, will

suggest surgery.

From many of the posts that I've been reading, I see that there are people here

that seem far more incopacitated from their conditions than I have

been...surgery doesn't seem to have done them any good, in fact seems to have

contributed largely to a major decrease in their lifestyle choices.

I'm not sure whether I will find any other members of this group out there who

are in a situation like mine. I don't want to get into a situation where an

''accident'' will come along and make the decision to have surgery out of my

hands and the choice of a surgeon beyond my control.

Any comments would be appreciated. Thank you.