Just joined

[Guest guest]

Hi Tamara & welcome to our group!

We're glad you have joined us. I am going to assume that Zachary was

scanned for a STARband, is that correct? That is wonderful he was

just scanned & did not go thru the traditional casting, that saves

both mom & baby some tears

You are looking to find a place closer to go for adjustments, have

you asked the orthotist who scanned Zachary if that would be ok? I

think you will probably need to go to the same orthotist & clinic who

casted Zachary for adjustments and check ups, especially with the use

of the scanner, becuz at the adjustment & follow up appts, they will

probably scan his head at each appt to check his progress.

I can't ever remember hearing of anyone going to a diff. location for

adjustments & such, outside of a family who has moved to a different

area entirely. Usually, when you pay for a band, like the STARband

or DOCband, the cost of the band includes all adjustments & follow up

appts.. I can understand you wanting to find a closer place though

with a 6 hr wkly drive, been there! But the end result will be worth

it, a rounder head.

Zachary is at a good age to begin his treatment.

Welcome again to our group, we're glad you have joined us.

Debbie Abby's mom DOCGrad

MI

> Hi. My name is Tamara my son is Zachary and is 6 1/2 months. We

> live in ville, FL and just returned from seeing a doctor at

> the Miami Children's hospital. Zach was measured and scanned for a

> helmet--his back right side is pretty flat and he has some forhead

> bulging. After reading alot on this site, I feel a little better

> about things--at least I know we're not alone! I'm trying to find

> a place closer than Miami to get the helmet adjusted. We go back

to

> Miami in two weeks to get it, but if there is somewhere closer to

> ville to get it adjusted, please let me know! That would

> save us a 6hr drive every week.

>

> Thanks to everyone who post messages--this is a great site and my

> husband and I are so glad it's here for us.

>

> Tamara and Zach

> ville, FL

[Guest guest]

Tamara welcome we are so glad you are here. You say scanned so I am going to guess that you have a star band. You can check out orthoamericas site and see if you can find someone closer- Orthomerica maybe give them a call to see. If you cant there is a wonderful service out there that can provide you with free air transportation to and from your appointments so that you wouldn't have to drive all that way. We used them to go from TN to GA every week for my son's care. It is angel flight and they are wonderful. It is not income dependent nor is it based on the severity of your child's illness-just based on need. These are great great people wanting to help and providing a wonderful service. Please email me personally and I can give you details or help you get connected if you like. The Air Care Alliance

Beck bbbhand@...

[Guest guest]

Tamara,

Welcome to the group. We have many members in Florida so hopefully one of them

will respond soon about locations in ville. I assume you are getting a

STARband? It sounds like you already have the ball rolling which is excellent.

Zach is starting at a good age to get some really good correction pretty quick!

Good luck and keep us posted.

Marci (mom to )

Oklahoma

[Guest guest]

Hello, and welcome to the group. You didn't mention your name, so

I'll just say hi. I am fairly new here too, just recently was

diagnosed with fibromyalgia at the age of 56. You asked about

colonoscopy--I had one exactly 2 years ago this week, and about 8

months ago I started experiencing pain too, shoulders, knees, hips.

It progressed to all the rest of the joints, but the rheumatologist

says no RA due to negative blood tests, and the fact that the joints

don't swell hugely.

As anyone else here will tell you, these diseases are hard to

diagnose, and it may take some trials for you to find the right

doctor too. I had to deal with 3 physicians, 1 rheumy (so far) and 2

physical therapists. I'm learning to write things down to ask all

the professionals, and keep a pain journal. One PT told me that the

fibro was pretty much caused by my own negative thinking. Even the

rheumy said to " avoid stress " which is easy for her to say, she

doesn't have a husband with Parkinson's and a daughter expecting

triplets!

Best of luck to you, and be sure to avail yourself of the support and

suggestions of this group--they have helped me a great deal!

Judi in Indiana

[Guest guest]

Hi and welcome to the group...

I too was the same way as yourself.

Keep in mind that RA hides on one's body as a gene - in short, inherited

from a parent.

Also, keep in mind that treatments and medications today are 1000% better

than what they were when your dad was diagnosed.

Sometimes, though, it takes a while before the correct combination of meds

can be found.

Just hang in there and talk to the group - there are lots of great and

supportive people here.

Stay safe and God Bless

Pami

-- [ ] Just Joined

Hi,

I am a 51 year old man who I am assuming will be diagnosed with RA

pretty soon. My Rheumatologist who I've seen only twice puts

down " undifferentiated connective " on the diagnosis billing

statement. Not ready to officially call it yet, I guess. Up until 4

months ago I was as active as you could be, walking 9 miles a day.

Then I started to get bad leg pain at night and that progressed to

aches in the shoulders as well. I take one celebrex a day, but I

continue to ache most of the time especially my upper arm. What I'm

very curious about is the fact that 2 months before the onset of all

this I had a colonoscopy. Right after that I developed a body rash

similar to poison ivy. Then, came the muscle and joint pain.

Coincidence? Anyone ever have or hear of Ra coming on after something

invasive like a colonoscopy? In any case I continue to wonder what is

in store for me down the road. I watched my father suffer with RA and

I know he never could have gotten through the day without my mother.

Being divorced I often wonder how the heck I'm even gonna put my

socks on if this thing gets anywhere near the condition I saw in my

father. Thanks for letting me say some things and the best to all out

there.

[Guest guest]

Hi and welcome to our group. We have several members in your position with

no definite diagnoses, some waiting several years for answers.

It is possible that you developed an infection as a result of the scope.

Infections have been known to trigger rheumatic diseases especially when you

are already genetically predisposed to having RA. I¹m so sorry that your

dad suffers so much from RA. If you do have RA, there are many new meds

that have helped a lot so it¹s very possible that you won¹t suffer as much

as your father. Try to keep a positive attitude.

a

> Hi,

> I am a 51 year old man who I am assuming will be diagnosed with RA

> pretty soon. My Rheumatologist who I've seen only twice puts

> down " undifferentiated connective " on the diagnosis billing

> statement. Not ready to officially call it yet, I guess. Up until 4

> months ago I was as active as you could be, walking 9 miles a day.

> Then I started to get bad leg pain at night and that progressed to

> aches in the shoulders as well. I take one celebrex a day, but I

> continue to ache most of the time especially my upper arm. What I'm

> very curious about is the fact that 2 months before the onset of all

> this I had a colonoscopy. Right after that I developed a body rash

> similar to poison ivy. Then, came the muscle and joint pain.

> Coincidence? Anyone ever have or hear of Ra coming on after something

> invasive like a colonoscopy? In any case I continue to wonder what is

> in store for me down the road. I watched my father suffer with RA and

> I know he never could have gotten through the day without my mother.

> Being divorced I often wonder how the heck I'm even gonna put my

> socks on if this thing gets anywhere near the condition I saw in my

> father. Thanks for letting me say some things and the best to all out

> there.

>

>

>

>

[Guest guest]

Welcome to our " family " . You will find it a great group that will always be

there for you.

I have Fibromyalgia that went 14 years without being diagnosed other than it is

" all in your head " and was just given a diagnosis last July as to what it is.

Now on blood work a couple of months ago, there a couple of tests that showed

things that needed to be looked into more to rule out other illness. Today, I

just came from another blood test that will show just my sed rate. The lab tech

commented that with the prior one being so high, that we might be looking at

arthritis. He didn't say what kind but did say that the sed rate for a woman is

1 - 20 and mine was a 51. We shall see what it is again in the next couple of

days.

Sorry for the pain and all that led you to us but we/re glad you found us.

There are quite a few singles in the group that are faced with the concerns that

you have. Feel free to talk about your concerns, pain, medications, etc. There

will always be someone (or a whole bunch) that will empathize, share their

stories to help you, and help you through the rough times. Our Moderaters,

and a, are great for finding infomation when questions are posed. This

group is great! And I will guarantee you that once you get to know everyone,

you will have so many friends that you know are there for you when you need them

and they will become your " family " .

Welcome again. Hope to see you post often. With positive thoughts, Jan in CA

+/:=)

" iyaleth <iyaleth@...> " <iyaleth@...> wrote:Hi,

I am a 51 year old man who I am assuming will be diagnosed with RA

pretty soon. My Rheumatologist who I've seen only twice puts

down " undifferentiated connective " on the diagnosis billing

statement. Not ready to officially call it yet, I guess. Up until 4

months ago I was as active as you could be, walking 9 miles a day.

Then I started to get bad leg pain at night and that progressed to

aches in the shoulders as well. I take one celebrex a day, but I

continue to ache most of the time especially my upper arm. What I'm

very curious about is the fact that 2 months before the onset of all

this I had a colonoscopy. Right after that I developed a body rash

similar to poison ivy. Then, came the muscle and joint pain.

Coincidence? Anyone ever have or hear of Ra coming on after something

invasive like a colonoscopy? In any case I continue to wonder what is

in store for me down the road. I watched my father suffer with RA and

I know he never could have gotten through the day without my mother.

Being divorced I often wonder how the heck I'm even gonna put my

socks on if this thing gets anywhere near the condition I saw in my

father. Thanks for letting me say some things and the best to all out

there.

[Guest guest]

Renea,

Gulf War syndrome was caused by a bacteria known as

mycoplasma. A number of implanted women have been

found to have it. Whether it was introduced with their

implants, or if they immune system was suppressed so

that they picked it up, they got it!

The treatment is a small amount of antibiotics for and

extended period. Some of our women here have been on

this protocol successfully. Some people believe that

getting the body's natural flora back in balance will

allow the body to get rid of the mycoplasma.

If you'll share where you live, perhaps we can

recommend a plastic surgeon near you.

Hugs and prayers,

Rogene

[Guest guest]

Hi, I also have saline and am scheduled for explant in 1 week (scary).

I was careful who I chose because I wanted not just any surgeon but a

surgeon well experienced in explants. I believe there are 3 in the

US, Dr. Melmed in Dallas (who I am going to), Dr. Kolb in Atlanta, and

Dr. Feng in Illinois. It was a pretty fast decision for me, I just

decided one day to make the consultation and I flew up to see him,

although he usually makes the consultation for l day and the surgery

for the next. But I wanted to discuss everything with him first. My

husband, who isn't so supportive of this, told me last night that it

still wasn't too late to change my mind. He can't believe that they

are causing my problems....he said he looked up implants on the

internet and it stated they didn't cause any side effects. I asked

him if the article was written by the implant manufacturers....but

he's so mainstream, he won't even read alternate opinions. Anyway, I

fly up to Dallas on Sunday and operate on Monday. I wish you luck

with your surgery, if you choose the right doctor (to take out the

capsules as well, this is most important), then it will be fine. A

friend of mine told me that a friend we know took out her implants and

waited 2 yrs and her symptoms didn't change and she put them back in.

She said her explant surgery lasted about 20 minutes. I said that

they probably didn't remove the capsules so that's why she didn't get

any better. They said she had the explant surgery with a regular PS

here in Mexico (where I live). Sandy

> Hi Just wanted to introduce myself. I am Renea 40 years old

> I had my saline implants in April 2004. In August 2004 things

> started happening to me --My fingers got real painful and swollen.

> That would come and go. In October same thing with my foot. The

> doctor just gave me ibuprofen and a cortisone shot. Then in November

> the same thing happened in my shoulder, another couple of shots!!

> By December both of my feet were so swollen and painful I could

> hardly walk. Then it spread to my hands, wrist and knee. I was sent

> to a Rhuematologist and he diagnosed me with Rhuematiod arthritis.

> All my mri and xrays were normal except they showed swelling.

> My labs were not in the range for rheumatiod. He put me on prednisone

> which does help. Though I know it is bad for me. I was also put on

> Methotrexate. It is horrible and I am not going to stay on it. It

> doesn't seem to help. Grasping for any and all help I found a woman

> who does meridian stress assessment. After her tests, she said she

> thought I did not have true arthritis but, my body is mimiking it.

> I have traces of silicon toxicity and something to do with Gulf war

> syndrome? How could this be? I searched and searched and prayed for

> God to give me signs to help me. My husband stumbled on this site!!

> There is no info out there and my doctors think I am nuts to relate

> this to my implants! But in my heart something told me my implants

> are making me sick. After reading your stories I have called to get

> mine out. I am looking at the end of June. I am so scared of surgery.

> Can someone explain to me the right way to have them out? Thanks

> jra83 (Renea)

>

>

>

> __________________________________

> Discover

> Get on-the-go sports scores, stock quotes, news and more. Check it out!

> http://discover./mobile.html

[Guest guest]

It all sounds scary-I wish you the best-please keep in touch

with updates reguarding your condition. My husband is the one

who found this site. He has been so supportive and caring during

all my pain. I go in 2 weeks for the consult and will ask about

the capsule. She said it would take an hour for the explant. Are

you asking for your implants since you paid for them. I want

mine or at least pictures. Are yours under the muscle? I am going

to get hypnotized for the surgery anxiety. I get so nervous but,

I see this as a positive sign from God. Good Luck my prayers are

with you. Renea

--- sandy <interart81@...> wrote:

> Hi, I also have saline and am scheduled for explant in 1 week (scary).

> I was careful who I chose because I wanted not just any surgeon but a

> surgeon well experienced in explants. I believe there are 3 in the

> US, Dr. Melmed in Dallas (who I am going to), Dr. Kolb in Atlanta, and

> Dr. Feng in Illinois. It was a pretty fast decision for me, I just

> decided one day to make the consultation and I flew up to see him,

> although he usually makes the consultation for l day and the surgery

> for the next. But I wanted to discuss everything with him first. My

> husband, who isn't so supportive of this, told me last night that it

> still wasn't too late to change my mind. He can't believe that they

> are causing my problems....he said he looked up implants on the

> internet and it stated they didn't cause any side effects. I asked

> him if the article was written by the implant manufacturers....but

> he's so mainstream, he won't even read alternate opinions. Anyway, I

> fly up to Dallas on Sunday and operate on Monday. I wish you luck

> with your surgery, if you choose the right doctor (to take out the

> capsules as well, this is most important), then it will be fine. A

> friend of mine told me that a friend we know took out her implants and

> waited 2 yrs and her symptoms didn't change and she put them back in.

> She said her explant surgery lasted about 20 minutes. I said that

> they probably didn't remove the capsules so that's why she didn't get

> any better. They said she had the explant surgery with a regular PS

> here in Mexico (where I live). Sandy

>

>

> > Hi Just wanted to introduce myself. I am Renea 40 years old

> > I had my saline implants in April 2004. In August 2004 things

> > started happening to me --My fingers got real painful and swollen.

> > That would come and go. In October same thing with my foot. The

> > doctor just gave me ibuprofen and a cortisone shot. Then in November

> > the same thing happened in my shoulder, another couple of shots!!

> > By December both of my feet were so swollen and painful I could

> > hardly walk. Then it spread to my hands, wrist and knee. I was sent

> > to a Rhuematologist and he diagnosed me with Rhuematiod arthritis.

> > All my mri and xrays were normal except they showed swelling.

> > My labs were not in the range for rheumatiod. He put me on prednisone

> > which does help. Though I know it is bad for me. I was also put on

> > Methotrexate. It is horrible and I am not going to stay on it. It

> > doesn't seem to help. Grasping for any and all help I found a woman

> > who does meridian stress assessment. After her tests, she said she

> > thought I did not have true arthritis but, my body is mimiking it.

> > I have traces of silicon toxicity and something to do with Gulf war

> > syndrome? How could this be? I searched and searched and prayed for

> > God to give me signs to help me. My husband stumbled on this site!!

> > There is no info out there and my doctors think I am nuts to relate

> > this to my implants! But in my heart something told me my implants

> > are making me sick. After reading your stories I have called to get

> > mine out. I am looking at the end of June. I am so scared of surgery.

> > Can someone explain to me the right way to have them out? Thanks

> > jra83 (Renea)

> >

> >

> >

> > __________________________________

> > Discover

> > Get on-the-go sports scores, stock quotes, news and more. Check it

> out!

> > http://discover./mobile.html

>

>

>

__________________________________________________

[Guest guest]

Renea,

It doesn't sound reasonable to expect to do a proper

implant removal in just one hour. A proper removal

will be done in a hospital or day surgery center. NOT

in the doctors' surgical suite! . . .

Tell the doctor you expect him/her to remove your

implants " en bloc " and to use drains following

surgery.

If the doctor gives you any flack about doing it this

way, explain that you want to be sure that any

bacteria around the implants gets removed, and that

the contents of the implant doesn't spill into your

chest cavity.

We have information on this site to take to your

doctor if necessary. If a doctor tells you that you

will be deformed if the capsules are removed, or the

implants not replaced, consider that they are talking

about their own skills. . . find another doctor!

You can look great following surgery . . . see the

photos in our archives!

Hugs and Prayers,

Rogene

[Guest guest]

Dr. Feng is in Cleveland, Ohio

sandy & lt;interart81@... & gt; wrote: Hi, I also have saline and am scheduled for explant in 1 week (scary).I was careful who I chose because I wanted not just any surgeon but asurgeon well experienced in explants. I believe there are 3 in theUS, Dr. Melmed in Dallas (who I am going to), Dr. Kolb in Atlanta, andDr. Feng in Illinois. It was a pretty fast decision for me, I justdecided one day to make the consultation and I flew up to see him,although he usually makes the consultation for l day and the surgeryfor the next. But I wanted to discuss everything with him first. Myhusband, who isn't so supportive of this, told me last night that itstill wasn't too late to change my mind. He can't believe that theyare causing my problems....he said he looked up implants on theinternet and it stated they didn't cause any side effects. I askedhim if the

article was written by the implant manufacturers....buthe's so mainstream, he won't even read alternate opinions. Anyway, Ifly up to Dallas on Sunday and operate on Monday. I wish you luckwith your surgery, if you choose the right doctor (to take out thecapsules as well, this is most important), then it will be fine. Afriend of mine told me that a friend we know took out her implants andwaited 2 yrs and her symptoms didn't change and she put them back in.She said her explant surgery lasted about 20 minutes. I said thatthey probably didn't remove the capsules so that's why she didn't getany better. They said she had the explant surgery with a regular PShere in Mexico (where I live). Sandy> Hi Just wanted to introduce myself. I am Renea 40 years old> I had my saline implants in April 2004. In August 2004

things> started happening to me --My fingers got real painful and swollen.> That would come and go. In October same thing with my foot. The> doctor just gave me ibuprofen and a cortisone shot. Then in November> the same thing happened in my shoulder, another couple of shots!!> By December both of my feet were so swollen and painful I could > hardly walk. Then it spread to my hands, wrist and knee. I was sent> to a Rhuematologist and he diagnosed me with Rhuematiod arthritis.> All my mri and xrays were normal except they showed swelling.> My labs were not in the range for rheumatiod. He put me on prednisone> which does help. Though I know it is bad for me. I was also put on> Methotrexate. It is horrible and I am not going to stay on it. It > doesn't seem to help. Grasping for any and all help I found a woman> who does meridian stress assessment. After her tests, she said she> thought I

did not have true arthritis but, my body is mimiking it.> I have traces of silicon toxicity and something to do with Gulf war> syndrome? How could this be? I searched and searched and prayed for> God to give me signs to help me. My husband stumbled on this site!!> There is no info out there and my doctors think I am nuts to relate> this to my implants! But in my heart something told me my implants> are making me sick. After reading your stories I have called to get> mine out. I am looking at the end of June. I am so scared of surgery.> Can someone explain to me the right way to have them out? Thanks > jra83 (Renea)> > > > __________________________________> Discover > Get on-the-go sports scores, stock quotes, news and more. Check it out! > http://discover./mobile.htmlOpinions expressed are NOT meant to take the place of advice given by licensed health care professionals. Consult your physician or licensed health care professional before commencing any medical treatment. "Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to work for a better world." - Linus ing, two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

[Guest guest]

Hi Renea,

Sorry to hear you are going through this as I did. I had my explant done by Dr. Feng who is in Cleveland, OH... she took the capsules out enbloc. The surgery took roughly 6 hours. Did your ps explain what she was going to do within the hour? Hmmm. Doesn't sound plausible. I know you really like this doctor but if she does not remove the capsule/implants correctly you will have less of a chance for recovery. Just a thought.

Dawn

Renea Ashcraft & lt;jra83@... & gt; wrote: It all sounds scary-I wish you the best-please keep in touchwith updates reguarding your condition. My husband is the onewho found this site. He has been so supportive and caring duringall my pain. I go in 2 weeks for the consult and will ask aboutthe capsule. She said it would take an hour for the explant. Areyou asking for your implants since you paid for them. I wantmine or at least pictures. Are yours under the muscle? I am goingto get hypnotized for the surgery anxiety. I get so nervous but,I see this as a positive sign from God. Good Luck my prayers arewith you. Renea--- sandy <interart81@...> wrote:> Hi, I also have saline and am scheduled for explant in 1 week (scary).> I was careful who I chose because I wanted not just any surgeon but a> surgeon well experienced in explants. I believe there

are 3 in the> US, Dr. Melmed in Dallas (who I am going to), Dr. Kolb in Atlanta, and> Dr. Feng in Illinois. It was a pretty fast decision for me, I just> decided one day to make the consultation and I flew up to see him,> although he usually makes the consultation for l day and the surgery> for the next. But I wanted to discuss everything with him first. My> husband, who isn't so supportive of this, told me last night that it> still wasn't too late to change my mind. He can't believe that they> are causing my problems....he said he looked up implants on the> internet and it stated they didn't cause any side effects. I asked> him if the article was written by the implant manufacturers....but> he's so mainstream, he won't even read alternate opinions. Anyway, I> fly up to Dallas on Sunday and operate on Monday. I wish you luck> with your surgery, if you

choose the right doctor (to take out the> capsules as well, this is most important), then it will be fine. A> friend of mine told me that a friend we know took out her implants and> waited 2 yrs and her symptoms didn't change and she put them back in.> She said her explant surgery lasted about 20 minutes. I said that> they probably didn't remove the capsules so that's why she didn't get> any better. They said she had the explant surgery with a regular PS> here in Mexico (where I live). Sandy> > > > Hi Just wanted to introduce myself. I am Renea 40 years old> > I had my saline implants in April 2004. In August 2004 things> > started happening to me --My fingers got real painful and swollen.> > That would come and go. In October same thing with my foot. The> >

doctor just gave me ibuprofen and a cortisone shot. Then in November> > the same thing happened in my shoulder, another couple of shots!!> > By December both of my feet were so swollen and painful I could > > hardly walk. Then it spread to my hands, wrist and knee. I was sent> > to a Rhuematologist and he diagnosed me with Rhuematiod arthritis.> > All my mri and xrays were normal except they showed swelling.> > My labs were not in the range for rheumatiod. He put me on prednisone> > which does help. Though I know it is bad for me. I was also put on> > Methotrexate. It is horrible and I am not going to stay on it. It > > doesn't seem to help. Grasping for any and all help I found a woman> > who does meridian stress assessment. After her tests, she said she> > thought I did not have true arthritis but, my body is mimiking it.> > I have traces of silicon toxicity and

something to do with Gulf war> > syndrome? How could this be? I searched and searched and prayed for> > God to give me signs to help me. My husband stumbled on this site!!> > There is no info out there and my doctors think I am nuts to relate> > this to my implants! But in my heart something told me my implants> > are making me sick. After reading your stories I have called to get> > mine out. I am looking at the end of June. I am so scared of surgery.> > Can someone explain to me the right way to have them out? Thanks > > jra83 (Renea)> > > > > > > > __________________________________> > Discover > > Get on-the-go sports scores, stock quotes, news and more. Check it> out! > > http://discover./mobile.html> > > __________________________________________________

[Guest guest]

How much did that cost you? The bad thing is I only have a limited

amount of money. I want this done right though. I have a consult in

2 weeks I will find out more.

--- Dawn A <daldre@...> wrote:

>

> Hi Renea,

> Sorry to hear you are going through this as I did. I had my explant done

> by Dr. Feng who is in Cleveland, OH... she took the capsules out enbloc.

> The surgery took roughly 6 hours. Did your ps explain what she was going

> to do within the hour? Hmmm. Doesn't sound plausible. I know you really

> like this doctor but if she does not remove the capsule/implants

> correctly you will have less of a chance for recovery. Just a thought.

> Dawn

> Renea Ashcraft & lt;jra83@... & gt; wrote: It all sounds scary-I

> wish you the best-please keep in touch

> with updates reguarding your condition. My husband is the one

> who found this site. He has been so supportive and caring during

> all my pain. I go in 2 weeks for the consult and will ask about

> the capsule. She said it would take an hour for the explant. Are

> you asking for your implants since you paid for them. I want

> mine or at least pictures. Are yours under the muscle? I am going

> to get hypnotized for the surgery anxiety. I get so nervous but,

> I see this as a positive sign from God. Good Luck my prayers are

> with you. Renea

>

>

> --- sandy <interart81@...> wrote:

> > Hi, I also have saline and am scheduled for explant in 1 week (scary).

> > I was careful who I chose because I wanted not just any surgeon but a

> > surgeon well experienced in explants. I believe there are 3 in the

> > US, Dr. Melmed in Dallas (who I am going to), Dr. Kolb in Atlanta, and

> > Dr. Feng in Illinois. It was a pretty fast decision for me, I just

> > decided one day to make the consultation and I flew up to see him,

> > although he usually makes the consultation for l day and the surgery

> > for the next. But I wanted to discuss everything with him first. My

> > husband, who isn't so supportive of this, told me last night that it

> > still wasn't too late to change my mind. He can't believe that they

> > are causing my problems....he said he looked up implants on the

> > internet and it stated they didn't cause any side effects. I asked

> > him if the article was written by the implant manufacturers....but

> > he's so mainstream, he won't even read alternate opinions. Anyway, I

> > fly up to Dallas on Sunday and operate on Monday. I wish you luck

> > with your surgery, if you choose the right doctor (to take out the

> > capsules as well, this is most important), then it will be fine. A

> > friend of mine told me that a friend we know took out her implants and

> > waited 2 yrs and her symptoms didn't change and she put them back in.

> > She said her explant surgery lasted about 20 minutes. I said that

> > they probably didn't remove the capsules so that's why she didn't get

> > any better. They said she had the explant surgery with a regular PS

> > here in Mexico (where I live). Sandy

> >

> >

> > > Hi Just wanted to introduce myself. I am Renea 40 years old

> > > I had my saline implants in April 2004. In August 2004 things

> > > started happening to me --My fingers got real painful and swollen.

> > > That would come and go. In October same thing with my foot. The

> > > doctor just gave me ibuprofen and a cortisone shot. Then in November

> > > the same thing happened in my shoulder, another couple of shots!!

> > > By December both of my feet were so swollen and painful I could

> > > hardly walk. Then it spread to my hands, wrist and knee. I was sent

> > > to a Rhuematologist and he diagnosed me with Rhuematiod arthritis.

> > > All my mri and xrays were normal except they showed swelling.

> > > My labs were not in the range for rheumatiod. He put me on

> prednisone

> > > which does help. Though I know it is bad for me. I was also put on

> > > Methotrexate. It is horrible and I am not going to stay on it. It

> > > doesn't seem to help. Grasping for any and all help I found a woman

> > > who does meridian stress assessment. After her tests, she said she

> > > thought I did not have true arthritis but, my body is mimiking it.

> > > I have traces of silicon toxicity and something to do with Gulf war

> > > syndrome? How could this be? I searched and searched and prayed for

> > > God to give me signs to help me. My husband stumbled on this site!!

> > > There is no info out there and my doctors think I am nuts to relate

> > > this to my implants! But in my heart something told me my implants

> > > are making me sick. After reading your stories I have called to get

> > > mine out. I am looking at the end of June. I am so scared of

> surgery.

> > > Can someone explain to me the right way to have them out? Thanks

> > > jra83 (Renea)

> > >

> > >

> > >

> > > __________________________________

> > > Discover

> > > Get on-the-go sports scores, stock quotes, news and more. Check it

> > out!

> > > http://discover./mobile.html

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

Renea,

It sounds like you have a truly caring and compassionate husband--

Lucky you! Hang on to that one! I've heard so many sad stories of

women not only going through the physical pain of implant illness,

but also the mental and emotional pain of living with men who are

lacking in compassion and are entirely too self centered to be of

any help whatsoever in their time of need. A husband's support can

be vital to healing, just like our detoxing efforts!

I wanted to mention that you should be careful to question your

explanting doctor about the procedure she/he intends to use. An

hour long explant could be simply popping the implant out and sewing

you back up, which is NOT appropriate if you are sick. Most

implanting surgeons offer to do this for you, (mine offered to do

that for me), but believe me, they are not doing you any favors.

A proper explant needs to include not only implant removal, but

capsule removal---totally---as well. Again, you need to be careful

to discuss the part about having a total capsulectomy, not just a

partial one. All of the capsule needs to come out for having the

best chance at recovery. Otherwise, if pieces are left in your

body, and your immune system continues to fight against those

pieces, (which can contain things your body does not want around),

you can remain ill. Many doctors are oblivious to this, sadly.

For this reason, we have found that using the implanting surgeon for

explant is generally not a good idea. Occasionally it works out--I

hope it does for you, if you have a good relationship with this

doctor, and she will take into consideration all of your requests

and understands why you are adamant about proper removal. But for

the most part, we have found that implanting doctors don't believe

that implants cause disease, so they are careless about getting

everything out.

Let us know how your consult goes....we can walk you through any

questions you might have. For now, I just wanted to caution you

about getting it done right...and that means a total capsulectomy,

and with drains.

Take care,

Patty

> > > Hi Just wanted to introduce myself. I am Renea 40 years old

> > > I had my saline implants in April 2004. In August 2004 things

> > > started happening to me --My fingers got real painful and

swollen.

> > > That would come and go. In October same thing with my foot. The

> > > doctor just gave me ibuprofen and a cortisone shot. Then in

November

> > > the same thing happened in my shoulder, another couple of

shots!!

> > > By December both of my feet were so swollen and painful I

could

> > > hardly walk. Then it spread to my hands, wrist and knee. I was

sent

> > > to a Rhuematologist and he diagnosed me with Rhuematiod

arthritis.

> > > All my mri and xrays were normal except they showed swelling.

> > > My labs were not in the range for rheumatiod. He put me on

prednisone

> > > which does help. Though I know it is bad for me. I was also

put on

> > > Methotrexate. It is horrible and I am not going to stay on it.

It

> > > doesn't seem to help. Grasping for any and all help I found a

woman

> > > who does meridian stress assessment. After her tests, she said

she

> > > thought I did not have true arthritis but, my body is mimiking

it.

> > > I have traces of silicon toxicity and something to do with

Gulf war

> > > syndrome? How could this be? I searched and searched and

prayed for

> > > God to give me signs to help me. My husband stumbled on this

site!!

> > > There is no info out there and my doctors think I am nuts to

relate

> > > this to my implants! But in my heart something told me my

implants

> > > are making me sick. After reading your stories I have called

to get

> > > mine out. I am looking at the end of June. I am so scared of

surgery.

> > > Can someone explain to me the right way to have them out?

Thanks

> > > jra83 (Renea)

> > >

> > >

> > >

> > > __________________________________

> > > Discover

> > > Get on-the-go sports scores, stock quotes, news and more.

Check it

> > out!

> > > http://discover./mobile.html

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

Renea,

I don't recall exactly how much it was for explant only... I think around 6k... but the money was not an issue because I wanted it done right.. no mistakes.. no redo's.. done. If the capsule is not properly removed and you have to go back in for a second operation to remove it.. it will probably cost you more than 6k between both operations... plus the stress of two operations.

Dawn

Renea Ashcraft & lt;jra83@... & gt; wrote: How much did that cost you? The bad thing is I only have a limitedamount of money. I want this done right though. I have a consult in2 weeks I will find out more.--- Dawn A <daldre@...> wrote:> > Hi Renea,> Sorry to hear you are going through this as I did. I had my explant done> by Dr. Feng who is in Cleveland, OH... she took the capsules out enbloc.> The surgery took roughly 6 hours. Did your ps explain what she was going> to do within the hour? Hmmm. Doesn't sound plausible. I know you really> like this doctor but if she does not remove the capsule/implants> correctly you will have less of a chance for recovery. Just a thought.> Dawn> Renea Ashcraft & lt;jra83@... & gt; wrote: It all sounds scary-I> wish you the best-please keep in touch> with

updates reguarding your condition. My husband is the one> who found this site. He has been so supportive and caring during> all my pain. I go in 2 weeks for the consult and will ask about> the capsule. She said it would take an hour for the explant. Are> you asking for your implants since you paid for them. I want> mine or at least pictures. Are yours under the muscle? I am going> to get hypnotized for the surgery anxiety. I get so nervous but,> I see this as a positive sign from God. Good Luck my prayers are> with you. Renea> > > --- sandy <interart81@...> wrote:> > Hi, I also have saline and am scheduled for explant in 1 week (scary).> > I was careful who I chose because I wanted not just any surgeon but a> > surgeon well experienced in explants. I believe there are 3 in the> > US, Dr. Melmed in Dallas (who I am going to), Dr. Kolb in

Atlanta, and> > Dr. Feng in Illinois. It was a pretty fast decision for me, I just> > decided one day to make the consultation and I flew up to see him,> > although he usually makes the consultation for l day and the surgery> > for the next. But I wanted to discuss everything with him first. My> > husband, who isn't so supportive of this, told me last night that it> > still wasn't too late to change my mind. He can't believe that they> > are causing my problems....he said he looked up implants on the> > internet and it stated they didn't cause any side effects. I asked> > him if the article was written by the implant manufacturers....but> > he's so mainstream, he won't even read alternate opinions. Anyway, I> > fly up to Dallas on Sunday and operate on Monday. I wish you luck> > with your surgery, if you choose the right

doctor (to take out the> > capsules as well, this is most important), then it will be fine. A> > friend of mine told me that a friend we know took out her implants and> > waited 2 yrs and her symptoms didn't change and she put them back in.> > She said her explant surgery lasted about 20 minutes. I said that> > they probably didn't remove the capsules so that's why she didn't get> > any better. They said she had the explant surgery with a regular PS> > here in Mexico (where I live). Sandy> > > > > > > Hi Just wanted to introduce myself. I am Renea 40 years old> > > I had my saline implants in April 2004. In August 2004 things> > > started happening to me --My fingers got real painful and swollen.> > > That would come and go.

In October same thing with my foot. The> > > doctor just gave me ibuprofen and a cortisone shot. Then in November> > > the same thing happened in my shoulder, another couple of shots!!> > > By December both of my feet were so swollen and painful I could > > > hardly walk. Then it spread to my hands, wrist and knee. I was sent> > > to a Rhuematologist and he diagnosed me with Rhuematiod arthritis.> > > All my mri and xrays were normal except they showed swelling.> > > My labs were not in the range for rheumatiod. He put me on> prednisone> > > which does help. Though I know it is bad for me. I was also put on> > > Methotrexate. It is horrible and I am not going to stay on it. It > > > doesn't seem to help. Grasping for any and all help I found a woman> > > who does meridian stress assessment. After her tests, she said she> >

> thought I did not have true arthritis but, my body is mimiking it.> > > I have traces of silicon toxicity and something to do with Gulf war> > > syndrome? How could this be? I searched and searched and prayed for> > > God to give me signs to help me. My husband stumbled on this site!!> > > There is no info out there and my doctors think I am nuts to relate> > > this to my implants! But in my heart something told me my implants> > > are making me sick. After reading your stories I have called to get> > > mine out. I am looking at the end of June. I am so scared of> surgery.> > > Can someone explain to me the right way to have them out? Thanks > > > jra83 (Renea)> > > > > > > > > > > >

__________________________________> > > Discover > > > Get on-the-go sports scores, stock quotes, news and more. Check it> > out! > > > http://discover./mobile.html> > > > > > > > __________________________________________________>

[Guest guest]

Sandy

Hi. I am so excited for you that your surgery is almost here. I

don't think you will ever regret having them out. Many people here

have had less than supportive husbands initially. But most find

their husbands are believers once the implants are gone and their

wives are feeling better! Most women on this site definitely get

better so you are probably right about your friend. Dr. Melmed is

fantastic! By the way, Dr. Feng is in Cleveland Ohio area. There

are definitely other good plastic surgeons and when we hear of those

who do a good job we try to add them to our list. Take care

kathy

--- In , " sandy " <interart81@y...>

wrote:

> Hi, I also have saline and am scheduled for explant in 1 week

(scary).

> I was careful who I chose because I wanted not just any surgeon

but a

> surgeon well experienced in explants. I believe there are 3 in the

> US, Dr. Melmed in Dallas (who I am going to), Dr. Kolb in Atlanta,

and

> Dr. Feng in Illinois. It was a pretty fast decision for me, I just

> decided one day to make the consultation and I flew up to see him,

> although he usually makes the consultation for l day and the

surgery

> for the next. But I wanted to discuss everything with him first.

My

> husband, who isn't so supportive of this, told me last night that

it

> still wasn't too late to change my mind. He can't believe that

they

> are causing my problems....he said he looked up implants on the

> internet and it stated they didn't cause any side effects. I asked

> him if the article was written by the implant manufacturers....but

> he's so mainstream, he won't even read alternate opinions.

Anyway, I

> fly up to Dallas on Sunday and operate on Monday. I wish you luck

> with your surgery, if you choose the right doctor (to take out the

> capsules as well, this is most important), then it will be fine. A

> friend of mine told me that a friend we know took out her implants

and

> waited 2 yrs and her symptoms didn't change and she put them back

in.

> She said her explant surgery lasted about 20 minutes. I said that

> they probably didn't remove the capsules so that's why she didn't

get

> any better. They said she had the explant surgery with a regular

PS

> here in Mexico (where I live). Sandy

>

> --- In , Renea Ashcraft <jra83@y...>

wrote:

> > Hi Just wanted to introduce myself. I am Renea 40 years old

> > I had my saline implants in April 2004. In August 2004 things

> > started happening to me --My fingers got real painful and

swollen.

> > That would come and go. In October same thing with my foot. The

> > doctor just gave me ibuprofen and a cortisone shot. Then in

November

> > the same thing happened in my shoulder, another couple of shots!!

> > By December both of my feet were so swollen and painful I could

> > hardly walk. Then it spread to my hands, wrist and knee. I was

sent

> > to a Rhuematologist and he diagnosed me with Rhuematiod

arthritis.

> > All my mri and xrays were normal except they showed swelling.

> > My labs were not in the range for rheumatiod. He put me on

prednisone

> > which does help. Though I know it is bad for me. I was also put

on

> > Methotrexate. It is horrible and I am not going to stay on it.

It

> > doesn't seem to help. Grasping for any and all help I found a

woman

> > who does meridian stress assessment. After her tests, she said

she

> > thought I did not have true arthritis but, my body is mimiking

it.

> > I have traces of silicon toxicity and something to do with Gulf

war

> > syndrome? How could this be? I searched and searched and prayed

for

> > God to give me signs to help me. My husband stumbled on this

site!!

> > There is no info out there and my doctors think I am nuts to

relate

> > this to my implants! But in my heart something told me my

implants

> > are making me sick. After reading your stories I have called to

get

> > mine out. I am looking at the end of June. I am so scared of

surgery.

> > Can someone explain to me the right way to have them out?

Thanks

> > jra83 (Renea)

> >

> >

> >

> > __________________________________

> > Discover

> > Get on-the-go sports scores, stock quotes, news and more. Check

it out!

> > http://discover./mobile.html

[Guest guest]

Renea

I am so glad that your husband is so supportive. It sure makes you

have alot more confidence in what your doing when you have your

husband's support. My husband was too. He is such a wonderful man!

Today is our 4th wedding anniversary. My husband and I both lost

our first spouses around six years ago. I felt like my life was

over. We feel truly blessed to have found each other and to have a

chance at love and happiness again!! Also, right before we got

married is when I started getting really really sick from my

implants. My grief probably really accelerated the slow descent

from health I had been undergoing for the last eleven years. Like

many others, I thought I was dying and probably was and I seemed to

be developing scleroderma symptoms--an often fatal autoimmune

disease. Today I am so much better. I still only really have alot

of muscle twitching. Yesterday I just took my dog for a mile walk

and played badminton for 2 hours. I have my life back and it is

wonderful.

Hugs

kathy

> > > Hi Just wanted to introduce myself. I am Renea 40 years old

> > > I had my saline implants in April 2004. In August 2004 things

> > > started happening to me --My fingers got real painful and

swollen.

> > > That would come and go. In October same thing with my foot. The

> > > doctor just gave me ibuprofen and a cortisone shot. Then in

November

> > > the same thing happened in my shoulder, another couple of

shots!!

> > > By December both of my feet were so swollen and painful I

could

> > > hardly walk. Then it spread to my hands, wrist and knee. I was

sent

> > > to a Rhuematologist and he diagnosed me with Rhuematiod

arthritis.

> > > All my mri and xrays were normal except they showed swelling.

> > > My labs were not in the range for rheumatiod. He put me on

prednisone

> > > which does help. Though I know it is bad for me. I was also

put on

> > > Methotrexate. It is horrible and I am not going to stay on it.

It

> > > doesn't seem to help. Grasping for any and all help I found a

woman

> > > who does meridian stress assessment. After her tests, she said

she

> > > thought I did not have true arthritis but, my body is mimiking

it.

> > > I have traces of silicon toxicity and something to do with

Gulf war

> > > syndrome? How could this be? I searched and searched and

prayed for

> > > God to give me signs to help me. My husband stumbled on this

site!!

> > > There is no info out there and my doctors think I am nuts to

relate

> > > this to my implants! But in my heart something told me my

implants

> > > are making me sick. After reading your stories I have called

to get

> > > mine out. I am looking at the end of June. I am so scared of

surgery.

> > > Can someone explain to me the right way to have them out?

Thanks

> > > jra83 (Renea)

> > >

> > >

> > >

> > > __________________________________

> > > Discover

> > > Get on-the-go sports scores, stock quotes, news and more.

Check it

> > out!

> > > http://discover./mobile.html

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

Rogene

Dr.Feng does her explants in her surgical suite. She has a very

competent staff and uses an anesthiosologist. Also, my surgery only

took about an hour. I had no complications and everything seemed to

go well. I agree that you need to be firm about the en bloc and I

think that she try to get it in writing from the doctor---a contract

stating the type of surgery to be performed and the cost. If he

won't put it in writing I would be concerned. It is better to have

it made thoroughly clear upfront. Also, some doctors say that the

capsule was so thin they couldn't remove it or didnt need to. So it

might be best to tell the ps upfront that no matter what the

situation, he should remove the capsule or as much of it as he can.

Hugs

Kathy

> Renea,

>

> It doesn't sound reasonable to expect to do a proper

> implant removal in just one hour. A proper removal

> will be done in a hospital or day surgery center. NOT

> in the doctors' surgical suite! . . .

>

> Tell the doctor you expect him/her to remove your

> implants " en bloc " and to use drains following

> surgery.

>

> If the doctor gives you any flack about doing it this

> way, explain that you want to be sure that any

> bacteria around the implants gets removed, and that

> the contents of the implant doesn't spill into your

> chest cavity.

>

> We have information on this site to take to your

> doctor if necessary. If a doctor tells you that you

> will be deformed if the capsules are removed, or the

> implants not replaced, consider that they are talking

> about their own skills. . . find another doctor!

>

> You can look great following surgery . . . see the

> photos in our archives!

>

> Hugs and Prayers,

>

> Rogene

[Guest guest]

Kathy, I am glad to hear you are doing better. I hope and

pray that I do not have to live with this pain for the

rest of my life. Some days it is so hard to walk, tie my

shoes or button my shirt. I feel like I am 70 instead of 40.

I have been very depressed because of all the pain. Thanks

for your support. Renea

--- mikat828 <mikat828@...> wrote:

>

> Renea

> I am so glad that your husband is so supportive. It sure makes you

> have alot more confidence in what your doing when you have your

> husband's support. My husband was too. He is such a wonderful man!

> Today is our 4th wedding anniversary. My husband and I both lost

> our first spouses around six years ago. I felt like my life was

> over. We feel truly blessed to have found each other and to have a

> chance at love and happiness again!! Also, right before we got

> married is when I started getting really really sick from my

> implants. My grief probably really accelerated the slow descent

> from health I had been undergoing for the last eleven years. Like

> many others, I thought I was dying and probably was and I seemed to

> be developing scleroderma symptoms--an often fatal autoimmune

> disease. Today I am so much better. I still only really have alot

> of muscle twitching. Yesterday I just took my dog for a mile walk

> and played badminton for 2 hours. I have my life back and it is

> wonderful.

> Hugs

> kathy

>

>

>

>

>

>

> > > > Hi Just wanted to introduce myself. I am Renea 40 years old

> > > > I had my saline implants in April 2004. In August 2004 things

> > > > started happening to me --My fingers got real painful and

> swollen.

> > > > That would come and go. In October same thing with my foot. The

> > > > doctor just gave me ibuprofen and a cortisone shot. Then in

> November

> > > > the same thing happened in my shoulder, another couple of

> shots!!

> > > > By December both of my feet were so swollen and painful I

> could

> > > > hardly walk. Then it spread to my hands, wrist and knee. I was

> sent

> > > > to a Rhuematologist and he diagnosed me with Rhuematiod

> arthritis.

> > > > All my mri and xrays were normal except they showed swelling.

> > > > My labs were not in the range for rheumatiod. He put me on

> prednisone

> > > > which does help. Though I know it is bad for me. I was also

> put on

> > > > Methotrexate. It is horrible and I am not going to stay on it.

> It

> > > > doesn't seem to help. Grasping for any and all help I found a

> woman

> > > > who does meridian stress assessment. After her tests, she said

> she

> > > > thought I did not have true arthritis but, my body is mimiking

> it.

> > > > I have traces of silicon toxicity and something to do with

> Gulf war

> > > > syndrome? How could this be? I searched and searched and

> prayed for

> > > > God to give me signs to help me. My husband stumbled on this

> site!!

> > > > There is no info out there and my doctors think I am nuts to

> relate

> > > > this to my implants! But in my heart something told me my

> implants

> > > > are making me sick. After reading your stories I have called

> to get

> > > > mine out. I am looking at the end of June. I am so scared of

> surgery.

> > > > Can someone explain to me the right way to have them out?

> Thanks

> > > > jra83 (Renea)

> > > >

> > > >

> > > >

> > > > __________________________________

> > > > Discover

> > > > Get on-the-go sports scores, stock quotes, news and more.

> Check it

> > > out!

> > > > http://discover./mobile.html

> > >

> > >

> > >

> >

> > __________________________________________________

> >

[Guest guest]

Kathy,

I'm happy for you that things went well with Dr. Feng.

I know she's an excellent doctor!

I am amazed that she could do the surgery so quickly

though! Were your implant above the muscle?

Hugs,

Rogene

[Guest guest]

My husband has just started taking LDN, which I thought was to replace

the Copaxone, but he continues to take that and many other meds. What

is the usual?

He was diagnosed in 1970. He currently has difficulty walking, uses a

cane. He has a host of other symptoms but continues to work in an

office full-time.

Thanks for your time.

[Guest guest]

Copaxone is the only one of the Crab medications that works OK while taking

LDN. I don't know what the other drugs are in order to comments on them.

Personally my husband has done very well on LDN. He is on a diet with very

low fat, no dairy and no wheat. He also takes a lot of supplements. If you

would like a list of those supplements please let me know. Also there are

about 6 attachments of Protocols that you could read through to see what

works best while taking LDN for MS.

Take care

Aletha

[low dose naltrexone] Just joined

> My husband has just started taking LDN, which I thought was to replace

> the Copaxone, but he continues to take that and many other meds. What

> is the usual?

>

> He was diagnosed in 1970. He currently has difficulty walking, uses a

> cane. He has a host of other symptoms but continues to work in an

> office full-time.

>

> Thanks for your time.

>

>

>

>

>

>

>

[Guest guest]

This list is for those that are currently doing or are interested in

learning more about the protocol. You can learn more about

at www.neuroimmunedr.com and www.nids.net. You're probably in the

right place if you want to tell us more about your child.

The protocol is a specific treatment.

Cheryl

On Sep 27, 2007, at 4:01 PM, luv_m_y_brats wrote:

> Hi, I have just joined here. I am not sure if I'm in the right place.

> Is this a group for anyone whos child has 1 of these disorders or only

> those following a certian treatmeant. I didn't get what this meant on

> the front page ( following the protocol )

>

>

>