Treatment update

June 26, 2002

Update on ,

Do to confidentiality reasons I can only share generalities with you. If

this were your child you would surely understand. I had the privilege of

administering the first 5 of 7 treatments to before I had to leave for

a one week trip. Upon my return, I gave his 20th treatment. The

differences in were very noticeable but the biggest factor has not

changed, he is still in a coma. I cannot go in to much further detail other

than to tell you that he has not made one downward or negative turn since

starting HBOT on his 10th day post incident.

Plans are being made to transport home as he is completely stable. As

Ed Nemeth had stated, this is a long haul treatment plan not the acute

treatment we want all similar patients to receive. Plans are already set to

repeat the SPECT scan at the 40th treatment and look at the diagnostic

results of what we have been doing.

I have the Father reassurance that he will help our field in every manner

possible to see that this doesn't happen to another child in S. Florida (of

course this would lead to national action as well). Drowning is one of our

number one killers in children under the age of 5 in S. Florida. All we want

is to offer these children an opportunity for care that they currently have

no access to.

On a similarly related note. The IHMA has recently gained tremendous ground

on one our largest stumbling blocks in our field. Off label use of a device

or drug. If something is not considered off label it is much more likely to

be accepted by insurers and treating physicians. Bottom line is that a

doctor that doesn't know about HBOT would be understandably cautious of

prescribing something they know nothing about, and its off label to boot. I

will announce our breakthrough as soon as everything is finalized. There are

confidentiality issues that must be adhered to on this as well, but all will

be released as soon as humanly possible.

For all of you thinking that change is good but it taking to long for your

children, I completely understand. But we are gaining more ground now than I

have ever seen in our field. Persistent truth has a way of wearing down the

walls of injustice.

Sincerely,

R. Locklear, Editor

Hyperbaric Medicine Today journal

<A HREF= " www.hbomedtoday.com " >www.hbomedtoday.com</A>

4500 Belvedere Road, Suite H

West Palm Beach, FL 33415

USA

(561) 640-4546 Phone

(561) 640-4457 Fax

June 29, 2002

Are you sure YOU administered those treatments? According to the

hospital, Dr. Neubauer's CHTs did. In fact it was mentioned that

your CHT license is not valid. As the editor of a magazine and as

the 'head' of the IHMA, one would hope that you report the facts as

they are.

It would be a shame to try and take the credit for Dr. Neubauer's

work in such a 'high profile' case.

> Update on ,

> Do to confidentiality reasons I can only share generalities with

you. If

> this were your child you would surely understand. I had the

privilege of

> administering the first 5 of 7 treatments to before I had to

leave for

> a one week trip. Upon my return, I gave his 20th

treatment. The

> differences in were very noticeable but the biggest factor

has not

> changed, he is still in a coma. I cannot go in to much further

detail other

> than to tell you that he has not made one downward or negative turn

since

> starting HBOT on his 10th day post incident.

>

> Plans are being made to transport home as he is completely

stable. As

> Ed Nemeth had stated, this is a long haul treatment plan not the

acute

> treatment we want all similar patients to receive. Plans are

already set to

> repeat the SPECT scan at the 40th treatment and look at the

diagnostic

> results of what we have been doing.

>

> I have the Father reassurance that he will help our field in every

manner

> possible to see that this doesn't happen to another child in S.

Florida (of

> course this would lead to national action as well). Drowning is

one of our

> number one killers in children under the age of 5 in S. Florida.

All we want

> is to offer these children an opportunity for care that they

currently have

> no access to.

>

> On a similarly related note. The IHMA has recently gained

tremendous ground

> on one our largest stumbling blocks in our field. Off label use of

a device

> or drug. If something is not considered off label it is much more

likely to

> be accepted by insurers and treating physicians. Bottom line is

that a

> doctor that doesn't know about HBOT would be understandably

cautious of

> prescribing something they know nothing about, and its off label to

boot. I

> will announce our breakthrough as soon as everything is finalized.

There are

> confidentiality issues that must be adhered to on this as well, but

all will

> be released as soon as humanly possible.

>

> For all of you thinking that change is good but it taking to long

for your

> children, I completely understand. But we are gaining more ground

now than I

> have ever seen in our field. Persistent truth has a way of wearing

down the

> walls of injustice.

>

> Sincerely,

>

> R. Locklear, Editor

> Hyperbaric Medicine Today journal

> <A HREF= " www.hbomedtoday.com " >www.hbomedtoday.com</A>

> 4500 Belvedere Road, Suite H

> West Palm Beach, FL 33415

> USA

> (561) 640-4546 Phone

> (561) 640-4457 Fax

>

June 29, 2002

As far as I remember, Steve Reimer called me, I spoke with the father, then

I called Ken at midnight who went to court with the father and Ken and Dr N,

plus the firedept set up the chamber. I remember Ken saying he ran the

chamber. No one is trying to get any credit and Ken is a very honest person

as is Dr N and everyone involved. I have known Ken for a few years and never

known him to be anything but honest. He spent days covering the story. I

also want to commend Steve for making phone calls to help this child.

[ ] Re: Treatment update

Are you sure YOU administered those treatments? According to the

hospital, Dr. Neubauer's CHTs did. In fact it was mentioned that

your CHT license is not valid. As the editor of a magazine and as

the 'head' of the IHMA, one would hope that you report the facts as

they are.

It would be a shame to try and take the credit for Dr. Neubauer's

work in such a 'high profile' case.

> Update on ,

> Do to confidentiality reasons I can only share generalities with

you. If

> this were your child you would surely understand. I had the

privilege of

> administering the first 5 of 7 treatments to before I had to

leave for

> a one week trip. Upon my return, I gave his 20th

treatment. The

> differences in were very noticeable but the biggest factor

has not

> changed, he is still in a coma. I cannot go in to much further

detail other

> than to tell you that he has not made one downward or negative turn

since

> starting HBOT on his 10th day post incident.

>

> Plans are being made to transport home as he is completely

stable. As

> Ed Nemeth had stated, this is a long haul treatment plan not the

acute

> treatment we want all similar patients to receive. Plans are

already set to

> repeat the SPECT scan at the 40th treatment and look at the

diagnostic

> results of what we have been doing.

>

> I have the Father reassurance that he will help our field in every

manner

> possible to see that this doesn't happen to another child in S.

Florida (of

> course this would lead to national action as well). Drowning is

one of our

> number one killers in children under the age of 5 in S. Florida.

All we want

> is to offer these children an opportunity for care that they

currently have

> no access to.

>

> On a similarly related note. The IHMA has recently gained

tremendous ground

> on one our largest stumbling blocks in our field. Off label use of

a device

> or drug. If something is not considered off label it is much more

likely to

> be accepted by insurers and treating physicians. Bottom line is

that a

> doctor that doesn't know about HBOT would be understandably

cautious of

> prescribing something they know nothing about, and its off label to

boot. I

> will announce our breakthrough as soon as everything is finalized.

There are

> confidentiality issues that must be adhered to on this as well, but

all will

> be released as soon as humanly possible.

>

> For all of you thinking that change is good but it taking to long

for your

> children, I completely understand. But we are gaining more ground

now than I

> have ever seen in our field. Persistent truth has a way of wearing

down the

> walls of injustice.

>

> Sincerely,

>

> R. Locklear, Editor

> Hyperbaric Medicine Today journal

> <A HREF= " www.hbomedtoday.com " >www.hbomedtoday.com</A>

> 4500 Belvedere Road, Suite H

> West Palm Beach, FL 33415

> USA

> (561) 640-4546 Phone

> (561) 640-4457 Fax

>

June 29, 2002

People that were there say otherwise. To top it off, considering

that Mr. Locklear's CHT has expired or is not valid, he would not be

allowed to give treatments.

from 's post ....

> I remember Ken saying he ran the chamber. No one is trying to get

any credit and Ken is a very honest person as is Dr N and everyone

involved.

from Locklear's post ....

> I had the privilege of administering the first 5 of 7 treatments to

before I had to leave for a one week trip. Upon my return, I

gave his 20th treatment.

> > Update on ,

> > Do to confidentiality reasons I can only share generalities with

> you. If

> > this were your child you would surely understand. I had the

> privilege of

> > administering the first 5 of 7 treatments to before I had

to

> leave for

> > a one week trip. Upon my return, I gave his 20th

> treatment. The

> > differences in were very noticeable but the biggest factor

> has not

> > changed, he is still in a coma. I cannot go in to much further

> detail other

> > than to tell you that he has not made one downward or negative

turn

> since

> > starting HBOT on his 10th day post incident.

> >

> > Plans are being made to transport home as he is completely

> stable. As

> > Ed Nemeth had stated, this is a long haul treatment plan not the

> acute

> > treatment we want all similar patients to receive. Plans are

> already set to

> > repeat the SPECT scan at the 40th treatment and look at the

> diagnostic

> > results of what we have been doing.

> >

> > I have the Father reassurance that he will help our field in every

> manner

> > possible to see that this doesn't happen to another child in S.

> Florida (of

> > course this would lead to national action as well). Drowning is

> one of our

> > number one killers in children under the age of 5 in S. Florida.

> All we want

> > is to offer these children an opportunity for care that they

> currently have

> > no access to.

> >

> > On a similarly related note. The IHMA has recently gained

> tremendous ground

> > on one our largest stumbling blocks in our field. Off label use

of

> a device

> > or drug. If something is not considered off label it is much more

> likely to

> > be accepted by insurers and treating physicians. Bottom line is

> that a

> > doctor that doesn't know about HBOT would be understandably

> cautious of

> > prescribing something they know nothing about, and its off label

to

> boot. I

> > will announce our breakthrough as soon as everything is finalized.

> There are

> > confidentiality issues that must be adhered to on this as well,

but

> all will

> > be released as soon as humanly possible.

> >

> > For all of you thinking that change is good but it taking to long

> for your

> > children, I completely understand. But we are gaining more ground

> now than I

> > have ever seen in our field. Persistent truth has a way of

wearing

> down the

> > walls of injustice.

> >

> > Sincerely,

> >

> > R. Locklear, Editor

> > Hyperbaric Medicine Today journal

> > <A HREF= " www.hbomedtoday.com " >www.hbomedtoday.com</A>

> > 4500 Belvedere Road, Suite H

> > West Palm Beach, FL 33415

> > USA

> > (561) 640-4546 Phone

> > (561) 640-4457 Fax

> >

June 30, 2002

I know that Dr N testified and that was honable and noble I respect that type

of person. I know little of the details because I wasnt there. I hope this is

all an a mistake in communication.

momthedoc wrote:

> People that were there say otherwise. To top it off, considering

> that Mr. Locklear's CHT has expired or is not valid, he would not be

> allowed to give treatments.

>

> from 's post ....

> > I remember Ken saying he ran the chamber. No one is trying to get

> any credit and Ken is a very honest person as is Dr N and everyone

> involved.

>

> from Locklear's post ....

> > I had the privilege of administering the first 5 of 7 treatments to

> before I had to leave for a one week trip. Upon my return, I

> gave his 20th treatment.

>

> > > Update on ,

> > > Do to confidentiality reasons I can only share generalities with

> > you. If

> > > this were your child you would surely understand. I had the

> > privilege of

> > > administering the first 5 of 7 treatments to before I had

> to

> > leave for

> > > a one week trip. Upon my return, I gave his 20th

> > treatment. The

> > > differences in were very noticeable but the biggest factor

> > has not

> > > changed, he is still in a coma. I cannot go in to much further

> > detail other

> > > than to tell you that he has not made one downward or negative

> turn

> > since

> > > starting HBOT on his 10th day post incident.

> > >

> > > Plans are being made to transport home as he is completely

> > stable. As

> > > Ed Nemeth had stated, this is a long haul treatment plan not the

> > acute

> > > treatment we want all similar patients to receive. Plans are

> > already set to

> > > repeat the SPECT scan at the 40th treatment and look at the

> > diagnostic

> > > results of what we have been doing.

> > >

> > > I have the Father reassurance that he will help our field in every

> > manner

> > > possible to see that this doesn't happen to another child in S.

> > Florida (of

> > > course this would lead to national action as well). Drowning is

> > one of our

> > > number one killers in children under the age of 5 in S. Florida.

> > All we want

> > > is to offer these children an opportunity for care that they

> > currently have

> > > no access to.

> > >

> > > On a similarly related note. The IHMA has recently gained

> > tremendous ground

> > > on one our largest stumbling blocks in our field. Off label use

> of

> > a device

> > > or drug. If something is not considered off label it is much more

> > likely to

> > > be accepted by insurers and treating physicians. Bottom line is

> > that a

> > > doctor that doesn't know about HBOT would be understandably

> > cautious of

> > > prescribing something they know nothing about, and its off label

> to

> > boot. I

> > > will announce our breakthrough as soon as everything is finalized.

> > There are

> > > confidentiality issues that must be adhered to on this as well,

> but

> > all will

> > > be released as soon as humanly possible.

> > >

> > > For all of you thinking that change is good but it taking to long

> > for your

> > > children, I completely understand. But we are gaining more ground

> > now than I

> > > have ever seen in our field. Persistent truth has a way of

> wearing

> > down the

> > > walls of injustice.

> > >

> > > Sincerely,

> > >

> > > R. Locklear, Editor

> > > Hyperbaric Medicine Today journal

> > > <A HREF= " www.hbomedtoday.com " >www.hbomedtoday.com</A>

> > > 4500 Belvedere Road, Suite H

> > > West Palm Beach, FL 33415

> > > USA

> > > (561) 640-4546 Phone

> > > (561) 640-4457 Fax

> > >

March 25, 2003

I woke up and started walking around and discovered that I have some numbness

again on my right leg. Now where did I put that exercise sheet thingy? The Dr.

told me to keep doing those exercises. Just call me Moonshadow. My hands are

numb from carpal tunnel, I have TMJ problems, nerve pain in feet and legs. Well,

at least I can still see! I was thinking about that song today...

And if I ever lose my hands, lose my plough, lose my land,

Oh if I ever lose my hands, oh if.... I won't have to work no more.

And if I ever lose my eyes, if my colours all run dry,

Yes if I ever lose my eyes, oh if.... I won't have to cry no more.

And if I ever lose my legs, I won't moan, and I won't beg,

Yes if I ever lose my legs, oh if.... I won't have to walk no more.

And if I ever lose my mouth, all my teeth, north and south,

Yes if I ever lose my mouth, oh if.... I won't have to talk...

meg

March 22, 2004

Joy. glad to hear that you are finally getting something done to find out

what is going on with you. Me I find out what is going on and they do treatments

and surgery and still I am left to live in pain. It is sad I was telling my

mom tonight that if I hurt this bad at 39 what will I be like at 60? I told her

I didn't want to live to see 60 , of course she let me know she did not want

to her that from me. Of course it didn't help when my son told he he was gonna

put me in a nice nursing home when I was 50. He was only playing but

sometimes, playing hurts. I hope all goes well for you. Don't give up, maybe

there is

hope for us yet.

Alisa

March 22, 2004

Alisa, Hugs to you. Iunderstand completely. I am 41 and I worry what I will

be like at 50. I got to say I am scared of what the future holds for me

regarding surgeries and treatments. I just hate to go through it all and it not

help at all which is always a chance to take. It is frustrating. At least to

me soon I will understand my condition more and why it hurts so bad.

Joy

March 23, 2004

In a message dated 3/23/2004 8:09:00 AM Eastern Standard Time,

genmaillist@... writes:

Did you ask your GP about getting a cervical MRI?

, no didn't. All she is doing is an abdominal MRI because I am having

pain in the top center of the stomach, My gall bladder is gone so we know for

sure it is not that. I can tell you that I have pain radiating around my whole

rib cage too and goes to the front. I have so much pain that I am realizing

when I get some areas to calm down for a bit other areas are right up there in

pain levels. I guess when my neck is bothering me so bad I don't realize how

bad it is around the rib cage too. It is the lower two ribs. A chest x ray

is all that has been done. I was supposed to see my Orthopedic yesterday but

my son is home sick from school and I had to reschedule it. I am hoping he

orders several MRI's. I am not fond of them but at least they will help them

and me to know what is going on. I was wonder what if something is wrong and

chiropractic adjustments are making them worse. Not sure if that is possible

but something I question. Chiropractor is trying to cut back right now on my

visists to see how I do. Right now I am in a lot of pain. I should just call

him up and go but I won't and try to wait till tomorrow for the re exam again.

Joy

March 23, 2004

Joy,

Have you ever had a Thoracic MRI. The symptoms you describe sound similar to

mine. I have 3 thoracic disc herniations and 2 other thoracic disc with bone

spurs. My symptoms get much worse with any walking or driving (sitting

upright) for longer than 30 minutes. I hope you get some answers soon. Hang in

there and trust in the Lord.

God Bless You,

March 23, 2004

Hi Joy,

Did you ask your GP about getting a cervical MRI?

March 23, 2004

> I got to say I am scared of what the future holds for me <

If you live in fear for the future...then you can't enjoy today.

Take things one day at a time...not quite so overwhelming that way.

Viv in GA

March 23, 2004

In a message dated 3/23/2004 4:24:56 PM Eastern Standard Time,

genmaillist@... writes:

Good luck with the MRI on Saturday. I hope it's not too painful for you to

lay there during the test. I hated my first MRI so the second time I did

some research beforehand and found a facility with an Open-MRI unit. It was

much less claustrophobic.

I hope the test results assist the doctors with your treatment.

Thanks , unfortunately with this type of test they don't like to use the

open one. They say the closed one is a lot better. Oh Well, what fun right.

Joy

March 23, 2004

Hi Joy,

Good luck with the MRI on Saturday. I hope it's not too painful for you to

lay there during the test. I hated my first MRI so the second time I did

some research beforehand and found a facility with an Open-MRI unit. It was

much less claustrophobic.

I hope the test results assist the doctors with your treatment.

March 23, 2004

>I got to say I am scared of what the future holds for me

regarding surgeries and treatments.

Me too, Joy, I think we can all relate to that. We HAVE to take one day at a

time, and just think about this... maybe with all the advances in medicine MAYBE

someday they will come up with something that really works and we might be able

to have a full and productive life in the future.

Just think about TODAY and gather the strength you need just for the moment. I

can do this... I can get through today.

But today my family is a little worried with all the news reports about Prozac

relating to suicide, but I calmed them a bit. I don't have the agitation and

all that, so I'm safe to keep taking my prozac. I have become so much better

off with taking it, I can face what comes.

meg

March 23, 2004

Hi Joy,

Believe it or not I was told something very similar. Actually I was told it

" the c-scan and l-scan couldn't be done on an open-mri " . As I found out by

calling around, that just isn't so. I called and spoke with the technicians

in the mri department of several hospitals/facilities to be sure. Although

my orthosurgeon said " it wasn't a great mri " he was still able to interpret

the results.

It never hurts to do some research just incase. You never know.

>

>Thanks , unfortunately with this type of test they don't

>like to use the

>open one. They say the closed one is a lot better. Oh Well,

>what fun right.

>

>Joy

March 24, 2004

Jewel,

So sorry to hear of all the pain you have. As for me the only diagnoses I

have right now and that was today was fibromyalgia. The Rehumistiologist

told me today with having that and then this auto accident it can make the pain

a

lot more worse. She sent me for blood work today so we will wait on that.

She said there are 18 trigger points or something like that and I had 14 of

them. Still trying to understand this illness which there is no cure but can be

treatable with meds. I say great more medications for me to take. I also

have interstitial cystics and she said with fibromyalgia that goes with it most

of the time and some other problems. Now regarding the pain in my pinkie and

ring finger that is new since the auto accident. I do get the tingly feeling

and when my hand is held up or down it goes numb for some reason. I have a

nerve conduction test scheduled on April 12th to find out what is wrong. My

last

diagnosis in Nov was degenerative disc disease in lower back and the

herinatied disc in the cervical spine c5-6. Tomorrow I will see orthopedic and

he will

probably order more MRI's just to find out what is going on. I do have my

abdominal MRI tomorrow to see if they can spot anything wrong since I am in a

lot of pain in my stomach since the car accident. So for now I am waiting for

all the tests and maybe by the end of April we will find some way to control my

pain so I can function better than I am. I don't know what is going on with

me but at least I see answers coming in the future and then I can learn to

deal with them. I had an auto accident in 2001 where I was hit on the side and

that is when all my problems began. I never had pain like I do now. I never

fully recovered from that accident and then to have two more between Nov and

March 2nd doesn't help. The last accident the DR listed me as partially

disabled and said I would never be pain free that I would have to learn to live

with

it. That was very depressing at that. Now, its the waiting game to find out

what else is wrong and if it can be fixed.

Joy

March 24, 2004

In a message dated 3/24/2004 7:10:51 PM Eastern Standard Time,

sweetdreamsk9@... writes:

Then when all else fails and they don't know what to call it...it is

diagnosed as " failed back syndrome " . Something failed...just not sure if it is

my back

or the docs have just given up trying to treat it. LOL

Ok...meds have me loopy and looking a life in funny (as in weird) ways.

Ya'll have a great night!

Viv in GA

Wow viv i will look forward to that diagnosis if they cannot figure me out

this time. LOL I wish I had pain meds right now to help but they won't give me

any saying that with the abdominal pain they want me to beable to feel the

pain in case something is wrong.

Joy

March 24, 2004

March 23, 2004

Dearest Joy,

Hello! I have been trying to get this post completed to send to you,

however, I have been in so much pain lately, not to mention, dozing off at

my computer doesn't help either. I am new to this group and I am amazed at

how many others suffer with some type of back pain. I recently posted my

personal history/story of related to my back problems on March 17th. You

see, I have an extremely rare and incurable disease called, Adhesive

Arachnoiditis. The pain of my disease is also compared to that of cancer.

Since my diagnosis in March of 2000, I have been taking MS Contin (Morphine)

for my everyday pain and MSIR (Morphine) for my break through pain that I

take every 3-4 hours. I also take Zanaflex for my severe muscle spasms and

Neurontin for my nerve pain. Thus far, my medications have given me some

kind of life; I just wouldn't be able to take the pain without it. I notice

that you mentioned pain in your ring and pinkie finger. I recently had a

similar experience of sensation to my left hand and fingers, which comes and

goes, however, it seems that I have more of a tingling sensation instead of

pain. By any chance did you first have this type of sensation that I am

speaking of or have you always experienced pain only? I was just curious,

as I mentioned this is a new sensation so I thought I would ask? Also, if

you don't mind me asking, what is your current diagnosis and what

medications do you take?

Joy, I do hope that we can become good friends, as I also hope that I can

get to now many of the others in the group. It seems that everyone gets

along with each other pretty well as it is quite important to develop

relationships with each other since we can identify with how we feel and

what we are experiencing on a daily basis. It can be difficult to try to

explain to our loved ones and our friends why we feel the way we do if they

themselves have not been where we are. It is difficult for me as it is

since I am not able to work any longer, and due to my episodes of dozing off

so I now refuse to drive as I do not want to harm or kill anyone or even

myself for that matter. My oldest son is away at college, and both my

youngest son and my husband are at school and work during the day, which

leaves me at home all alone. So the only thing between the world and me are

support groups such as this that are going through the very same thing I

am…my lifeline to the world!

Since I am now not able to work, I decided to apply for Social Security last

year. To my amazement, Social Security approved my disability application

within 3 months to receive benefits; as you can imagine, I was quite

surprised to hear from them so soon. I have read about so many others that

usually get denied a couple of times before a lawyer is usually hired, so I

had already prepared myself for the very worst. So to say the very least, I

was quite fortunate that my SSI was even approved. Believe me, financially,

we really did need that to help cover the cost of my medications and medical

bills as I am sure you can probably identify with me on a personal level.

Well, I am going on and on now. I have to go now. Listen, please do feel

free to send me an email whenever you would like, as I mentioned I am always

home. I do hope to hear from you real soon. Good-bye!

Your friend,

Jewel

March 24, 2004

> I have an extremely rare and incurable disease called, Adhesive Arachnoiditis.

<

That is what my doctor first discussed with me...since I had so many spinal taps

as a baby when I had menengitis.

He never said it was rare...and said more people that you think have it...just

docs don't always look that in-depth for it.

Then when all else fails and they don't know what to call it...it is diagnosed

as " failed back syndrome " . Something failed...just not sure if it is my back or

the docs have just given up trying to treat it. LOL

Ok...meds have me loopy and looking a life in funny (as in weird) ways.

Ya'll have a great night!

Viv in GA

April 4, 2004

My doctor has told me that people who have neck surgery usually have more.

Wow I really loved hearing that. I still have 3 buldging disc in my neck so what

I have to wait until, my bone fusion is done on c-6,7 and then bam have

another surgery and go through it all again. I've read where dengerative disc

disease is something older people get, so why did mine and everyone elses our

age

start so early. I don't believe they can lable it an old age disease.I don't

want to have to look forward to more surgeries, not anywhere, but im afraid, i

have no choice. I'm gonna fight is as hard as I can for as long as I can I am

not going to give up. Somedays, I hurt so bad but I force myself to get up and

do what I have to do. I'm not a quiter, and knowone else should give up in

here. We are fighters, and maybe someday they will come up with something that

will help us all. Take care

Alisa

December 22, 2008

Dear dear ,

You should NOW change hospital. This is WRONG.

Sorry, I'm at work right now so I'm not able to write more, but I think my

message is clear...

Love,

Isabella

________________________________

From: Hulmes <christine.hulmes@...>

achalasia

Sent: Monday, December 22, 2008 3:03:13 PM

Subject: Treatment update

Hello All

I had a new J-Tube fitted last Friday afternoon. Within 2 hours it had 2

extensive bile leaks. (Gastro docs who placed the J-Tube had gone home for the

day and told nursing staff to discharge me after a short rest.) I only got out

of the bed and went to the changing room to change and the bile ran down my

front soaking the hospital gown. I mopped up what I could with clean gauze and

put clean dressings around the J-tube stoma and showed the soiled gauze to the

nurses and that was when they told me that the docs had gone home. As it was a

Saturday the next day I was told to contact the doc's team this morning (Monday)

to ask for advice and was told that the J-Tube needs adjusting and to return to

the hospital ward next Monday morning after Xmas. The point is these leaks are a

long running problem now and my family and myself want it sorted out and I made

this clear to the doc I spoke to on the phone this morning. I mean I now change

the dressings on

average 12-15 times every 24 hours whereseas before mu tube change I only

changed the dressings 6-7 times daily. I have a cup of tea and the bile soaks

the dressings, I have a snack and the bile soaks the dressings. This also

happens when I go for a little walk. Terrible isn't it. I am so angry now. I am

convinced that the bile leakage is conected to a possible liver problem as I

have bad, bad pain under my right ribs going through to my back and have to take

regular painkillers for this alone. Pff.

Gastroscopy done at the same time showed that the web of scar tissue had

contracted and that they dilated this web and so far I am able to swallow a

little with liquid but of course every time I do this the bile leaks out. I keep

asking the docs WHY?

December 23, 2008

Hi ,

The secretary shouldn't be calling you back, your doc should! Honest, you are

being way too patient here and I think you endanger your health too much. You

shouldn't have to wait until the new year, you need help and you need it NOW! He

IS in the hospital, so he COULD chose to see see. I wouldn't take no for an

answer anymore. You say you have reached the limits of your patience, which you

indeed should have by now, but waiting for another week and a half isn't taking

things in your own hands, .

Sorry, I don't want to sound bossy here, but I am so worried about you, things

are NOT OK and you NEED help. You have been in need for help for a long time,

but they just don't give it to you. So what if you need to travel a bit further,

as long as you get the help you need. I'ld phone another hospital and ask what

they could do. Don't take no for an answer any longer!

Hang in there and stop being the patient patient that you've been so far!

Love,

Isabella

________________________________

From: Hulmes <christine.hulmes@...>

achalasia

Sent: Tuesday, December 23, 2008 1:23:47 PM

Subject: Re: Treatment update

Hi Isabella

The hospital that I went to last Friday is the only one in my region of North

West Wales and to go to another regional hospital I would have to first see the

Gastro doc. and ask for a referral to another Gastro doc at another hospital.

Anyway I contacted the Gastro Doc.'s secretary this morning as I have had enough

of this bile leak and there is now green bile as well as the yellow bile and I

am convinced that there is something to do with either the liver or stomach

causing it but as the Gastroscopy was done last Friday and none of the docs have

told me anything except that one of the nurses told me that the examination was

fine. No other word about if they checked the bile ducts or Gallbladder or

anything. Anyway the Gastro docs secretary said that the Gastro doc was out

until lunchtime and that she will phone me back as regards with my request to

see him ASAP in the New Year to discuss the bile leakage once and for all. I

have reached the limit of my patience as regards this matter now and am in

constant pain with it. God do I ramble. Sorry.

Merry Xmas to everyone on this board and many thanks for any advice and support

that I receive I do appreciate it even though I tend to ramble on these days.

____________ _________ _________ __

From: Isabella Arnold <arnoldisabella>

achalasia@grou ps.com

Sent: Monday, December 22, 2008 3:29:24 PM

Subject: Re: Treatment update

Dear dear ,

You should NOW change hospital. This is WRONG.

Sorry, I'm at work right now so I'm not able to write more, but I think my

message is clear....

Love,

Isabella

____________ _________ _________ __

From: Hulmes <christine.hulmes>