Re: Progress after late appointment

[Guest guest]

wrote:

> ... has been doing some Gene Therapy Reserch on Achalasia, ...

I wonder what genes are used for the therapy. Perhaps they are not to

the point that they have identified the genes they will work with. Makes

me wonder.

notan

[Guest guest]

Oh , I am so glad you are seeing this other doctor. How is

the fever? How do you feel?

Christi

>

> Hi All

> I saw the General Surgeon today and I am to be referred to see

another General Surgeon who specialises in Upper GI surgery and is

well versed in Achalasia. This new General Surgeon is someone that I

have met before when my original surgeon was on leave and I was in

Hospital a year ago with MRSA infection. Aparently the surgeon that I

have been seeing is not as well knowledge wise about Achalasia as the

new surgeon if you get my drift. This new surgeon looks after another

member of my family who has Achalasia and has been doing some Gene

Therapy Reserch on Achalasia, his results are not known yet. I will

have to wait for the referral to get to him first but apparently it

has been maked down as urgent. This new surgeon (who i've already

met) has already mentioned to me (but because I wasn't his patient at

the time he couldn't do anything) having Manometry tests on the

anastomosis scar tissue and the Upper Oesophageal Muscle. We'll see.

> Apparently the reason that I have problems with Bile escaping from

my stoma site around the Jejunostomy is because of a leak from the

tube itself and I have been booked for a replacement for this

Wednesday morning.

>

>

>

>

>

>

[Guest guest]

Hi Notan

The Gene Therapy Research that I mentioned is they take small blood samples and

search to see if there is a family connection and also if a gene can be found

linking Achalasia sufferers found in the blood samples taken on a voluntary

basis. If a gene can be found then from this they can develop a simple blood

test to diagnose Achalasia instead of using invasive diagnostic tests. I have

taken part in this research and will ask about the results if I see this new

surgeon.

Re: Progress after late appointment

wrote:

> ... has been doing some Gene Therapy Reserch on Achalasia, ...

I wonder what genes are used for the therapy. Perhaps they are not to

the point that they have identified the genes they will work with. Makes

me wonder.

notan

[Guest guest]

Hi Christi

The fever seems to have settled down although it is only mild now and the

surgeon that I saw yesterday said to carry on taking Paracetamol and to see my

GP if it gets any worse. I too am glad that I am to see this other doc although

the appointment to see him could take a few weeks to come through. I'll keep on

the phone from a week today if I don't hear from them. Thanks for your concern.

I have forgotten to ask how are you? I have to go to have my 6 week old

Jejunostomy tube replaced tomorrow morning and so far I have only had them

replaced under local anaesthetic but will try without tomorrow.

Re: Progress after late appointment

Oh , I am so glad you are seeing this other doctor. How is

the fever? How do you feel?

Christi

>

> Hi All

> I saw the General Surgeon today and I am to be referred to see

another General Surgeon who specialises in Upper GI surgery and is

well versed in Achalasia. This new General Surgeon is someone that I

have met before when my original surgeon was on leave and I was in

Hospital a year ago with MRSA infection. Aparently the surgeon that I

have been seeing is not as well knowledge wise about Achalasia as the

new surgeon if you get my drift. This new surgeon looks after another

member of my family who has Achalasia and has been doing some Gene

Therapy Reserch on Achalasia, his results are not known yet. I will

have to wait for the referral to get to him first but apparently it

has been maked down as urgent. This new surgeon (who i've already

met) has already mentioned to me (but because I wasn't his patient at

the time he couldn't do anything) having Manometry tests on the

anastomosis scar tissue and the Upper Oesophageal Muscle. We'll see.

> Apparently the reason that I have problems with Bile escaping from

my stoma site around the Jejunostomy is because of a leak from the

tube itself and I have been booked for a replacement for this

Wednesday morning.

>

>

>

>

>

>

[Guest guest]

I've not been doing so well. My achalasia is really acting up. I

have had a lot of spasms the last few days too. Until I joined this

group, I didn't know what they were and niether did the doctors!!

One thought it was my stomach, another my diphragm, another said it

was my imagination!! I am so frustrated. I did, however, go have a

sleep study done night before last and now I am on a CPAP machine and

I slept last night for the first time in I don't know how long!!!

The pulminologist said she believes that my sleeping issues are what

created my aortic aneurysm. Once again, my " LOVELY " daughter says, I

just don't understand why you keep doing these " little " tests. Why

do you have to wear that " THING " ? For how long? Why? OH MOTHER!!!

So, she has been quite the challenge. And I'm whining, so, I will

stop. I am glad you are feeling a little better. Does it hurt to

get the tube replaced?

> >

> > Hi All

> > I saw the General Surgeon today and I am to be referred to see

> another General Surgeon who specialises in Upper GI surgery and is

> well versed in Achalasia. This new General Surgeon is someone that

I

> have met before when my original surgeon was on leave and I was in

> Hospital a year ago with MRSA infection. Aparently the surgeon that

I

> have been seeing is not as well knowledge wise about Achalasia as

the

> new surgeon if you get my drift. This new surgeon looks after

another

> member of my family who has Achalasia and has been doing some Gene

> Therapy Reserch on Achalasia, his results are not known yet. I will

> have to wait for the referral to get to him first but apparently it

> has been maked down as urgent. This new surgeon (who i've already

> met) has already mentioned to me (but because I wasn't his patient

at

> the time he couldn't do anything) having Manometry tests on the

> anastomosis scar tissue and the Upper Oesophageal Muscle. We'll

see.

> > Apparently the reason that I have problems with Bile escaping

from

> my stoma site around the Jejunostomy is because of a leak from the

> tube itself and I have been booked for a replacement for this

> Wednesday morning.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi ,

Glad to read that you're about to see a surgeon who's supposed to be more

experienced with cases like yours. Nevertheless I am not happy to read that you

need to be patient again. I don't get it: why do you have to wait and wait and

wait? Why can you not just be helped straight away? You wait again for a week???

Wow, you must be one of the most patient people I know... I would call that

office first thing tomorrow morning and not hang up the phone untill I got an

appointment settled for this week or at the utmost next week.

And again a new J-tube? Who is going to do that for you??? A doctor who does

have experience? As they've messed up on that one enough as well.

Sorry, , but I really really feel that you should stand up for yourself

much more. They are messing around with you, girl!

Love,

Isabella

Progress after late appointment

Hi All

I saw the General Surgeon today and I am to be referred to see another General

Surgeon who specialises in Upper GI surgery and is well versed in Achalasia.

This new General Surgeon is someone that I have met before when my original

surgeon was on leave and I was in Hospital a year ago with MRSA infection.

Aparently the surgeon that I have been seeing is not as well knowledge wise

about Achalasia as the new surgeon if you get my drift. This new surgeon looks

after another member of my family who has Achalasia and has been doing some Gene

Therapy Reserch on Achalasia, his results are not known yet. I will have to wait

for the referral to get to him first but apparently it has been maked down as

urgent. This new surgeon (who i've already met) has already mentioned to me (but

because I wasn't his patient at the time he couldn't do anything) having

Manometry tests on the anastomosis scar tissue and the Upper Oesophageal Muscle.

We'll see.

Apparently the reason that I have problems with Bile escaping from my stoma site

around the Jejunostomy is because of a leak from the tube itself and I have been

booked for a replacement for this Wednesday morning.

[Guest guest]

So, no gene therapy. Just research into the cause and genetic screening.

Personally, I don't see how that will be much good for providing a test.

Unlike you, most of us don't have close relatives with the disorder, so

if they are carrying genes that give them an increased risk of getting

achalasia most of them with the genes will not have achalasia but are

likely to have other causes of dysphagia if they have dysphagia. There

may be some with achalasia who have a rarer form of achalasia than most

of us for whom this would work, but I don't see it otherwise. It could

help to differentiate achalasia from similar motility disorders if they

have a different genetic factor, but I think that test would happen

after you already had the other tests to find there was a motility disorder.

For those interested in information on gene therapy see:

Human Genome Project

Gene Therapy

http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml

notan

wrote:

>

> Hi Notan

>

> The Gene Therapy Research that I mentioned is they take small blood

> samples and search to see if there is a family connection and also if

> a gene can be found linking Achalasia sufferers found in the blood

> samples taken on a voluntary basis. If a gene can be found then from

> this they can develop a simple blood test to diagnose Achalasia

> instead of using invasive diagnostic tests. I have taken part in this

> research and will ask about the results if I see this new surgeon.

>

>

>

[Guest guest]

Good Luck

dawn

Progress after late appointment

Hi All

I saw the General Surgeon today and I am to be referred to see another General

Surgeon who specialises in Upper GI surgery and is well versed in Achalasia.

This new General Surgeon is someone that I have met before when my original

surgeon was on leave and I was in Hospital a year ago with MRSA infection.

Aparently the surgeon that I have been seeing is not as well knowledge wise

about Achalasia as the new surgeon if you get my drift. This new surgeon looks

after another member of my family who has Achalasia and has been doing some Gene

Therapy Reserch on Achalasia, his results are not known yet. I will have to wait

for the referral to get to him first but apparently it has been maked down as

urgent. This new surgeon (who i've already met) has already mentioned to me (but

because I wasn't his patient at the time he couldn't do anything) having

Manometry tests on the anastomosis scar tissue and the Upper Oesophageal Muscle.

We'll see.

Apparently the reason that I have problems with Bile escaping from my stoma

site around the Jejunostomy is because of a leak from the tube itself and I have

been booked for a replacement for this Wednesday morning.

[Guest guest]

Hi Christi

No it does not hurt to have the tube replaced, well just for a split second when

the end (it has a wide lip on it) is pulled out and when they put another in.

Tell you what you whine all you like. It's best to get things off your chest as

it will help with the stress of coping with the spasms in Achalasia and I for

one should know as I practice meditation to help control the spasms which

incidently can be very, very painfull. You use all the gadgets that you need if

it helps your life and yes take all the tests needed if they help you that's

what counts, don't listen to what people say. Yes I do feel a little better

though I wish that this bile would settle as there is an enormous amount of it

soaking my dressings daily and mostly at night when I use the feed. Oh no here I

go again another spasm. God the tightness. Good luck and keep your chin up.

Re: Progress after late appointment

I've not been doing so well. My achalasia is really acting up. I

have had a lot of spasms the last few days too. Until I joined this

group, I didn't know what they were and niether did the doctors!!

One thought it was my stomach, another my diphragm, another said it

was my imagination! ! I am so frustrated. I did, however, go have a

sleep study done night before last and now I am on a CPAP machine and

I slept last night for the first time in I don't know how long!!!

The pulminologist said she believes that my sleeping issues are what

created my aortic aneurysm. Once again, my " LOVELY " daughter says, I

just don't understand why you keep doing these " little " tests. Why

do you have to wear that " THING " ? For how long? Why? OH MOTHER!!!

So, she has been quite the challenge. And I'm whining, so, I will

stop. I am glad you are feeling a little better. Does it hurt to

get the tube replaced?

> >

> > Hi All

> > I saw the General Surgeon today and I am to be referred to see

> another General Surgeon who specialises in Upper GI surgery and is

> well versed in Achalasia. This new General Surgeon is someone that

I

> have met before when my original surgeon was on leave and I was in

> Hospital a year ago with MRSA infection. Aparently the surgeon that

I

> have been seeing is not as well knowledge wise about Achalasia as

the

> new surgeon if you get my drift. This new surgeon looks after

another

> member of my family who has Achalasia and has been doing some Gene

> Therapy Reserch on Achalasia, his results are not known yet. I will

> have to wait for the referral to get to him first but apparently it

> has been maked down as urgent. This new surgeon (who i've already

> met) has already mentioned to me (but because I wasn't his patient

at

> the time he couldn't do anything) having Manometry tests on the

> anastomosis scar tissue and the Upper Oesophageal Muscle. We'll

see.

> > Apparently the reason that I have problems with Bile escaping

from

> my stoma site around the Jejunostomy is because of a leak from the

> tube itself and I have been booked for a replacement for this

> Wednesday morning.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Christi

Have forgotten to tell you, the slight fever has settled down and I have been

told to take Paracetamol for the fever if it gets any worse again.

Re: Progress after late appointment

I've not been doing so well. My achalasia is really acting up. I

have had a lot of spasms the last few days too. Until I joined this

group, I didn't know what they were and niether did the doctors!!

One thought it was my stomach, another my diphragm, another said it

was my imagination! ! I am so frustrated. I did, however, go have a

sleep study done night before last and now I am on a CPAP machine and

I slept last night for the first time in I don't know how long!!!

The pulminologist said she believes that my sleeping issues are what

created my aortic aneurysm. Once again, my " LOVELY " daughter says, I

just don't understand why you keep doing these " little " tests. Why

do you have to wear that " THING " ? For how long? Why? OH MOTHER!!!

So, she has been quite the challenge. And I'm whining, so, I will

stop. I am glad you are feeling a little better. Does it hurt to

get the tube replaced?

> >

> > Hi All

> > I saw the General Surgeon today and I am to be referred to see

> another General Surgeon who specialises in Upper GI surgery and is

> well versed in Achalasia. This new General Surgeon is someone that

I

> have met before when my original surgeon was on leave and I was in

> Hospital a year ago with MRSA infection. Aparently the surgeon that

I

> have been seeing is not as well knowledge wise about Achalasia as

the

> new surgeon if you get my drift. This new surgeon looks after

another

> member of my family who has Achalasia and has been doing some Gene

> Therapy Reserch on Achalasia, his results are not known yet. I will

> have to wait for the referral to get to him first but apparently it

> has been maked down as urgent. This new surgeon (who i've already

> met) has already mentioned to me (but because I wasn't his patient

at

> the time he couldn't do anything) having Manometry tests on the

> anastomosis scar tissue and the Upper Oesophageal Muscle. We'll

see.

> > Apparently the reason that I have problems with Bile escaping

from

> my stoma site around the Jejunostomy is because of a leak from the

> tube itself and I have been booked for a replacement for this

> Wednesday morning.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Isabella

The NHS is sometimes very slow in the UK but very very quick if there is any

deadly disease suspected which I don't. We NHS patients have to be patient and

wait our turn. There is a specialist nurse who deals with the J-Tubes and I had

it replaced yesterday morning which took nearly 1/2 hour to do. I explained to

her about the bile escaping out of the stoma hole and she wants me to ring her

back sometime today and tell her if the replacement tube has helped stop or slow

down the bile escaping (which I am about to do). Unfortunately it hasn't. The

specialist nurse did tell me that my Liver could have developed a sensativity to

the nightly feeds as I have the problem mainly at night and believe me the

dressings are soaked by morning as I can't always wake up in time to notice how

wet these dressings are before morning. I am seeing a General Practitioner

tomorrow morning and will talk to him about the bile situation as the specialist

nurse said that I need

blood tests done to check my Liver and if necessary medication to lessen and

control the amount of bile produced by the Liver.

Progress after late appointment

Hi All

I saw the General Surgeon today and I am to be referred to see another General

Surgeon who specialises in Upper GI surgery and is well versed in Achalasia.

This new General Surgeon is someone that I have met before when my original

surgeon was on leave and I was in Hospital a year ago with MRSA infection.

Aparently the surgeon that I have been seeing is not as well knowledge wise

about Achalasia as the new surgeon if you get my drift. This new surgeon looks

after another member of my family who has Achalasia and has been doing some Gene

Therapy Reserch on Achalasia, his results are not known yet. I will have to wait

for the referral to get to him first but apparently it has been maked down as

urgent. This new surgeon (who i've already met) has already mentioned to me (but

because I wasn't his patient at the time he couldn't do anything) having

Manometry tests on the anastomosis scar tissue and the Upper Oesophageal Muscle.

We'll see.

Apparently the reason that I have problems with Bile escaping from my stoma site

around the Jejunostomy is because of a leak from the tube itself and I have been

booked for a replacement for this Wednesday morning.

[Guest guest]

Hi Notan

Yes the research is to find the gene that causes Achalasia not a cure and to

enable doctors to diagnose with a blood test not cure without invasive

procedures. Yes 2 of my relatives are Paramedics and know what they are on about

and are being treated with Botox injections at this moment in time so that they

can carry on working. These relatives are also taking part in the research and

the new surgeon that I hope to see is the surgeon who looks after them and has

extensive knowledge about Achalasia.

Re: Progress after late appointment

So, no gene therapy. Just research into the cause and genetic screening.

Personally, I don't see how that will be much good for providing a test..

Unlike you, most of us don't have close relatives with the disorder, so

if they are carrying genes that give them an increased risk of getting

achalasia most of them with the genes will not have achalasia but are

likely to have other causes of dysphagia if they have dysphagia. There

may be some with achalasia who have a rarer form of achalasia than most

of us for whom this would work, but I don't see it otherwise. It could

help to differentiate achalasia from similar motility disorders if they

have a different genetic factor, but I think that test would happen

after you already had the other tests to find there was a motility disorder.

For those interested in information on gene therapy see:

Human Genome Project

Gene Therapy

http://www.ornl. gov/sci/techreso urces/Human_ Genome/medicine/ genetherapy.

shtml

notan

wrote:

>

> Hi Notan

>

> The Gene Therapy Research that I mentioned is they take small blood

> samples and search to see if there is a family connection and also if

> a gene can be found linking Achalasia sufferers found in the blood

> samples taken on a voluntary basis. If a gene can be found then from

> this they can develop a simple blood test to diagnose Achalasia

> instead of using invasive diagnostic tests. I have taken part in this

> research and will ask about the results if I see this new surgeon.

>

>

>