new people

[Guest guest]

Hi Chelle!!!!!!!!!!!!!! So Glad you are back!!!!!!!!!

Not glad for all the testing you are having to go through ( What do they think is wrong with your heart??? And why the test on the head ???

Legal battles must be terrible!!! Glad your's are almosts over!!! My heart goes out for you and your family!!! They and you have been dealt some very hard blows (

{{{ WELCOME BACK HUGS }}}

Helen

Wow, look at all the new people on this list..... this is good..... I had an MRI on my brain last week and am waiting for the results. I also went to see a cardiologist that specializes in rhythm. He told me that I am not as bad as my father and brother (both of them need heart transplants) and that he wants me to wear an event monitor. If the event monitor doesn't catch anything within a month or so, they will be doing a procedure on me to see if they can induce the symptoms....not good...I am afraid of what will happen to my family if another member has something wrong with their heart...Hopefully sometime early this week all my legal battles that date back to 1996 will be over and all the paper work can be put in a box to collect dust! Lots of loveChelle

[Guest guest]

(((((((((((HELEN)))))))))))

Where did you find that beautiful angel???? Tomorrow I get my event

monitor and I can't find anyone to go with me Oh well, I'm sure I

will survive! Guess what happened! My legal battles I found out are

not over and won't be for a loooonnnngggg time! It sucks, but I am

not giving up...

Lots of Love,

Chelle

> Hi Chelle!!!!!!!!!!!!!! So Glad you are back!!!!!!!!!

> Not glad for all the testing you are having to go through (

What do

> they think is wrong with your heart??? And why the test on the

head ???

> Legal battles must be terrible!!! Glad your's are almosts

over!!! My

> heart goes out for you and your family!!! They and you have been

dealt some

> very hard blows (

> {{{ WELCOME BACK HUGS }}}

> Helen

>

>

> Wow, look at all the new people on this list..... this is

good..... I had an

> MRI on my brain last week and am waiting for the results. I also

went to see

> a cardiologist that specializes in rhythm. He told me that I am

not as bad

> as my father and brother (both of them need heart transplants) and

that he

> wants me to wear an event monitor. If the event monitor doesn't

catch

> anything within a month or so, they will be doing a procedure on me

to see if

> they can induce the symptoms....not good...I am afraid of what will

happen to

> my family if another member has something wrong with their

heart...Hopefully

> sometime early this week all my legal battles that date back to

1996 will be

> over and all the paper work can be put in a box to collect dust!

Lots of

> loveChelle

>

>

> >

[Guest guest]

Hi Chelle!!!

http://www.angelfire.com/mo3/qtpat/index1.html

She is under the Summer heading! If I lived close to you I would take you!!! How long do you have to wear it??? I had to wear mine for two weeks, and the Dr. said he was ready to pull his hair out!!! I was throwing so many differnt (FOUR) kinds of beats, he almost called my house to put my butt in the hospital )

So SORRY the legal battle is still going on ( That I know you were so looking forward to being over with!!!

Keep me posted as to how it goes! I'll worry ya know )

Love Ya !!!

Helen

(((((((((((HELEN)))))))))))

Where did you find that beautiful angel???? Tomorrow I get my event monitor and I can't find anyone to go with me Oh well, I'm sure I will survive!

Guess what happened! My legal battles I found out are not over and won't be for a loooonnnngggg time! It sucks, but I am not giving up...Lots of Love,Chelle

[Guest guest]

We can't say nothing - imagine being ignored when you join a group. You are

right Liz. A difficult situation, so few of us would even consider choosing a

few vaccines for someone else. Probably just remember our own fear and

empathise. Very sad that it happens.  I didn't detect any animosity from the

group responses. But then again I have not been badly frightened by military and

political propaganda either. What frightens me is that it is believed, and that

the military has its fingers in the nation's health pie! Is there any way that

when one joins, one just receives a bundle of info from Sheri. That might set

the tone as to what they might find here.

Maracuja

From: Brandegee <lightspirals@...>

Subject: Re: Never mind I'm leaving

Vaccinations

Date: Tuesday, February 10, 2009, 9:53 PM

I came into all this late, but agree...it's inherent in the group to

have an aversion to even think in that direction, no less advise. So

perhaps there is a standard response we should have, or say nothing?

Yet there is the opportunity to help someone perhaps see what's wrong

with the whole picture and many have greatly appreciated that. Hard

to find a balance for everyone.

Liz

>

> Sheri, I'm probably going to speak for most of us who answered --

> I don't think our intention was to bash her or run her away. I just

> think what she was asking of us was NOT something we could deliver

> having us be against vaccines. Me myself, in my right mind couldn't

> suggest how to delay a vax(or any vax for that matter). I didn't see

> anyone being disrespectful or mean to her. I just think a lot of us

> come on REALLY strong because this is something we are so against.

>

> Maybe things are better left unsaid?

>

[Guest guest]

the question gets raised quite often about 'how do I find out how much

experience my surgeon has'

If you are not already - you are going to HAVE to learn to be assertive. There

is NOTHING wrong with asking a surgeon 'how many myo's do you do in a year?'

'How long have you been doing them?' 'What is your success rate?' etc.

When I needed surgery 18 months ago, I sent emails to 2 VERY prominent and very

busy surgeons with those exact questions and I got very specific answers back

with exact numbers. Dr. Luketich even emailed me some studies that he had

participated in.

Word of caution - my personal feeling is, if they answer 'plenty' or some other

vague nonsense when you ask them how many myo's they do?? - RUN!! IF they are

not being straight up with detailed answers - it means they really don't have

the experience you are looking for.

I also question every test and every prescription they write. I've even had to

assert myself with Dr. L's office; this past July when I went to get checked, I

waited for a couple of hours only to be seen by one of his fellows/resident

people who reviewed my procedure for the next day. He got up to say goodbye and

I said, 'hey wait, where's Dr. L? I drive 10 hours to get here, I am GOING to

see HIM for a least 5 minutes!!' (I did)

You have a rare disease that many doctors do not know much about, you have to be

your own best advocate.

Good luck to everyone and be strong!!

- in NC

[Guest guest]

A question also to ask is whether or not a surgeon is actually doing the

surgery. Some of our surgeons get very busy and have others around them that

assist a lot. brought up a point that I've heard about, but not often

discussed here. Confirm who you will be dealing with at different stages.

I know of at least one very highly regarded doctor here that substituted a

surgeon without telling the patient, only by her confirming who the surgeon

would be at the office did she find out who was scheduled a few days before her

surgery date. They weren't going to tell her. She did decide to go ahead with

the surgery, but in all honesty, there were some serious infection complications

and she had to get very assertive, spent a lot of time with local doctors and

this substitue surgeon was not great at treating the infection, and blew her

off. The highly regarded surgeon had a vacation scheduled. He did apologize

months later. She had other health issues herself and in her family, so she is

very accustomed to doctors. But she was disappointed not to be informed.

Ask questions and don't be intimidated. Sometimes these surgeons are marketing

magnets and bring people to the hospital. I'm confident they oversee all the

patients, but also, they age, and could be starting to delegate their work to

others. Just ask questions. They need to get experience somehow. Just imagine

you teaching your kids to cook or do laundry or mow the lawn, it is in little

steps and surgeons have to learn the same as our kids.

Sandy

>

> the question gets raised quite often about 'how do I find out how much

experience my surgeon has'

> If you are not already - you are going to HAVE to learn to be assertive. There

is NOTHING wrong with asking a surgeon 'how many myo's do you do in a year?'

'How long have you been doing them?' 'What is your success rate?' etc.

> When I needed surgery 18 months ago, I sent emails to 2 VERY prominent and

very busy surgeons with those exact questions and I got very specific answers

back with exact numbers. Dr. Luketich even emailed me some studies that he had

participated in.

> Word of caution - my personal feeling is, if they answer 'plenty' or some

other vague nonsense when you ask them how many myo's they do?? - RUN!! IF they

are not being straight up with detailed answers - it means they really don't

have the experience you are looking for.

> I also question every test and every prescription they write. I've even had to

assert myself with Dr. L's office; this past July when I went to get checked, I

waited for a couple of hours only to be seen by one of his fellows/resident

people who reviewed my procedure for the next day. He got up to say goodbye and

I said, 'hey wait, where's Dr. L? I drive 10 hours to get here, I am GOING to

see HIM for a least 5 minutes!!' (I did)

> You have a rare disease that many doctors do not know much about, you have to

be your own best advocate.

> Good luck to everyone and be strong!!

>

> - in NC

>

[Guest guest]

Sandy and , (and all others who have posted their advice here)

Thanks so much for your posts. As someone who just recently found out I have

A., and have decided (just this past week) to go ahead with the surgery, it's

nice to find a place where I can get some answers and support from others who

have already gone through this!

Maybe one day I'll be the one sharing my experience.

Again, Thank You!

> >

> > the question gets raised quite often about 'how do I find out how much

experience my surgeon has'

> > If you are not already - you are going to HAVE to learn to be assertive.

There is NOTHING wrong with asking a surgeon 'how many myo's do you do in a

year?' 'How long have you been doing them?' 'What is your success rate?' etc.

> > When I needed surgery 18 months ago, I sent emails to 2 VERY prominent and

very busy surgeons with those exact questions and I got very specific answers

back with exact numbers. Dr. Luketich even emailed me some studies that he had

participated in.

> > Word of caution - my personal feeling is, if they answer 'plenty' or some

other vague nonsense when you ask them how many myo's they do?? - RUN!! IF they

are not being straight up with detailed answers - it means they really don't

have the experience you are looking for.

> > I also question every test and every prescription they write. I've even had

to assert myself with Dr. L's office; this past July when I went to get checked,

I waited for a couple of hours only to be seen by one of his fellows/resident

people who reviewed my procedure for the next day. He got up to say goodbye and

I said, 'hey wait, where's Dr. L? I drive 10 hours to get here, I am GOING to

see HIM for a least 5 minutes!!' (I did)

> > You have a rare disease that many doctors do not know much about, you have

to be your own best advocate.

> > Good luck to everyone and be strong!!

> >

> > - in NC

> >

>