marfans_support_and_chat : Messages : 4060-4103 of 6693

At least this guy was so blatantly stupid it was obvious that he was an idiot. As a result, you knew under no uncertain terms he was a loser, to your credit, you made a fool out of him to his face.

Your reaction was intelligent, educated, and sufficient to give him a little slap in the face (although I would have been really nasty) to wake him up. One other point that I sometimes make with idiot doctors is that they are violating the one most important covenant they have take upon themselves. In medical school they call it the Hippocratic Oath. That is an oath that they take which is very simple and it states this: "Do no harm."

In your case, he did harm. He sent you on an emotional roller coaster...that's did no good for you and in fact harmed your mental and emotional condition. He caused you to question everything you researched and he tried (unsuccessfully) to convince you that you were "safe" when in fact you were (are) in a measurable degree of danger.

The same thing occurs when I go to a cardiologist who tells me that he is familiar with Marfans and he has "several" Marfans patients. When in reality he has had three Marfans patients and one died. So he has two patients...big deal and not impressive to me.

I don't really understand, in today's world of specialization, why a doctor wouldn't automatically say, "The experts in that field are Dr. Coselli, (or any other equally qualified surgeon) a surgeon who has done surgery on thousands of MARFANS patients, and Dr. Braverman (or any other Cardiologist with extensive experience) who has seen thousands of Marfans patients. Here's their numbers. They are out of state but I will work with their recommendations to assist you locally but if at all possible, make the drive (or flight) and let them guide US on how to best care for you."

Keep fighting for yourself...we are behind you.

OK Lee

Suzie Glassey <soozeege@...> wrote:

Hi

great to hear from you. Wow that must have been such a surprise for you. I was fortunate i was diagnosed even though i was what they thought to be a mutation owing to the fact that no one else showed these features that you are familiar with.But I do know of other people who have been jerked about by the medical profession with their diagnoses dispite having most of the features. Sometimes i wonder if some doctors are interested at all. You would think they would be interested enough to get educated or is it just a job. I often find myself repeating myself. Marfans should never be taken lightly as i well know after having an out of the blue dissection 3 yrs ago at 4.5cm.

You take care and keep up the good work. If you are unhappy about the care you are getting jump about a bit and let them know since no one else will.

Sue

deborahtaulbee <deborahtaulbee@yahoo.com> wrote:

Hi everyone, I'm fine. Just wanted you all to know I havn't deserted
you my computer is down temp. But I do have a friends I'm using. I
have a question. I went to a cardiologist that I've never seen
before, he looked at me without looking at the records I brought in
and asked me why I was there, I told him my doctor wanted me to see
him since I have Marfans, MVP, and Aortic root dialation 4.0, I swear
to you this doctor looked me right in the eye and said "you don't
have Marfans". WHAT!!!
Boy was I ticked, I thought how can he not even examine me or look at
my records and say something like that to me. How irresponsible is
that. First of all I would do cart wheels if I didn't have it but to
play with emotions like that. And if I didn't have the knowledge I
have I might have even believed him and possible put myself in danger
doing what i've been told not to do. I havn't spoken to my doctor yet
about this, I'm sure she won't be happy But I did tell him that since
he hasn't even so much as listened to my heart, I think I will
continue to do according to my other cardiologist, that did an Echo,
stress test, 24 hour holter monitor, a spinal exam, measured my arm
spane etc. It was almost as though he was disappointed that he wasn't
scheduling me for surgery next week. So, as I was leaving he said I
should reschedule another appointment in six months with him. I was
very stern, looked him in the eye and said Thank you for your time
but I certainly will not be back. I was beside myself that a doctor
would be so negligent. How happy would I be if he we're right, all
the crap we have all been through and he said, just cause your tall
doesn't mean you have Marfans. So, I asked him, Does an aorta grow?
He said No, well how do you explain that mine was 2.9 in 2000 and 4.0
in 2006? And a history of scoliosis, mitra valve prolapse with
regergatation, pulmonary desease, arms and legs that don't fit the
normal measurements, and had to start wearing dentures at the age of
seventeen because of teeth crowded so badly and very high mouth
pallet. He didn't have the right answers. He actually said, well who
else in your family has been diagnosed, all the horror stories i've
heard we have all gone through with the ignorance of the medical
profession concerning Marfans I was living it right there in my face.
WHAT A JERK HE WAS!

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Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

#4100

From: "Iowa Marf" <iowamarf@...>
Date: Sun Jan 21, 2007 2:21 am
Subject: FW: Re:Kenn @ chatsupport

iowamarf

Offline

Laugh, share and connect with Windows Live Messenger

For those who get messages in your email, this is a duplicate. For those who read on-line it was only on the board about an hour at the most so I'm reposting it. I don't think we will get the messages back from Jun 06- Jan 12. If there is something you remember posting that should be reposted for the archives to show please do so.

I received the following message and was asked to post it. You may send any memories or support to Michelle and/or the list.

Kenn posted a few times last year, his nickname was wkd61usa if you wish to search for them. He had had major aortic surgery at the time he posted, he lost his father at 41 and his son and 2 brothers have Marfan also.

From:  Michelle Kellogg <mkell65@yahoo.com>
To:  iowamarf@hotmail.com
Subject:  Re:Kenn @ chatsupport
Date:  Thu, 11 Jan 2007 08:18:10 -0800 (PST)

Hello,

My name is Michelle and my brother Kenn Duvall had you in his saved box. That is how I got your email. I don't know how to get ahold of anyone with the Marfan group. I just wanted to let his friends there know that he passed away on December 31st due to his arotic dissection. He entered the hopsital the day before. It's just a horrible thing. Once again, I just want to let his friends there know. Can you help me with this?

Thank You,

Michelle Kellogg

Have a good one!!! ( and I mean it)

Michelle

........

.........

#4099

From: Suzie Glassey <soozeege@...>
Date: Sun Jan 21, 2007 2:15 am
Subject: Re: Make sure your doctors are educated in Marfans

soozeege

Offline

great to hear from you. Wow that must have been such a surprise for you. I was fortunate i was diagnosed even though i was what they thought to be a mutation owing to the fact that no one else showed these features that you are familiar with.But I do know of other people who have been jerked about by the medical profession with their diagnoses dispite having most of the features. Sometimes i wonder if some doctors are interested at all. You would think they would be interested enough to get educated or is it just a job. I often find myself repeating myself. Marfans should never be taken lightly as i well know after having an out of the blue dissection 3 yrs ago at 4.5cm.

You take care and keep up the good work. If you are unhappy about the care you are getting jump about a bit and let them know since no one else will.

Sue

deborahtaulbee <deborahtaulbee@...> wrote:

Hi everyone, I'm fine. Just wanted you all to know I havn't deserted
you my computer is down temp. But I do have a friends I'm using. I
have a question. I went to a cardiologist that I've never seen
before, he looked at me without looking at the records I brought in
and asked me why I was there, I told him my doctor wanted me to see
him since I have Marfans, MVP, and Aortic root dialation 4.0, I swear
to you this doctor looked me right in the eye and said "you don't
have Marfans". WHAT!!!
Boy was I ticked, I thought how can he not even examine me or look at
my records and say something like that to me. How irresponsible is
that. First of all I would do cart wheels if I didn't have it but to
play with emotions like that. And if I didn't have the knowledge I
have I might have even believed him and possible put myself in danger
doing what i've been told not to do. I havn't spoken to my doctor yet
about this, I'm sure she won't be happy But I did tell him that since
he hasn't even so much as listened to my heart, I think I will
continue to do according to my other cardiologist, that did an Echo,
stress test, 24 hour holter monitor, a spinal exam, measured my arm
spane etc. It was almost as though he was disappointed that he wasn't
scheduling me for surgery next week. So, as I was leaving he said I
should reschedule another appointment in six months with him. I was
very stern, looked him in the eye and said Thank you for your time
but I certainly will not be back. I was beside myself that a doctor
would be so negligent. How happy would I be if he we're right, all
the crap we have all been through and he said, just cause your tall
doesn't mean you have Marfans. So, I asked him, Does an aorta grow?
He said No, well how do you explain that mine was 2.9 in 2000 and 4.0
in 2006? And a history of scoliosis, mitra valve prolapse with
regergatation, pulmonary desease, arms and legs that don't fit the
normal measurements, and had to start wearing dentures at the age of
seventeen because of teeth crowded so badly and very high mouth
pallet. He didn't have the right answers. He actually said, well who
else in your family has been diagnosed, all the horror stories i've
heard we have all gone through with the ignorance of the medical
profession concerning Marfans I was living it right there in my face.
WHAT A JERK HE WAS!

Send instant messages to your online friends http://au.messenger.yahoo.com

#4098

From: scott allen <saazgr81@...>
Date: Sun Jan 21, 2007 12:33 am
Subject: Re: Make sure your doctors are educated in Marfans

saazgr81

Offline

Deborah, I know what you mean on the doctor incompetence. YESTERDAY, Friday, I called my Primary Care physician to get them to write me my perscription for Metroprolol. Then tonight, about 5 pm, I go in to the drug store to pick it up. Guess what? They had yet to call it in. I had enough to take my Sat dose, but what about Sunday? How can it take them 32+ hours, to write a simple perscription? I dont trust the doctors in this office to begin with, then something so important, they simply dont get it taken care of? Gee, I see how important MY HEALTH is to them. IF ONLY I had a choice in the matter, I would definately take myself to someone else.

I know the situation is a little different, but I cannot wait til Feb 13, when I get to see the geneticist, and cardiologist that supposedly know about Marfans. Maybe I will feel better, and more confident in their knowledge.

Scott

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Try the Yahoo! Mail Beta.

#4097

From: "deborahtaulbee" <deborahtaulbee@...>
Date: Sat Jan 20, 2007 11:27 pm
Subject: Make sure your doctors are educated in Marfans

deborahtaulbee

Offline

Hi everyone, I'm fine. Just wanted you all to know I havn't deserted
you my computer is down temp. But I do have a friends I'm using. I
have a question. I went to a cardiologist that I've never seen
before, he looked at me without looking at the records I brought in
and asked me why I was there, I told him my doctor wanted me to see
him since I have Marfans, MVP, and Aortic root dialation 4.0, I swear
to you this doctor looked me right in the eye and said "you don't
have Marfans". WHAT!!!
Boy was I ticked, I thought how can he not even examine me or look at
my records and say something like that to me. How irresponsible is
that. First of all I would do cart wheels if I didn't have it but to
play with emotions like that. And if I didn't have the knowledge I
have I might have even believed him and possible put myself in danger
doing what i've been told not to do. I havn't spoken to my doctor yet
about this, I'm sure she won't be happy But I did tell him that since
he hasn't even so much as listened to my heart, I think I will
continue to do according to my other cardiologist, that did an Echo,
stress test, 24 hour holter monitor, a spinal exam, measured my arm
spane etc. It was almost as though he was disappointed that he wasn't
scheduling me for surgery next week. So, as I was leaving he said I
should reschedule another appointment in six months with him. I was
very stern, looked him in the eye and said Thank you for your time
but I certainly will not be back. I was beside myself that a doctor
would be so negligent. How happy would I be if he we're right, all
the crap we have all been through and he said, just cause your tall
doesn't mean you have Marfans. So, I asked him, Does an aorta grow?
He said No, well how do you explain that mine was 2.9 in 2000 and 4.0
in 2006?  And a history of scoliosis, mitra valve prolapse with
regergatation, pulmonary desease, arms and legs that don't fit the
normal measurements, and had to start wearing dentures at the age of
seventeen because of teeth crowded so badly and very high mouth
pallet. He didn't have the right answers. He actually said, well who
else in your family has been diagnosed, all the horror stories i've
heard we have all gone through with the ignorance of the medical
profession concerning Marfans I was living it right there in my face.
WHAT A JERK HE WAS!

#4096

From: "iowamarf" <iowamarf@...>
Date: Sat Jan 20, 2007 1:40 am
Subject: CHAT

iowamarf

Offline

We have a Yahoo Conference in progress - if you tried earlier, Yahoo
went down for a bit but we are back!

IM iowamarf

#4093

From: "iowamarf" <iowamarf@...>
Date: Thu Jan 18, 2007 1:19 am
Subject: chats

iowamarf

Offline

Yahoo is no longer supporting chat rooms.  We are using Yahoo
messenger.  Please IM iowamarf or veldaroyce for the evening chats.
Tuesday afternoons will depend on schedules, can try iowamarf or post
yourself.

Yahoo messenger is a free service and can be downloaded from
yahoomessenger.com

Reply | Forward | Messages in this Topic (2)

#4092

From: "Darlene`" <swtnewfiegal@...>
Date: Thu Jan 18, 2007 1:00 am
Subject: can someone help me here

swtnewfiegal

Offline

Hi

Just trying to figure out where you have this chat to. i went into the
link section under emergency chat but no one was in there, can someone
pls assist me here

Darlene

#4089

From: Debbie Clark <dclark150@...>
Date: Tue Jan 16, 2007 7:32 pm
Subject: Re: coumadin

debbiec50175

Offline

My nephew had his valve replaced during the summer of his senior year of college. By the time school started in the fall he was ready and able to carry his packpack with his books in it (although not full) without any problems.

Debbie C.

tabitha spacht <underfire118@...> wrote:

I was thinking of going ahead and pushing for the
surgery because I do not want to be in the middle of
my last year of college and have to the surgery.

The only negative I have been told about having the
surgery now is that it will be more difficult to have
children because of the coumadin. They did not tell me
about the side effects of the drugs. This definitely
gives me something more to consider.

--- Heather <hethbean@yahoo.com> wrote:

>>

__________________________________________________________
Any questions? Get answers on any topic at www.Answers.yahoo.com. Try it now.

#4087

From: KIMBERLY MANSI <kmansi@...>
Date: Tue Jan 16, 2007 5:19 pm
Subject: Re: coumadin

smansi8

Offline

Hi Tabitha,

I think coumadin makes any procedure more difficult. I can not give you advice about heart surgery. What you need to consider is the rate of growth of your aorta within the past few years and your family history of dissection. I am not sure what your cardiologist or surgeon has told you. If surgery is a must, then you must have it done for your health and the health of your future. That is the first decision you have to make...everything else you will deal with in time.

As far as children go there will be much to consider regarding your health but deal with that at that time. First things first. I would love to talk to you about the issues of children when you are interested. In fact, I am starting to write a book about that decision and I hope to get it published. I was left in the cold two years ago when I was deciding about whether to birth my own child or adopt. It was a hard place to be and there were little resources and I couldn't find anyone really to talk to.

Good luck to you in your deicion, but remember first things first...if you need the surgery the sooner the better. You can always take a semester or quarter off. Health comes first!

Take care,

Kim

tabitha spacht <underfire118@...> wrote:

Thank you for sharing. I have recently been faced with
having to make the choice on whether to go ahead an
get my entire aorta replaced immediately or to wait.
The issue I am facing is that I am currently in
college, and there are not many times during the year
when I have six weeks where I can be operated on. I
was thinking of going ahead and pushing for the
surgery because I do not want to be in the middle of
my last year of college and have to the surgery.

The only negative I have been told about having the
surgery now is that it will be more difficult to have
children because of the coumadin. They did not tell me
about the side effects of the drugs. This definitely
gives me something more to consider.

--- Heather <hethbean@yahoo.com> wrote:

> I've been on coumadin for 22 years....it is very
> important to have
> regular coumadin (INR) checks,they always told me
> that and I said to
> my self"yea...yea...yea"
> However;
>
> as the course of everyday life it is normal for
> there to be
> microscopic tears in the capillaries in ones body
>
> I have found that through haveing an active
> lifestyle that if my
> blood is too thin that this can exasparate the small
> bleed and make
> it become a significant bleeding problem
>
> I have had intra-muscular bleeds many times,the pain
> is unbearable
> Everytime, I have to go to the ER,to make sure my
> dissection has not
> torn,and get an INR in the ER,sometimes I have to
> have a transfusion
> or a reversal(vitamin K treatment)
>
> Everytime I have an intramusclular bleed I have
> nerve damage and the
> permanent loss of function to the muscle involved.
>
> They make a INR home testing machine (its just like
> the home
> diabetes test machine) everyone on coumadin should
> have
> one,sometimes insurence will cover the cost
>
>
>

__________________________________________________________
Any questions? Get answers on any topic at www.Answers.yahoo.com. Try it now.

#4086

From: mary brozik <merryreader@...>
Date: Tue Jan 16, 2007 11:57 am
Subject: Re: coumadin

merryreader

Offline

agrees with talking to your doctor...alot.....about the wonderful world of coumidan.. Not to make things sound even scarier for you, but speaking as a person who has 2 mechanical valves and a teflon aorta taking blood thinners has been an experience. I can never stop taking blood thinners, even for minor things like tooth pulling, had to go to the hospital to have it done. But that is just me keep in mind everyone is different... sometimes we don't have an option when I had my surgery was asked if I wanted bio or mechanical....I said mechanical because having the surgery at such an early age was possible I would have to have valves replaced going bio route at least one time and couldn't even think about another surgery before facing my first one. As it turns out doc said after he got "in there" bio wouldn't have Even been an option.

I guess what I'm trying to say is ask alot of questions, research as much as you can and you'll be able to handle whatever comes along.

take care

Mary

legendheir <legendheir@...> wrote:

Hi Tabitha,

I can so appreciate the thoughts running through your mind right now. Some people do not have to be on coumadin for their entire life (such as myself), while others do. All depends on the surgery, the surgeon and the procedures. I would really spend time speaking to your surgeon and/or specialist about it and talk openly about your fears/concerns around having children one day.

It is always best to consider surgery when you are more healthy. Your body is stronger and recovery generally is faster. I waited to have my mitral valve repair done and as a result, got more and more sick/weak. However, when push came to shove and the specialist told me that it was time for the surgery, I couldn't have it right away due to the backlog of patients awaiting surgery. So I spent from October till April camped out on the couch not being allowed to do anything and I am SO GLAD I did because I was much more healthy going into the surgery having had a good deal of rest and had time to prepare myself as well. My recovery was very fast and went smoothly.

My thoughts are with you on your decision and know that we are here to help support you...

Karen in Ontario

legendheir@sympatico.ca

----- Original Message -----

From: tabitha spacht

To: marfans_support_and_chat@yahoogroups.com

Sent: Tuesday, January 16, 2007 1:46 AM

Subject: Re: [marfans_support_and_chat] coumadin

Thank you for sharing. I have recently been faced with
having to make the choice on whether to go ahead an
get my entire aorta replaced immediately or to wait.
The issue I am facing is that I am currently in
college, and there are not many times during the year
when I have six weeks where I can be operated on. I
was thinking of going ahead and pushing for the
surgery because I do not want to be in the middle of
my last year of college and have to the surgery.

The only negative I have been told about having the
surgery now is that it will be more difficult to have
children because of the coumadin. They did not tell me
about the side effects of the drugs. This definitely
gives me something more to consider.

--- Heather <hethbean@yahoo.com> wrote:

> I've been on coumadin for 22 years....it is very
> important to have
> regular coumadin (INR) checks,they always told me
> that and I said to
> my self"yea...yea...yea"
> However;
>
> as the course of everyday life it is normal for
> there to be
> microscopic tears in the capillaries in ones body
>
> I have found that through haveing an active
> lifestyle that if my
> blood is too thin that this can exasparate the small
> bleed and make
> it become a significant bleeding problem
>
> I have had intra-muscular bleeds many times,the pain
> is unbearable
> Everytime, I have to go to the ER,to make sure my
> dissection has not
> torn,and get an INR in the ER,sometimes I have to
> have a transfusion
> or a reversal(vitamin K treatment)
>
> Everytime I have an intramusclular bleed I have
> nerve damage and the
> permanent loss of function to the muscle involved.
>
> They make a INR home testing machine (its just like
> the home
> diabetes test machine) everyone on coumadin should
> have
> one,sometimes insurence will cover the cost
>
>
>

__________________________________________________________
Any questions? Get answers on any topic at www.Answers.yahoo.com. Try it now.

merryreader@...

Life always needs to be lived to the fullest each and everyday

Never Miss an Email
Stay connected with Yahoo! Mail on your mobile. Get started!

#4085

From: "legendheir" <legendheir@...>
Date: Tue Jan 16, 2007 7:39 am
Subject: Re: coumadin

sky_carter_2003

Offline

Hi Tabitha,

I can so appreciate the thoughts running through your mind right now. Some people do not have to be on coumadin for their entire life (such as myself), while others do. All depends on the surgery, the surgeon and the procedures. I would really spend time speaking to your surgeon and/or specialist about it and talk openly about your fears/concerns around having children one day.

It is always best to consider surgery when you are more healthy. Your body is stronger and recovery generally is faster. I waited to have my mitral valve repair done and as a result, got more and more sick/weak. However, when push came to shove and the specialist told me that it was time for the surgery, I couldn't have it right away due to the backlog of patients awaiting surgery. So I spent from October till April camped out on the couch not being allowed to do anything and I am SO GLAD I did because I was much more healthy going into the surgery having had a good deal of rest and had time to prepare myself as well. My recovery was very fast and went smoothly.

My thoughts are with you on your decision and know that we are here to help support you...

Karen in Ontario

legendheir@...

----- Original Message -----

From: tabitha spacht

To: marfans_support_and_chat@yahoogroups.com

Sent: Tuesday, January 16, 2007 1:46 AM

Subject: Re: [marfans_support_and_chat] coumadin

Thank you for sharing. I have recently been faced with
having to make the choice on whether to go ahead an
get my entire aorta replaced immediately or to wait.
The issue I am facing is that I am currently in
college, and there are not many times during the year
when I have six weeks where I can be operated on. I
was thinking of going ahead and pushing for the
surgery because I do not want to be in the middle of
my last year of college and have to the surgery.

The only negative I have been told about having the
surgery now is that it will be more difficult to have
children because of the coumadin. They did not tell me
about the side effects of the drugs. This definitely
gives me something more to consider.

--- Heather <hethbean@yahoo.com> wrote:

> I've been on coumadin for 22 years....it is very
> important to have
> regular coumadin (INR) checks,they always told me
> that and I said to
> my self"yea...yea...yea"
> However;
>
> as the course of everyday life it is normal for
> there to be
> microscopic tears in the capillaries in ones body
>
> I have found that through haveing an active
> lifestyle that if my
> blood is too thin that this can exasparate the small
> bleed and make
> it become a significant bleeding problem
>
> I have had intra-muscular bleeds many times,the pain
> is unbearable
> Everytime, I have to go to the ER,to make sure my
> dissection has not
> torn,and get an INR in the ER,sometimes I have to
> have a transfusion
> or a reversal(vitamin K treatment)
>
> Everytime I have an intramusclular bleed I have
> nerve damage and the
> permanent loss of function to the muscle involved.
>
> They make a INR home testing machine (its just like
> the home
> diabetes test machine) everyone on coumadin should
> have
> one,sometimes insurence will cover the cost
>
>
>

__________________________________________________________
Any questions? Get answers on any topic at www.Answers.yahoo.com. Try it now.

#4084

From: tabitha spacht <underfire118@...>
Date: Tue Jan 16, 2007 6:46 am
Subject: Re: coumadin

underfire118

Offline

Thank you for sharing. I have recently been faced with
having to make the choice on whether to go ahead an
get my entire aorta replaced immediately or to wait.
The issue I am facing is that I am currently in
college, and there are not many times during the year
when I have six weeks where I can be operated on. I
was thinking of going ahead and pushing for the
surgery because I do not want to be in the middle of
my last year of college and have to the surgery.

The only negative I have been told about having the
surgery now is that it will be more difficult to have
children because of the coumadin. They did not tell me
about the side effects of the drugs. This definitely
gives me something more to consider.

--- Heather <hethbean@...> wrote:

> I've been on coumadin for 22 years....it is very
> important to have
> regular coumadin (INR) checks,they always told me
> that and I said to
> my self"yea...yea...yea"
>  However;
>
> as the course of everyday life it is normal for
> there to be
> microscopic tears in the capillaries in ones body
>
> I have found that through haveing an active
> lifestyle that if my
> blood is too thin that this can exasparate the small
> bleed and make
> it become a significant bleeding problem
>
> I have had intra-muscular bleeds many times,the pain
> is unbearable
> Everytime, I have to go to the ER,to make sure my
> dissection has not
> torn,and get an INR in the ER,sometimes I have to
> have a transfusion
> or a reversal(vitamin K treatment)
>
> Everytime I have an intramusclular bleed I have
> nerve damage and the
> permanent loss of function to the muscle involved.
>
> They make a INR home testing machine (its just like
> the home
> diabetes test machine)  everyone on coumadin should
> have
> one,sometimes insurence will cover the cost
>
>
>

________________________________________________________________________________\
____
Any questions? Get answers on any topic at www.Answers.yahoo.com.  Try it now.

#4081

From: "Lori G" <lageorgeff@...>
Date: Mon Jan 15, 2007 8:06 pm
Subject: Re: Re: back braces??

pacatwm1

Offline

What Oils are used
Customizing RDT

Well I excerpted a few lines from the web page BUT it came from a site called yin-yang colonics. I am not sure this is something that you would want to pursue.

Raindrop Therapy Technique

Other Uses for the Oils in the RDT
Scriptural Basis for RDT

What is the Raindrop Therapy Technique?

Raindrop technique originated in the 1980's from the research of D. Gary Young working with a Lakota medicine man named Wallace Black Elk. It integrates massage, utilizing the power of essential oils in bringing the body into structural and electrical alignment

Raindrop Technique is based on the theory that many types of scoliosis and spinal misalignments are caused by viruses or bacteria that lie dormant along the spine. These pathogens create inflammation, which in turn, contorts and disfigures the spinal column

#4080

From: Donna Bohlar-Schroeder <dcbohlar@...>
Date: Mon Jan 15, 2007 4:53 pm
Subject: Re: Re: back braces??

dcbohlar

Offline

thank you very much!!

"If you don't like something change it; if you can't change it, change the way you think about it."

Donna Bohlar-Schroeder

979-480-3774

We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.

#4079

From: "Lori G" <lageorgeff@...>
Date: Mon Jan 15, 2007 2:22 pm
Subject: Re: Re: back braces??

pacatwm1

Offline

http://www.scoliosissystems.com/spinecor.html

I thought i would look and i have a couple of web sites for non rigid back braces for scoliosis well at least one and perhaps this will lead to others. Hope it helps Lori

#4078

From: Donna Bohlar-Schroeder <dcbohlar@...>
Date: Mon Jan 15, 2007 2:13 pm
Subject: Re: Re: back braces??

dcbohlar

Offline

Thanks for the info...that is the bit I saw on TV..I just couldn't remember when or where.

I will check into a physical therapist for her..I have also heard something about "raindrop therapy" Have you heard anything about that treatment??

Thanks a million!!

"If you don't like something change it; if you can't change it, change the way you think about it."

Donna Bohlar-Schroeder

979-480-3774

Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

#4077

From: "esso2k5" <esso2k5@...>
Date: Mon Jan 15, 2007 9:45 am
Subject: Re: back braces??

esso2k5

Offline

--- In marfans_support_and_chat@yahoogroups.com, "legz"
<evieshuman28@...> wrote:
>
> --- In marfans_support_and_chat@yahoogroups.com, "esso2k5"
> <esso2k5@> wrote:
> >
> > --- In marfans_support_and_chat@yahoogroups.com, Suzie Glassey
> > <soozeege@> wrote:
> > >
> > > Havent heard of soft braces but Brittany has worn a boston brace for
> > 2 yrs and it hasnt helped. Surgery next year. Her brother is 14 and
> > his improved with growth.
> > >   Sue
> > >
> > > KIMBERLY MANSI <kmansi@> wrote:
> > >           It probably is important that you get her involved in a
> > low impact exercise program.  A very good exercise program for us is
> > non-competitive water exercises, swimming, water walking or jogging
> > and a good stretching program and light weights outside of the water.
> >  As far as the back brace you can find almost anything online.
> > >
> > > Donna <dcbohlar@> wrote:       Has anyone heard about the "soft
> > back brace" that is adjustable?? I
> > > caught a glimpse of it on TV, but I'm unable to find anything on
the
> > > net..I know it probably has a different name...My daughter
(Jemma) is
> > > 12 and has Marfan's...She has a slight case of scoliosis..It had
> > > actually improved at one time...but I feel it is getting worse now
> > > that they have ban her from all of her sports...
> > >
> > > Thanks....God Bless you all...I have gained so much from this site!!
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >  Send instant messages to your online friends
> > http://au.messenger.yahoo.com
> > >
> > Check out this tv news report on scoliosis threatment...
> > You might have seen this..
> >
> > http://www.nbc4.tv/video/4656127/index.html
> > God Bless.
> >
> just wanted to share my experience with the boston brace....i
> fractured my sacrum two years ago...after months of agony the dr told
> me to try the boston brace.  2000 dollars later i was wearing this
> hard piece of plastic that if anything made my back and chest hurt
> more than ever.  I gave it a fair chance i wore it for about a month.
> Finally i told the dr i wasnt going to wear it anymore because of the
> discomfort.  he put me in physical therapy(what a novel idea), the PT
> helped more than any drug or brace and my fracture soon healed.  So
> now i have this expensive brace sitting in my closet collecting
> dust...sure wish i wouldve tried other treatment options before
> shelling out a lot of cash for nothing:)
> kelley
>
Back Braces???
Here's some info.

   www.spinecorporation.com
And here's the video
http://www.nbc4.tv/video/4656127/index.html
You might need to copy and paste.

Regards,

Esso

#4076

From: "legz" <evieshuman28@...>
Date: Mon Jan 15, 2007 8:35 am
Subject: Re: back braces??

evieshuman28

Offline

--- In marfans_support_and_chat@yahoogroups.com, "esso2k5"
<esso2k5@...> wrote:
>
> --- In marfans_support_and_chat@yahoogroups.com, Suzie Glassey
> <soozeege@> wrote:
> >
> > Havent heard of soft braces but Brittany has worn a boston brace for
> 2 yrs and it hasnt helped. Surgery next year. Her brother is 14 and
> his improved with growth.
> >   Sue
> >
> > KIMBERLY MANSI <kmansi@> wrote:
> >           It probably is important that you get her involved in a
> low impact exercise program.  A very good exercise program for us is
> non-competitive water exercises, swimming, water walking or jogging
> and a good stretching program and light weights outside of the water.
>  As far as the back brace you can find almost anything online.
> >
> > Donna <dcbohlar@> wrote:       Has anyone heard about the "soft
> back brace" that is adjustable?? I
> > caught a glimpse of it on TV, but I'm unable to find anything on the
> > net..I know it probably has a different name...My daughter (Jemma) is
> > 12 and has Marfan's...She has a slight case of scoliosis..It had
> > actually improved at one time...but I feel it is getting worse now
> > that they have ban her from all of her sports...
> >
> > Thanks....God Bless you all...I have gained so much from this site!!
> >
> >
> >
> >
> >
> >
> >
> >
> >  Send instant messages to your online friends
> http://au.messenger.yahoo.com
> >
> Check out this tv news report on scoliosis threatment...
> You might have seen this..
>
> http://www.nbc4.tv/video/4656127/index.html
> God Bless.
>
just wanted to share my experience with the boston brace....i
fractured my sacrum two years ago...after months of agony the dr told
me to try the boston brace.  2000 dollars later i was wearing this
hard piece of plastic that if anything made my back and chest hurt
more than ever.  I gave it a fair chance i wore it for about a month.
Finally i told the dr i wasnt going to wear it anymore because of the
discomfort.  he put me in physical therapy(what a novel idea), the PT
helped more than any drug or brace and my fracture soon healed.  So
now i have this expensive brace sitting in my closet collecting
dust...sure wish i wouldve tried other treatment options before
shelling out a lot of cash for nothing:)
kelley

#4075

From: "esso2k5" <esso2k5@...>
Date: Mon Jan 15, 2007 7:18 am
Subject: Re: back braces??

esso2k5

Offline

--- In marfans_support_and_chat@yahoogroups.com, Suzie Glassey
<soozeege@...> wrote:
>
> Havent heard of soft braces but Brittany has worn a boston brace for
2 yrs and it hasnt helped. Surgery next year. Her brother is 14 and
his improved with growth.
>   Sue
>
> KIMBERLY MANSI <kmansi@...> wrote:
>           It probably is important that you get her involved in a
low impact exercise program.  A very good exercise program for us is
non-competitive water exercises, swimming, water walking or jogging
and a good stretching program and light weights outside of the water.
  As far as the back brace you can find almost anything online.
>
> Donna <dcbohlar@...> wrote:       Has anyone heard about the "soft
back brace" that is adjustable?? I
> caught a glimpse of it on TV, but I'm unable to find anything on the
> net..I know it probably has a different name...My daughter (Jemma) is
> 12 and has Marfan's...She has a slight case of scoliosis..It had
> actually improved at one time...but I feel it is getting worse now
> that they have ban her from all of her sports...
>
> Thanks....God Bless you all...I have gained so much from this site!!
>
>
>
>
>
>
>
>
>  Send instant messages to your online friends
http://au.messenger.yahoo.com
>
Check out this tv news report on scoliosis threatment...
You might have seen this..

http://www.nbc4.tv/video/4656127/index.html
God Bless.

#4071

From: "legendheir" <legendheir@...>
Date: Sat Jan 13, 2007 2:23 am
Subject: Chat?

sky_carter_2003

Offline

Hi,

Could someone please explain the 'chat' to me...I am a newbie on this list and don't know if you just post to the list or if there is a place I have to go for the chat. Thanks so much!

Karen

legendheir@...

Reply | Forward | Messages in this Topic (3)

#4069

From: "Iowa Marf" <iowamarf@...>
Date: Fri Jan 12, 2007 11:59 pm
Subject: Group and chat

iowamarf

Offline

The MSN Entertainment Guide to Golden Globes is here. Get all the scoop.

Hopefully the messages from the last 6 months or so will reappear - I'm trying to find answers. If anyone knows more about Yahoo groups and has an idea I'll take it! Just a sub here :)

Until that point just a reminder we have Sunday, Wednesday, and Friday evening (in US) chats 8-? eastern time. We also are trying to have a chat Tuesdays 2-5 pm. Get an invite by IMing iowamarf or veldaroyce on Yahoo messenger. If there are substitutes they will be posted and anyone is welcome to post their IM and start a chat at anytime! If you don't know how email me at iowamarf@... or post.

#4068

From: Suzie Glassey <soozeege@...>
Date: Fri Jan 12, 2007 8:39 pm
Subject: Re: back braces??

soozeege

Offline

Havent heard of soft braces but Brittany has worn a boston brace for 2 yrs and it hasnt helped. Surgery next year. Her brother is 14 and his improved with growth.

Sue

KIMBERLY MANSI <kmansi@...> wrote:

It probably is important that you get her involved in a low impact exercise program. A very good exercise program for us is non-competitive water exercises, swimming, water walking or jogging and a good stretching program and light weights outside of the water. As far as the back brace you can find almost anything online.

Donna <dcbohlar@yahoo.com> wrote:

Has anyone heard about the "soft back brace" that is adjustable?? I
caught a glimpse of it on TV, but I'm unable to find anything on the
net..I know it probably has a different name...My daughter (Jemma) is
12 and has Marfan's...She has a slight case of scoliosis..It had
actually improved at one time...but I feel it is getting worse now
that they have ban her from all of her sports...

Thanks....God Bless you all...I have gained so much from this site!!

Send instant messages to your online friends http://au.messenger.yahoo.com

#4067

From: scott allen <saazgr81@...>
Date: Fri Jan 12, 2007 1:28 pm
Subject: Re: Friend's son has been told he has Marfan's

saazgr81

Offline

1-800-8-Marfan.

they will answer ANY questions they might have. Great organization from the little exposure I have had thus far. Request the packets of information, and they have it to a person WITHIN DAYS. They dont mess around. They have a list of their clinics, doctors, etc, and all ya gotta do is ask, and they will help.

Scott

Christy <mommysangellily@...> wrote:

Hello all, my friend's 16 year old son has been told he has Marphan's.
We live in Pensacola, FL and she is having trouble finding good Dr.'s
and support groups. I am going to encourage her to join in the chats
you all have......her son has had collapsed lungs, heart condition (not
sure the name of the one he has), scoliosis, hurts severly and
definetly falls into the physical description. If anyone can offer any
suggestions for her on how to handle all of this, it would be
appreciated. She is feeling very scared and very alone at this
point......and of course, some of the Dr's he sees say its not
Marfan's.....which upsets her more, but he was dianosed with it up
North.....take care.

Christy

Finding fabulous fares is fun.
Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains.

#4066

From: KIMBERLY MANSI <kmansi@...>
Date: Fri Jan 12, 2007 3:26 pm
Subject: Re: back braces??

smansi8

Offline

It probably is important that you get her involved in a low impact exercise program. A very good exercise program for us is non-competitive water exercises, swimming, water walking or jogging and a good stretching program and light weights outside of the water. As far as the back brace you can find almost anything online.

Donna <dcbohlar@...> wrote:

Has anyone heard about the "soft back brace" that is adjustable?? I
caught a glimpse of it on TV, but I'm unable to find anything on the
net..I know it probably has a different name...My daughter (Jemma) is
12 and has Marfan's...She has a slight case of scoliosis..It had
actually improved at one time...but I feel it is getting worse now
that they have ban her from all of her sports...

Thanks....God Bless you all...I have gained so much from this site!!

#4065

From: "merryreader" <merryreader@...>
Date: Fri Jan 12, 2007 3:03 pm
Subject: Re: back braces??

merryreader

Offline

Sorry to hear that your daughter is getting worse.  As far as the brace
goes am not much of a tv watcher but I know for a fact that you can go
to some pharmacies and or health supply stores and purchase things like
back braces without perscription.  I have done it for a soft neck
brace.  They have all sorts of braces and gagdets to help people who
have disabilites to do everyday things.  Take Care.
Mary

-- In marfans_support_and_chat@yahoogroups.com, "Donna" <dcbohlar@...>
wrote:
>
> Has anyone heard about the "soft back brace" that is adjustable?? I
> caught a glimpse of it on TV, but I'm unable to find anything on the
> net..I know it probably has a different name...My daughter (Jemma)
is
> 12 and has Marfan's...She has a slight case of scoliosis..It had
> actually improved at one time...but I feel it is getting worse now
> that they have ban her from all of her sports...
>
> Thanks....God Bless you all...I have gained so much from this site!!
>

#4064

From: "Donna" <dcbohlar@...>
Date: Fri Jan 12, 2007 2:42 pm
Subject: back braces??

dcbohlar

Offline

Has anyone heard about the "soft back brace" that is adjustable?? I
caught a glimpse of it on TV, but I'm unable to find anything on the
net..I know it probably has a different name...My daughter (Jemma) is
12 and has Marfan's...She has a slight case of scoliosis..It had
actually improved at one time...but I feel it is getting worse now
that they have ban her from all of her sports...

Thanks....God Bless you all...I have gained so much from this site!!

#4062

From: KIMBERLY MANSI <kmansi@...>
Date: Fri Jan 12, 2007 10:05 am
Subject: Re: Friend's son has been told he has Marfan's

smansi8

Offline

Tell her to call the Marfans Foundation they should be able to recommend someone in her area, if no one is in her area, maybe she could make a once a year road trip with her son to a reputable marfans clinic. If she can't find a primary doctor who has experience with Marfans maybe she can find a primary practitioner who specializes in rhumetology. Also get her involved in the National Marfans conferences too. Hope this helps.

Christy <mommysangellily@...> wrote:

Hello all, my friend's 16 year old son has been told he has Marphan's.
We live in Pensacola, FL and she is having trouble finding good Dr.'s
and support groups. I am going to encourage her to join in the chats
you all have......her son has had collapsed lungs, heart condition (not
sure the name of the one he has), scoliosis, hurts severly and
definetly falls into the physical description. If anyone can offer any
suggestions for her on how to handle all of this, it would be
appreciated. She is feeling very scared and very alone at this
point......and of course, some of the Dr's he sees say its not
Marfan's.....which upsets her more, but he was dianosed with it up
North.....take care.

Christy

#4061

From: Suzie Glassey <soozeege@...>
Date: Fri Jan 12, 2007 8:11 am
Subject: Re: Re: Brittany's newspaper article

soozeege

Offline

thankyou Lee

deborahtaulbee <deborahtaulbee@...> wrote:

--- In marfans_support_and_chat@yahoogroups.com, Lee Parks
<wt_lparks@...> wrote:
>
> Very nice article and a really sweet looking young lady.
>
> Sue Glassey <soozeege@...> wrote: Hi
> Take a peek under files. I have managed to put Brittanys recent
> newspaper article on there for you to read.
> Sue
>
> If I can find a picture of myself, it is incredible how much I
looked like her at that age, being 5'8" now gets comments, but when
I was 12-13 it was hurtful. I know how she feels, as you do. So just
tell her I said "we are very special people" and she is strong,
brave and beautiful, and I wish her the very best. I'm a dog lover,
maybe some day she can be my veterinarian.
>
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam? Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>

Send instant messages to your online friends http://au.messenger.yahoo.com

#4060

From: "Christy" <mommysangellily@...>
Date: Fri Jan 12, 2007 6:50 am
Subject: Friend's son has been told he has Marfan's

crazy1csd

Offline

Hello all, my friend's 16 year old son has been told he has Marphan's.
We live in Pensacola, FL and she is having trouble finding good Dr.'s
and support groups. I am going to encourage her to join in the chats
you all have......her son has had collapsed lungs, heart condition (not
sure the name of the one he has), scoliosis, hurts severly and
definetly falls into the physical description.  If anyone can offer any
suggestions for her on how to handle all of this, it would be
appreciated. She is feeling very scared and very alone at this
point......and of course, some of the Dr's he sees say its not
Marfan's.....which upsets her more, but he was dianosed with it up
North.....take care.

Christy